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5 Types of Medication Used to Treat Difficult Dementia Behaviors

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medication for Alzheimer's behaviorOne of the greatest challenges, when it comes to Alzheimer’s disease and other dementias, is coping with difficult behaviors.

These are symptoms beyond the chronic memory/thinking problems that are the hallmark of dementia. They include problems like:

  • Delusions, paranoid behaviors, or irrational beliefs
  • Agitation (getting “amped up” or “revved up”) and/or aggressive behavior
  • Restless pacing or wandering
  • Disinhibited behaviors, which means saying or doing socially inappropriate things
  • Sleep disturbances

These are technically called “neuropsychiatric” symptoms, but regular people might refer to them as “acting crazy” symptoms. Or even “crazy-making” symptoms, as they do tend to drive family caregivers a bit nuts.

Because these behaviors are difficult and stressful for caregivers — and often for the person with dementia — people often ask if any medications can help.

The short answer is “Maybe.”

A better answer is “Maybe, but there will be side-effects and other significant risks to consider, and we need to first attempt non-drug ways to manage these behaviors.”

In fact, no medication is FDA-approved for the treatment of these types of behaviors in Alzheimer’s disease or other forms of dementia. (For more on the drugs that are FDA-approved to treat the cognitive symptoms of dementia, see here: 4 Medications to Treat Alzheimer’s & Other Dementias: How They Work & FAQs.)

But it is VERY common for medications — especially antipsychotics — to be prescribed “off-label” for this purpose.

This is sometimes described as a “chemical restraint” (as opposed to tying people to a chair, which is a “physical restraint”). In many cases, antipsychotics and other tranquilizing medications can certainly calm the behaviors. But they can have significant side-effects and risks, which are often not explained to families.

Worst of all, they are often prescribed prematurely, or in excessive doses, without caregivers and doctors first putting in some time to figure out what is triggering the behavior, and what non-drug approaches might help.

For this reason, in 2013 the American Geriatrics Society made the following recommendation as part of its Choosing Wisely campaign: “Don’t use antipsychotics as first choice to treat behavioral and psychological symptoms of dementia.”

You may now be wondering what should be the first choice. This depends on the situation, but generally, the first choice to treat difficult behaviors is NOT medication. (A possible exception: geriatricians do often consider medication to treat pain or constipation, as these are common triggers for difficult behavior.)

Instead, medications should be used after non-drug management approaches have been tried, or at least in combination with non-drug approaches. (Learn about these here: 7 Steps to Managing Difficult Dementia Behaviors Safely & Without Medications.)

Of course in certain situations, medication should be considered. If your family member has Alzheimer’s or another dementia, I want you to be equipped to work with the doctors on sensible, judicious use of medication to manage difficult behaviors.

In this post, I’ll review the most common types of medications used to treat difficult behaviors in dementia. I’ll also explain the approach that I take with these medications.

5 Types of Medication For Difficult Behaviors in Dementia

Most medications used to treat difficult behaviors fall into one of the following categories:

1. Antipsychotics. These are medications originally developed to treat schizophrenia and other illnesses featuring psychosis symptoms. (For more on psychosis, which is common in late-life, see 6 Causes of Paranoia in Aging & What to Do.)

Commonly used drugs: Antipsychotics often used in older adults include:

  • Risperidone (brand name Risperdal)
  • Quetiapine (brand name Seroquel)
  • Olanzapine (brand name Zyprexa)
  • Haloperidol (brand name Haldol)
  • For a longer list of antipsychotics drugs, see this NIH page.

Usual effects: Most antipsychotics are sedating, and will calm agitation or aggression through these sedating effects. Antipsychotics may also reduce true psychosis symptoms, such as delusions, hallucinations, or paranoid beliefs, but it’s rare for them to completely correct these in people with dementia.

Risks of use: The risks of antipsychotics are related to how high the dose is, and include:

  • Decreased cognitive function, and possible acceleration of cognitive decline
  • Increased risk of falls
  • Increased risk of stroke and of death; this has been estimated as an increased absolute risk of 1-4%
  • A risk of side-effects known as “extrapyramidal symptoms,” which include stiffness and tremor similar to Parkinson’s disease, as well as a variety of other muscle coordination problems
  • People with Lewy-body dementia or a history of Parkinsonism may be especially sensitive to antipsychotic side-effects; in such people, quetiapine is considered the safest choice

Evidence of clinical efficacy: Clinical trials often find a small improvement in symptoms. However, this is offset by frequent side-effects. Studies have also repeatedly found that using antipsychotics in older people with dementia is associated with a higher risk of stroke and of death.

2. Benzodiazepines. This is a category of medication that relaxes people fairly quickly. So these drugs are used for anxiety, for panic attacks, for sedation, and to treat insomnia. They can easily become habit-forming.

Commonly used drugs: In older adults these include:

  • Lorazepam (brand name Ativan)
  • Temazepam (brand name Restoril)
  • Diazepam (brand name Valium)
  • Alprazolam (brand name Xanax)
  • Clonazepam (brand name Klonopin)

Usual effects: In the brain, benzodiazepines act similarly to alcohol, and they usually cause relaxation and sedation. Benzodiazepines vary in how long they last in the body: alprazolam is considered short-acting whereas diazepam is very long-acting.

Risks of use: A major risk of these medications is that in people of all ages, they can easily cause both physical and psychological dependence. Additional risks that get worse in older adults include:

  • Increased risk of falls
  • Paradoxical agitation (some older adults become disinhibited or otherwise become more restless when given these drugs)
  • Increased confusion
  • Causing or worsening delirium
  • Possible acceleration of cognitive decline

In older adults who take benzodiazepines regularly, there is also a risk of worsening dementia symptoms when the drug is reduced or tapered entirely off. This is because people can experience increased anxiety plus discomfort due to physical withdrawal, and this often worsens their thinking and behavior.

Stopping benzodiazepines suddenly can provoke life-threatening withdrawal symptoms, so medical supervision is mandatory when reducing this type of medication. (See How You Can Help Someone Stop Ativan for more information.)

Evidence of clinical efficacy: A recent review of clinical research concluded there is “limited evidence for clinical efficacy.” Although these drugs do have a noticeable effect when they are used, it’s not clear that they overall improve agitation and difficult behaviors in most people. It is also not clear that they work better than antipsychotics, for longer-term management of behavior problems.

3. Mood-stabilizers. These include medications otherwise used for seizures. They generally reduce the “excitability” of brain cells.

Commonly used drugs: Valproic acid (brand name Depakote) is the most commonly used medication of this type, in older adults with dementia. It is available in short- and long-acting formulations.

Usual effects: The effect varies depending on the dose and the individual. It can be sedating.

Risks of use: Valproic acid requires periodic monitoring of blood levels. Even when the blood level is considered within acceptable range, side-effects in older adults are common and include:

  • Confusion or worsened thinking
  • Dizziness
  • Difficulty walking or balancing
  • Tremor and development of other Parkinsonism symptoms
  • Gastrointestinal symptoms including nausea, vomiting, and/or diarrhea

Evidence of clinical efficacy: A review of randomized trials of valproate for agitation in dementia found no evidence of clinical efficacy, and described the rate of adverse effects as “unacceptable.” Despite this, some geriatric psychiatrists and other experts feel that valproate works well to improve behavior in certain people with dementia.

4. Anti-depressants. Many of these have anti-anxiety benefits. However, they take weeks or even months to reach their full effect on depression or anxiety symptoms.

Commonly used drugs: Antidepressants often used in older people with dementia include:

  • Selective serotonin reuptake inhibitor (SSRI) antidepressants:
    • Citalopram, escitalopram, and sertraline (brand names Celexa, Lexapro, and Zoloft, respectively) are often used
    • Paroxetine (brand name Paxil) is another often-used SSRI, but as it is much more anticholinergic than the other SSRIs, geriatricians would avoid this medication in a person with dementia
  • Mirtazapine (brand name Remeron) is an antidepressant that can increase appetite and sometimes increases sleepiness when given at bedtime
  • Trazodone (brand name Desyrel) is a weak antidepressant that is sedating and is often used at bedtime to help improve sleep

Usual effects: The effects of these medications on agitation is variable. SSRIs may help some individuals, but it usually takes weeks or longer to see an effect. For some people, a sedating antidepressant at bedtime can improve sleep and this may reduce daytime irritability.

Risks of use: The anti-depressants listed above are generally “well-tolerated” by older adults, especially when started at low doses and with slow increases as needed. Risks and side-effects include:

  • Nausea and gastrointestinal distress, especially when first starting or increasing doses (SSRIs)
  • SSRIs may be activating in some people, which can worsen agitation or insomnia
  • Citalopram (in doses higher than 20mg/day) can increase the risk of sudden cardiac arrest due to arrhythmia
  • An increased risk of falls, especially with the more sedating antidepressants

Evidence of clinical efficacy: A 2014 randomized trial found that citalopram provided a modest improvement in neuropsychiatric symptoms; however the dose used was 30mg/day, which has since been discouraged by the FDA. Otherwise, clinical studies suggest that antidepressants are not very effective for reducing agitation.

5. Dementia drugs. These are the drugs FDA-approved to treat the memory and thinking problems associated with Alzheimer’s disease. In some patients they seem to help with certain neuropsychiatric symptoms. For more on the names of these drugs and how they work, see 4 Medications to Treat Alzheimer’s & Other Dementias.

Note: I am not including medications to manage dementia-related sleep disturbances in this post. You can learn more about those here: How to Manage Sleep Problems in Dementia.

Practical tips on medications to manage difficult behaviors in dementia

You may be now wondering just how doctors are supposed to manage medications for difficult dementia behaviors.

Here are the key points that I usually share with families:

  • Before resorting to medication: it’s essential to try to identify what is triggering/worsening the behavior, and it’s important to try non-drug approaches, including exercise.
    • Be sure to consider treating possible pain or constipation, as these are easily overlooked in people with dementia. Geriatricians often try scheduling acetaminophen 2-3 times daily, since people with dementia may not be able to articulate their pain. We also titrate laxatives to aim for a soft bowel movement every 1-2 days.
  • No type of medication has been clinically shown to improve behavior for most people with dementia. If you try medication for this purpose, you should be prepared to do some trial-and-error, and it’s essential to carefully monitor how well the medication is working and what side-effects may be happening.
  • Antipsychotics and benzodiazepines work fairly quickly, but most of the time they are working through sedation and chemical restraint. They tend to cloud thinking further. It is important to use the lowest possible dose of these medications.
  • Benzodiazepines probably increase fall risk more than antipsychotics do, and are habit forming. They are also less likely to help with hallucinations, delusions, and paranoias. For these reasons, if a faster-acting medication is needed, geriatricians usually prefer antipsychotics to benzodiazepines.
  • Antidepressants take a while to work, but are generally well-tolerated. Geriatricians often try escitalopram or citalopram in people with dementia.
  • It is usually worth trying a dementia drug (such as a cholinesterase inhibitor or memantine) if the person is not already on these medications, as these drugs also tend to be well tolerated.

I admit that although studies find that non-drug methods are effective in improving dementia behaviors, it’s often challenging to implement them.

For people with dementia living at home, family caregivers or paid helpers often have limited time and energy to learn and practice behavior management techniques. Despite the risks of antipsychotics, family members are often anxious to get some relief as soon as possible.

As for residential facilities for people with Alzheimer’s and other dementias, they vary in how well their staff are trained in non-drug approaches.

What you can do about medications and difficult dementia behaviors

If your relative with dementia is not yet taking medications for behaviors, consider these tips:

  • Start keeping a journal and learn to identify triggers of difficult behaviors. You will need to observe the person carefully. Your journaling will come in handy later if you start medications, as this will help you monitor for benefit and side-effects.
  • Consider the possibility of depression. Consider a trial of escitalopram or a related antidepressant, but realize any effect will take weeks to appear.
  • If the person is often very agitated, aggressive, or paranoid, or if otherwise the behavioral symptoms are causing significant distress to the older person or to caregivers, it’s often reasonable to try an antipsychotic.
    • Be sure to discuss the increased risk of stroke and death with the doctor and among family members. This can be a reasonable risk to accept, but it’s essential to be informed before proceeding.
    • It’s best to start with the lowest dose possible.
    • If there have been visual hallucinations or other signs of possible Lewy-Body dementia, quetiapine is usually the safest first choice.
  • For all medications for dementia behaviors:
    • Monitor carefully for evidence of improvement and for signs of side-effects.
    • Doses should be increased a little bit at a time.
    • Especially for antipsychotics, the goal is to find the minimum necessary dose to keep behavior manageable.

If your relative with dementia is currently taking medications for behaviors, then you will have to consider at least the following two issues.

One is whether the behavior issues currently seem manageable or not. If behavior is still often very difficult, then it’s important to look into triggers and other behavioral management approaches.

Ongoing agitation or difficult behaviors may also be a sign that the medication isn’t effective for your relative. So it may also be reasonable to consider a change in medication. The best is to work closely with a doctor AND a dementia behavior expert; some social workers and geriatric care managers are very good with dementia behaviors.

The other issue is to make sure you are aware of any risks or side-effects that the current medications may be causing.

The main side-effects I see people with dementia experience are excess drowsiness, excess confusion, and falls. These are usually due to high doses of antipsychotics and/or benzodiazepines. In such cases, it’s often possible to at least reduce the dosages somewhat. Addressing any other anticholinergic or brain-dampening medications can also help.

Now should you aim to get your relative completely off antipsychotics, in order to reduce mortality risk, improve alertness and thinking, and to reduce fall risk?

I have found that sometimes tapering people completely off antipsychotics is possible, but it can be a labor-intensive process. Furthermore, studies find that a certain number of people with dementia “relapse” after antipsychotics have been discontinued. Another very interesting 2016 study of antipsychotic review in nursing homes found that stopping antipsychotics tended to make behavior worse unless the nursing home also implemented “social interventions.”

In other words, attempting to completely stop antipsychotic medications involves effort, may be followed by worse behavior, and is less likely to succeed if you cannot concurrently provide an increase in beneficial social contact or exercise. It is certainly worth considering, but in people who are taking more than the starter dose of antipsychotic, it can be challenging.

No easy solutions but improvement IS usually possible

As many of you know, behavior problems are difficult in dementia in large part because there is usually no easy way to fix them.

Many — probably too many — older adults with Alzheimer’s and other dementias are being medicated for their behavior problems.

If your family is struggling with behavior problems, I know that reading this article will not quickly solve them.

But I hope this information will enable you to make more informed decisions. This way you’ll help ensure that any medications are used thoughtfully, in the lowest doses necessary, and in combination with non-drug dementia behavior management approaches.

To learn about non-drug management approaches, I recommend this article: 7 Steps to Managing Difficult Dementia Behaviors (Safely & Without Medications)

And if you are looking for a memory care facility, try to find out how many of their residents are being medicated for behavior. For people with Alzheimer’s and other dementias, it’s best to be cared for by people who don’t turn first to chemical restraints such as antipsychotics and benzodiazepines.

This article was first published in 2016, and was last updated by Dr. K in May 2022. 

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Comments

  1. Excellent article, Dr. Kernisan. Thank you for sharing your wisdom on medications used to treat behavioural challenges in dementia. I like how you emphasize medications should not be the first line of defense. I see medications being prescribed too quickly, especially in nursing homes. They have their place, but only as a last resort. Assessing for delirium and depression are also important factors. Thanks again.

    Reply

    • Glad you found this useful. Yes, nursing homes can be challenging because the staff are often overworked. Providing non-drug dementia care requires investment in training staff and supporting them.

      Reply

      • Very interesting article with also finite suggestions; I am currently writing a book for Consulfant Pharmacists in LTCFs on the top 10 disease states with Alz Dis. as the first chapter. Thank you for a few suggestions especially on Paxil. Never thought much of that drug except in PTSD. So Brava to you for your insights. Jim Dickerson Rp,PharmD, Gretna,Ne

        Reply

        • Glad you found this helpful. Yes, in the US, Paxil is unpopular with geriatricians, we feel that citalopram and sertraline have more favorable side-effect profiles in vulnerable older adults.

          Of course as you know, the ideal is to treat problems without medication whenever possible, but such non-drug methods often require time, effort, and some training of family and long-term care providers.

          Good luck with your book!

          Reply

          • My father was on the majority of these medications. My mother had called 911 three times because of his anger and violence. We were fortunate that a psychologist, dealing in geriatric patients only, saw him the jjthird time. He was a godsend. It took about a year to find the right medications and strength to stabilize him. We had no idea he had dementia. About a year prior he had a severe backwards fall on the stairs leading to the front door. He landed head first against the front door. How he came back from that I don’t know. He was put in a coma for 2 weeks afterwards. We assumed his violent behaviour was due to brain damage from the fall. Also, my dad had always been an angry, agitated and violent person. His anxiety and depression had gone untreated for years. Prior to his dementia he had calmed down quite a bit. His anger from dementia was 24/7, it never went away and you had to be on guard all the time. Anyways, yes, the drugs had a dramatic effect on his personality. He became someone I no longer recognized. And over the 10 years he suffered with dementia my mother worked with his doctor, increasing and decreasing the mg on these medications when she felt something was wrong. I can’t imagine how long he would have lived without these meds.

          • Thanks for sharing your story. I’m so glad your family was able to find a health provider with the right expertise to work closely with you and help you. It does often take some trial and error and also adjusting as the person’s brain changes over time.

          • So glad to see an open dialog discussing the pros and cons INCLUDING MED management ESPECIALLY the benzodiazepines. They can help or hinder but should NOT BE ERADICATED!! We, some patients, require trials to observe responses and it is pure negligence to prohibit us from testing and forced negative experiences because we are denied access to testing and options by wholistic practitioners who simply refuse to accept that many patients require meds deemed addictive, dangerous or otherwise “bad” based on NO individual science

          • I agree that it’s not a good idea to have a blanket “no risky meds” approach. I feel that great caution should be exercised before starting them — or agreeing to prescribe them for a new patient. But in some cases, the likely benefits seem to outweigh the risks. And for people who’ve been on them for a while, just stopping over a short period of time is usually not viable.

      • My father has been making growling noises and howling wolf noises all night long! We are long suffering as caretakers. Clonapam doesn’t work, donezipil either. He fights us andthreatens to punch us in the face, if we change his diaper. Help!!!

