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Practical information for aging health & family caregivers

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Addressing Medical, Legal, & Financial Advance Care Planning:
The Healthy Aging Checklist Part 6

by Leslie Kernisan, MD MPH

Power of attorney

This is the sixth and final post covering the Healthy Aging Checklist, a set of six core activities that will help any older adult maintain the best possible health while aging.

They are:

  • Promote brain healthย and emotional well-being.
  • Promote physical health.
  • Check for and address common aging health problemsย (such as falls, memory concerns, depression, incontinence, pain, isolation, polypharmacy).
  • Learn to optimize the management of any chronic conditions.
  • Get recommended preventive health services for older adults.
  • Address medical, legal, and financial advance care planning.

In this post, Iโ€™ll address the last item on the list: advance planning for medical, legal, and financial issues. This includes power of attorney documents, plus much more.

This is a big topic, and itโ€™s not possible to cover everything you could or should do in a single article. You would need a book for that — I suggest three down below — plus it’s best to work with qualified professionals (healthcare providers, eldercare attorneys, and financial planners) before completing any legally binding paperwork.

But every day as I work, I see older adults and families whose health and well-being is being affected by the consequences of their planning โ€” or lack of planning, as the case often is.

So in this post, I will share some practical information that should make it easier for you to address planning that covers some common age-related challenges:

  • The three key steps involved in allย advance planning for aging
  • 5 common problems every older adult and family should consider planning for
  • 5 key steps for advanced planning in healthcare, and where to get a good free medical power of attorney (POA)
  • 4 key steps for advance planning for legal and financial issues, and what to know about general POAs
  • Tips for adult children, including what to do if you’re concerned about mental capacity or undue influence

[Read more…]

Filed Under: Aging health, Geriatrics For Caregivers Blog, Helping Older Parents Articles Tagged With: Advance Care Planning, dementia, healthy aging, power of attorney

5 Types of Medication Used to Treat Sundowning & Difficult Dementia Behaviors

by Leslie Kernisan, MD MPH

medication for Alzheimer's behavior

One of the greatest challenges, when it comes to Alzheimer’s disease and other dementias, is coping with sundowning and with difficult behaviors.ย 

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

  • Delusions, false accusations, 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.

And when these behaviors happen in the late afternoon or early evening, it’s usually called “sundowning“. (In most cases, sundowning is triggered by fatigue; anticholinergic medications may cause sundowning symptoms as well.)

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.”

[Read more…]

Filed Under: Aging health, Geriatrics For Caregivers Blog, Helping Older Parents Articles Tagged With: alzheimer's, dementia, medication, paranoia

10 Things to Know About Delirium

by Leslie Kernisan, MD MPH

Pop quiz:ย What aging health problem is extremely common, has serious implications for an older personโ€™sย health and wellbeing, and can often โ€“ but not always โ€“ be prevented?

Itโ€™s delirium. In my opinion, this is one of the most important aging health problems for older adults to be aware of. Itโ€™s also vital for family caregivers to know about this condition, since families can be integral to preventing and detecting delirium.

In this article, Iโ€™ll explain just what delirium is, and how it compares to dementia. Then Iโ€™ll share 10 things you should know, and what you can do.

What is Delirium

Delirium is a state of worse-than-usual mental confusion, brought on by some type of unusual stress on the body or mind. Itโ€™s sometimes referred to as an โ€œacute confusional state,โ€ because it develops fairly quickly (e.g., over hours to days), whereas mental confusion due to Alzheimerโ€™s or another dementia usually develops over a long time.

The key symptom of delirium is that the person develops difficulty focusing or paying attention. Delirium also often causes a variety of other cognitive symptoms, such as memory problems, language problems, disorientation, or even vivid hallucinations. In most cases, the symptoms โ€œfluctuate,โ€ with the person appearing better at certain times and worse at other times, especially later in the day.

Delirium is usually triggered by a medical illness, or by the stress of hospitalization, especially if the hospitalization includes surgery and anesthesia. However, in people who have especially vulnerable brains (such as those with Alzheimerโ€™s or another dementia), delirium can be provoked by medication side-effects or less severe illnesses.

Itโ€™s much more common than many people realize: about 30% of older adults experience delirium at some point during a hospitalization.

That confusion after surgery that older adults often experience? Thatโ€™s delirium.

The way your elderly mother with dementia gets twice as confused when she has a urinary tract infection? Thatโ€™s delirium too.

Or the common phenomenon of โ€œICU psychosisโ€? That too is delirium.

What Causes Delirium?

In older adults, delirium often has multiple causes and contributors. These can include:

  • Infection (including UTI, pneumonia, the flu, COVID)
  • Other serious medical illness (e.g. heart attack, kidney failure, stroke, and more)
  • Metabolic imbalances (e.g. abnormal blood levels of sodium, calcium, or other electrolytes)
  • Dehydration
  • Medication side-effects
  • Sleep deprivation
  • Uncontrolled pain
  • Sensory impairment (e.g. poor vision and hearing, which can worsen if the person is lacking their usual glasses or hearing aids)
  • Alcohol withdrawal

Delirium vs. Dementia

People often confuse delirium and dementia (such as Alzheimer’s disease), because both conditions cause confusion and appear superficially similar. Furthermore, people with dementia are actually quite prone to develop delirium. Thatโ€™s because delirium is basically a reflection of the brain going haywire when it gets overloaded by the stress of illness or toxins, and brains with dementia get overloaded more easily.

