Earlier this week, while I was listening to a social work colleague (Mary Hulme of Moonstone Geriatrics) give a talk on dementia at the public library, the following question came up:
“How can one keep Alzheimer’s from getting worse?”
Now, Alzheimer’s disease — the most common underlying cause of dementia symptoms — does slowly get worse no matter what. (Given enough years, it will eventually damage the brain to the point of causing a slow death, which is why Alzheimer’s is a terminal disease.)
But on the other hand, we do know that some things tend to slow the progression of brain decline, whereas other things seem to speed up the decline. In other words, the actions we take — and don’t take — can influence a person’s dementia journey.
In my experience, people often have heard about things that might slow down decline (exercise is one of my favorites).
But it seems to me that people are often much less well-informed about the things that can speed up Alzheimer’s decline. This is too bad, because often it is possible to take actions to avoid or minimize things that might cause dementia to get worse faster.
So today I’m going to write about what I think is the most important of these potentially dementia-accelerating problems: delirium.
Delirium: What it is, why it matters
Delirium is a state of worse-than-usual confusion brought on by illness or some kind of stress on the body or mind. It is especially common during hospitalization.
Although the extra confusion of delirium does tend to get better with time (and of course with the treatment of whatever illness or stress brought on the delirium), it’s very important to know the following facts:
- Some people with dementia who experience delirium never recover all the way back to their previous level of thinking ability. Instead, they settle at a new, lower level of mental ability.
- People who’ve experienced delirium tend to mentally decline more quickly during the following years than people who haven’t had delirium. In this study, having had delirium was linked to thinking abilities declining twice as fast in the year after a hospitalization.
- Hospital delirium is very common in people with dementia. This study found that delirium affected 32% of patients with dementia during hospitalization.
In other words, experiencing delirium is common, and can really speed the decline of Alzheimer’s or another dementia.
This can be scary for patients and caregivers to realize. Fortunately, although it’s not possible to avoid all delirium (people get sick after all, or do need to have surgery sometimes), it is possible to take steps that have been proven to reduce the chance that an older person will experience delirium while hospitalized.
To learn more about how you can help prevent delirium during an older person’s hospital stay, I recommend this resource for patients and caregivers on the Hospital Elder Life Program website.
What caregivers can do about delirium
If you are caring for someone with dementia, here are three things you can do to avoid mental decline due to delirium:
- Educate yourself about delirium. For instance, you can learn more about what brings it on, how to have it managed, and how to prevent it. See 10 Things to Know About Delirium for more.
- Be careful about surgery and hospitalizations. If you are considering a surgery that is elective or otherwise not completely mandatory, be very mindful of the risks of accelerating the decline of Alzheimer’s or another dementia. For a sad story of how a family came to regret agreeing to a heart valve repair for an older woman with dementia, read this New York magazine story.
- Learn to spot delirium in the hospital. If you are a caregiver and your loved one with dementia has to be hospitalized, try to help hospital staff monitor for delirium. Yes, it’s their job to do, but studies have shown that busy hospital workers often don’t notice delirium in older adults. Families can help their loved ones get better care by watching for delirium and getting doctors to promptly address it if it develops.
Questions about delirium and dementia? Let me know in the comments!
And don’t forget to read our other BHWA articles on delirium:
- Hospital Delirium: What to know & do
- 10 Things to Know About Delirium (more in-depth and covers delirium vs dementia)
Claire says
Dear Dr Kernisan.
Thank you so much for having taken the time to answer my query it is very helpful. The doctors were concerned about her serious decline in mobility and after a brain scan today have observed two large hematomas on each side of the brain which were present in July however have increased rather significantly. They have suggested an operation tonight which we have agreed to. Mum is not really talking anymore but rather using her vocal chords to make noises which sometimes sound like she is singing in a rather high pitch noise. I understand this has been shrinking her brain and she should get some mobility function back but not very likely to improve her cognition. This doctor told me that she had been put on bezodiazepine medication for her agitated behaviour… I’m not sure what to expect but hope surgery goes as well as possible. I hope to see her at the end of the month. Thank you for your help. Kind regards Claire.
Leslie Kernisan, MD MPH says
Yes, it is possible for older adults to develop such hematomas in the brain, especially after a fall or if they are on blood thinners. I hope the surgery went well and that she recovers quickly. Good luck and take care!
Claire says
Hi.. the other issue is that the doctors at the hospital yesterday refused to tell my brother what medication our mother has been put on. Reason given “secret medical” I don’t know what the equivalent is in English. I’m upset about this. What medication can be given for a patient who is agitated? Psychotropics?