        Reply

        • That sounds like a responsive behaviour in dementia. I made a YouTube video about that, which you can watch here: https://youtu.be/o-pmHQdKzq0

          Even though it may seem to make no sense, your father is expressing some unmet need like discomfort, pain, boredom, or something else. Trying to identify what’s triggering the behaviour and modifying his environment, or your approach will probably work better than medication, as you mention.

          If there are specialized Geriatrics or dementia services in your area, this would be a good time to ask your family doctor to arrange a referral. Caregiving is incredibly difficult when the care recipient is fighting back. It could escalate into a situation where injury occurs.

          Another thing to remember is that behaviours are usually time limited, so this won’t last forever. I hope you can access some local resources and get some rest.

          Reply

        • I’m glad you found the article helpful, Richard. It’s great that you’re thinking carefully before starting a new medication and considering the risks and benefits for you.

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          • Me and my boyfriend live and take care of his 87 yr old grandmother who has moderate to sever alzheimers. She is very very rude, disrespectful and aggressive to me! She has threatened to hit me with her cane and even had it up in the air and coming at me with it. My bf got in front of her. Honestly. I’m at my end here. Don’t know what to do or how much longer I cam live like this. Any help will be appreciated

          • It sounds like your boyfriend’s grandmother is having responsive behaviours of dementia. I made a video about that, which you can watch here: https://youtu.be/o-pmHQdKzq0.

            It’s vital to make sure there isn’t a medical issue that’s triggering this change. I would suggest a visit to her doctor to sort this out.

            In the end, it may be that there’s something about you that’s the trigger, Don’t take it personally, and realize that dementia can play tricks on a person’s brain. Getting to the root of the behaviour will be the key to figuring out how to avoid her responses.

    • I have been working with care facility and doctor to reduce list of meds-is off morphine and sertraline with an astonishing change in alertness and understanding. however, there is now an increase in belligerent behavior, and suspicion. not sure if this will change, or it will be necessary to medicate again. hard to tell if he is just being himself, or if he has a real problem!!!!!

      Reply

      • Well, it sounds like reducing those medications has improved the overall activity in his brain, so he is more alert. Usually an opiate like morphine is more sedating than a medication like sertraline, which isn’t very sedating for most people.

        Suspiciousness is quite common in dementia, especially if a person is feeling anxious or if the environment doesn’t feel reassuring and familiar.

        Belligerence is also common. It’s important to check and see if some kind of uncomfortable symptom might be causing it. Presumably the morphine was to treat pain. Does he still need some kind of treatment for pain? I find that some of my dementia patients are more agreeable once we start a very small dose of opiate, or some other effective medication for pain. Or are there other things going on that might be putting him ill at ease and triggering irritability?

        You basically need to explore the situation a bit, and then also give things a little time. Hopefully things will become clearer as you go through your process of trial-and-error. Good luck!

        Reply

        • Very good article.
          Mom was a very Profound behavior disruptions Alzherman’s client. Very hyper, insomnia, strip herself in public area non stop… Just wear me off. ..
          She was on Depakote, but sooner noted stiffness on her neck and difficulty walking… have to stop.
          Dr. just start on Seroquel …
          At night if give PRN Temazepam plus ativan she may sleep 4-5 hrs, then restart all bizarre activities again. Sleepy at day.
          Do you think Lithium and ECT will be better for her or not ?? Is ahe need go to senior Mental Hospital for eval?
          The only good thing for her is she compliance w/ the medication and cooperate w/ behavior correction ( but Just in 10 min, she will repeat again).
          Long memory are good , and no short memory

          Reply

          • Sorry that these behaviors are so difficult.

            Lithium is sometimes used to treat bipolar disorder in older adults but it’s not a treatment for difficult behaviors associated with Alzheimer’s or related dementias. Electroconvulsive therapy is a treatment for very serious depression, not for dementia.

            Temazepam and lorazepam (brand name Ativan) are both benzodiazepines, we try to avoid using them in geriatrics and we generally don’t give two drugs in the same class.

            Generally if you are struggling then it’s a good idea to get an evaluation and then tailored advice on how to manage. She may improve with certain behavioral techniques. good luck!

        • I have early onset dementia and there are so many medications that they give patients with dementia that make them so much worse and antipsychotics most of the time do I don’t think they should ever be considered. A low-dose of the bench that would be a better and safer route. Anti-depressants as well have done nothing but made me worse over the years and changed who I was as a person I am perpetually hyper. I have seen many other people put on antidepressants and other medications to find out that the recourse was neurological, but even when they know that they’re still trying to push this drugs on us because they don’t know. Then I’ve witnessed many people not being treated for pain because they didn’t believe they were actually in pain. One nurse said he’s not in pain he’s just screaming because he has dementia, but it was obvious by the sounds of the scream they were that of pain. I also believe she said they don’t feel pain and some people actually believe we don’t feel pain the way others to. I’m sure there’s some type of demyelination going on. I’m sorry I’m just angry, because every time I go to a doctor and they try to give me a medication I have to tell them I can’t take that and that is not my job to know which medicines I can take. Someone with the LBD given an antipsychotic is very dangerous. With most patients they don’t even know definitively if they have other dimensions. I think it’s dangerous without having a definitive answer. It says you’re playing Russian roulette with their lives

          Reply

          • Hi Catherine and thanks for sharing your thoughts. I’m sorry to hear about the negative experiences you’ve had with medications and the health care system. There is a lot of misconception and misinformation about dementia, even among health professionals, as you mention.

            I think you make a great point about pain as a potential cause for behaviour changes, and this is often unrecognized. There’s no evidence that people with dementia are less sensitive to pain, and diagnosing and treating pain in those with dementia can be complex, but is so important.

            As a Geriatrician, I do prescribe medication in those with dementia, but we always work in an interprofessional team to find non-medication treatments to use as well. Here’s a video I made about that which you can watch here: https://youtu.be/o-pmHQdKzq0

    • I am devastated, my husband has PPA a rare Vascular Dementia.has been in care home 13 months. He was on Risperidal for all that time, they said he was getting aggressive so it wasn’t workingvanymore, took him off cold turkey & put him on Nozinan 2 weeks ago, he has been very violent at times on this drug. Today was my visit he didn’t come the said he was violent, tried to break a carers arm & onothers thumb thank god they didn’t break. They phoned me again & said he thru a cup of hot tea in carers face she ducked. I asked fir him to be taken off this drug right away as it was a mind altering drug & changed him. They phoned again to say if there was another incidence today they would phone the RCMP & take him to Pych Ward an hour away. God I am at rock bottom don’t know what to do. They just phoned again & syc Dic doc said NO we will increase it. What can I do,

      Reply

      • I can’t imagine how stressful this must be for you and your family. By PPA, I assume you’re referring to Primary Progressive Aphasia, which is a type of dementia that is usually grouped in with the frontotemporal dementia types. It usually affects language, and can cause changes in behaviour, as with most types of dementia, especially in later stages.

        It’s very hard to determine if the behaviour of a person with dementia is caused by the effects of a medication, or by the dementia itself, or if there’s some other trigger that hasn’t been identified (like pain, hunger, fear. or other discomfort). Sometimes it’s a combination of all of the above. The best approach is to try to figure out if there are any unmet needs and get the care team to offer a consistent, gentle approach. Unfortunately, when the person’s responses are such that they could create safety issues, we often turn to tranquilizers like risperidone and nozinan, to try to sedate the person first, and figure out a longer term approach later.

        In such a case, I would find out if the care home has access to a Geriatrician or Geriatric Psychiatrist, even over the phone or by videoconference, to offer advice about what to do to avoid a trip to hospital.

        Reply

  3. My mother’s GP put her on citalopram and I don’t see it working for her-in fact I think it has made her worse. When I expressed that to the doctor, he pretty much dismissed me and said that wasn’t the problem. We aren’t going back to him.

    Reply

    • Citalopram is well-tolerated by most older adults but it doesn’t work for everyone. It’s also possible for it to make some people worse.

      That is really too bad that your doctor didn’t take your concerns seriously. I hope you can find someone who will be a better partner to your family.

      Reply

      • My mother is on citalopram and it seems to help her sleep and with sundowning behaviors, but I do notice that about 45 minutes after the she gets a mean streak which lasts about an hour or so. We know that it is the drug because we have tried changing the timing of the medication, with the same results.
        We are still looking for a better alternative, but no luck.

        Reply

        • “Sundowning” is the increase in responsive behaviours around dusk in people living with dementia. There are some practical things to do to lessen sundowning, but medicaitons are often used as well.

          I’ve had patients describe similar types of reactions with various medications but honestly, it’s very difficult to make sense of how this could happen. Citalopram reaches a peak level in the blood at around 1 – 6 hours after the dose is given, but I’m not sure why that would cause a one hour episode of meanness. Perhapos dividing the dose into 2 parts, half in the morning and half later would give a more consistent level and less chance of the experience you describe.

          Best of luck!

          Reply

        • We had the exact same experience with citalopram in my mother, 95, with dementia. It helped greatly with her sundowning, but we noticed that 45-60 minutes after her dose, she experienced a mean streak which lasted for an hour or two. She was never a mean person, and this side effect occurred no matter what time we gave the dose. By trial and error, we came upon a dose of only 5mg daily. Her geriatrician was clueless that this could be a side effect of the drug.
          It seems that no one (in the medical realm) really knows what works for dementia, or how these drugs help or not help. I only wish that the allopathic doctors would get together with the naturopaths or other alternative providers to try to figure this out.

          Reply

          • Good job being patient and sorting out the right dose of citalopram for your mom. It would be unusual for citalopram, an SSRI antidepressant to cause temporary meanness, but any medication can cause any side effect it seems!

            I too wish we had better, more holistic treatment options available for people living with dementia. Thanks for sharing your experience.

    • Definitely gave my mom extreme nausea and scared to death. Didn’t want me to leave her. I think there is a certain percentage that cannot take it. She was on the lowest dose.

      Reply

  4. Aloha and thank you for this article. I cared for my Mom with Alzheimer’s for many years in the home. The disease led to a disinhibited hyper-sexual response that was very difficult to manage, but very well treated by Zoloft. I thought it was ironic that the same “negative side effect” of this drug (sexual disarousal) resulted in a very effective “off-label” application. Can you disseminate this? Thank you!

    Reply

    • Oh, that is indeed very interesting, thank you for sharing this story. Alzheimer’s does often cause disinhibition and some people do become sexually in appropriate. I’m not sure it had ever occurred to me to try an SSRI for that specific purpose, but you are right, it makes sense given that decreased libido is a common side-effect. I will have to ask my geriatric psychiatry colleagues about this next time I see them. Thank you!

      Reply

  5. My mother had been prescribed Valproic acid for late middle stage Alzheimers. Lately, she has has become aggressive and very agitated without provocation. Just seeing herself in the mirror elicits an argument with herself, not to mention family members.
    The clinic refuses to give my dad even small occasional doses of benzodiazepenes, citing the debunked study of causing the disease to speed up. What bothers me is that they are not even testing her blood as needed for the current drug, and they are willing to give her haldol – even though she is experiencing difficulty using her hands now! It’s ok to have difficulty in movement (falls?) or tardive dyskensia of course. Is the fact that it is a controlled drug playing a small part in this? My poor dad can’t leave the house with her, and I feel as if they should be transparent in why their hands are tied. She’s not going to get better and my dad needs to live out his life at least in peace. He does’t want to institutionalize her, but the medical community is worthless.

    Reply

    • This sounds like a difficult situation. It’s unfortunate if you feel the involved clinicians aren’t communicating with you well enough.

      I have to say that most of us in geriatrics are very reluctant to prescribe benzodiazepines for people with dementia and difficult behaviors. After trying non-drug methods to address agitation, I do usually try a low-dose antipsychotic. Movement difficulties due to antipsychotics can happen, but that’s usually at higher doses. Of course, I cannot say is this would be a reasonable approach for your mother, especially given you report some difficulty with her using her hands.

      It is also true that benzodiazepines may be perceived as having more “street value” and so some clinicians worry about them being used or diverted by someone else in the household. They are also more complicated to prescribe since they are a controlled substance.

      I would encourage you to keep trying to discuss your concerns with the clinicians. Emphasize that your father really needs help. Consider a trial of what your mother’s doctors recommend, and see how she does. If it doesn’t provide enough help, work with the clinicians on trying something else. If the communication continues to be unsatisfactory, then your family might want to consider getting a second opinion. Good luck!

      Reply

  6. My grandmother has been suffering from dementia for a little while. We want to make sure she is healthy and happy, so we’re looking at different treatment options. I never realized keeping a journal can help family members understand what triggers different behaviors. I’ll be sure to discuss this info with my family.

    Reply

    • Yes, figuring out what triggers a person can be really valuable, and a journal makes it easier to do this. Good luck!

      Reply

  7. My dad, who has advanced dementia, was put on 750mg of depakote to deal with his sexually inappropriate behavior. Several months later, he developed almost all the side-effects you describe–vomiting, some hand tremors, difficulties walking, even more confused thinking. Of course the powers that be are saying this is the dementia worsening–and it could be–but I am livid that no one ever discussed such side effects with me. At my insistence, they’re lowered the dose to 375mg a day–but not much change so far, after 3 weeks. Think there could be?

    Reply

    • Parkinsons-like symptoms (which include tremors and stiffness, and sometimes difficulty walking) are known to develop in some people who take depakote. Often these symptoms resolve when the drug is discontinued, but apparently it can take weeks, and occasionally, the problems persist.

      It’s too bad if you weren’t notified of potential side-effects but also not that surprising…most drugs have a long list of “not so likely but not vanishingly rare” side-effects, and doctors often feel it’s not feasible to discuss all these possibilities with patients and families. In truth, I think it’s a bigger problem that usually families aren’t informed that there isn’t much research supporting the use of many of these medications.

      You should certainly discuss your depakote concerns with your father’s doctors. It may be reasonable to further taper down his depakote and see how he is, both in terms of inappropriate behavior and in terms of the other symptoms you are concerned about. Good luck, I hope you find a better solution for your father.

      Reply

  8. My wife was diagnosed with PPA at the age of 50 we believe and have been told that it has progressed to Alzheimer’s. She was agitated the first day and within 8 hrs was sent to a behavior facility and put on all these med’s that your talking about. Please help I beg you

    Reply

    • By PPA, I’m assuming you mean primary progressive aphasia.

      I am sorry to hear of your wife’s decline and even more sorry to hear that the facility started medication for agitation so quickly.

      Unfortunately, all I can do is offer a little information and encouragement. If you’re concerned about your wife, you will need to ask a lot of questions and otherwise advocate for her. Those medications must have been prescribed by a clinician. You can ask to speak to the clinician, and express your desire for your wife to be on the minimum medication possible, or medicated only as a last resort. You can also complain about the medication to the facility, and ask the nursing director to explain to you what non-drug interventions they tried, or what they are planning to do in order to avoid medicating your wife indefinitely.

      You may find it helpful to connect with other Alzheimer’s caregivers through a support group, either online or in person. Many people are in your situation, and will have encouragement and practical advice to share.

      Good luck!

      Reply

  9. My has become very violent with staff and residents. He was transferred from his memory care unit to a behavioral health unit in a hospital. He is on .5 mg Ativan 4x/day, .5mg Haldol 4x/day and 1 tablet (?mg) of Norco as needed for pain in his back. He is still exhibiting aggressive behaviors after 5 days. I am getting mixed messages from nurses and doctors. Some feel it is too soon to determine whether the aggression can be controlled and others think there’s no hope. No other drugs have been tried and doses have not been altered. What should I be expecting? Is it too soon to know where this may lead? Should they be trying other medications?

    Reply

    • This sounds like a difficult situation for everyone involved.

      When aggression comes on fairly quickly (e.g. over hours to days), we normally search for anything that might trigger pain, discomfort, or delirium. So we would check and make sure he didn’t seem to be hurting somewhere, didn’t have constipation, and then we would also check for other delirium triggers such as infection, electrolyte imbalance, dehydration, medication side-effect, etc.

      One tablet of Norco per day would not be enough to manage an ongoing pain problem, such as a new painful fracture in one’s vertebrae. (But if he’s on pain meds, you also want to make sure he’s not getting constipated from them.)

      A violent person often does require at least temporary chemical restraint, for the safety of everyone else. We don’t usually use benzodiazepines as they can disinhibit older adults and cause paradoxically worse agitation; it is often possible to manage an aggressive episode just with antipsychotics. Chemical restraint scheduled for 4x/day seems like a lot, we would usually schedule at most 1-2 times per day and otherwise use as needed doses, because the goal should be to control the behavior with the minimum amount of medication necessary.

      So…you might want to ask them questions about why they feel both the ativan and haldol are necessary. You could tell them you’ve read that Ativan can agitate older people with dementia and ask if they might consider using just an antipsychotic, if chemical restraint remains necessary.

      And I would certainly encourage you to make sure they investigate what brought this on. Hopefully the situation is temporary and he will improve soon. Good luck!

      Reply

  10. Hello. My husband was diagnosed at age 52 with early onset of dementia. He is 55 now and is becoming agitated, negative, over sexual and now the biggest issue is paranoia. He has been taking 5 mg of Aricept twice a day and 5 mg of memantine twice a day. My son and I are overwhelmed with his behavior. What do we do about the paranoia? I don’t know if he is in mindset or what now.

    Reply

    • For significant paranoia or problematic delusions, we sometimes try a low dose of antipsychotic. As noted in the article, there are a lot of downsides to using these drugs. But if the paranoia and delusions are causing significant distress for the person with dementia or for family, then the benefits may outweigh the risks.

      Before starting an antipsychotic, please see my recommendations under the section “If your relative with dementia is not yet taking medications for behaviors.” You want to be sure you’ve tried non-drug approaches before resorting to antipsychotics.

      In an earlier comment, a reader mentioned that her husband’s hypersexuality responded well to sertraline (brand name Zoloft), which is an SSRI-type antidepressant. You may want to ask your husband’s doctors about trying an SSRI for this purpose. (It might also help with his mood and other symptoms.)

      I am sorry to hear that your husband has developed dementia at such a young age. Usually, people like him are evaluated in memory clinics, and many such clinics have social workers and additional support services available. The medical specialists there may have additional ideas that are likely to work in someone of his age, and with his particular type of dementia. Good luck!