In fact, the more vulnerable a personโ€™s brain is, the less it takes to tip them into delirium. So a younger person generally has to be very very sick to become delirious. But a frail older person with Alzheimerโ€™s might become delirious just from being stressed and sleep-deprived while in the hospital.

Why Delirium is Such an Important Problem

There are three major reasons why delirium is an important problem for us all to prevent, detect, and manage.

First, delirium is a sign of illness or stress on the body and mind. So if a person becomes delirious, itโ€™s important to identify the underlying problems โ€“ such as an infection or untreated pain โ€“ and correct them, so that the person can heal and improve.

The second reason delirium is important is that a confused person is at higher risk for falls and injuries during the period of delirium.

The third reason is that delirium often causes serious consequences related to health and well-being.

In the short term, delirium increases the length of hospital stays, and has been linked to a higher chance of dying during hospitalization. In the longer term, delirium has been linked to worse health outcomes, such as declines in independence, and even acceleration of cognitive decline.

Now letโ€™s cover 10 more important facts you should know about delirium, especially if youโ€™re concerned about an aging parent or other older relative.

10 Things to Know About Delirium, and What You Can Do

1.Delirium is extremely common in aging adults.

Almost a third of adults aged 65 and older experience delirium at some point during a hospitalization, with delirium being even more common in the intensive care unit, where itโ€™s been found to affect 70% of patients. Delirium is also common in rehabilitation units, with one study finding that 16% of patients were experiencing delirium.

Delirium is less common in the outpatient setting (e.g. home, assisted-living, or primary care office). But it still can occur when an older adults gets sick or is affected by medications, especially if the person has a dementia such as Alzheimerโ€™s.

What to do: Learn about delirium, so that you can help your older loved ones reduce the risk, get help quickly if needed, and better understand what to expect if someone does develop delirium. You should be especially be prepared to spot delirium if your parent or loved one is hospitalized, or has a dementia diagnosis. Donโ€™t assume this is a rare problem that probably wonโ€™t affect your family. For more on hospital delirium, see Hospital Delirium: What to know & do.

2. Delirium can make a person quieter.

Although people often think of delirium meaning as a state of agitation and or restlessness, many older delirious people get quieter instead. This is called hypoactive delirium. Itโ€™s still linked with difficulty focusing attention, fluctuating symptoms, and worse than usual thinking. Itโ€™s also linked with poor outcomes. But itโ€™s of course harder for people to notice, since thereโ€™s little โ€œravingโ€ or restlessness to catch peopleโ€™s attention.

What to do: Be alert to those signs of difficulty focusing and worse-than-usual confusion, even if your older person seems quiet and isnโ€™t agitated. Tell the hospital staff if you think your relative may be having hypoactive delirium. In the hospital, itโ€™s normal for older patients to be tired. Itโ€™s not normal for them to have a lot more difficulty than usual making sense of what you say to them.

3. Delirium is often missed by hospital staff.

Despite the fact that delirium is extremely common, it is often missed in hospitalized older adults, with some reports estimating itโ€™s being missed 70% of the time. Thatโ€™s because busy hospital staff will have trouble realizing that an older personโ€™s confusion is new or worse-than-usual. This is especially true for people who either look quite old โ€“ in which case hospital staff may assume the person has Alzheimerโ€™s โ€“ or have a diagnosis of dementia in their chart.

What to do: You must be prepared to speak up if you notice that your family member isnโ€™t in his or her usual state of mind. Hypoactive delirium is especially easy for hospital staff to miss. Hospitals are trying to improve delirium prevention and detection, but we all benefit when families help out. Remember, no hospital person knows your older person the way that you do.

4. Delirium can be the only outward sign of a potentially life-threatening problem.

Although delirium can be brought on or worsened by โ€œlittle thingsโ€ such as sleep deprivation or untreated constipation, it can also be a sign of a very serious medical problem. For instance, older adults have been known to become delirious in response to urinary tract infections, pneumonia, and heart attacks.

In general, it tends to be older persons with dementia who are most likely to show delirium as the only outward symptom of a very serious medical illness. But whether or not your older relative has dementia, if you notice delirium, youโ€™ll want to get a medical evaluation as soon as possible.

What to do: Again, if you notice new or worse-than-usual mental functioning, you must bring it up and get your older loved one medically evaluated without delay. For older adults who are at home or in assisted -living, you should call the primary care doctorโ€™s office, so that a nurse or doctor can help you determine whether you need an urgent care visit versus an emergency room evaluation.

5. Delirium often has multiple underlying causes.

In older adults with delirium, we often end up identifying several problems that collectively might be overwhelming an older personโ€™s mental resilience. Along with serious medical illnesses, common contributors/causes for delirium include medication side effects (especially medications that are sedating or affect brain function), anesthesia, blood electrolyte imbalances, sleep deprivation, lack of hearing aids and glasses, and uncontrolled pain or constipation. Substance abuse or withdrawal can also provoke delirium.