Leslie Kernisan, MD MPH says
In the US, unless you have prior permission or rights to access a parent’s health information, the health providers do not have to tell family members what medication is being given in the hospital, because the patient has a right to privacy regarding this information. Now, they can choose to disclose under certain circumstances but usually they don’t have to. I explain more here:
10 Things to Know About HIPAA & Access to a Relative’s Health Information
I think you said your mother is in France? I’m not sure what the rules are there. Since your mother has been diagnosed with dementia a few years ago, I would think that there is a mechanism to enable a family member to make decisions (which requires adequate information). Perhaps they will tell your brother? People with more than very early dementia need others to oversee medical decisions, esp when they are ill.
I describe the medications given for agitation in the article on medications for difficult dementia behaviors.
Claire says
Hi. Thanks so much for your articles and for taking the time to respond to everybody… My mother is 81 and was diagnosed with Alzheimer’s about 4 years ago. She is Dutch but lives in France and I live in Australia. She has also been suffering from severe depression and anxiety. A few things I’m wondering about. Her dementia started shortly after her doctor prescribed antidepressants. She immediately told me about how she suddenly felt like her head was hot and sweaty, she felt confused, had sudden memory losses and had heart palpitations… I looked up side effects of fluoxetine and these were possible serious side effects of that medication. Her gp was away and she went and had her heart checked but as she was told to not get off the antidepressant she didn’t. What she did do was to reduce the dosage and that seemed to abate some of those symptoms. Could this have triggered her dementia? Her doctor never thought to change the medication. In May this year my dad passed away suddenly. He collapsed and mum found him. She had started to not know who he was. She was very confused and had no memory of finding him and asked many times who found him or if the funeral had happened. Then in June she had a hip replacement. She did suffer from delirium and after 3 days became agitated, bit my brother and ended up being restrained Day and night which was extremely upsetting… I spoke with my mum on the phone twice in June and at first she had no idea wher Melbourne was and second call a few weeks later she could only say two words. Then she wasn’t able to speak French and reverted to Dutch. And for a little while in German. She did work as a nurse in geriatric hospitals and did work in Germany for a while. Why speaking in German? She also was trying to eat scrabble pieces. Now it is August. She became more agitated and has not gone home still in hospital although was transferred this time to a geriatric hospital. She is not walking, is in a wheelchair doesn’t talk can’t eat on her own and sleeps most of the time not even holding herself in the chair hardly opening her eyes. My brother sent me a video… what happened to my mum? How can she have declined so quickly? I’m going over to France in a few weeks and haven’t seen her in 2 years. I’m devastated. How can she deteriorate so quickly? Could she be sedated? I don’t know what to expect during my visit….
Leslie Kernisan, MD MPH says
Sorry to hear of your mother’s decline these past years, and also more recently.
Well, it is possible to develop a new dementia quite rapidly but it’s actually quite rare. What is far more common is that an older person has developed underlying Alzheimer’s or another neurodegenerative condition (which starts changing the brain at least 10 years before there are symptoms), and then sometimes an episode of delirium or a medication side-effect can quickly tip them into much worse mental function. This may be what happened to your mom a few years ago. Many newer antidepressants are considered “well-tolerated” by most older adults, but some people do have more of a reaction or more significant side-effects.
In terms of her decline over the past few months, you describe a number of pretty significant stressors to her mind, body, and overall health. First she was suddenly widowed, then she had a surgery and sounds like that may have been complicated by delirium. Poor thing. In terms of not walking now, I can’t say why that’s happening, but I will say that people her age lose physical strength very quickly when they are bedbound and generally it’s pretty easy for them to enter a self-reinforcing negative spiral once hospitalized.
It is possible that she’s also being sedated, to manage confusion or agitation related to her dementia +/- current (or slowly resolving) delirium.
When you see her, you may want to ask questions such as:
– What medications is she on now, are any of them sedating or otherwise intended to control behaviors? (more on such meds here: 5 Types of Medication Used to Treat Difficult Dementia Behaviors
– What are they doing to help her restore or maintain mobility?
– How do they expect her condition to change/progress over the next 3-6 months?
– What could be done at this time to improve her comfort and quality of life?
I have more on decline in dementia here:
How to Plan for Decline in Alzheimer’s Dementia:A 5-Step Approach to Navigating Difficult Decisions & Crises with Less Stress
Good luck with your visit and good luck to your family. I hope you get some answers during your trip and that you get to spend some quality time with your mother.
Bernadette Balkans says
My nanny recently celebrated her 106th birthday and lived with my aunt (her daughter) until recently. She could walk with the walker from room to room, had no real signs of dementia, could eat what she liked, sit outside on the terrace and was in general good health for this extreme old age. A few weeks after her birthday, she fell,hit her head and fractured her hip at home. She was hospitalized for 3 weeks and suffered delirium and is now in a nursing facility; has extreme confusion, agitation,keeps screaming that she is a lesbian and babbles and mumbles incoherently and incessantly. I realize she is very,very old now at 106,….but my question is this: can delirium actually make a person so sick and mentally impaired so fast after a trauma or illness like this ?