      Reply

      • Hello, I’m right there with you! My wife got diagnosed at 50 and at 54 we finally got her into a memory care facility yesterday. They called to have her baker acted this morning due to her anger, hallucinations, and unrestfulness. Once she has been evaluated they are sending her to a psychological inpatient care to get her leveled out. It has been anything but fun finding help due to her age. If it wasn’t for the memory care stepping in our 2 teenage daughters and myself would be left with fighting doctors who won’t change medications that will help or even see her within a reasonable time. This has been heart breaking for all of us.

        Reply

  11. Hi,
    Thanks for this site – so much useful info! Are there any good – unobtrusive – GPS devices which can be used to track wandering elderly? My father has dementia, still fairly functional, but now gets lost or confused when out in public – going to bathroom, at grocery store if he gets separated even for a moment. I was thinking the Find My iPhone app, or can a fitbit be used? I’m hoping to find something easy for my mom to use, and something that seems normal and doesn’t make him feel like a naughty child. Is there a good information site you’d recommend? A quick google search turns up lots of devices, but could use a trusted resource for info.

    He does see his doc next week, and she will check med levels to see if anything needs tweaking.

    Thanks.

    Reply

    • Good question. I am hoping to research this issue in greater depth, but not sure when I’ll be able to do so.

      Some of the Fitbit models do have built-in GPS, but I’m not sure whether this would enable family to track a person.

      There are some GPS tracking devices designed for people with dementia, which can go on the wrist or around the neck. The challenge is getting an older person to wear them. Some of the wrist devices are designed to be hard to remove.

      There are also GPS insoles (“SmartSoles”) which are less likely to be noticed by the person with dementia, however they are expensive and need to be recharged every few days.

      Like you, I am still looking for the trusted resource on this topic! Perhaps we can update each other as we find them. In the meantime, you could try one of the devices available on Amazon…if nothing else, the return policy is usually more generous than other sites, plus there are often reviews from other real users.

      Last but not least, if you are considering GPS tracking, I recommend taking a moment to review the Alzheimer’s Association two page statement addressing the risks and benefits, as well as the ethical issues:
      Electronic Tracking (Alzheimer’s Association)

      Good luck with your upcoming doctor’s visit!

      Reply

      • I bought a child’s Gizmo from verizon for my husband. I can track him on my phone Also with the push of one button he can call me. I can call him and even if he doesn’t press the button to answer it will automatically connect. The monthly cost is minimal and just added to my verizon bill.

        Reply

      • I use GreatCall for my dad. I have his cell phone and now have a neck devise . This works great. I have app on my phone and also can move with him to his cottage . My brothers can also see where he is if I give them permission. Weekly updates and fall alerts. I also use medminder medicine box. It lights up only when time is correct to take medicine and will alert me via text or phone calll or both of my dad does not take the Meds with in the time period I set up . Very helpful

        Reply

        • Thank you for sharing these suggestions. You may want to post them on one of our other articles on tools for caregivers, too.

          Reply

  12. Thank you for this helpful article. I think I have some helpful information to ask my husband’s Doctor on Monday. My husband is in late stages and I need help with his medications desperately. It’s hard to know what causes his behaviors the meds or this horrible disease. Again thank you.

    Reply

    • Sorry you are having a hard time with your husband. Yes, it can be hard to figure out what is causing or contributing to someone’s difficult behaviors.

      I hope your upcoming conversation with the doctor is fruitful. Good luck!

      Reply

  13. Are there any patches or other forms of severe behavior medications for dementia in a resident who will not eat or drink? Therefore pills cannot be crushed, given in liquid or given whole because she spits everything out. She will eat a muffin at times when her spouse feeds her. Thank you.

    Reply

    • I know that Exelon (rivastigmine) is available as a patch; not sure about the other medications. I would recommend asking a pharmacist to help you identify other medications that may be available in patch form.

      Crushed or liquid medications are also sometimes served mixed with applesauce or pudding.

      Aromatherapy is not a behavior medication per se, but some studies have found that aromatherapy massages improve behavior. As I mention in the article, it’s important to explore non-drug methods of helping people with dementia feel better, and of managing difficult behaviors. Good luck!

      Reply

    • I’m a hospice and palliative nurse and have seen compounded meds from a compounding pharmacy of Ativan and haldol made into a topical gel to place on the skin and it worked wonders for scary hallucinations , paranoia, and hyper sexual ideas. We had the staff put between shoulder blades so the patient couldn’t wipe it off. We even discharged the 90 something patient from hospice since she was doing so well. A real success story.

      Reply

      • Interesting. I’m not familiar with this type of topical application, but it is indeed very common for hospice providers to use both Haldol (an antipsychotic) and Ativan (a benzodiazepine tranquilizer) to treat agitation or restlessness.

        That said, it’s not at all clear that there’s a good evidence base for using lorazepam (brand name Ativan) to treat agitation or restlessness in dementia patients on hospice. I discuss this in more detail in this article:
        Hospice in Dementia, Medications, & What to Do If You’re Concerned.

        Still, I’ve seen older patients get better and “graduate” from hospice; many of them benefit from multi-disciplinary care, comprehensive attention to their symptoms, and perhaps even discontinuation of other medical care. Nice that things worked out well for your patient.

        Reply

  14. Hello,

    Thank you for such an informative forum. I was wondering, of the chemical restraints are any commonly known to disrupt thermoregulation?

    My brother was diagnosed with M.S. as a 12 year old, is now 51 and has slight behavioral alterations. He has been living in a care facility for the past 6 years and overall has been cordial, compliant and manageable. Over the past 8 months he’s been refusing to eat, drink or take his medication. He’s been making statements such as,”This isn’t my medication” and “I’m not suppose to be talking to you.” and “I know you’re not real, you’re just pretending to be real.”

    He’s been in and out of the ER over 10 times now for his body temperature dropping to 91 degrees. Everytime before a trip to the ER, our family has noted severe cognitive loss and confusion. Between the severe changes in his personality coupled with thermoregulation issues I’m concerned about either accidental overdose or intentional medicinal abuse in his care facility. Is there a way to request a toxicology the next time he’s admitted into the ER? From my understanding, only items such as alcohol, marijuana, heroine, etc are evaluated in a standard toxicology but I’m wondering about drugs such as ativan or risperdal, etc.

    I realize it’s a sensitive issue and don’t mean to insult anyone. Caretakers of these difficult patients are amazing for what they do. Then again, some of them are burnt out and need to change jobs. It would put my mind at ease knowing he was tested (with negative results) so we could move forward exploring a neurological explanation.

    Thank you for your time.

    Reply

    • Getting an elevated temperature is an unusual but known side-effect of certain drug exposures. I have not heard of developing hypothermia in response to medication, but apparently it has been reported in the medical literature.
      Hypothermia Associated With Antipsychotic Drug Use: A Clinical Case Series and Review of Current Literature

      If you suspect his hypothermia episodes are related to drug exposure, you may want to start by asking to review his “Medication Administration Record” (MAR). Residential facilities are usually required to maintain records of every time they administer a drug to a person. Your brother’s guardian or durable power of attorney for healthcare should be able to request this information. It would be extremely unusual (and highly illegal) for someone to be giving him medication and not document it.

      You could also try asking the ED doctors; they should be able to tell you what kind of specialized toxicology might be available. Understanding your concerns might also help them figure out what is happening to him during these episodes. Good luck!

      Reply

  15. I really appreciate the content of this article. My 93 yr old mom has dementia (most likely Alzheimer’s type). Now in the later stages, she is exhibiting an overwhelming fear when toiletted on the commode/toilet. With her slowed cognitive processing, it is necessary to give her visual and verbal cues before attempting to help her pull down her depends to toilet. She screams out in fear because of misinterpreting what is happening to her. It is heartbreaking to watch her in such distress every 2 hours to toilet; and it is heartbreaking for her caregivers who are trying to help her. Any recommendations are welcomed. Are meds appropriate?

    Reply

    • Oh, this does sound like a heartbreaking situation.

      There’s not really a good medication for handling this. You probably can find a doctor willing to prescribe a sedative or tranquilizer, such as lorazepam (brand name Ativan), but this will further cloud her thinking, will make her balance worse, and could even paradoxically agitate her.

      So it would be much much better to find a different way of handling the solution. The best would be to learn more on non-drug dementia behavior management. My former Caring.com colleague Paula Spencer Scott has researched this extensively for her book Surviving Alzheimers, which is a great resource for families, and here’s what she suggests:

      “The behavioral approaches I know of would be to first try to assess the cause(s) for her distress: Is it pain? (So, UTI or constipation possible? Is she eating/drinking enough, could a medication be causing the problem?) Or are perceptual changes causing a fear of the water (common) or of falling as she tries to sit, or of falling in?
      Worth considering: When does the distress begin? When they start to lead her to the toilet, once she’s in the room trying to sit, or after she’s seated? Could assists like a higher seat or frame around the commode help ease anxiety of falling as she sits? What might be happening when this older person is “misinterpreting”? Could it also be an anxiety about privacy?
      It’s also possible that now a negative association has been set up with whoever is leading her to the bathroom, and the whole business is an unpleasant experience for her. That might warrant a whole different approach –not, “time to use the toilet” but sort of cajoling her along and just happening to be there, inviting her to sit, etc. which can be a very time intensive process; if the caregiver is stressed or rushing or tense about it, she’ll pick up on that. Might warrant an entirely different person and approach to doing this, which isn’t always feasible.”

      Probably the most effective way to get help is to get a consultation with a dementia behavior expert for some specific trouble-shooting suggestions. The ideal would be someone who could observe the situation with your mom and model a different approach for the caregivers, but a Skype or phone consult could also be useful. Teepa Snow is one of the best-known experts on the compassionate person-centered care of people with dementia; consider looking for a local professional who has been certified in Teepa Snow’s method, or in something similar. (You can find a list of independent consultants certified in her method here.)

      If you can’t find a consultant or if cost is an issue, try to find an educational event in your area, on personal care of people with dementia. They are sometimes offered by non-profits, by memory centers, or even by memory care facilities.

      Last but not least, consider whether it’s absolutely necessary to use the commode for toileting, and whether it’s necessary to use it every two hours. If it’s creating this much distress or effort to manage, you might find that the burdens outweigh the benefits of this type of timed toileting. There are ways to manage toileting without ever sitting an older person on a toilet or commode, and although they have some downsides, it might be worth it to spare your mom the distress she’s currently experiencing, esp if you aren’t able to get someone to help you make the toileting more bearable for her.

      Good luck!

      Reply

  16. hello,
    My mother had LBD its been gong on for years. i have noticed that her apetite has increased dramatically from being dicreased. She takes 50mgr seroquel each night and is a small person weighs 36 kilos. she has night sleeping disorders. im wondering if after 5 years on this drug if it is necessary and if it actually does anything. she still gets ideas stuck in her head and scenarios that didnt happen. and is no longer interested or can’t follow a film but keeps herself moving wanting to bath and dress and chattering all the time without noticing if anyone is there.

    Reply

    • Sleep disturbances are very common in dementia with Lewy bodies. Rapid eye movement (REM) sleep behavior disorder is especially common. Recent research suggests that this sleep disorder often can be treated with melatonin, which is safer than many other medications for older adults:
      Melatonin Therapy for REM Sleep Behavior Disorder: A Critical Review of Evidence

      50mg of seroquel sounds like a pretty sizeable dose for a woman her size. It is hard to say what it is doing for her now; it might be helping her sleep at night, but it’s possible that she could sleep as well or nearly as well on a smaller dose. You could certainly talk to her doctors and ask if it might be possible to try reducing her dose, and seeing how she does. You could also ask about trying melatonin to manage any sleep disorders.

      Antipsychotics do increase fall risk and can leave people less alert than they otherwise would be. So it’s generally reasonable to attempt tapering them down at least a bit. Good luck!

      Reply

  17. Wow this is awesome! My mommy is 65 and was diagnosed with early dementia over ten years ago. She is now living with my family. Im having issues with her and her pain meds. She often request them seems to be every hour. I find myself saying its not time yet or I just gave it to you. She becomes angry and difficult when I tell her the time igave her the pain meds. She insist that i allow her to take her own meds how she wants them. I tell her that I cant do that because she forgets that she has taken them and over medicates. Its veey obvious that she has an dependency on the oxycodone 30mg pills. And being and ex addict does not help the matter. She accuses me of taking her meds or wanting control over her. She is belligerent and down right mean. Her doctors advised me that she is not competent to take care of herself or others(3grands she adopted). But I have no poa or conservatorship over her or them. Help what do i do?

    Reply

    • Yikes, that does indeed sound tough. Especially with her dementia, I can imagine it might be hard to get her to cooperate with non-drug methods of managing pain and a program to slowly reduce her dependency on these medications.

      One approach that sometimes helps, in such situations, is to switch the pain medication to something longer-acting and harder to abuse. For instance, opiate painkillers are available as a patch; a fentanyl patch is changed every 72 hours. Methadone is another medication that is quite long acting, but is taken as a pill or a liquid, once daily usually.

      You might also be able to help her feel better — which could improve behavior — by treating pain with non-opiate medications, such as lidocaine patches or over-the-counter creams. Often people want to feel like “something” is being done, and those approaches are safer than continuing or increasing high doses of opiates.

      In terms of capacity and competence: if her doctors think she can’t care for herself or her affairs, and you don’t have a durable power of attorney, then in most states you will need to consider requesting guardianship/conservatorship through the court system. Elderlaw attorneys can help with this, but if money is an issue, then definitely start by checking with your local Area Agency on Aging and also consider reporting her to Adult Protective Services (APS); APS can sometimes initiate conservatorship proceedings.

      I have more about capacity and competence here: Incompetence & Losing Capacity: Answers to 7 FAQs

      Good luck and don’t forget to take care of yourself; this sounds stressful and you may be in this situation for quite a while yet. There is an active online support group for caregivers at AgingCare.com; that might be a good place to get moral support and ideas for how to proceed.

      Reply

  18. i am currently taking care of my mother in law. i believe she has dementia. she is 88 yrs old and cannot walh properly anymore. she needs help with everything but that is ok because it is our duty to care for the in their old age. her behaviour is getting increasingly irrational each day and a lot of times she cries for help and say inappropriate words. at night it is worse. only in the wee hours of the morning when she is exausted does she sop and sleep for hours then it starts again. my wife and i have tried various methods using psychology as we know it but it doesn work. please comment . its been a long time since we had a good night sleep.

    Reply

    • Sorry to hear of this situation. It is not uncommon but it is certainly very difficult.

      If she has memory and thinking problems and behaves irrationally during the day, I would encourage you to learn more about how to manage dementia behaviors. This can reduce your stress and might help your mother in law feel better. There are a number of books available on managing dementia behaviors. You could try Surviving Alzheimer’s, by Paula Spencer Scott; it has lots of good reviews. (She is a former colleague of mine.)

      Regarding addressing the sleep issues, I explain how to do this here: How to Manage Sleep Problems in Dementia.

      Basically you want to try to address any pain or other discomfort your mother might be in. You should also try to regularize her day time schedule, and make sure she gets exposed to sunshine, fresh air, and exercise if possible. I cover medication options in the article; most are quite risky for older people with memory problems, but there are a few safer options you can try.

      Research has found that it’s possible to improve the sleep of people with dementia, but it usually takes a comprehensive multi-pronged approach. So, no quick fixes are usually possible, but it should be possible to improve the situation. Good luck!

      Reply

  19. Hello,

    My dad was diagnosed with Alzheimer’s disease about 3 years back. He was easily agitated when he couldn’t remember or perform daily task. He was suspicious of my mom and always accused her for stealing his money. Doctor gave him Memantine and 25mgr seroquel. But we found that he couldn’t intellect well, couldn’t perform daily task, couldn’t process or interpret what we talked to him and sometimes get agitated (his face will turn very red when his behavior started). Should we stop giving him the Seroquel as I read somewhere that this drug is not good for elderly with Alzheimer’s which will worsen his intellectual function?

    Reply

    • Quetiapine (brand name seroquel) and other antipsychotics are somewhat sedating and so in many cases are reducing difficult behavior just by chemically restraining the person. So they should really be used as a last resort, usually if an older person is so paranoid or agitated that they are posing a real danger to themselves or to family.

      As I explain in the article, there are a variety of non-drug ways to help people with dementia cope with frustration or other issues that might be distressing them. If you haven’t already done so, I would recommend reading the linked article on tips for Alzheimer’s Caregivers. I also like the book Surviving Alzheimer’s, which offers lots of practical suggestions for families.

      Although remaining on antipsychotics is risky, you should be careful about stopping or reducing them. Behavior often gets worse unless a family or care team has put some effort into otherwise supporting the person by responding in a thoughtful manner to their needs. It can also help to provide the person with dementia with additional exercise and enjoyable social activities.

      Do bring up your concerns with your father’s doctors. I hope they will be helpful to you. Good luck!

      Reply

  20. My mother was just put in nursing facility because of her declining dementia and combative behavior. My sister who is her caregiver has not been able to touch bases with the facilities physician. She wants to know why she is on Klonipin. Do they usually give Klonipin to dementia patients. This physician will not return calls.

    Reply

    • Yikes, this does sound potentially worrisome.

      I would say it’s not uncommon for people with dementia to be prescribed a benzodiazepine such as Klonopin. However, as I explain in the article, this is probably not the best way to approach agitation, since benzos often cause side-effects, increase fall risk, and have not been proven to be effective.

      They do tend to sedate and settle many — but not all — older adults, but there are better ways to manage agitation and using tranquilizers should be a very last resort.

      Also, Klonopin (generic name clonazepam) is very long-acting; for an agitation episode, it is more common to prescribe lorazepam (brand name Ativan), which doesn’t last as long.

      I would encourage your family to keep up your efforts to contact the prescribing clinician. You should also be able to bring your concerns to the administration of the facility. Find out who the leaders/supervisors are, ask to speak to them, and put your concerns in writing (this creates a paper trail).

      Every state also has a long-term care ombudsman program; they work “to resolve problems related to the health, safety, welfare, and rights of individuals who live in LTC facilities (i.e. nursing homes, board and care, assisted living, and other residential care communities).”
      https://www.acl.gov/programs/protecting-rights-and-preventing-abuse/long-term-care-ombudsman-program

      You can sometimes motivate facilities to be more responsive by letting them know that you will be contacting the ombudsman if your concern isn’t addressed soon. Good luck!