What to do: To prevent delirium, learn about common contributors and try to avoid them or manage them proactively. For instance, if you have a choice regarding where to hospitalize an older person, some hospitals have โ€œacute care for eldersโ€ units that try to minimize sleep deprivation and other hospital-related stressors. If your older relative does develop delirium, realize that there is often not a single โ€œsmoking gunโ€ when it comes to delirium. A good delirium evaluation will attempt to identify and correct as many factors as possible.

6. Delirium is diagnosed by clinical evaluation.

To diagnose delirium, a doctor first has to notice โ€“ or be alerted to โ€“ the fact that a person may not be in his or her usual state of mind. Experts recommend that doctors then use the Confusion Assessment Method (CAM), which describes four features that doctors must assess. Delirium can be diagnosed if a patientโ€™s symptoms include โ€œacute onset and fluctuating course,โ€ โ€œdifficulty paying attention,โ€ and then either โ€œdisorganized thinkingโ€ or โ€œaltered level of consciousness.โ€

Delirium cannot be diagnosed by lab tests or scans. However, if an older adult is diagnosed with delirium, doctors generally should order tests and review medications, in order to identify factors that have caused or worsened the delirium.

What to do: Again, the most important thing for you to do is to get help for your loved one if you notice worse-than-usual confusion or difficulty focusing. Although families have historically not had a major role in delirium diagnosis, delirium experts have developed a family version of the CAM (FAM-CAM), which is designed for non-clinicians and has been shown to help detect delirium.

7. Delirium is treated by identifying and reversing triggers, and providing supportive care.

Delirium treatment requires a care team to take a three-pronged approach.

  1. Health providers must identify and reverse the illness or problems provoking the delirium.
  2. They have to manage any agitation or restless behavior, which can be tricky since a fair number of sedating medications can worsen delirium.
    1. The safest approach is a reassuring presence (family is best, but hospitals sometimes also provide a โ€œsitterโ€) to be with the person, plus improve the environment if possible (e.g. a room with a window and natural light).
    2. The once-popular practice of physically restraining agitated older adults has been shown to sometimes worsen delirium, and should be avoided if possible.
  3. The care team needs to provide general supportive care to help the brain and body recover.

What to do: The reassuring presence of family is often key to providing a supportive environment that promotes delirium recovery. You can also help by making sure your loved one has glasses and hearing aids, and by alerting the doctors if you notice pain or constipation. Ask the clinical team how you can assist, if restlessness or agitation are an issue. Bear in mind that physical restraints should be avoided, as there are generally safer ways to manage agitation in delirium.

8. It can take older adults a long time to fully recover from delirium.

Most people are noticeably better within a few days, once the delirium triggers have been addressed. But it can take weeks, or even months, for some aging adults to fully recover.

For instance, a study of older heart surgery patients found that delirium occurred in 46% of the patients. After 6 months, 40% of those who had developed delirium still hadnโ€™t recovered to their pre-hospital cognitive abilities.

What to do: If your parent or someone you love is diagnosed with delirium, donโ€™t be surprised if it takes quite a while for him or her to fully recover. Itโ€™s good to be prepared to offer extra help during this period of time. You can facilitate recovery by creating a restful recuperation environment that minimizes mental stress and promotes physical well-being.

9. Delirium has been associated with accelerated cognitive decline and with developing dementia.

This is unfortunate, but true, especially in people who already have Alzheimerโ€™s or another type of dementia. A 2009 study found that in such persons, delirium during hospitalization is linked to a much faster cognitive decline in the following year. A 2012 study reached similar conclusions, estimating that cognition declined about twice as quickly after delirium in the hospital.

In older adults who donโ€™t have dementia, studies have found that delirium increases the risk of later developing dementia.

What to do: Experts arenโ€™t sure what can be done to counter this unfortunate consequence of delirium, other than to try to optimize brain well-being in general. (For this, I suggest avoiding risky medications, getting enough exercise and sleep, being socially and intellectually active, and avoiding future delirium if possible; learn more here.)

The main thing to know is that delirium has serious consequences, so itโ€™s often worth it for a family to be careful about surgery in an older person, and itโ€™s good to learn about delirium prevention (see below).

10. Delirium is preventable, although not all cases can be prevented.

Experts estimate that delirium is preventable in about 40% of cases. Preventive strategies are meant to reduce stress and strain on an older person, and also try to minimize delirium triggers, such as uncontrolled pain or risky medications.

In the hospital setting, programs such as the Hospital Elder Life Program (HELP) for Prevention of Delirium have been shown to work. For ideas on how families can help, see thisย family tip sheet from the Hospital Elder Life Program.ย For instance, families can help reorient a relative in the hospital, ensure that glasses and hearing aids are available, and provide a reassuring presence to counter the stress of the hospital setting.

Less is known about preventing delirium in the home setting. However, since taking anticholinergic medications (such as sedating antihistamines) has been linked with hospitalizations for confusion, you can probably prevent delirium by learning to spot risky medications your parent might be taking.