Leslie Kernisan, MD MPH says
How wonderful that your nanny celebrated her 106th birthday, that is a rare and special achievement.
The answer to your question is yes, when things like hospitalizations, head injuries, fractures, and/or delirium occur, it is possible and actually fairly common for an older person to experience a drastic impairment in mental abilities. The older a person is, the more likely this is to happen. Also, generally the older a person is, the longer it takes to recover, and some people never recover all the way to the way they were before.
I hope your nanny has gotten at least a little better by this time. Good luck!
Emmie says
I wonder how much delirium has sped up the onset of my mom’s Alzheimer’s. She had 5 major surgeries in her 60’s (foot and hips surgeries) and each time she went through months of really bad forgetfulness. Each surgery made her worse, and last time I found all of her narcotics and other meds all mixed in a bowl on her counter. It was scary. She had no idea what she was taking and every time I asked I got a different story, “I haven’t taken oxycodone for 2 weeks” then the next day “I haven’t taken oxycodone since yesterday”. Anyway she is in rapid decline Alzheimer’s now at age 71 and I just wonder how much all the surgeries followed by delirium may have impacted that.
Leslie Kernisan, MD MPH says
Sorry to hear of your mother’s decline.
Unfortunately, it’s never possible to know exactly what contributed more or less to a particular person’s decline in Alzheimer’s. It’s certainly possible that the surgeries and any related delirium might have made her worse, but we can’t know for sure.
If you are wondering how to help her stabilize and maintain what is left, being very selective about future surgeries would make sense. Otherwise, I would encourage you to get as much support as you can, in processing your feelings. It’s very normal to feel sorry, grief, frustration, the “if only” feelings, etc. Don’t go through this alone! There are online dementia caregiver support groups that can help. They can also provide ideas on how to help your mother have the best life possible now, and for whatever time she has left. Good luck and take care!
Eleanor says
I had never heard of this complication until about 2.5 weeks ago when my mom had abdominal surgery for cancer. She developed delirium while in the hospital after surgery and it has been so scary. Sleepless nights full of terrifying hallucinations for her and a level of exhaustion for myself I had never experienced before. I have suspected for quite some time that she had signs of dementia. I alerted her PCP to my observations, but hadn’t said anything yet to my mom for fear of offending her. Anyways, I don’t really know where to go for help for her. Her hospital doctors blew it off and just told me it was common. Her PCP said he can’t refer her anywhere until she can leave the rehab place where she is headed to today. Since she had been showing decline long before surgery, I just don’t have a clue how long it will take to see any improvement, or if she even will. I just wish I knew who to call to help her now.
Leslie Kernisan, MD MPH says
Sorry to hear of your mother’s situation. If you’ve noticed changes and had previously suspected dementia for some time, then it’s quite possible that her health providers will eventually confirm this diagnosis. Normally they should wait for a while for her delirium to improve. Some older adults improve quickly, but some of them take weeks or even months.
I did recently write an article about what an initial evaluation for cognitive concerns should cover. The history of when problems started is important, be sure to let the doctors know this.
Cognitive Impairment in Aging: 10 Common Causes & 10 Things the Doctor Should Check
Good luck and I hope she improves soon!
Ken Hwan says
It surprised me that some people with delirium can never fully go back to their previous level of brain function. I have a grandmother who was very lively before she was diagnosed with alzheimers and dementia, and ever since we took her to her care center she has been more distant. I hope that overtime she can retain most of her personality.
Leslie Kernisan, MD MPH says
Yes, some people with dementia become more withdrawn after a move to a care center. She may improve once she adjusts. Or it might be her condition progressing. Or it’s potentially that she’s not getting good care there. You may want to check on how things are at the care center, to see that she’s getting enough stimulation and kindness. Good luck!
Mitch Thomson says
Hi,
I was wondering whether the loss of a loved one would accelerate Alzheimer’s? Our grandfather was diagnosed with the disease 8 years before he passed away. Over this time his partner passed away, a few years later our father passed away and he was also hospitalised many times from falls and car crashes. Which I have no doubt increased his decline.
However, our aunt took him to get his will changed 7 years after diagnosis, so that she was the sole inheritor.
Where can we find facts for this that would hold up in court?
We loved our grandfather dearly and it’s so terrible to discover our aunt had exploited him in his final years.
Leslie Kernisan, MD MPH says
This sounds like a sad and difficult story.
Grief and bereavement can certainly make a person’s mental function worse. Whether it may have accelerated your grandfather’s decline is probably not relevant to the issue at hand, as we would expect most people to decline mentally within 7 years of an Alzheimer’s diagnosis, whether or not there had been bereavement.