      Reply

  21. Hello Doctor,

    I have been trying to get some help and answers on what I can do for my mom who is 80 years old and is suffering from fear/scared at night. I think her fear is about someone breaking into the house and such. I have been searching Google for some answers and I found your wonderful article tonight.

    Mom’s Neurologist say she does not have Dementia, but does suffer from short term memory loss from a bad fall that would have happened one year ago next month. She had a brain bleed and was in ICU for four days and the bleed ended up clearing up.

    Mom had this nervous/fear problem before the fall and was on 20mg Paxil twice a day and 1mg Ativan three times a day. After the fall and hospital stay the fear problem was gone and she was no longer on the Ativan. However the problem returned shorty after and the doctor changed her meds to one 37.5mg Paxil CR and instead of Ativan she was given 0.50 Xanax up to three times a day. Usually taking just two 0.50 (1mg total) Xanax before bed.

    Mom’s problem got worse at the end of last year and her Neurologist added 5mg Buspar three times a day to the Paxil and Xanax she was already taking. She improved for several weeks after the medication finally took effect.

    Now for the last four weeks or so the problem is back full force. I don’t know what to do? I have spoke to her GP, Neurologist and Heart Doctors about the problem, but they have not offered any solutions, but one of doctors said to give an additional 0.50 Xanax which would be up to 2mg’s total per day.

    I wonder if trying a different kind SSRI medication other than Paxil would work better or is that something that should or should not be tried? If so, what would be a good one to try that might work better?

    I also wondered about increasing the Buspar to see if that would help, but then I read about Serotonin Syndrome and how that can be dangerous. I was trying to find out what amount of Buspar would be safe to take with Paxil to avoid serotonin syndrome, but have not been able to find the answer.

    Mom otherwise is fine mentally other than the short term memory loss as she reads the paper everyday, does Facebook on her tablet to talk with friends from church, watches the news and tv shows and etc. However, she has had three small strokes (believe they are called TIA’s) over the last 4 or so years and the first one made mom unsteady on her feet, so that is the reason for the fall. She also has a pacemaker.

    My mom is so precious and loving and it breaks my heart to see her suffer from something I hope is treatable.

    If you have any suggestions on medication or combination of medications that I could mention to her doctors that would be so wonderful!!

    Reply

    • Sorry to hear of these issues affecting your mother, I can certainly see why you’re concerned.

      It’s not uncommon for people of her age to have fears or even false beliefs, as I explain in the linked article on common causes of paranoia.

      Unfortunately, it’s not possible for me to make recommendations regarding her medications. How to treat her depends on what her doctors think is causing this problem. It’s also ideal to try to manage fears and paranoias with non-drug approaches when possible. Last but not least, in geriatrics it would be unusual to use Paxil because it is anticholinergic, and we would normally be very reluctant to control symptoms with a benzodiazepine such as Xanax or Ativan, because the risks usually outweigh the benefits in older adults who have any issues with falls or cognition.

      Especially since she has now been taking several medications for quite some time, my recommendation would be that you look for a geriatric psychiatrist to assess her and assist you. People develop physical and psychological dependence on benzodiazepines quite quickly, and then it’s not so easy to reduce them. A psychiatrist would be best qualified to help you, especially one with special experience or qualifications in helping older adults with a history of cognitive impairment.

      While you are working on getting help from a suitably qualified clinician, do try to be as reassuring as possible for your mom. Don’t try to talk her out of her fears, that just tends to make older adults even more anxious and stressed. Instead, look for resources that can teach you how to respond constructively, such as the book Surviving Alzheimer’s (even if she doesn’t have a diagnosis or doesn’t have dementia, the strategies will help). I also describe a few approaches in this article: 4 Things to Try When Your Aging Parent Seems Irrational.

      Good luck!

      Reply

  22. Hi
    My mother is in hospital at the moment and we are testing for possible dementia. Both of her parents had it but she is only 64 years old.
    Myself and my brothers are taking turns to stay with her 24/7. We have noticed that anxiety makes any memory issues a lot worse. When she’s calm and relaxed she remembers a lot more.
    I am here with her at the moment and just took her for a shower. The shower seems to be a major trigger and she’s almost in tears and shaking while I shower her. I try to be very delicate and not let the water fall on her head.
    I really want to help her improve but not sure how to tackle this shower issue.
    Any advise would be greatly appreciated.
    Many Thanks

    Reply

    • Yes, it’s definitely true that memory and other cognitive functions can get worse when a person is anxious.

      Being tested for dementia during hospitalization can be problematic. The main issue is that older adults often develop some delirium during hospitalization, which makes their thinking worse than it otherwise would be. It is best to test someone for dementia when they are rested and in their usual state of health.

      For more on hospital delirium, see here: Hospital Delirium: What to know & do

      If the shower is currently triggering anxiety, you may want to ask the hospital staff about other ways to keep her clean. For instance, would a sponge bath be feasible for a few days?

      Hope your mother gets better soon.

      Reply

  23. My husband aged 84 has moderately severe vascular dementia. I am his carer – age 77 – and responsible for dolling out medication. He is a very complicated case, because he suffers from peripheral neuropathy due to pesticide poisoning, arrhythmia, anaemia probably caused by the osteo-sarcoma of the knee. He already had 2 prosthetic joints in both knees. The anaemia caused some brain disfunction before the cancer was diagnosed, but the disfunction got very much worse after a 5 hour operation to remove the tumour on his knee and replace the joint. Unfortunately this was only partially successful as the cancer metastasised and regrew in the joint, but so far has apparently not spread into the body, and he is having radiotherapy to hopefully reduce the tumour and decrease any pain (not a cure obviously). He is in a wheelchair most of the time. He is ‘hospitalized’ at home and I get a nurse coming in once a day to give an injection of Innohep and a nursing aid twice a day to shower and dress/undress.
    My main problem is trying to get the level of Haldol medication right to control psychotic behaviour without totally knocking him out. Also, I do not know whether any of the other medicines need adjusting. His original medicines were prescribed by the geriatric hospital in Montpellier, who have a lot of experience in the field. He is on 5mg Bisoprolol for the heart, 20mg of Seresta (Oxazepam) for anxiety spread through day, 10mg Mianserine for depression – morning, 320mg Serenoa repens and 3gm Paracetomol. The dosage of Haldol is between 25 – 30 drops ( 2 and a half -3mg) three times a day which I give with the paracetomol, as he can be very suspicious that I may be poisoning him. He has also on rare occasions been violent to me when the Haldol wears off, so I have to be careful. It’s very variable. Have you any comments please? I found your article and web site very helpful. Sorry this is so long-winded!

    Reply

    • Hm. That is a lot of medication that he is on. It’s not really possible for me to make specific suggestions as to how his medications should be dosed.

      I will say that it’s a fair dose of Haldol and he is also on the benzodiazepine oxazepam. As I explain in the article, these are considered risky medications and therefore our goal is to use the absolute minimum necessary to control behavior. Also oxazepam is considered short-acting, and the problem with such medications is that they wear off and people almost start experiencing withdrawal; this is less of an issue with longer acting medications.

      If paranoia or aggression is an issue, I would encourage you to also seek help from a dementia behavior specialist. There may be non-drug ways to help him feel better and act out less, and to redirect his behavior when he does act out. This would overall be safer for him. Good luck and take care.

      Reply

      • Thanks for your comments. I should also have mentioned that he is chemically sensitive after the pesticide poisoning, so should probably be on the lowest dose possible of anything. I may be wrong, but I’ve always French doctors can be a bit quick to medicate, but he was in a parlous state when he was an inpatient at the geriatric hospital. at one point he had to be referred to another hospital with a suspected perforated bowel, which turned out to be an abscess on the bowel which was drained. Reading what you have said about infections making the dementia worse , this explains a lot.

        Reply

        • Sounds like he — and you — have been through a lot. Yes, a new infection can make confusion or dementia symptoms worse, either due to the pain or because the illness provokes delirium, and sometimes clinicians choose to sedate people who are very agitated in the hospital. (It is supposed to be done as a last resort, and with the least amount of medication needed, and in the US geriatricians would often choose antipsychotics rather than benzodiazepines.)

          Good luck with your efforts to get his medications and management under better control. Try to take care of yourself in at least little ways, as best you can. If nothing else, find an online support group; there is an active one at AgingCare.com.

          Reply

  24. With my mother’s care, I learned more about CYP2D6 and other CYP450 liver pathways and – unfortunately – became more knowledgeable than pretty much every nurse and most doctors. 2 years before hospice, she broke her hip which is when her poor reactions to all opiods – including extreme agitation – began to show. Tramadol after other falls also landed her in ICU with full allergic shock. Morphine does not always mean comfort, and not all adverse reactions happen in just 15 minutes after a dose. I requested but never got a doctor to sign off on limited genetic testing for this pathway although it is covered by Medicare. It was horrible, and at the end hospice surprised me “it’s all we got so we’re going to give it to her.” It still haunts me.

    Reply

    • Oh, so sorry you and your family had such a difficult experience. Sounds like your mother was unusually sensitive or otherwise unable to tolerate opiates. I haven’t seen that happen very often but it’s really too bad that hospice wasn’t better able to modify the care and medication they provided.

      If the experience still weighs heavily on you, you may want to consider getting some additional help processing the experience, because when it goes badly it can be quite traumatic for family. Take care.

      Reply

  25. Hello. My mother, age 84, has been yelling on and off this past year and has always raised her voice most loudly during all of her Frontaltemporal dementia which accelerated after a head trauma 2 1/2 years ago. Now she can’t speak words and yells continuously these past few months. The hospice nurse has evaluated her for pain related possibly to NPH from her history. They have checked her bowels, did an abdominal X-ray, UA, changed lounging chairs, different cushions etc but nothing conclusive for the cause, keeps yelling. Sometimes seems to communicate, other times to just yell. Ativan no longer works so have placed her on Haldol 2mg Q12h and MS (Roxinol) 10mg as needed. Mom is very calm now but mostly sedated. I can no longer speak with her since she falls asleep then awakens for moments at a time and she appears more contractured and yells out in pain when moved. The hospice nurse isn’t open to other forms of medication except antipsychotic heavy hitters but it does keep Mom quiet. I don’t know what is normal practice in this situation but I guess Mom will die in sedated bliss, her eating has decreased as well. I’m tired as a MPOA to always second guess medical intervention ( facilities like to sedate) and don’t know what if anything to do. The hospice nurse says if they lift the Haldol she will start yelling again and the residential home won’t keep her there.
    Help or insight would be most appreciated. Thank you

    Reply

    • Oh wow, this does sound like a difficult situation. You are right, as medical power of attorney you often do have to spend time advocating for your parent, and it’s often a real factor in the stress and exhaustion that people experience.

      Well, I can understand why you’d like for her to be less sedated, although “sedated bliss” does sound better than often hollering. One thing I wonder is whether it’s being mostly driven by pain. Oral morphine usually provides relief for about 4 hours (longer if the person’s kidneys are impaired or shutting down). At the end of life people often have pain around the clock, so it’s often appropriate to provide pain medication that is dosed to cover them most of the time. This means either scheduling Roxanol for every 4 hours, or using a longer-acting pain medication. Hospice should know how to do this. You could talk to them and ask about trying this, and then perhaps they could try reducing the haldol somewhat, and seeing how it goes.

      I have more information on medications while on hospice here: Q&A: Hospice in Dementia, Medications, & What to Do If You’re Concerned.

      Good luck and take care.

      Reply

      • I have dementia. At times I’ve felt as if I was going to sneeze…… in a split second I’m on floor, and I’m awakened by screaming! I’m shocked that it is, was, me.
        This often involves hitting myself, I can’t stop but I feel no pain. Nothing can stop these episodes, but I am comforted by someone holding me and reassuring me that they are there, and they’ve got me.

        Reply

        • That sounds unusual and frightening. I’m sorry you’re having this experience. If it’s causing harm, then I would tell your caregivers about the episodes so that they can help keep you safe.

          Reply

  26. Hi,

    My 69 yr. old mother was diagnosed with dementia almost 2 years ago. She is taking Donepezil and Memantine for the dementia. Unfortunately, she has progressed to getting very agitated and aggressive. Some days he will continuously walk around the house, constantly slamming doors, throwing items or trying to find items to throw, etc. Thankfully, it isn’t every day. We have tried the non-medicine way of redirecting her aggression but nothing works. I reached out to her neurologist to ask her to prescribe either Ativan or Xanex. I asked for those items because I didn’t want to go the antipsychotic route yet. I thought that the benzodiazepines route would be less aggressive and if that didn’t work, we could then try the antipsychotic. I explained this all to the nurse and she said the doctor would be calling me back.

    Well, the doctor left me a voicemail and stated she prescribed my mother Seroquel 25 mg. I called back and finally got the doctor. I explained my concerns to the doctor. She stated (kind of rudely) that she will not proscribe benzodiazepines to a dementia patient and I could go ahead and get a second opinion. The problem is, I’ve called around, and of course they need to see my mother in person. That is a challenge because we just found out recently, she does not want to get in the car. She goes off (another reason wanting the medication). Also, her insurance provider is where they house all of their doctors under the same roof and I am afraid tthey will side with her doctor since they are “co-workers.”

    I have done a lot or research that I believe from good resources and I really didn’t see anything about benzodiazepines being too negative for dementia patients (until reading your comments) but have read stuff about the antipsychotics. I also wanted to go the benzodiazepines route first since her aggression is sporadic and wanted to use it “as needed”. Seroquel has to be taken daily, correct? Can it be taken “as needed”? I have a call out to the Head of Neurology to discuss my concerns (not that it will help) but any insight you can provide would be greatly appreciated. Thank you so much.

    Reply

    • Sorry that you are having such a difficult time with your mother’s symptoms.

      Benzodiazepines in dementia are indeed discouraged by geriatricians and most experts. They can cause paradoxical agitation and are more habit-forming, which means there’s a greater risk of provoking withdrawal if they are stopped or reduced.

      Antipsychotics have been associated with an increased risk of death in older adults but they are still considered a better choice in many cases, assuming families have been warned of the risks.

      Antipsychotics can indeed be used on an as-needed basis. Any oral medication will take some time to kick in (compared to IV). I think what your mother’s doctors are suggesting is reasonable. If she doesn’t tolerate the antipsychotic, then they might be willing to try something else.

      I know you have tried non-drug methods, but keep trying, even as you use a medication as needed. Is she getting enough exercise and sunshine? would music therapy help? What activities does she enjoy? these are some of the things to keep thinking about. Good luck!

      Reply

      • Susan,

        We found a low dose of TCH: CBD (1:1 ratio) was so helpful for my mother’s general agitation. She went from pacing back and forth and shouting all of the time to go out to being calm and happy most of the time. She is happy all of the time now, except toileting and showering, during which time she is still very combative. If you can get legal marijuana in your state, I would highly recommend this route. It was a life changer for my mom (75 years old, probable Alzheimers).

        Reply

  27. Dr.Leslie Kernisan

    I am in admiration of your knowledge and willingness to have all of this information out here, I have much respect for what I have read that you have posted and honestly have no further questions because it seems like we all are experiencing the same things in different ways with our aging parents and it’s definitely a challenge and not easy.

    My mother turned 80 in October and in January we started to watch a slow decline which has rapidly sped up now that it is June. She is in a nursing facility which is not where we wanted her to be but we do not have the type of finances to put her in something that we would feel could perhaps be more accommodating for her needs as the dementia has progressed.

    I read thoroughly everything you posted as well as a lot of comments and read other people’s stories and each story had a bit and piece of what we are experiencing as a family and it is more so myself her daughter who has taken this on. I am in some forms of understanding more about it then perhaps I thought I knew but we wished early on in her life she would have allowed us entry because I feel that she had bipolar disorder early on in life but barred us from that part of her life and would not share and would not allow us to reach out and help her.

    Now it 80 it has turned to dementia and I am watching all of the horrible symptoms and we have tried almost every medication that you have listed out there, some of which she became addicted to along the journey so this is where we are and I’m just trying to be understanding and ride out the storm and hope there will be some calm along the way

    Reply

    • Thank you for your kind comments regarding the site, and for sharing your story. It sounds like you and your family have been through a rough time. I have no answers or suggestions, other than to say that it is common for families to try so so hard to help an older parent, and yet we still often end up with outcomes that don’t feel good.

      This doesn’t mean that your efforts were for nothing, or that they weren’t good enough. Especially if you think your mother had mental health issues earlier in life, there probably wasn’t going to be a way for you to get her the help and the outcomes you would’ve liked for her to have.

      You can’t save her or make things better for her, you can only try, as you have done. You are thinking of her, even though she may not be able to show appreciation for this. Take care of yourself and remember that you’ve done a lot, and it’s enough, even though it’s not the outcome we would’ve chosen for her. Hope things get better somehow, and best wishes for what’s left of your journey.

      Reply

  28. Your site is absolutely fabulous! I recommend it to my Home Health Aides and family members of all my patients THANK YOU!!!!!!!!!!!!!!!!!!!!!!!!!!

    Reply

    • Glad you find the site helpful. Thank YOU for your feedback and for spreading the word!

      Reply

  29. My Mother has Alzheimer’s and has gotten more agitated in the last five months. The doctor, facility and hospital all want to give her the antipsychotic drugs. I find that they seem to make her more agitated, kicking, hitting, etc. She does not sleep well at night either. When giving the antipsychotics she can sleep till 3 pm the next day and is very drugged. The last drug was Seroquel and when she was off it she was more calm and easier to redirect. She has now fallen and fractured C2 in her neck and a few weeks later broke her arm. The cervical collar is a real trigger to agitation. Her agitation can be first thing in the morning and sometimes at bedtime or during the night. She lost her spouse of 70 yrs, 4 months ago, then we moved her to a facility, then another facility closer to family, so she has had a lot of change. We now took her from the facility and plan to move to an Adult Family home but I am concerned with her not having any meds for agitation or to help sleep she might not be successful in the home. Are there any meds you can recommend for someone other than antipsychotics for behavior management? Our doctor wants Seroquel to help sleep and for agitation. Thank you.

    Reply

    • Sorry to hear about your mother’s situation.