What to do: To prevent hospital delirium, carefully weigh the risks and benefits before proceeding with elective surgery. If your older loved one must be hospitalized, choose a facility using the HELP program or with an Acute Care for Elders unit if possible. Be sure to read HELPโ€™sย tips for families on preventing hospital delirium.

Remember, delirium is common and can be the only outward sign of a serious medical problem.

By educating yourself and helping your older loved ones be proactive about prevention, you can reduce the chance of harm from this condition.

And if you do notice symptoms of delirium, make sure to tell the doctors! This will help your parent get the evaluation and treatment that he or she needs.

Useful Online Resources Related to Delirium

Here are links to some of the resources I reference in the article:

  • A study (one of many) finding that delirium is linked toย worse health outcomes in the elderly
  • A study of older adults in the Intensive Care Unit, finding that 43.5% had hypoactive delirium
  • An article finding that older patients do better when they are hospitalized in an โ€œAcute Care for Eldersโ€ unit (a special hospital ward tailored towards protecting older adults from hospital complications; they are great!)
  • An explanation of the Confusion Assessment Method, which experts recommend doctors use to diagnose delirium
  • A description of the Family-CAM, which experts developed to help family caregivers detect delirium
  • A study finding that delirium accelerates cognitive decline in Alzheimerโ€™s; a follow-up study finding that people with dementia decline twice as quickly after having delirium (!) is here.
  • Tips on how family caregivers can prevent delirium, from the Hospital Elder Life Program

Last but not least, for my previous posts on delirium:

  • Delirium: How Caregivers Can Protect Alzheimerโ€™s Patients
  • Hospital Delirium: What to Know and Do
  • How to Maintain Brain Health: the IOM Report on Cognitive Aging

This article was reviewed and updated in January 2025.ย 

Filed Under: Aging health, Geriatrics For Caregivers Blog, Helping Older Parents Articles Tagged With: delirium, dementia

4 Types of Brain-Slowing Medication to Avoid if You’re Worried About Memory

by Leslie Kernisan, MD MPH

Image Credit: BigStock.

A few years ago, while I was at a family celebration, several peopleย mentioned memory concerns to me.

Some were older adults concerned about the memory of their spouses. Some were adult children concerned about the short-term memory of their parents. And a few were older adults who have noticed some slowing down of their own memory.

“But you know, nothing much that can be done at my age,” remarked one man in his eighties.

Wrong. In fact, there is a lot that can and should be done, if you notice memory loss or thinking changes in yourself or in another older adult. And you should do it because it ends up making a difference for brain health and quality of life.

First among them: identify medications that make brain function worse.

This is not just my personal opinion. Identifying and reducing such medications is a mainstay of geriatrics practice. Among other reasons, we do find that in some people, certain medications are causing memory loss symptoms — or other cognitive symptoms — to be worse.

And the expert authors of the National Academy of Medicine report on Cognitive Aging agree: in theirย Action Guide for Individuals and Families, they list “Manage your medications” among their “Top 3 actions you can take to help protect your cognitive health as you age.”

Unfortunately, many older adults are unaware of this recommendation. And I can’t tell you how often I find that seniors are taking over-the-counter or prescription medications that dampen their brain function. Sometimes it’s truly necessary but often it’s not.

What especially troubles me is that most of these older adults — and their families — have no idea that many have been linked to developing dementia, or to worsening of dementia symptoms. So it’s worth spotting them whether you are concerned about mild cognitive impairment or caring for someone with full-blown Alzheimer’s dementia.

Every older adult and family should know how to optimize brain function. Avoiding problem medications — or at least using them judiciously and in the lowest doses necessary — is key to this.

And don’t give anyone a pass when they sayย “Oh, I’ve always taken this drug.” Younger and healthier brains experience less dysfunction from these drugs. That’s because a younger brain has more processing power and is more resilient. So drugs that aren’t such problems earlier in life oftenย have more impact later in life. Just because you took a drug in your youth or middle years doesn’t mean it’s harmless to continue once you are older.

You should also know that most of these drugs affect balance, and may increase fall risk. So there’s a double benefit in identifying them, and minimizing them.

Below, I share the most commonly used drugs that you should look out for if you are worried about memory loss.

Featured Download: Get my free list of medications that can affect memory and thinking in aging adults. This handy PDF includes all the medications I usually check for.ย ย Click here to download.

The Four Most Commonly Used Types ofย Medications That Dampen Brain Function

[Read more…]

Filed Under: Aging health, Featured, Geriatrics For Caregivers Blog, Helping Older Parents Articles Tagged With: alzheimer's, brain health, dementia, medications, memory

4 Things to Try When Your Aging Parent Seems Irrational

by Leslie Kernisan, MD MPH

Dear Dr. K,

Any ideas on how I can relieve my mother’s anxiety about her thinking an animal got in the house? I can’t find anything and have moved the couches but she is convinced and scared.

She’s always been a worrier, plus her thinking has been deteriorating and her vision is impaired a bit. I take care of her and my Dad both 94. She gets upset if I tell her I think she just thought she was seeing something and says I think she is crazy. Last night she woke me up shaking and practically in tears because she thought she saw it again -I offered for her to come sleep with me but she wouldn’t.ย Any suggestions? — C.S.