I’m not an attorney and don’t have particular experience in questioning changes to a will, especially after the person in question has died. In general, my understanding is that for a legal document to be valid (including changes to a will), at the time of signing the document, the person has to have the capacity to understand the document and the implications of signing it.
Decision-making capacity is task-specific (you can lack it for certain more complicated decisions but have it for simpler ones, or ones that fit better with what your brain is able to do), and also can fluctuate with time (some people with Alzheimer’s are better in the morning and worse later in the day, when they are tired). I have more on decision-making capacity here: Incompetence & Losing Capacity: Answers to 7 FAQs
A diagnosis of Alzheimer’s by itself doesn’t mean a person has lost capacity to change his will, but once Alzheimer’s has progressed beyond the early stages, most people eventually lose the ability to sign legal documents.
I suppose if you wanted to question his capacity to sign the will, you could try to gather evidence of what his usual mental abilities were at that time in his life.
I would recommend consulting with an attorney who has experience contesting these kinds of will changes in people with a dementia diagnosis. They would be better able to tell you what kind of evidence you would need to pursue a case.
Angelika says
Hello Dr. Kernisan; my husband is in the beginning stages …not sure if I should call it Alzheimer’s… but whatever it is; he gets confused, can’t follow directions, and his short-term memory is getting rapidly worse. We live in a large house, and he always tended to the garden, which he loves. I would like to downsize before he gets worse… or is it already too late? He has agreed to this. I’m just wondering if moving may speed up the decline, and just make everything worse. I would really want to simplify our lives and move as long as we can physically do so. I am looking forward to reading your comment on this. Thank you.
Leslie Kernisan, MD MPH says
So sorry to hear of your husband’s difficulties.
Probably there is no right answer as to whether you should move or not, all you can do is consider the likely pros and cons of your options.
It’s true that if you move, this will be stressful and disorienting for him in the short-term. It’s hard to know whether this will accelerate his decline or change his long-term trajectory, it would depend in part on how well you can support him through the transition and also on how well the new environment meets his needs. Every person with cognitive impairment benefits from activities and companionship that provide pleasure, stimulation, and reassurance, and being out in nature is also generally very good. If you move, will there be a garden or other opportunity for him to enjoy time outside?
On the flip side, if you stay, in the large house a burden for you financially, or in terms of maintenance? Yes, he may love the garden but you have to take other issues into consideration, including your own wellbeing and stress.
On a separate note: I hope you will be able to get him a good evaluation, as it’s important to have him assessed. It’s possible that certain things can be done medically, to help him think or feel better. I have more information on evaluating cognitive difficulties here. Good luck!
Some people are also reporting improvement with Dr. Bredesen’s approach, which involves a very detailed evaluation and then very detailed lifestyle intervention.
Angelika says
Thank you so much for your long answer. You have confirmed many of my own thoughts. I will wait and see what the evaluation comes up with, but at this point, I tend to think we should remain in our house. I think it would break his heart if we moved. I guess I will downsize within the house, and when the day comes to move… I will be prepared. I’m going to check out your link. Thank you again for your time and valuable advice.
Robin says
My mother is 75 and was diagnosed with dementia 5 years ago. She has shown significant decline the past few months . Her mother past away a month ago and since then she has really declined. She is showing signs of Delirium everyday (sometimes most of the day). Can a trauma like a death cause delirium in a person with dementia? Does this typically progress or get better with time? My dad is with her most of the time and we don’t know how to get them help.
Leslie Kernisan, MD MPH says
Sorry to hear of your family’s recent loss.
So, what you’re describing sounds like it falls into that gray area between “true” delirium and a person with dementia doing worse because they’re unhappy or anxious or stressed.
If your mother has gotten worse over the past few weeks, it certainly would be reasonable to consider a medical evaluation to make sure she’s not experiencing one of the usual medical causes or contributors to delirium (electrolyte imbalance, medication side-effect, pain, constipation, dehydration, etc). Infections such as UTIs are also a common cause of delirium, but usually those will either clear up on their own or get worse within several days, it would be unusual for an infection or other serious illness to cause nothing but extra confusion for weeks.
Otherwise, whether or not we call this delirium, the answer to your question is yes, bereavement or grief or other mental trauma can certainly cause a person with dementia to get much worse. I don’t think this has been as well studied in research, compared to hospital delirium, so hard to know what to predict for her future. Grief and bereavement in cognitively normal people often causes distress for months or longer, as you probably know.
I would recommend you contact her usual healthcare provider for more guidance as to whether a medical evaluation seems justified or not. Otherwise, you will need to do your best to provide her with as much emotional support and stability as you can. She may eventually get better but she may not…among other things, the nature of this kind of disease is that people slowly get worse over time. Just do the best you can to support her, and keep an eye out for medical problems that could make her worse. Good luck and take care!