      I have described the medication possibilities in the article. Assuming they have checked for pain, constipation, etc, then at bedtime, one could try melatonin or trazodone. If an antipsychotic seems absolutely necessary, then we would usually use the smallest dose available; for Seroquel that would be 12.5mg. If she hasn’t done well w Seroquel and doesn’t have any signs of Parkinsonism/Lewy-Body, they could see if she responds better to a different antipsychotic.

      As noted in the article, some Alzheimer’s patients seem to do a little better on citalopram, but that does take 4-6 weeks to take effect. Good luck!

      Reply

  30. Thank you for this very informative article. My 78 year-old male relative has been diagnosed with dementia. He was told following a brain scan that he seems to have suffered a series of mini strokes. This has affected his mood (generally flat affect) or he becomes anxious, frightened, uncooperative, depressed. He has also become neglectful in his personal hygiene, and is socially isolated.

    At the same time, he is most often than not quite coherent, and engages in complex dialogue, where he addresses historical and current socio-political events with accuracy and clarity.

    His psychiatrist has recently decided to address his depression with Effexor. I am wondering whether this is an appropriate and/or effective drug for someone with this diagnosis, and what the the expected side effects might be? Thank you.

    Reply

    • Well, sounds like they think he has some vascular dementia and the symptoms you describe would fit into that as well. This condition is associated with depression but unfortunately, studies so far suggest that it’s usually hard to treat. (Depression in other forms of dementia also tends to not respond well to antidepressants; basically antidepressants seem to be more effective in people who are NOT cognitively impaired.)

      If you want to learn more about vascular depression, here is a recent scholarly overview:
      Vascular depression consensus report – a critical update
      Usually first-line therapy for depression in older adults is an SSRI-type medication such as sertraline or citalopram (brand names Zoloft and Celexa, respectively). These tend to have fewer side-effects. A drug such as venlafaxine (brand name Effexor) is often considered “second-line”; it can have more side-effects and it can be more challenging to discontinue. That said, your relative’s doctor may have his reasons for proposing Effexor.

      I would recommend asking the doctor to clarify why he’s proposing Effexor in particular. I would also recommend clarifying what the plan is for determining whether the medication is working, and stopping/switching the medication if it’s not. Good luck!

      Reply

  31. I have really enjoy your web site and as many others are searching for the right combination of drugs for my mother with Alzheimers. We had tried Risperidone and it did not work well so they switched to Seroquel. I feel it has made her more agitated at times and sedated. She recently was in the hospital after a fall and fractured C2 which was very challenging. We had her off antipsychotic prior to the fall and the facility felt she was easier to redirect off the med. During the hospital stay they gave her hallol, then zypresia and then seroquel. She reguired a sitter after starting these drugs. I keep wondering if there is any other meds, I have read about Depakote and Tegretol but our doctor only wants the Seroquel. What are your thoughts? After she left the hospital for the C2 we took her back to her facility and she fell a week later and broke her arm. I then took her home with me. I then found a great adult family home with an experienced caregiver but the first night mom “screamed”, to me she calls out loudly for a family member and then she did not want to get in the bed or eat. They felt they could not take her after one night so she is back with me. She has not been on any antipsychotic meds but doctor wants to start Seroquel again, which seemed to have a paradox effect to me. She has been a dream for me the last 36 hours. I did get her GP to let us give 1/2 of Trazadone at bedtime which has helped her sleep. Her only other dementia meds are the Memantine and Donepezil. Thanks for any advice.

    Reply

    • Sorry to hear of your mother’s difficulties.

      Well, in general it is better for her to be on fewer medications, esp since antipsychotics and mood-stablizers, such as valproate (brand name Depakote) increase the fall risk and she has already had several falls! People with dementia are often more agitated during hospitalization, because it’s an unfamiliar environment plus they may have pain or other problems contributing to delirium and cognitive instability.

      I cover valproate and mood stabilizers in the article.

      If you can manage with trazodone, that is probably safer. You could also read the article on dementia and sleep, which has some suggestions: How to Manage Sleep Problems in Dementia

      I do think it would help if everyone could give your mother some time to settle in somewhere. Good luck!

      Reply

  32. Hi Leslie, Thank you for your generous and patient replies. My 83-year-old father has been diagnosed with non-specific dementia and has gone from being a fit and active emeritus professor to someone who sits most of the day, reading the same things over and over. He has always had an explosive temper and been given to frequent temper tantrums so it is difficult to say if this is getting worse, but it is getting harder for my aging mother to cope with the outbursts. I guess we were hoping for a magic potion or ‘happy’ pill to provide some respite, but from reading your article it seems not.

    Reply

    • Sorry to hear of your father’s diagnosis, it must be heartbreaking to see him declining.

      No, there’s generally no magic potion or happy pill. That said, a thoughtful multi-pronged approach can sometimes help. If feasible, getting him to exercise and otherwise get enough physical and social stimulation might help him be less reactive. The catch with social stimulation will be figuring out what activities (and in what amounts) provide the needed engagement without aggravating, overstimulating, or frustrating him. Many people with dementia enjoy music, some really respond to art therapy or other creative outlets.

      You could also try talking to his doctors about whether citalopram might be worth trying.

      Otherwise, I would encourage your family to keep thinking about how you can keep this manageable for your aging mother. This is much easier said than done, since many older spouses will initially rebuff their children’s attempts to get help, for a variety of reasons that I won’t go into now. But for some families, getting a paid person in to help on most days ends up making a big difference, since the caregiving spouse can take a few hours off, restore himself/herself a bit, and then have more patience with their spouse during the rest of the time.

      It is definitely a process to learn about managing dementia behaviors and then since every person with dementia is different, it can take a while to figure out just what helps them and is feasible to provide. Your parents are lucky to have you trying to learn more, in order to help them.

      I do recommend Paula Spencer Scott’s book, and she shares an approach to managing difficult behaviors in a related article:
      7 behaviors.

      Good luck!

      Reply

  33. Hello. I look after my husband who is 80. He takes Ebixa every day and the doctor prescribed quetiapina.
    I have been giving half a tablet at night with success. Over the last ten days he doesn’t want to get out of bed. His appetite is poor and it’s a struggle to get him to drink.
    I spoke to my doctor who prescribed haloperidol drops. 6 at night. I don’t know how to administer all of these meds. Can you please help me. My husband is very upset and afraid early evening.

    Reply

    • I had to look up Ebixa; looks like that’s the UK brand name of memantine, which is called Namenda in the US.

      Quetiapine (brand name Seroquel) is an antipsychotic. All antipsychotics are at least somewhat sedating. As I explain in the article, we would normally use them as a very last resort for managing behaviors, and if the issue was sleep, we’d probably start by trying other approaches.

      Haloperidol is also an antipsychotic. Normally we would not start a second antipsychotic while continuing a low dose of the first. You may want to ask the doctor if it’s necessary to use two, because generally it’s better to start by adjusting the dose of the first one. (Or if the person doesn’t tolerate it, switch to a different one.) If you aren’t sure how to administer the medications, I would recommend asking the doctor or a pharmacist. There are also sometimes caregiver education programs that can provide education on practical issues like how to administer medication.

      Medications aside, it also sounds you’re concerned because he’s not getting out of bed and eating less over 10 days. For that problem, I would recommend a medical evaluation to check for a new or worsened health problem…there are any number of things that can cause an older person to lose energy or feel unwell. The initial evaluation can be done during an urgent care visit, and usually includes checking the blood count, blood electrolytes, considering a urine check, considering medication side-effects, and otherwise trying to determine if there’s a new problem with infection, heart, lungs, kidneys, brain, etc.

      Good luck and take care!

      Reply

  34. Are you aware of research into Lyrica / Pregabilin for vascular dementia agitation. My mother was given this and it resulted in many side effects.The worst of which were a worsening of her cognitive abilities, greatly increased falls resulting in many injuries including broken vertebra, and head injuries, communication difficulties , worsened vision (she already had low vision due to MD, cataracts and no vision in one eye), itchiness and skin ulcers. She was kept on 150 mg of the medication despite my objection only reducing it to 100mcg after many serious falls. She has recently had another ‘unseen fall’ and now appears unable to walk although the injuries are apparently muscular and yet her doctor wants her to go on morphine for her pain which is present when she gets up or down or turns when transferring from chair to wheelchair or toilet. I have power of attorney but my views are ignored.

    Reply

    • I took a quick look in the medical literature via Pubmed; there is not much on using pregabalin for dementia agitation, mainly this trial
      Impact of a stepwise protocol for treating pain on pain intensity in nursing home patients with dementia: A cluster randomized trial

      Pregabalin is an anti-convulsant, and can be used to treat pain related to nerves. Dizziness and gait disturbances are known side-effects, so it’s quite possible that this medication increased her fall risk.

      I am not sure why the health providers have continued to prescribe it over your objections. If you’re the designated power of attorney, then you should have the power to refuse certain treatments. If you feel you are being ignored, I would encourage you to bring this up with the clinicians, and with whomever may be supervising them or employing them, if necessary. It’s possible that they have good reasons for wanting your mother to be on these medications, but if so, they should be able to explain it to you, and they are supposed to be including you and your family’s preferences in the decision-making.

      In geriatrics we do sometimes use opiates such as morphine, if we suspect that pain is a significant contributor to agitation. But normally we would only consider this after trying other approaches to managing the person’s pain, we would use the lowest doses possible, and we are also more likely go this route if maintaining comfort and quality of life is a major goal for the person’s medical care. It’s also essential to use laxatives when using opiates, because they are constipating and that’s distressing for the older person and can aggravate behavior.

      Good luck!

      Reply

  35. My 68 year-old mother-in-law was diagnosed with Dementia in August of 2017. It was shocking to us as she had seemed “fine” just a two months earlier. She went from paying her own bills and making her own meals to being unable to toilet without cueing in just a few short weeks. She was hospitalized for very dangerous behavior in August of 2017 (she lived alone in a different state) such as: walking into oncoming traffic, walking while undressed and having delusions. She has had Bipolar Disorder for 45 years but never exhibited these symptoms. We had to put her in a memory care facility that same month as her wandering and constant need for help with ADLs was more than my husband and I could handle with two small children in the home. The hospital put her on an anti-psychotic (Risperidone) and it helped a lot. She was fairly happy and stable and was loved by all in her facility for about 6 months. (She did become completely incontinent–but, otherwise no changes in baseline.) But, in March we took her to a neuropsych specialist to try to determine the type of Dementia and he told her she had Alzheimer’s (We had kept that from her because we were afraid it would trigger her Bipolar Anxiety/Depression.) She obsessively thought about her diagnosis and seemed much more anxious. This same Neuropsych also believed she didn’t need to be on the anti-psychotic so we tried to slowly go off the medication. However, after just reducing the dosage from 1mg to .75 she took a dramatic change for the worse. She cut her wrists (her first suicide attempt) and was just a bundle of anxiety all the time. She forgot my kids names and my name. She also started some strange repetitive behaviors. We put the anti-psychotic back up to 1 mg but it didn’t help at all. Still, the doctors didn’t want to give her anti-anxiety medication. This week she made a second suicide attempt. (She said there was water running down her walls and they wouldn’t make it stop… clearly psychotic.) She is currently hospitalized. Would you give anti-anxiety medication in this scenario? The memory care facility doesn’t want to take her back because of liability reasons without anti-anxiety medications to sedate her. She is so miserable and anxious all the time it just seems cruel not to give her something to sedate her. What anti-anxiety medication would you recommend? She is very healthy other than the Dementia. No issues with walking although her balance is a little off. She will respond to questions but almost never initiates conversation. Ugh. I hate to put her on anti-psychotics and anti-anxiety medications but she is so miserable. The Hospital Dr wants to use a low dose of Valium but her NP wants Ativan. I don’t know which is right. Or, if we should try something else entirely like increasing the anti-psychotic.

    Reply

    • Yikes. Well, your mother sounds like a bit of a special case, with her situation sounding much more complicated than what I’d consider “garden variety” difficult dementia behaviors. Actually attempting suicide as a dementia patient strikes me as a bit unusual, but then again she has a past history of what sounds like significant mental illness.

      Also she is relatively young for dementia, and I find those people often have either more severe progression of diseases such as Alzheimers, or less typical causes for their dementia symptoms. (Dementia in people over 85 is often due to a whole combination of things going mildly to moderately wrong in the brain, whereas in younger people it’s more likely due to one or two things in particular being very wrong.) For this reason, I think evaluation at a specialized memory center can be especially valuable for people her age.

      In terms of her medications: these types of complicated situations are difficult for generalists to manage. Honestly, she would be best served by a geriatric psychiatrist or someone else who has particular experience managing mental illness in aging adults and dementia.

      For most cases of dementia agitation, if chemical restraint seemed necessary and a person is already on antipsychotic, I’d probably prefer to try increasing the dose or otherwise working within that class, before adding a benzodiazepine. Antipsychotics are sedating, and also treat frank psychosis symptoms. Plus, it’s just generally better to have fewer different medications. But that’s a general principle, not a specific suggestion. In your mother’s case, it’s possible that her providers have good reasons to suggest a benzodiazepine. Valium is longer acting than Ativan. Generally, when starting something new, something not super long lasting is a more conservative/safe approach to take.

      I hope you can find a specialist to assist you. Good luck!

      Reply

  36. P.S. She is also on Lithium for her Bipolar Disorder. She can’t increase the dose as her blood levels are already a little high for her age (within normal limits for non-geriatric patients.) Anti-Depressants have not been as successful in the past to treat her Bipolar Disorder as Lithium

    Reply

    • I guess another type of medication to talk to her doctors about would be other mood-stabilizers, such as the valproate. They have risks, but really all your available medication options will have risks.

      Reply

  38. Excellent clarifying ethical documentation of “off label” psychotropic “chemical restraint” that is SOP in most NH’s that constitutes lots of complicated systemic historic ignorance about psychiatric pharmaceuticals and “elder abuse” etc. I have POA responsibilities for a 92 year old parent that has intervened many times with attending physicians, NH administrators, and staff regarding psychotropic Rx of her serious “dementia symptoms” greatly exacerbated by minimum dosage of Xanax, Depakote, and recent push to include Prozac I refused, coupled with lots of politicized systemic ignorance about patients rights and entitlements; the economics of promoted unquestioned pharmaceutical dependence; and overworked and underpaid staff etc. A little “critical psychological dialogue” helps. When I talk with my elder, who has no memory, about the “context” of her “symptoms” she knows exactly what I am talking about.

    Reply

    • Thanks for this comment. Your older parent is fortunate that you are so willing and able to advocate on his or her behalf!

      Reply

  39. My father is 79 years of age. We have been dealing with dementia behaviors for about 3.5 years now. Unfortunately my dad is getting more verbally aggressive And threatening. We tried the ‘no medication’ route until this past June, when we agreed to citalopram to help with the increasing agitation. However his paranoia and confusion continues to increase. My mom is at her wits and and depressed. We are looking at starting seroquel, to see if that helps. My dad is in great shape still walks a half a mile each day with me, rides a bike and gardens, he is just completely not reality based, seeing people who aren’t there, asking about pets we dont have, and paranoid that people are stealng from him. We are doing our best to keep him at home for as long as possible, but i see my mom deteriorating caring for him, as he is very ornery and combative at times. Is our plan to add an antipsychotic at this point justified? Knowing the risks?

    Reply

    • Yikes, this sounds like a tough situation for all involved. I think you are quite right to be concerned for your mother’s welfare and agree that they need to be part of the weighing of pros and cons, as you consider your options for managing your father’s behaviors.

      It is not ideal for antipsychotics to be used, but if you’ve tried all the safer options, then it might be reasonable to resort to antipsychotics, especially if that’s key to enabling your father to live at home or otherwise remain in a situation that overall serves him well.

      What’s good is that you are doing this as a carefully considered decision. That is generally the best one can hope for: carefully considered decisions made after reviewing available options and being informed of the risks. Especially if your dad is having psychosis symptoms (e.g. delusions, hallucinations), the antipsychotic might help.

      Otherwise, I would also encourage your family to look into other ways to relieve your mother’s caregiving strain. Some caregiving spouses are often reluctant to accept help in the home, or send their spouse to a day program, often because their spouse with dementia doesn’t want it. But many people with dementia eventually adapt and do well with the change, and it does help family caregivers sustain their efforts.

      Good luck!

      Reply

  40. Hi Leslie,

    Thank you VERY MUCH for your expertise and helpfulness!
    My 82 year old mother has dementia and very bad hearing. She’s progressed from IL to AL to memory care in an AL. She is very good with me when I bring her home for a few hours… We generally make lunch, go for a walk, listen to music, and maybe something else like fold laundry, plant herbs, polish silver… She is easy for me to manage 99% of the time. She thinks I’m her sister. I go with the flow. I’m happy if she’s happy. On the other hand, the director of the memory care unit has reported multiple instances of my mother exhibiting aggressiveness. Generally, it’s in response to my mother not getting her way. Either she won’t leave another resident’s room or she wants to do something in the kitchen that is “off limits”. When attempts are made to redirect, she can become physical, kicking a door, scratching a care giver, raising a fist… I’ve tried to give the director insight about my mother to try to help. She, and now the exec dir, say if I don’t get my mother on an antipsychotic drug ASAP to manage her, she will not be able to stay due to the risk of her hurting another resident or staff member. My mother is still quite strong. I’m torn between trying to move her to another community and trying a new drug. I like the staff at this community and it is very close to my home, but the memory care unit is very small and packed with residents who generally sit in one room with the tv on. Up to May, my mother had been drug-free. In May/June we began Gabapentin to try to stabilize her mood and reduce pain in her hip/knee/foot (hammer toe) and in July she began a low dose of Mirtazapine. Neither seem to be reducing aggressive behavior with staff. What do you think is a best next step? I see others and you mentioning Seroquel… Would a low dose of this be a best next solution? Haldol? Seroquel? I’m very distressed over the prospect of moving her and also over “dulling her out” with sedation, but have to find a solution right away before she hurts someone. Thank you, in advance, for your guidance.
    Robin

    Reply

    • Sorry to hear of this dilemma regarding your mother. That is interesting that she is fairly manageable with you, but difficult at the facility.