Thanks so much for sending in this question. This is a very common complaint I hear from family caregivers, so I am happy to share some thoughts about what might be going on and what you can do.

Now, I can’t say for sure what is going on with your mother. That’s because she’s not my patient, and I’m not in a position to interview her and examine her.

What I can say, however, is that it’s very common for older adults to develop persisting fears, worries, and complaints that often strike their family members asย irrational, paranoid, absurd, or ridiculous.

Why is this?

Among my own patients, I’ve found this is oftenย related to underlying cognitive impairment. Meaning, a problem with memory or thinking that hasn’t yet been fully diagnosed by doctors. ย In some cases, this kind of complaint ends up being one of the very earliest signs of clinical dementia.

Lewy-Body dementia, in particular, is associated with visual hallucinations. But any process causing brain deterioration (Alzheimer’s, vascular dementia, etc.)ย can result in anxieties spiraling out of control, or persisting strange beliefs.

That said, it’s quite possible for an aging person to express such fears and not have it be dementia. Maybe there really is an animal in the house, or a person stealing your parent’s things. It’s also possible for people to develop confusion or false beliefs due a problem other than dementia, such as mental illness or delirium.

(For more in-depth information on the most common causes of paranoia and strange beliefs in older adults, see this article: 6 Causes of Paranoia in Aging & What to Do.)

Still, given your mom’s age and the fact you’ve noticed other signs of “thinking deterioration,” there’s a good chance that her persisting fear could be related to some chronic underlying cognitive impairment.

4 Things to try to helpย your mother

[Read more…]

Filed Under: Geriatrics For Caregivers Blog, Helping Older Parents Articles, Managing relationships, Q&A Tagged With: alzheimer's, dementia

Incompetence & Losing Capacity:
Answers to 8 FAQs

by Leslie Kernisan, MD MPH

Depositphotos_9669220_m-2015-brain-cogs-leaving-compressor

Have you ever been concerned about an older relative who seems to be making bad decisions?

Perhaps your elderly father insists he has no difficulties driving, even though he’s gotten into some fender benders and you find yourself a bit uncomfortable when you ride in the car with him.

Or you’ve worried about your aging aunt giving an alarming amount of money to people who call her on the phone.

Or maybe it’s your older spouse, who has started refusing to take his medication, claiming that it’s poisoned because the neighbor is out to get him.

These situations are certainly concerning, and they often prompt families to ask me if they should be worried about an older adult becoming “incompetent.”

In response, I usually answer that we need to do at least two things:

[Read more…]

Filed Under: Aging health, Geriatrics For Caregivers Blog, Helping Older Parents Articles, Managing relationships, Q&A Tagged With: capacity, dementia, memory

How to Detect & Treat Vitamin B12 Deficiency in Older Adults

by Leslie Kernisan, MD MPH

Vitamin B12

Everyone knows that vitamins and nutrition are important for health, and many older adults take a multivitamin.

But did you know that even among older persons who do this, many still end up developing a serious deficiency in one particular vitamin?

Itโ€™s Vitamin B12.

If there’s one vitamin that I’d like all older adults and family caregivers to know more about, it would be vitamin B12.

(Second on my list would be vitamin D, but it’s much harder to develop low vitamin D levels if you take a daily supplement, as I explain in this post. Whereas vitamin B12 deficiency does develop in many older adults who are gettingย their recommended daily allowance.)

A deficiency in any vitamin can be catastrophic for health. But vitamin B12 deficiency stands out because a)ย it’s very common — experts have estimated that up to 20% of older adults may be low in this vitamin — and b)ย it’s often missed by doctors.

Geriatricians also like to pay attention to vitamin B12 because a deficiency can cause — or usually worsen — cognitive impairment or walking problems.

But if you know the symptoms and risk factors, you can help ensure that you get a vitamin B12 deficiency detected. Treatment is safe and effective, as long as you catch the problem before permanent damage occurs. Hereโ€™s what to know.

[Read more…]

Filed Under: Aging health, Geriatrics For Caregivers Blog Tagged With: dementia, nutrition, vitamin b12

Q&A: What to do if your aging parent becomes rude & resistant

by Leslie Kernisan, MD MPH

Aging Parent with Adult Child

Q: My loving, Jewish mother is 92 and has turned into a rude, abusive foul-mouthed woman who I no longer recognize.

She’s in relatively good health and amazingly lives in the same house I grew up in. She has an aide during the day. She won’t leave the house, treats the aide poorly and last weekend cursed out my very patient spouse. We’ve been getting 5 calls a day such as ” I’m having a heart attack; no one will tell me whether recycling comes today”!ย 

I know she has early signs of dementia. Her cardiologist tells me not to take it to heart and this is not the same woman who raised me. ย She won’t go to the JCC adult programs, complains about being lonely at night, yet hangs up on me when I tell her we can get an aide at night or sell the home and let her live in a facility with women her age, etc. She threatens to call the Police if someone comes to her home at night. I have a POA but don’t want to rob her of her independence at 92. I try to tell her to speak nicely to the aides, myself, my spouse, but she says ” I don’t remember or I must have reacted to something someone did or said.”