      It can be hard to know whether they are doing everything possible (or at least everything reasonable) to skillfully redirect your mother’s behavior and otherwise reduce her behaviors. Does she get enough stimulation? enough exercise? enough activity? Honestly, I am not sure how you could determine whether they are doing enough on the behavior management front. You could perhaps see if it’s possible to get a dementia behavior consultant to advise on your mother’s care, but you’d have to find one and perhaps pay out of pocket. You could also consider getting in touch with others who advocate for the rights of residents in facilities for your state, they sometimes have resources that can help you advocate more effectively. For instance, in California we have California Advocates for Nursing Home Reform. Every state also has a long-term care ombudsman. Lastly, you could see if it’s possible to connect with the family members of other residents in the memory unit, they might have ideas on how to assess the quality of care and negotiate with the facility.

      In general, there is often a question of whether to be persistent and push the facility staff, versus not be “difficult” (which can offer your family certain advantages).

      Re your mother’s pain, gabapentin is a second line anticonvulsant and in studies is mainly effective for neuropathic pain (pain related to nerves). It probably only helps 30-40% of people with such pain. So if pain is aggravating your mother’s behavior — which it might be — it’s possible that she still hasn’t been adequately treated for her pain. Also gabapentin can cause dizziness or sedation at higher doses. So you may want to talk to your mother’s doctor about re-evaluating her pain and trying something else. Most oral options and stronger analgesics do have risks, of course, but it still may be worth trying something at a lower dose, such as a half tablet of Vicodin. You could also ask if something topical might be an option, it depends on what seems to be the location and nature of her pain.

      Re trying an antipsychotics, a second generation one such as Seroquel usually has a lower risk of certain side-effects, compared to Haldol. However all antipsychotics do raise the risk of death at least a bit, and increase fall risk.

      Good luck!

      Reply

  41. thank you Leslie for such a resourceful article!
    My 70 year old dad in China is diagnosed with AD in early 2015 (symptom may occured a few years before that), he is on exelon minimal dosage daily. his memory loss is mainly short term ones and his cognitive ability is actually not harmed a lot (Dr was surprised). but since 2016 he started to be aggressive to people, paranoid about some old mishap and start to have high sex drive and act aggressively, he would intrerrupt my mom’s sleep for sex, and quoting above mentioned old mishap and accuse her for betrayal. my mom is under great stress and I want to help.

    the doctor recommended 2.5mg polanzapine per day. he just started 3 days ago. According to your article, quetiapine is safer, so should we switch? what do you suggest in other ways to help him? he is not on any other medication, blood pressure (90/140), actively training for pingpong, fit, decreased appetite. when he is in good mood, he acts very normal and intelligently.

    Many thanks,

    Vanessa

    Reply

    • Sorry to take a long time to reply. So, quetiapine is considered safest if one suspects Lewy-Body dementia (LBD), which is associated with visual hallucinations, REM sleep behavior disorder, parkinsonism (stiffness, tremor), and/or dramatic fluctuations in alertness and cognitive ability. People with LBD are very sensitive to drugs that block dopamine, which most antipsychotics do. Quetiapine blocks it less than the others.

      You may want to ask your father’s doctors if they have any reason to suspect Lewy-Body dementia in him. The little bit that you describe sounds like it could be consistent with vascular cognitive impairment +/- Alzheimer’s changes, which is a fairly common combo in older people. (Lewy-Body dementia can also co-exist with either vascular dementia or Alzheimers.)

      You can also see how your father has been doing with his olanzapine…if the side-effects have been tolerable so far, then I’m not sure that there’s likely to be much advantage in switching.

      Otherwise, some people with dementia do become hypersexual. How to best treat this is not yet well-researched. Generally a reasonable first approach is to start with an SSRI-type antidepressant, such as citalopram or sertraline, because these have decreased libido as a known side-effect and they are generally well-tolerated. Here’s a scholarly review that might be useful for you:
      Treatment of Inappropriate Sexual Behavior in Dementia

      In general, I would recommend that your mother get some time off from being with your father…scheduling someone else to take him walking or exercising regularly is often a great help to spousal caregivers. Also helps to learn strategies for coping with the difficult behaviors. Good luck and take care!

      Reply

  42. Dear Doctor Kernisan,
    My Grandmother was diagnosed with moderate Alzheimer about 9 years ago. We found a daily living system that seemed to keep her disease at bay. She lived her days very happy: She walked twice a day, she helped with tiny easy task(kitchen or folding clothes), she did children’s puzzles & math, practiced writing, & read. we kept her busy to avoid her mind from going into negative thoughts. As her disease progressed she developed a sweeter disposition. we kept her medications limited to Exelon patch, namenda, citalopram & melatonin. The last three years, although she spent her days happy, her evenings were tough. She would wake up in states of hallucinations & panic. Regardless of the challenge we did not use sleeping medications. in severe moments we gave her nyquil. Then about two months ago she had one of those episodes during the day. We broke into our emergency medication Doctor had ordered, Alprazolam. Then about three weeks ago, she started with more frequent uncontrollable daytime attacks. Doctor increased her namenda. Then 10 days ago it went out of control in a continuous state of despair, & severe panik. The Alprazolam was only effective for three days and the Haloperidol for only one day. We never expected to go from good circumstances with Alzheimer to Horrific ones within days. Nothing works. If this was your patient what would you recommend? We understand that any recommendation you provide is simply ideas for us to run past our doctors. We just need ideas. We want her to spend her last days with us and outside of a care facility. Thank You,

    Reply

    • Sorry to hear of your grandmother’s worsening symptoms.

      Well, as you can perhaps tell from the article, for my own patients I would not choose a benzodiazepine such as alprazolam as the “emergency medication” to use in case of crisis. Usually in geriatrics, if we absolutely have to use a medication for such an acute emergency, it would probably be a small dose of antipsychotic. We would also start by carefully investigating to see if the older person is experiencing pain or some other trigger for the worsened symptoms. For instance, sometimes older adults develop a new compression fracture in their spine.

      It is hard to say what you should do at this point. If she has been getting benzodiazepines most days, she may actually start to experience some withdrawals or dependence. I would recommend a careful search for triggers and aggravating factors, treatment of pain and constipation if any, lots of reassurance. Sometimes if the situation is really difficult and the highest priority is keeping the older person at home with family, we do use medication — even antipsychotics sometimes — and we do sometimes have to keep increasing the dose.

      If you can find a geriatrician, geriatric psychiatrist, or dementia care expert to help you in person, that would be ideal. Good luck!

      Reply

  43. Dear Dr. Kernisan,

    My husband has been diagnosed with frontal temporal, vascular and some early onset dementia. He is 67 and now in nursing home. They have from the beginning had difficulty getting care done as he won’t allow them. I have always done his care in the evening. He has been there 9 months. He started becoming weepy andpacing back and forth. More than usual.
    He was treated with seraquil but made him more agitative and even with me care was difficult. After arguing with the dr over a month they stopped it.
    So they tried risperidone. It worked great for the behavior and compliance but left him with insomnia. I asked if they could give a sleep aide but was told no.
    After a week they took him off of it as he wasn’t sleeping and waking up other pts. He was moved to a smaller unit.
    He was started on nozinan and is taking 15 mg tid. With 15 mg for break through. He was also started on remeron tid. I just can’t remember the dose. Has not made him more compliant with care. So the took him off the remeron as they felt it wasn’t doing anything and started clonazepam 0.5 bid and now have added valproic acid 250 mg bid. After 5 days I find him more aggressive and verbally billigerant. Cooperation is not much better for the staff, and tonight he hit me when I was doing his evening care.
    Any ideas? I have asked them to try the risperidone as he was like a pussy cat. Also on these medications he is weepy one moment angry the next. Yelling and then apologizing the next.
    Thank you

    Reply

    • Sorry to hear of your situation, it does sound difficult. Unfortunately, it sounds like he’s on lots of medications now, so figuring out how to move forward can be tricky. I cannot suggest anything specific, I would recommend you find a geriatric psychiatrist if possible.

      I had to look up Nozinan as it’s not something widely used in the U.S., it is apparently a low-potency antipsychotic of the phenothiazine class. These are quite anticholinergic and are related to anti-nausea drugs. I’m not sure why this drug was chosen but in the US, geriatricians generally try to avoid anticholinergics in people with dementia. There are antipsychotics that are less anticholinergic, risperidone would be less anticholinergic.

      Regarding sleep and dementia, I have some suggestions here: How to Manage Sleep Problems in Dementia. Good luck!

      Reply

  44. I wish you could be my Mom’s Dr.
    You are so compassionate! My Mom’s Dr. doesn’t even acknowledge she has dementia or early signs of Alzheimer’s but I know she does, she lives with me. My Mom is very stubborn and I tried to get her evaluated and she got so mad at me and refused to go back to complete the evaluation. That was 3 years ago in the beginning stages. She takes absolutely no drugs for anything! Her sugar,cholesterol, blood pressure is all good! Her only health problem in life was IBS/chones and she is slightly anemic. Amazingly since the memory loss no intestinal problems at all. Although she is stubborn and doesn’t like to doctor, she has always been a nervous person. She does have lichen simplex chonicus on her shins. I have taken her to 2 different dermatologists. She is OCD over this on her legs. Constantly looking at it, touching it, which is the worst thing they say she can do. The last dermatologist or should I say PA suggested giving her a anti anxiety drug and told me to ask her GP about it. He persrcibed Zoloft today. Now I don’t know what to do after reading your article. My Mom is stubborn but I do see signs of anxiety,because she knows her memory is gone,but she’s so sweet. This skin condition is madding, her OCD with it and it is worse at night and wakes her up often. The only thing they can give her for it for any relief is a steroid cream. Which I think she is addicted to that cream. I don’t want her to take unnessary drugs. And one side effect of Zoloft, some are intestinal problems. Also I certainly do not want the Zoloft to worsen the memory issues. I do think she is depressed too. She never wants to leave the house. I ask her every day to go somewhere and she won’t! She will only go to the Dr. and occasionally out with us to meet my brother for dinner. I have been giving her Tylenol PM once in a while, when her legs really act up. Should I stick with that and forget the Zoloft? Another bad thing for me is, I have no formal dementia diagnosis and my Mom can still hold a conversation, but if you asked her what she ate 5 Min. ago she can’t remember. She won’t remember to eat, if I don’t make it for her. She doesn’t want to bath, fights me on that, can’t match her clothes or pick out what to wear. It’s all signs but her Dr. acts like he thinks she’s fine, because she can small talk.

    Reply

    • Sorry if your mother’s doctor isn’t acknowledging her cognitive issues, that must be very frustrating. If you’ve noticed she’s forgetful, can no longer pick out clothes, and other changes, then that does sound pretty concerning for dementia. Her not wanting to leave the house could be depression but it could also be apathy, or just the fact that she feels uncomfortable and stressed in unfamiliar situations, that is very common when people develop dementia.

      Sertraline (brand name Zoloft) is an SSRI-type antidepressant and it can help with anxiety. You could give it a try for 4-6 weeks and see if it improves things, if not it can usually be tapered and stopped without too much difficulty. Steroid cream does eventually thin the skin and older adults do get thinner skin, you could ask the dermatologist if it’s worth being worried about that. I also wonder if you could keep her from scratching by using moisturizing cream or even an ointment, and perhaps covering up her legs so that she can’t scratch?

      Tylenol PM does contain diphenhydramine (brand name Benadryl) which is quite anticholinergic and tends to make thinking worse in older people, so we usually recommend older adults avoid such drugs, especially if they are having memory problems. There are topical antihistamines that you could ask the dermatologist about, if the issue is itchy legs.

      Lastly, even if you don’t have a dementia diagnosis and are having difficulty getting one, I would recommend looking for a dementia caregiver support group, either in-person or online (or you can join both). You are going through a lot, and a group can help give you ideas and provide you with emotional support. Good luck!

      Reply

  45. Thank you for your article. Not many want to deal with the actual truth behind these medications, so it was refreshing to read this.

    I care for my 87 y.o. mother diagnosed in 2007. She has been in three care facilities, two psychiatric stays which while in one, she almost died from anaphylactic reaction to drug Rozerem. So I moved her in with me and found a medical doctor to work with me on finding the right solution. (she is highly sensitive to medications and has many allergies).

    This is what I know: Zyprexa, trazadone, ambien, rozerem, Depakote caused paradoxical effects. Tolerated Haldol and Risperdal but became very Mean.

    So, this is what we now do, which is not recommended, but it is the only thing that has worked to reduce her panic, anxiety, emotional distress daily occurrences: ( I likened it to seeing someone in pain of 10 or more on pain scale)

    Xanax 0.5 mg. noon. Bedtime: Xanax 1.0 mg, 2 Tylenol pm. and 10 mg. Melatonin

    Her cognition is worsening, delusions present and she is so weak = but it calms her enough to function better and she sleeps through the night now and awakes to toilet once. ( I get up to help her because she is so confused and weak)

    I would like to try other med besides the xanax but I feel the doctor is tiring and he keeps telling me to place her somewhere. Placing her is a whole other story, we’ve been there, done that. The last time we had finally found a true caring and knowledgeble facility, but 2 months later they ask us to move her out as she was too disruptive to other residents.

    Any help in locating a virtual psychiatric physician would be appreciated as well.

    Reply

    • Thank you for sharing your story. Sounds like you and your mother have been through a lot.

      It’s true that generally in geriatrics we don’t recommend a benzodiazepine such as Xanax, since benzos have many risks and often make confusion worse. That said, in the end one has to consider an individual’s situation and medical history, and in some cases, the benefits of using a benzo seem to outweigh the problems and risks. In particular, if a benzo is part of the formula that keeps an older person quieter at night and this allows a family to keep the person at home…that is a big benefit, because as you note, it’s not easy to find a good facility and transition an older person with dementia and difficult behaviors.

      I don’t know of any virtual psychiatrists, you would have to search online to see if anyone is offering such a service in your state. Telemedicine is allowed in most states, but usually the clinician has to be licensed to practice in the state where the patient is located. Good luck!

      Reply

  46. Hello Dr. Kernisan, My 92-year-old grandfather has Alzheimer’s (stage 6 I believe). After his wife was put in a convalescent facility his sundowners escalated. He became increasingly agitated and hostile, pacing and banging on all the doors in his part of the house (downstairs). He has suffered from sundowners for years but no matter how upset he would get he could always be re-directed by playing billiards with him. His delusions and agitation got so bad I was forced to take him to his Dr. who prescribed Quetiapine. He was started out at 25mg but this had no effect. It was upped to 75mg which seemed to calm his agitation and anxiety. Is this too much for this type of drug?

    Reply

    • Sorry to hear of your grandfather’s agitation. We do strive to avoid using these medications, but when all else has been tried and failed (including treating for pain and constipation), it can be reasonable to resort to antipsychotics, especially if it’s necessary to keep the person living at home with family.

      From 25mg of quetiapine, we would often try a 50mg dose before moving on to 75mg. The higher the dose, the higher the risk of side-effects, so it’s good to try to find the minimum necessary dose. What that is will vary from person to person. If your grandfather seems better on 75mg, it’s probably reasonable to continue or you could ask the doctor about trying to reduce it down to 50mg, to see if that is enough. Good luck!

      Reply

  47. I am worried about my mom she has been diagnosed with MCI I think she is taking seroquel but she is still having trouble with paranoia and delusions. I was thinking of asking her doctor if maybe she could take an anti depressant instead but the seroquel helps prevent her from sundowning so much any suggestions?

    Reply

    • Hm, I would say that it would be unusual for MCI alone to cause frank paranoia and delusions. You may want to re-open the conversation about what is the underlying cause of the paranoia and delusions; I discuss the common causes here: 6 Causes of Paranoia in Aging & What to Do

      How to treat her paranoia really depends on what the doctors think are the underlying causes or exacerbators. Anti-depressants sometimes improve agitation in people with cognitive impairment but I wouldn’t expect them to be as effective as antipsychotics, for delusions, paranoia, hallucinations, etc.

      Regardless of what medications she is on, I would certainly recommend learning about and practicing non-drug management of difficult dementia behaviors. We have an article on that here: 7 Steps to Managing Difficult Dementia Behaviors (Safely & Without Medications). good luck!

      Reply

  48. This is an excellent article; and the comments and replies are just as helpful. My mother is 75 and has late stage Alzheimer’s. She has been anxious and delusional for many years. We finally tried medical marijuana and it has helped SO much with the anxiety. She can finally just relax and be happy. We are still having a major problem with hygiene and toileting. She becomes very combative. I think we are going to have to move her to a memory care facility because it takes 2 people to clean her up and we just can’t manage. It is very sad because otherwise, we could keep her at home.

    Reply

    • Thank you for your comments on the article, and an even bigger thank you for sharing your story and your experience.

      Medical marijuana is new territory that doesn’t yet have much of a research base. So we don’t know for sure what are the risks for short-term or long-term. But for difficult dementia behaviors, I think it is reasonable to try medical marijuana, especially if it’s about stabilizing the living environment.

      Before you move her to a memory care facility, you may want to see if it’s possible to hire a dementia behavior expert locally, to come to your home and see if it’s possible to come up with an approach that works better for your mother and your family. Good luck!

      Reply

  49. Dear Doctor
    My mother is 92 and developed Dementia about 10 years ago. We live in Montreal her neurologist started her on a trial medication that slows the progress of the disease it seems to have worked. I don’t have the name now. My mother was in hell as a young teenager (aushwitz). It’s almost a year now that she developed a severe PTSD that they are coming to get her, hang her outside, she does crazy things because that’s what this are telling her to do. She hides food in her panties etc….. Any suggestions? Her PCP forwarded me your article

    Reply

    • I’m sorry to hear of your mother’s situation, especially since her perceptions sound like they are causing her a lot of distress! I would recommend having her seen at a specialty center in Montreal, either for geriatrics, for geriatric psychiatry, or for dementia. You could also try to see if you can find a dementia behavior specialist for a consultation, to see if they can help you identify any triggers or contributors to this.

      Many difficult dementia behaviors can be managed without antipsychotics but in certain cases, especially when the person is having serious and distressing delusions, we do end up trying antipsychotics. But I cannot say if that’s the route to take with her, she really needs to be assessed by someone who can work with your family closely. Good luck!

      Reply

  50. First Dr. Kernisan, I would like to thank you for responding to so many posts I have seen. As a medical professional and a family member dealing with cognitive disorders with my elderly mother, it is clearly discernible that the majority of patients and families dealing with these issues have to rely on PCPs and stroke interventionists who lack the knowledge of pharmacological treatment, resulting in the position I am in – wanting to do best for my mother, with very little understanding or guidance.
    So here I am asking your professional opinion – My mother is an 85 y/0 female w/ a very complicated history. 13 yrs ago she suffered a ruptured aneurysm in her brain which should have been catastrophic, but after 3 coils and 1 1/2 yrs of therapy had a 98% recovery. After being independent, 8 mths ago she suffered a thrombolytic stroke – resulting in moving to assisted living. 3 mths ago she suffered another thrombolytic stroke w/hemiparesis and a seizure, received TpA and did well. Then while hospitalized fell and struck her head causing a C7 Fx and a TBI. But she has a strong will, and we are now back in a Memory unit, functioning fairly well (fall risk but highly monitored) .
    She is currently treated for HTN, Seizures w/ Keppra @ 500mg bid, and Prozac 10mg for depression.
    Previously neurologists were using Seroquel low dose for hallucinations, but a 2018 study in the NEJM showed no benefit to antipsychotics, so they switched to Prozac.
    Recently she has begun to hallucinate again. While cognitively diminished, she still maintains a pseudo quality of life. Her hallucinations are now impacting that because of physical outbursts at night and paranoia.
    Her PCP and Neurologist literally have asked me as to what I would recommend or would just “shoot from the hip”.
    I did not see Prozac as a listed drug in your blogs for vascular dementia patients. I completely understand that you can not treat a patient through a blog, so I only ask have you seen any pros or cons with Prozac in hallucinations? This way I will be more informed when I meet with her doctors.
    Thank you

    Reply

    • Sorry to hear of your mother’s hallucinations. Fluoxetine (brand name Prozac) is an SSRI-type antidepressant, similar to citalopram, but in geriatrics we tend to use it less because it has more interactions with other drugs, compared to the citalopram or sertraline.

      SSRIs do not particularly treat hallucinations, although in some studies citalopram seems to help with neurobehavioral symptoms and psychosis. Also, SSRIs take 6-8 weeks to have an effect.

      Honestly, for significant hallucinations that distress a patient or really affect the care environment, we would first check for exacerbating factors (pain, sleep deprivation, delirium, etc) and then if it seemed a medication was necessary, most geriatricians would probably use a low-dose antipsychotic, such as rispderal or quetiapine (whose brand name is Seroquel).

      I am not sure what 2018 NEJM article you are referring to; they did publish a negative study on antipsychotics but it was for ICU patients with delirium, so not relevant to your mother.

      Antipsychotics should not be first line therapy or used without first trying other options. But sometimes, they are reasonable to use because alternatives have failed. They do help some patients with hallucinations, so that benefit may be worth the risk of falls and also the additional mortality risk associated with them. Good luck!

      Reply

  51. Thank you very much – this is extremely helpful in assisting in our next step and direction. Also, thank you for pointing out the study that was referred to me and I referenced was the ICU study you referred to. My mother was placed on 12.5mg Seroquel after hallucinations last year post her first stroke. She continued that – with no untoward side effects – until her new current neurologist took her off it and switched to Prozac. I will be meeting with her PCP next week. Thank you again !
    Fran E.

    Reply

  52. I have been living with FTD for a decade, and the most scary and debilitating symptom is overwhelming rage. The worst trigger is noise. I was doing quite well and considered my home to be my sanctuary until next door and across-the-street neighbors moved in; one of them uses loud gas yard equipment and the other bounces a basketball and plays loud bass music. I have no escape, and when irritation turns to aggression and escalates to rage, my behavior goes from thoughts and mutterings to cursing them out loud and can culminate into a screaming rants as i walk toward their houses to verbally kill them. Thank God for shoving me into my house and restrainimg me,

    For years my doctors have continued to up dosages or change meds to even stronger antipsychotics. My current menu contains
    450 mg trileptal twice a day,
    69 mg adderalll xr
    60 mg prozac,
    100 mg ultram,
    200 mg trazodone,
    10 mg ambien, and
    10 mg xanax twice a day

    I have added senna and magnesium for chronic constipation which sometimes helps.

    i am so sorry for this rambling but there is a point…I have never heard you mention that there are specific strains of marijuana found in clinical trials which provide great relief and temper aggression/anger (and other behavioral symptoms) in many forms of the dementias. My wish is to minimize and /or hopefully eliminate the nasty meds, their side effects, and the monthly expense on my fixed budget.

    Thanks for listening.

    Reply

    • Sorry to hear of your FTD diagnosis, that must be a challenge to live with.

      I don’t write about medical marijuana in my articles because I generally share what is considered common practice in geriatrics, and cannabis products are not currently common well-established practice. I have looked it up a few times in response to reader comments; basically, we don’t yet have the research base we need.

      Personally I think for people with significant progressive conditions, it’s not unreasonable to consider whether a marijuana product might provide some symptom relief. I would recommend discussing your interest in trying this with your usual neurologist or health provider. good luck!

      Reply

  53. My comment is not exactly related to this blog, but was the closest related subject I could find under which to post. My mother in law recently fell and cracked a disc. The doctors have told her she will be a in a lot of pain for around two weeks and then we’re hoping the pain starts to get better. In the mean time, she doesn’t want to take the opioid medication she was given because if gives her terrible nightmares and also makes her very constipated. The doctor tried to lower the dose and combine it with Tylenol to see if that might help, but she said she still had the symptoms and now won’t take it. Meanwhile, she’s in a lot of pain. So my question is, what are some of the most effective methods for pain management for older individuals when they might be sensitive to some of the more common choices? She is 83 year old and also very tiny and frail…I guess I’m also wondering if common physical characteristics of being elderly play-into medicine challenges/reactions?

    Reply

    • Sorry to hear of your mother-in-law’s fall. Acute pain like this can be tough to manage. Yes, as people become older, they often become much more susceptible to side effects. I do sometimes use low-dose opiates for these kinds of situations. For someone tiny and frail, a half-tablet might do. Although people may have some bad reactions to one type of opiate, they often tolerate a different one better, so sometimes switching helps. Re constipation, the answer there is to take laxatives when taking these kinds of pain medications!
      There are sometimes other options to consider too. Topical medications (creams, gels, patches) have relatively few systemic side-effects. Most oral medications will come with risks and side-effects, but if the pain is really bad, it can be worth considering.
      Really, the key is to keep working closely with the health providers and keep researching options. Good luck!

      Reply

  54. I am 58 diagnosed with pca. I am very scared I don’t like medicine I had insomnia for 8 months after a fall on ice and hip surgery I now sleep ; to 6 hours but I scored low on cognitive test I just started aricip I don’t like pills I am so depressed how did this happen I was healthy before I fell now some days I can’t write my name or write checks for bills this is a horrible way to live no support groups in my area I a. lonely and scared

    Reply

    • I’m not sure what is “pca” that you are referring to. But sounds like you’ve been given a worrisome diagnosis, and that can be very hard to adjust to. My main recommendation would be to look for support groups, for people with your diagnosis. You can probably find some online, and they can be real lifelines, especially if there are no groups in your local area. Online, you should be able to find groups specifically for relatively young people who have a cognitive issue. Good luck and take care!

      Reply

  55. My expertise includes Medicare, Medicaid, 340B, health reform and more on,Your site is absolutely fabulous. I recommend it to my Home Health Aides and my patients the same,Very helpful for Senior Care providers and Caregivers! for more info

    Reply

  56. Hey Doc,
    My grandfather is suffering from Dementia Alzheimer from last 2years, in the beginning he was easily handle with care but now from last 3months he is unstoppable he wanders whole day like he wakes up after the sun rises, mostly 7am and starts walking and walking and continuously walks till 8pm (Time goes up and down). From last week its getting worse day by day. He starts beating himself more than before hitting his head in the wall, bashing doors and asking everyone who crosses the street to come near him and accompany him, we gather around him to give him company but he runs from it and asking others to come and join him, now he is not sleeping at night, medicines are not effective no t even with heavy dose, yesterday he woke up at 8am ate breakfast had his medicine and after 12pm it stopped effecting his mind and he started wandering like aphid you can say and he didn’t sat for a single second whole day and wasn’t ready to sleep at night too, we took him to the hospital and had him two dosages of Injections of serenus and fenergan but they worked for 5minutes on watch but after that he was like that again beating himself we tried to ask him what’s happening or why is he doing this ajd his answer was the old one that i didn’t do anything everything is good, i swear to God i don’t know ill do what you’ll say and after few seconds he forgot everything he said and doing that again. After 4am he was extremely exhausted and fall onto bed and slept barely waking up after every 20minutes then again i told him to sleep again and again, at 7am he was standing in front of the door saying i need to go home. Kindly tell me what to do which medicines should we try, what precautions we should take and how to get him sleep when he is so much hyper. We tried every possible solution.
    Ill be obliged for your concern.
    Regards.

    Reply

    • Sorry to hear of your grandfather’s difficulties, it sounds very tiring and stressful for everyone.

      Unfortunately, it’s not possible for me to tell you what medications to try; you will need to work with whatever health provider prescribed his current medication. It does sound like he has a lot of energy in some ways; for some dementia patients, it helps to give them an opportunity to walk and discharge that energy. You will also want to ask the health providers to help you make sure he’s not in pain or constipated. A structured and regular routine with exercise and activity is good for many people with dementia. Good luck!

      Reply

  57. Very good article. Our mom is 96 and in good heath but has dementia. The Demetria is getting worse and she is now being combative with health care workers and hitting others. She also paddles around the floor (meaning walking in her wheel chair) all day long. With our consultation, the doctor prescribed seroquel. Getting the right dose was based on trial and error but the drug was not working. Moths later, the agitation increased and we agreed to try depakote. Small doses first but no change. The dose was increased and still no change. The dose was increased again nut turned out to produce a chemical restraint and has been stopped. We are lucky she is in a wonderful place with nurses and doctors on site that truly care for her. We are now considering next steps. I will suggest constipation and depression for discussion. Don’t know where we will go from here but maybe try medical marijuana or some simple anxiety meds. Thank you Doctor.

    Reply

    • Sorry that you’re having difficulty figuring out how to help your mother, but glad if this article was at all helpful. Along with considering the possibility of constipation, you could also consider pain and see if she’s better on a low dose of pain medication.

      You could also see if getting her more activity would help, as it sounds like she may be a bit restless or have extra energy that she needs to direct somewhere.

      I can’t particularly recommend medical marijuana as there isn’t yet enough of an evidence base, but anecdotally it seems to help for some older adults. And if she is 96 with dementia, I think it’s reasonable to try a variety of options and just see what brings her a little daily relief…the long-term consequences are much less important to think about at this point. Good luck!

      Reply

  58. My mother in law is 99 years old with dementia and has been in a memory care facility for 15 months. She was diagnosed with dementia several years ago and was able to stay in her home until she was no longer able to take care of herself. She has become increasingly agitated, belligerent, and anxious although the staff at the facility have tried many of the non-medical approaches you’ve suggested. Recently, the facility doctor suggested trying Depakote to see if that might help. The only medication she takes is thyroid hormone (her thyroid was removed 50 years ago), and after learning about the possible side effects of Depakote and other possible medications, we are concerned about giving this type of medication at her advanced age since she has lived most of her life with little to no medications. We would consider some type of medication to help her, but we’re not sure where to start. What would you suggest?

    Reply

    • Sorry for delayed reply, it looks like we had some comments fall through the cracks when doing our responses.

      I’m sorry to hear of your mother in law and can certainly see why you are concerned. If non-drug alternatives have been tried and she is really very distressed, then it’s reasonable to try a medication, but unfortunately, they will all come with risks and side-effects.

      Personally, I have much more experience prescribing small doses of antipsychotics than I do with depakote, so that’s where I usually start. So for instance, 0.25mg of risperidone or 12.5mg of quetiapine. Please note that these doses are quite small and are much smaller than the usual starting dose,, but that’s because in geriatrics we usually say to “start low and go slow”. If she doesn’t seem to respond, the dose can be increased. Good luck!

      Reply

  59. Dr. Kernisan
    Thank you for the wealth of information and assistance this article and comments provide. My father was diagnosed with vascular dementia a few years ago in his early 60’s. He’s 67 now and it’s progressed fairly quick. We are currently dealing with paranoia related to his reflection and his shadow. Have you heard of this before? He’s literally convinced his reflection/ shadow is a bad guy. It is a struggle for my mom to keep mirrors covered or try to distract him when he’s particularly agitated by the shadows. He’s been prescribed seroquel and until reading your article I was convinced the doctors had it wrong. Thank you. Sadly, we don’t see much improvement and it’s heartbreaking that we will have to make the decision to put him in a facility in the all too near future.

    Reply

    • Difficulty with recognizing oneself is not that uncommon in dementia, and it is very challenging as you describe. Delusions in dementia are best managed with a multifaceted approach: caregiver support and education, environmental changes (like covering the mirrors) and often, medications. I made a short video about so called “responsive behaviours”, which you can view on YouTube, here.

      You can also read Dr.K’s answer to someone in a similar situation.

      Medications like seroquel (quetiapine) have a place in managing responsive behaviours, but it has to be done with other approaches as well. If the seroquel isn’t working, the issue may be that the dose is too low, or that another medication of the same type will be more effective.

      The behaviours that come up in dementia are almost always transient – they don’t last forever, even though it feels like it at the time. I hope some of these suggestions are helpful and I want to commend you for reaching out to the website to try to get help for your parents.

      Reply

  60. Mom 93, dementia mild then had a TBI. Personality changed long story short she is in a memory care. I had her off the Depakote for several months and only on Memantine. She also wanders all night and sleeps all day which I think is her major problem. Her agitation and aggression is increasing lately and they want to start back on Depakote and add Seroquel. I’m not really wanting to cloud her and take away any clarity she has left so I want them to try Zoloft and Melatonin. I think if we can take the edge off and try to change her sleep cycle it might help. She is starting in the later stages of the disease, hallucinating more, sleeping much more, trouble with speech, etc. She remembers everyone and everything so I’m trying to not turn her to much with antiphycotics, etc. Any thoughts? Thank you.

    Reply

    • Hi Mary Ellen
      In the more advanced stages of dementia, the changes you describe are very common – day-night reversal, responsive behaviours that can appear aggressive and restless, and personality changes. Most of the time medication alone is not the answer and as you point out, all psychiatric medications can have unwanted side effects.

      Although we generally try to avoid antipsychotics (like seroquel) in older adults with dementia, when I see patients with disturbing hallucinations, they can sometimes improve quality of life.

      Unfortunately, in later stage dementia, every decision about medication is going to involve a trade-off between therapeutic effects and side effects. I usually advise looking at any environmental or behavioural strategies that can be used along with medication. Early referral to palliative care can also be beneficial, to address any physical symptoms that can drive behaviour.

      Reply

  61. Hi Doctor,
    I have been DX with mild frontal lobe atrophy and MCI 1 1/2 years ago @47 years old. I am currently taking 7.5mg of mirtazapine at night since insomnia was an issue. Now I am get a full night’s rest. Upon walking I am usually calm. Then about mid day I struggle with anxiety or agitation mixed with depression. I have been prescribed SSRIs, Depakote, Lamotrigine, Buspar which were either unsuccessful or the side effects were intolerable. Ativan .5mg is only thing that has worked for me but I take sparingly since I am fully aware of its dangers. Now my Dr. wants me to try Abilify but I’m terrified to even start it. But my symptoms seem to be increasing. Have you had any success stories with this med? Also does frontal lobe atrophy mean dementia? Any response is appreciate.

    Reply

    • First, frontal lobe atrophy would most likely be a finding on a brain imaging study, like an MRI. Atrophy essentially means shrinkage, and can be due to a number of causes: stroke, neurodegenerative disease, like frontotemporal dementia, or it could be present from birth. By itself, a finding of frontal lobe atrophy is not enough to diagnose dementia. The diagnosis of dementia requires a complete assessment of a person’s function and cognition, which is often performed by a Geriatrician, Psychiatrist or Neurologist.

      Abilify, or aripiprazole, is an atypical neuroleptic (aka anti-psychotic, or tranquilizer). It can be used to treat delusions, hallucinations, and is also used in depression and bipolar disorder. I have used it with some success to augment antidepressants in older adults with depression, but as a Geriatrician I don’t treat those in a middle-aged age group in general.

      When I have a patient who’s “terrified” of a drug, I usually recommend talking to a doctor, pharmacist, or other health professional about it, rather than looking on the internet.

      Most of the time, medication for anxiety and depression can be very effective, but have more chance of working if they’re part of a larger management plan that might include exercise, behavioural therapy, mindfulness, good nutrition, and avoiding things that might be toxic to the brain, like alcohol and illicit drugs.

      Reply

  62. My mum is 73. This is the second stroke,affected the brain,shouting disturbing the environment,the first one she head loss of memory,the second one the same,but with short,saying abstract things like she is travelling ,they should wait for her to enter the bus,such works.She has been given Risperidone,but still shouting,do not know what to do again or give to her,when she starts talking and shouting. I want to cry,please I need your help,the drug to give her again to calm down,thank you.

    Reply

  63. Mom is 90, she started displaying signs of dementia 5 years ago. Initially we treated the depression and anxiety with Sertraline, very gradually increasing dose as needed. After a fall started Remeron in rehab. Working with Dr, we were at 50mg sertraline and 15mg Remeron. She was having increased frequent episodes of agitation, anger, delusions. We are very in tune to her physical state watching for UTI, constipation etc and we’ve learned to support her with words and objects (never try to change her reality, distract and assign a task etc). The past few weeks she became uncontrollable, broke the front door trying to get out etc. Dr stopped all
    Meds and started 50mg seroquel, she’s calm, peaceful and although pretty “flat” emotionally and frequent naps she’s no longer in distress. It’s a trade off but her outbursts, anger etc were very distressing for her and us. My question is should I talk to Dr about lowering dose?

    Reply

    • It sounds like you’ve had a real journey with your mom’s symptoms, and that’s not uncommon with dementia.

      We usually try to use medications like quetiapine for the shortest time possible, and at the lowest dose possible, but they’re sometimes needed for a person’s quality of life. In my practice, if a person with dementia has been stable on a dose of quetiapine for a few weeks or months, and there’s no other obvious treatable cause for the change in behaviour, I will often try to gently reduce the dose, or even stop it.