I feel guilty as I’m not spending as much time with her as I would like, but it’s a matter of survival. Jewish guilt is thrown about with impunity and I can’t tell whether she’s being manipulative and obsessing over bullshit ( “oh my God the outside light may burn out tonight” ) or she really can’t control herself. Her aide ย is a lovely human being but my mom orders her around like a slave. ย Who is this woman? I’m torn, anguishing over what to do and am doing nothing but try to correct her inappropriate behavior and language. I wanted to take her to a geriatric psychiatrist but she refused to go. Medication to calm her down is dangerous per the MD as she could fall, etc.ย 

What should I do? I’m at my wits end.ย 

Dr. K’s answer:

Wow, difficult situation but unfortunately not uncommon.

You say your mother has early signs of dementia, and it is true that โ€œpersonality changesโ€ can be due to an underlying type of dementia, such as fronto-temporal dementia or Alzheimerโ€™s, especially if a family notices other changes in memory or thinking abilities.

But it doesnโ€™t sound like your motherโ€™s been clinically evaluated for dementia, and you donโ€™t say whether this has been brought up with her primary care doctor.

How to Get Signs of Dementia (or Personality Changes) Evaluated

[Read more…]

Filed Under: Aging health, Geriatrics For Caregivers Blog, Helping Older Parents Articles, Managing relationships, Q&A Tagged With: dementia, dementia diagnosis

How to Manage Sleep Problems in Dementia

by Leslie Kernisan, MD MPH

Sleep problems are common in Alzheimerโ€™s and other dementias. They also commonly drive family caregivers crazy, because when your spouse or parent with Alzheimerโ€™s doesnโ€™t sleep well, this often means that you donโ€™t sleep well.

To make matters even worse, not getting enough sleep can worsen the thinking or behavior of someone with dementia. Of course, this is true for those of us who donโ€™t have Alzheimerโ€™s as well: we all become more prone to irritation and emotional instability when weโ€™re tired. Studies have also shown that even younger healthy people perform worse on cognitive tests when they are sleep-deprived.

Hence getting enough sleep is important, for people diagnosed with dementia, and for their hard-working caregivers. Now, sleep problems do often take a little effort to evaluate and improve. But as I explain below, research has found that it is often possible to improve sleep problems in dementia.

The key is to know what common causes to look for, and then come prepared to provide useful information to the doctor. In this article, I’ll cover:

  • Common causes of sleep problems in Alzheimer’s and other dementias,
  • How sleep issues should be evaluated
  • Proven approaches that help improve sleep in dementia
  • What to know about commonly tried medications for this problem

Common Causes of Sleep Changes and Problems in People with Dementia

[Read more…]

Filed Under: Aging health, Announcements, Geriatrics For Caregivers Blog, Helping Older Parents Articles Tagged With: alzheimer's, dementia, sleep

Q&A: What You Can Do if You’re Worried About “Incompetence”

by Leslie Kernisan, MD MPH

Aging Farmer

Q: My 87-year-old father lives alone. His house has become increasingly dirty, but he refuses to get help, even though I’m sure he needs it. I’m worried that he’s becoming incompetent and in need of elder care, but he doesn’t want to go see the doctor. What can I do?

A: This situation does come up a fair bit with aging parents and relatives. I’m sorry to say there usually are no easy solutions. But there definitely areย  things you can and should do, and it’s better to act sooner rather than later.

Let’s review what you can do. I’ll also explain what I’ve learned about “incompetence” over the years, and how doctors usually play a role in the evaluation of such older adults.

Then, I’ll share some thoughts on how older people and families can plan ahead, to avoid facing this kind of dilemma. And then last but not least, I share a few thoughts on taking care of yourself as you go through this.

The usual concern, for a person of this age, is that the person may have developed memory loss, or a dementia such as Alzheimer’s disease.

This is a pretty reasonable worry, since an estimated 30% of people aged 85+ have dementia. (Wondering about dementia vs Alzheimer’s? Here’s where I explain dementia and how it’s related to Alzheimer’s.)

And of course, if your older parent seems to be doing worse than before, when it comes to activities that require mental organization (such as keeping a house reasonably clean), that further increases the chance that some kind of brain deterioration is causing problems.

But, we should never start by jumping to the conclusion that someone has developed dementia and needs elder care.

The main thing you wrote above is that you’reย worried about a dirty house and a refusal to get help. This could be due to thinking problems. But it could also be due to pain and mobility problems, combined with a common reluctance to accept assistance.

Still, I have to admit that in many similar cases that I’ve encountered, the older personย does have cognitive impairment. And we do often find it’s substantial enough and irreversible enough to qualify as dementia. (For more on dementia diagnosis, see my post “How We Diagnose Dementia: the Practical Basicsย to Know.”)

Now, even if he does have dementia, that doesn’t mean we can’t improve his thinking.ย Iย often find that by adjusting medications or the older person’s situation, we can optimize brain function and help the person manage better, despite the underlying dementia.

We also sometimes find that an older person is experiencingย delirium from an illness or other health problem, which can make the thinking worse than usual.

So, getting him the right medical evaluation and optimization is key. You might even be ableย to get him to the doctor not by saying “You need to be checked for dementia,” but by saying “We need the doctor toย help you feel your best and be your best, since that helps youย keep living at home for as long as possible, which you’ve said is important to you.” (It’s key to frame your suggestions as ways to help your father achieve his health and life goals.)