      At the same time, we do try to see if there are any environmental changes or approaches that the caregiver can adopt that can reduce the triggers for the behaviour responses. If these approaches can be implemented, medications can be used at lower doses and sometimes not at all.

      Reply

  64. Dr K – My mother (87 with moderate/late Alzheimer’s taking Memantine) began taking low dose Lexapro for depression a couple years ago. She has been living with me for 3 years after breaking a hip, and delirium significantly exacerbated her Alzheimer’s while in the hospital. She was prescribed Trazodone when she was getting up all through the night, obsessed about wanting to go home to her mother’s house, and became verbally and physically aggressive about 4 months ago. Meds were started after ruling out any physical cause. About a month ago, she became increasingly aggressive and began going door to door trying to get out of the house. She did manage to get out a couple times (one time slipping through the rails in the ramp!) and fell for the first time in 3 years. Thankfully, she wasn’t hurt. Her Trazodone was increased to 100mg but behaviors continued. I decided to take her for testing again at Primary’s office and found out she had a UTI. Her behaviors drastically improved as the antibiotic worked its magic. Unfortunately she fell again a few days ago as she is quite groggy and unsteady when she gets up. After X-rays at the ER, she fell again in the middle of the night and ended up back at ER for stitches. She then needed repeat X-rays before seeing Orthopaedic as she had been unable to walk since the first fall. I had planned to contact the neurologist again to discuss decreasing the Trazodone due to increased falls and grogginess that had been lasting into the afternoon. I thought maybe the antibiotic had been the cause of trying to elope and aggression. It has only been a few days, and mom is now back to using her walker with someone walking next to her. For the past couple days, she has laughed and seemed more like her old self. Now I’m wondering if the meds just needed to stabilize or something. Any advice would be greatly appreciated. Thank you for all your helpful articles and support.

    Reply

  65. Hello. Very interesting to read. My sister is 76 years old. Never been sick. Dental Hygentist all her life. A couple years ago her memory was not so good. Her family took away her stressers, job, car, and gained Power Of Attorney. Which she was happy to sign over. Her husband had died of Leukemia years ago. She worked and had ownership of 5 properties, rentals, bank accounts. It was too much. Her newphew got POA and it took him a year to get all her finances in order. She went to a memory care place and did well and was social. But then she’s had to change places 4 times, and move back south. That was when she got agitated, angry, broke a glass and went after someone. That place kicked her out. Then another place took her and put her on some meds., Then THEY kicked her out. Sent her to in-patients psych. Meds were introduced but it was a short time stay. Now she is in long term pych. My nephew went to the team meeting and finally they gave him the Prelimainary Diagnosis (I am a Social Worker). I told my nephew, make sure you get her diagnosis as well as her medication regimum. Her preliminary is: Psyzoid – Affective Disorder with secondary diagnosis of dementia. That makes more sense. They are trying to stabilize her on meds which takes 8 weeks. But I want to be proactive — and know WHAT medication she is on for how long, has it been effective? I, myself, have had Major Depressive order and Generalized Anxiety Disorder forever. Only until CILATOPRAM (Celexca) was invented, have I been normal. No side effects. My family calls it my happy pill. I was also on Ativan for a few years, but got off that. As far as insomnia, I found TRAZADONE is the miracle for that. 150 MGS every night/ or every other night works if you immediately close your eyes. You get your deep remember RIM sleep and awake feeling great. TRAZADONE years ago was only for depression. But now is used for insomnia. It is not addicting, and the anti-depressant aspect is like 2 good things in one. I am leery of anti-psychotics for my sister. She’s never been on medicine her whole life. I agree with you, the stressors of being moved 6 times in one year can be a relative preceptor for her getting angry. Your overall impression is greatly appreciated. It sounds like my family has to be on these doctors ass’s every week, and monitor her psych meds and progress ourselves. I know slot about pharmacologyy, but my nephew has been the head of decision making. And if I call up and make waves, it might not be so good. They all day it’s private and the records are closed. But I’ve been in Clinical Work all my career and I can get the rights to my sister’s records through a simple court order or a petition., There’s all ways to do anything. At least my nephew finally was able to get a diagnosis out of these pychiatrists. There are medications which are miracles to Schizophrenic patients who live in the Community now. However Scidzoid/Affective medications are all over the place. I don’t want her knocked out on Thorizine or Haldol. Small doseages of a benzoyl like valium, or Zanax won’t damage her, and may relax her fears and anger. Anti-psychotics, they have all kinds of wacky side effects, torrents , change in speech patterns. TThank you for your time, doctor. We should really be on top of her chart every week — that’s what I’m getting from you. And her doseages should be LOW, LOW, LOW. Correct? Much appreciated for your help.

    Reply

    • Your sister is lucky to have such a concerned and proactive family!

      It can be frustrating to get information about a family member’s medications, especially if the regimen is changing frequently, which can be the case if the person’s medical team is working to stabilize behaviour and other symptoms. You’re right that for some, benzodiazepines can be helpful, especially if there’s panic or sever anxiety attacks, but we do try to avoid them in older adults, because of the risks of falls and further cognitive decline. Dr. K has a good article about medications which you can check out here.

      I hope you can work with your sister’s team to get her on the best medications and feeling more like herself. Thanks for sharing your story.

      Reply

  66. Hi I am seeking advice for my mom who is 76 years old. She only started showing signs of forgetting things this year and last month she lost her money which she hid away. She was obsessed with finding her money and then she couldn’t sleep well. We noticed the change in her behaviour and consulted a mental health specialist. He told us that my mom is having depression as well as exhibiting early signs of dementia. He then prescribed the following medications for my mom for twp weeks. But I noticed that she has not improved at all but became worse. Prior to this she can function normally in taking care of herself but now she has difficulty in walking, shuffling instead and need our assistance in bathing her. I noticed that she is like in a daze and can’t talk clearly. I am thinking of removing her from the medications instead. Please advise on the medication that was prescribed for her and what should I do to help her? Risperdal 1mg x 3 times daily, For night : 1. Zydis 5mg+Apo-Lorazepam 1mg+3. Lexapro 10mg+4. Torpezil 10mg. Your advice is much appreciated. Tq

    Reply

    • I’m glad that your mom was able to get a mental health consultation, but the list of medications you provided is not one I would usually use in an older adult, at least not starting all at once.

      The Lexapro is an antidepressant, and the zydis and risperdal are both antipsychotics, or major tranquilizers. They can cause side effects that mimic the symptoms of Parkinson’s disease, like slowing down, unsteadiness, and shuffling. Torpezil may be a form of donepezil, which is a dementia medication, and lorazepam is a benzodiazepine, which we usually try to avoid in older adults, because of the increased risk for falls and confusion.

      It can be risky to stop medications without medical advice and supervision, but I would definitely encourage someone in your position to review the need for those medications with the doctor or pharmacist, and let them know what you’re observing in terms of side effects.

      You might be interested in this article about depression in later life that we recently posted.

      I hope your mom is feeling better soon.

      Reply

      • Thanks for your reply as I find it helpful and gave me the information that I am seeking to help my mom get good care for her mental health.

        Reply

  67. I have just read this info it was great! My sister now lives with me and dementia and is in my care. It answered so many questions I had about her meds and how to deal with memory loss and behavior. I would like to know how I can get a copy of this article I just read. It would really be great for me to have on hand. Thank you so much!! Oh my sister is 82

    Reply

    • Hi Martha and I’m so glad you enjoyed the article and found it helpful.

      If you have access to a printer, you can print a version of the article directly from the website (or any article on the site). At the very bottom of the article is a little green icon of a printer on the left hand side. Clicking on that will take you to a printer-friendly version of the blog article.

      You can also bookmark the page with the article you enjoy in your web browser, so that you can access it easily online.

      Reply

  68. Hi – looking for advice on my 73-year old mother, who was diagnosed with Alzheimer’s about 8-9 years ago. She’s cared for by my 80-year old father. They just moved halfway across the country to be closer, and shortly after they moved she started declining rapidly after being pretty stable for several years. Now she keeps insisting her husband isn’t the man she married, and sometimes he is the man she married but she wants a divorce and she constantly is packing suitcases to try and leave him. She doesn’t have a local specialist yet. This has been occurring daily for about the last 2 weeks. She wakes up in a panic and then her symptoms calm down later in the day, but then she also has many complaints about mouth pain without a physiological cause that can get her worked up and miserable in the afternoons. Her new PCP prescribed a low dose of Seroquel which seemed to work, and now they’re trying an extended release version since her delusions and agitation are far worse in the morning and my dad was concerned about sedating effects of the original dose given too early in the day. So in this case, we are fairly certain that it’s the recent move and the new house (which has had contractors coming in and out working on things) that brought on the rapid decline. But what do we DO about it? She seems to hate the house and keeps calling her children to help her leave her husband and take her home, but then if we take her anywhere she almost immediately wants to get back to her husband (and he’s the right version of himself, until the next time the cycle starts). We’re all confused and overwhelmed and could use some advice. Do we just ride it out on the Seroquel for now? If her external environment calms down then are there other recommendations to try in conjunction or instead? Thanks in advance.

    Reply

    • I’m sorry that your mom is having trouble transitioning to a new home, and that can be typical in moderate to more advanced Alzheimer’s.

      The move may have been a trigger, but it’s possible that she was already progressing before the relocation and now it’s more obvious with the closer proximity.

      Medications like Seroquel are often used for the type of behaviours you describe, and they are tranquilizing anti-psychotics. We use them cautiously in older adults with dementia, and try not to use them long term. There’s really not a lot of scientific evidence that they’re very effective for responsive behaviours.

      I made a YouTube video about responsive behaviours that might be helpful.

      In the end, a person with dementia has a limited capacity to change their behaviour, and it’s more effective if the family and care partners can modify how they act around the person instead. This can work better with professional guidance – such as with a behavioural consultant if one is available in your region. A good start is to keep a record of what you observe. Patterns may become apparent, and can give you some clues about how to redirect and calm your mom.

      I hope that with time, your family can get into a new routine and that your mom feels better.

      Reply

  69. hello, I am a 40 year old female but my ageing mother says i’m bullying her all the time, its not true.
    my mother is 78 and living in retirement home. she is complaining that i am abusive towards her, its not true, over the last year mum’s memory is slowly getting worse, she barely recognises me. a creates such a problem that its embarrasing to take her out in public. she will she will also critisize me for my reaction to her bad behaviour that its imposiible to reason with her. sadly we lost my dad due to cancer 30 years ago and i’m thinking she is still traumatized from the event that she will now claim dads death is all my fault, dad passed away of bowel cancer 30 years ago from complications with not enough treatment back then what do do do now. please help.

    Reply

    • It sounds like your mom is experiencing some responsive behaviour of dementia. I made a video about that which you can watch here: https://youtu.be/o-pmHQdKzq0.

      Some of her behaviour may be related to unresolved grief as you mention, but could also be more related to another unmet need. I’m sorry that you’re bearing the brunt of her verbal expressions, and remember that arguing back is rarely effective and can make things worse. If your mom has a family doctor, asking for a referral to a Geriatrician might be helpful. There may be medications that could help, and a Geriatric assessment might help determine the underlying issue.

      Dr. K has recently published a book called: “When Your Aging Parent Needs Help: a geriatrician’s step-by-step guide to memory loss, resistance, safety worries, and more”. This is a practical guide to how to start helping an aging parent, even when you don’t know where to start. You can learn more here:https://betterhealthwhileaging.net/bhwa-education-and-support/helping-older-parents-membership-waitlist/ . The book can help you to set small goals and make progress towards helping your mom.

      Reply

  70. My grandmother fell in Dec 2021 and fractured her hip. She had some sundowners and signs of dementia over the last few years. That being said she was living on her own for the most part. This last year her struggles were more noticeable. After the hip surgery it has worsened markedly. She went to a rehab. They ignored a DTI on her heel. It eventually infected her leg. Went to hospital for a week. Leg was better, heel wound like a 1 or 2. Went to different rehab. Got on hospice because she is 101 yrs old. Her behavior is pretty bad. She has bitten numerous cnas. Thrown things. Destroyed clothing, her glasses (twice), broke a pen and painted herself with ink. Picked at her diaper and made a mess of it when n the floor. We (my mom and I ) are at the facility every day. We have advocated for her safety and well being. She is resistant to taking any pills, so she was getting 1mg of Ativan compound ,every 8 hours. Now 2mg every 8 hours. The heel wound went from 3 to a 4! They were not caring for her at all. The last week there has been a lot of issues with here getting the gel on time. Over last weekend either an LPN decide not to give her a dose or they rain out of the meds! Hot mess! Now this whole week has been horrible! We are beside ourselves trying to figure out what to do! Fo we go to anti depressants or something else. Do they come in gel. We know she is at the end of life but we want to keep everyone safe. She is so combative they have to hold her and then her thin skin rips. We have a great memory care facility near by that we reserved a room but they cannot take her until the heel can go from every 12 hour dressing with collagen, to 3x a week. What can we give her to calm her and keep her safe??

    Reply

    • I’m so sorry that your grandmother is struggling. I can understand wanting her to be calm and safe, and medications can help but they’re not the whole answer.

      Lorazepam (Ativan) is a benzodiazepine, which is a sedative/hypnotic. It’s often used for anxiety and sleep, but side effects can include confusion, falls, and too much sleepiness. People can go into withdrawal as well if it is stopped suddenly. It can be given in various ways, which makes it convenient if someone doesn’t want to swallow pills.

      As a geriatrician, when I’m asked to consult on an older adult with behaviour changes, I start by trying tp determine if there’s an unmet need or trigger for the person’s behaviour. Pain, constipation, urinary tract infection or urinary retention, fear, anxiety or a misinterpretation of the environment, can all be reasons for an older adult to respond with resistance or aggression. Uncovering and correcting those issues can be more effective and safer than medications.

      The presence of family members and familiar objects can also be very helpful to calm a person, so it’s wonderful that you were able to visit your grandmother.

      As you’ve pointed out, any prescribed medication needs to be given regularly and by the correct route. Antidepressants usually take 2 to 6 weeks to start working once the right dose is reached, so that might be a longer term solution. Some antidepressants can be given under the tongue or in liquid form.

      If you can ask for a consultation from a geriatrician or geriatric team, that would probably be a big help. I hope your grandmother is more comfortable soon.

      Reply

  71. My wife has early onset AD, and has been living in MC. She recently got aggressive, attacking staff & residents. She’s being evaluated in a psych ward, and they started her on lithium & Risperdal. Do you think these will be effective long term, or is it possible the aggression will reappear later?

    Reply

    • Whether or not someone needs to stay on psychiatric medications for a long time depends on many factors, such as their underlying psychiatric issues (longterm history of bipolar disorder or depression might mean a longterm medication), severity of symptoms and whether there are other non-medication treatments that would help (like a change in environment or in the person’s care plan).

      Risperdal (risperidone) is an atypical antipsychotic, and we do try to use those sparingly in older adults living with dementia, and there’s a “black box” warning on that class of medications. You can read more here:https://jamanetwork-com.libaccess.lib.mcmaster.ca/journals/jama/fullarticle/201714
      That’s not to say we never use them, we just try to be cautious and balance the risks with the benefits to the person’s quality of life.

      I hope your wife feel more like herself soon and I’m glad she’s getting the help of psychiatrists.

      Reply

  72. I have been giving my husband Memantin for 6 years. His agitation has increased to the point where it was unbearable. For the last two weeks I have given my husband Tavor 0.5, in the early afternoon. It has had a tremendous calming effect. But when I give him Memantin, a few hours later, it seems to agitate him again. Today I didn’t give him his doses of Memantin. My husband remained calm, ( but not passiv) for the rest of the day. He undressed without any fuss and went to bed and fell immediately asleep without stress. Can I just stop giving him Memantin and just give him Tavor? Or is this too sudden of a change? Thank you so much for your excellent article. I’ve taken it all to heart.

    Reply

    • I’m so glad you appreciated the article, Angelika.

      Unfortunately, I’m not sure what “Tavor” is, as it’s not a medication name I recognize. It might be an antipsychotic, which is a class of medications that we generally try to avoid in older adults. It’s difficult for me to comment without knowing more.

      Memantine is a medication for dementia, especially Alzheimer’s, and can be used for years. Usually we stop it if a person is at a very advanced stage of dementia, or if they prefer to take fewer medications in general, going for a more comfort oriented approach. As with all “brain” medications, we usually gradually stop memantine, by giving lower doses every few days or weeks, until we discontinue it completely.

      It’s always difficult to tell if a change in behaviour in a person living with dementia is due to a medication or just a natural part of the dementia progression. Often, caregivers figure out what to do with medications by trial and error, and by talking to a pharmacist or doctor who knows about the person with dementia’s health history.

      Reply

  73. Hi there
    My Mum has Vascular Dementia and paranoid disorder. She is 83. She has always suffered with depression and paranoid disorder. She now suffers with severe Auditory hallucinations. She has always threatened suicide for as long as I can remember. She takes Respiridone and mirtazapine. Has taken 100mg sertraline for many, many years. The psychiatrist gave her lorazepam 1mg which helps calm her down a great deal. She sleeps well with the mirtazapine.
    Is it safe to give her lorazepam every day? When she wasn’t on it she would try to get out to our next door neighbour, who she blames for the music and noise she can hear. She would get very angry when I stopped her and said she would hit me if I didn’t get out of her way. A psychiatric nurse comes to see her every few weeks. I live with my Mum. Fortunately

    Reply

    • It sounds like your mother has a complex history with mental health symptoms and a vascular dementia diagnosis.

      We generally try to avoid giving a benzodiazepine like lorazepam every day, because of the increased risks of falls, sedation and cognitive impairment.

      However, if a person’s quality of life is better on the daily dose of lorazepam, it may be worth accepting the risks for the benefit to their overall wellness. I’m glad to hear that a psychiatrist is involved in your mother’s care and they can determine if the current medication regimen is right for her.

      Reply

      • Thanks for your reply. Makes me feel a lot better giving her this tablet. I do worry about her so very much. She is so much calmer with it. I take her out as much as I can in her wheelchair because it does affect her walking. Thank you so very much.

        Reply

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