Of course, these are all things that can be found out after the older person has been medically evaluated, and by someone who knows how to assess cognitive symptoms correctly.

Part of your frustration is that your father doesn’t want to go see a doctor. So you’re stuck: worried that something’s wrong, worried that your father has become “incompetent,” and unsure as to how to move forward since your father is refusing to cooperate. Let’s talk about your options for doing something, despite your father’s reluctance.

How to get elder care for an aging person

Start by asking yourself whether you think your father really might have lost mental insight and abilities, as opposed to simply making choices that you disagree with. (See “8 Behaviors to Take Note of if You Think Someone is Getting Alzheimerโ€™s“.)

If you think he really is cognitively impaired, then you probably should consider pushing things a little more, to get him the help he seems to need.

For more tips on how to get an aging parent to see the doctor, even if they’ve been resisting, watch this video:

ย 

I would also encourage you to make a list of specific concerns and red flags. You can use theย “Quick Start Guide to Checking Older Parents” or a similar checklist, toย help you identify specific problems that need attention.

Once you’ve decided how worried you are about dementia, and listed the key problems to address, here are some resources that can help:

  • Your father’s regular doctor. This can be a good place to start, especially if it’s a doctor who has known your father for a while. Contrary to popular opinion, the HIPAA regulations (which govern the privacy of health information) do not preclude you, an adult child, from contacting your father’s doctor and relaying your observations and concerns. You can see if the doctor is willing to hear you out on the phone, and then do send in your concerns in writing, since those will usually be scanned into the chart. The doctor may be able to help you persuade your father to come in. On the other hand, if the doctor waves off your concerns saying there’s nothing to do, you’ll need to look elsewhere for help. And you’ll want toย look for a doctor who is more up-to-date on the medical care of aging adults with cognitive impairment. For more on how the doctor should evaluate cognitive impairment, see here: Cognitive Impairment in Aging: 10 Common Causes & 10 Things the Doctor Should Check.
  • Adult Protective Services (APS).ย To find contact information for your local APS office, enter your father’s zip code in the locator at Eldercare.gov. APS caseworkers respond to reports of abuse or neglect of older adults, including “self-neglect.”ย Generally, the identity of the person reporting a concern to APS is kept confidential, so your father wouldn’t be told you reported him (although he may have his suspicions of course). APS offices tend to be overworked and underfunded, as is often the case for social services. But in principle, they will look into the situation, visit your father, review medical information from his doctor, assess his capacity to understand risks and give informed consent, and take action to ensure his safety if warranted. APS does sometimes initiate a court petition for legal guardianship of an older person. For more on APS, click here.
  • Social worker experienced with older adults.ย To find a social worker to help you troubleshoot the situation, you can try calling your local Area Agency on Aging (see the Eldercare.gov locator again). Some primary care offices also offer social work services, especially if they are bigger or serve vulnerable populations. You can also try asking around at local senior centers. That said, in my experience, it’s rare for social workers to visit aging adults at home unless they are sent by a home health agency. So although it’s worth looking for one, if you want someone to go see your father at home — which you probably do — you may need to pay for a geriatric care manager or other “eldercare problem solver”.
  • Geriatric care manager or eldercare expert.ย These professionals usually have to be paid out-of-pocket, and they specialize in helping aging adults and families get through all kinds of late-life challenges. They usually have a background in social work, gerontology, nursing, and/or family therapy. I have worked with several of them and they are quite helpful to families.ย They can do things like coach adult children on how to more constructively discuss difficult topics, mediate family conversations, and help families find the right kind of help. To find a professional affiliated with the Aging Life Care Association (formerly the National Association of Professional Geriatric Care Managers), visit AgingLifeCare.org.

How to know if an older person is “incompetent”?

Now, you’re getting help because presumably, you want to help your father with his goals, which for most aging adults include maintaining independence, dignity, and quality of life.

But you also mentioned a worry that he is becoming “incompetent.” This is an important question to address, and families often ask me to weigh in on this. What I tell them is that as a doctor, it’s not for me to say whether the person is “competent.” Instead, my role is to help assess an older person’s capacity to make medical decisions, and also to identify underlying medical problems that might temporarily or permanently affect decision-making.

You should know that the termย “incompetence” was historically used to refer to a legal determination. In other words, it’s up to courts, not doctors, to say whether someone is incompetent. This is governed by state law so different states have different criteria. But overall, if someone is found in court to be incompetent, they often will beย assigned a guardian or conservator to manage decisions on their behalf.

To decide whether an older person is legally competent, the court will need to know about the person’s ability to manage certain major types of decisions. These might include:

  • Medical consent capacity
  • Sexual consent capacity
  • Financial capacity
  • Testametary capacity
  • Capacity to drive
  • Capacity to live independently

For more on incapacity, see this article: Incompetence & Losing Capacity: Answers to 7 FAQs.

The tricky thing about capacity is that it can certainly change depending on the day and situation. For instance, a person who is sick and delirious might temporarily lose all the above capacities. A bad depression could also affect capacity for some time. People with dementia or other forms of cognitive impairment are also prone to have their mental capacities fluctuate somewhat, depending on the day and whether their brains are functioning at their best.

So how do doctors and psychologists weigh in on capacity? The truth is that it’s pretty variable, and it’s also an area of law and clinical practice that is evolving.

For the best information on howย clinicians should address issues related to capacity in older adults, I recommend this resource, which was created as a joint effort between the American Psychological Association and the American Bar Association:ย Assessment of Older Adults with Diminished Capacity: A Handbook for Psychologists.

Obviously, as it’s written for clinicians rather than for the public, it’s rather long and technical. (There are links to similar handbooks for lawyers and for judges here.) But if you really want to understand this topic, that’s the best info I’ve found.

But bear in mind that although the handbook above describes theย best recommended practices,ย many clinicians may practice a little differently, often due to lack of time or training.

For instance, because medical problems often interfere with an older person’s mental capacities, doctors are routinely asked to weigh in. In principle, when asked about someone’s capacity, a doctor should first want to know “Capacity to do what, or decide what?” And then the doctor should write a statement specific to that question, providing documentation supporting his or her conclusions. The doctor should also ideally state whether any incapacity seems likely to be permanent or not.

But that’s not how things often work in the real world. In practice, I’ve often been asked just to say whether an older person “has capacity” with no additional specifications. I’ve also seen many doctors write vague statements saying “Mr. So-and-so has lost his mental capacities.”

How valid are such statements? I suspect it depends on the jurisdiction and the purpose to which the doctor’s note is used. For instance, some people have trusts or other services that require a “doctor’s statement” in order to allow someone else to step in, and these may have different standards compared to the courts.

How to plan ahead to avoid these problems

The very best approach, of course, is for an older person to have previously planned for this situation. By this, I don’t mean simplyย completing paperwork in order to designate a relative or friend as durable power of attorney for health, and also for finances.

Don’t get me wrong, planning ahead with such power of attorney paperwork is very important and very helpful. (Read more about this here:ย How to Avoid Problems Due to Aging Incapacity: The (Better) Durable General Power of Attorney.)

However, such power of attorneys don’t quite address the situation that all aging adults should plan for: the possibility that they’ll be cognitively slipping and unable — or unwilling — to admit it and let others assist as needed.

I have only rarely seen older adults prepared for this, even though everyone has a fairly substantial chance ofย developing Alzheimer’s or another dementia provided they live long enough. ย (Remember, about 30% of those aged 85+ are cognitively impaired, and it goes up to about 50% of those aged 90+.)

Being a doctor, rather than a lawyer, I’m not qualified to say what constitutes the best preparation. I will say that the better situations that I’ve encountered occurred when an older person had:

  • Created a trust,
  • Designated a trustee or fiduciary to take over when needed,
  • Specified what conditions would trigger trustee take-over, and
  • Specified what the care priorities should be in the event that the older person became permanently unable to make decisions.

But again: I am not a lawyer and this is not legal advice. The expert advice consistently is to plan ahead, plan ahead, plan ahead.

To that I would add:

  1. Hope for the best
  2. Plan for the likely (eg eventual severe dementia if you’ve been diagnosed with mild dementia)
  3. Plan for the quite possible (a fall in which you break a hip, eventually developing dementia, etc)

Your father did not plan for this situation. However, as you help him work through the current situation, keep the above planning principles in mind! You’ll almost certainly have more to plan for, especially if he does end up diagnosed with dementia (which means you or someone else will need to makeย decisions at some point).

If you’d like to learn more about how to talk to your father about your concerns, and how to know when to step in, I cover this in more detail in my free training for families; see below.

As I said at the beginning, this kind of situation is hard to sort through.

It’s messy, and complicated, and stressful, and also tends to bring out whatever family tensions tend to come out when families face problems.

So. If you are worried about an aging father who lives at home alone and might be “incompetent,” you can’t just focus on helping your father. You’ll also have to start equipping yourself to handle what is likely to be a stressful and messy time for the next several months to years. Investing a little time — and possibly a little money — in this will pay off for your father, for you, and for those around you.

The basics of this include making sure you get enough sleep, regular exercise, nutritious food, activities that refresh the soul, and all the other things that are good for humans.

I would also recommend cultivating a mindfulness practice, if you don’t already have one. A variety of free resources are available online, and there are also apps such as Headspace and Calm. The key is to do at least 10 minutes every day. Or for more support, enroll in a mindfulness-based stress reduction course, such as this one.

Last but not least, you’ll need support from friends and family. It’s also usually helpful to get support from others facing similar challenges with aging parents; you can find these in-person and online. You’ll connect with people in similar situations, who will provide helpful suggestions and will completely understand when you need to vent your frustrations.

Good luck!!

This article was first published in 2015. Because I have gotten SO many questions about these types of situations, I wrote a book to walk families through what to do, and it covers the question of incompetence. Learn more here. This article was last reviewed & revised with minor updates in June 2024.

Filed Under: Geriatrics For Caregivers Blog, Helping Older Parents Articles, Managing relationships, Q&A Tagged With: Advance Care Planning, alzheimer's, dementia

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