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)
Madge Wielander says
My mother was fine and functioning well at home until 86. Then she was hospitalized for late-age onset Myasthenia-Gravis; acquired Sepsis-shock and a C-Diff infection and then her cognitive health declined rapidly. She is now 88, in a nursing home, has bad dementia, is incontinent and bed-ridden….it is so heart-breaking !
Leslie Kernisan, MD MPH says
Oh, that does sound awful. I hope that at least it’s a decent nursing home, so that she can still have good moments despite the challenges.
Gary P says
Hello – My father just underwent surgery for a toe amputation due to infection from a non healing wound
he has both Diabetes and MS
he seemed pretty good after surgery and was good in the hospital, just repeated himself a bit and once asked for his deceased mother.
He has not been diagnosed with Alzheimers or dementia.
Now he is in a re-hab nursing facility for two days and its completely different
He thinks he has been arrested and police have taken him and arrested him
for being naked on the highway,
And that the facility is making him work in a grocery store against his will.
Its all extremely scary and My mother is freaked out, we all knew the physical recovery would be difficult, but no one was prepared for this variable.
Any advice or encouragement would be extremely appreciated.
Leslie Kernisan, MD MPH says
So sorry to hear that his mental state has deteriorated while in rehab. I’m sure it’s indeed very scary. It does sound a lot like delirium, which is very very common.
Generally, if someone gets worse like this a few days after hospitalization, we would start an evaluation to look for causes and triggers of delirium.
I would recommend reading the related article on hospital delirium, there is a lot of information relevant to your situation (esp in the comments section): Hospital Delirium: What to know & do.
When talking with your dad, try to avoid stressing him out. This usually means being reassuring and soothing, and especially not arguing with him or trying to explain why his concerns are invalid. With time and the right treatment, most people eventually improve. Good luck!
Judy Davis says
My mother is 85. She called me about 6 weeks ago and asked if she could come visit me because she needed to get away. My father had passed away 2 years prior and his birthday was approaching. I think she wanted out of the house for a few days. (he was abusive) I said I’d be there as fast as I could (I live 7 hours away) and we planned to get her the following week. In the mean time she slipped and fell in the tub and fractured a rib. She was able to get herself up and called me to tell me she couldn’t come, which I find odd that she didn’t call for help first. She went to the ER and came home. Within a couple days she was extremely confused. She talked about my dad being at the house and stealing her car. She went back to the ER and they discovered a raging UTI. She never came out of her confusion. She was put into a nursing home and has declined ever since. (this all happened in 5 weeks) She was just put on a puree diet because she is pocketing her food. Every test has been done with the exception of a spinal, which is scheduled in 3 days. She sleeps most the time and is hard to wake up. Her tongue is thick and she moves it odd. She stopped using her left arm completely. She’s not walking at all. She stares off at nothing most the time. She occasionally talks but not much and for the most part its repeating what someone else says. She startles very easy. They thought B12 so she started getting shots which did nothing. She’s had a whole lot of tests that I can’t even begin relaying what they were for. What could make her decline so fast? Is the spinal worth it or is it just more traumatic for her? I immediately thought YES for the spinal because its only been a few weeks since she was completely coherent, driving, functioning just fine but now I don’t know.
I should add that the doctor has said its rapidly progressive dementia. Which is what brought me to this page.
Leslie Kernisan, MD MPH says
Wow, sounds like your mother has been through a lot these past few weeks. You must be so worried for her. It does sounds like she’s experienced some delirium related to her UTI and hospitalization, but since she’s become quite impaired over the past few weeks, the question is whether she has something else going on in her brain that is causing these symptoms.
Staring into space, being inattentive, repeating what others say can definitely be delirium. Not using her left arm at all sounds more unusual, but presumably they have scanned her brain and concluded it’s unlikely to be stroke or something similar.
True rapidly progressive dementias are unusual but they do happen, and some can be treated. Among other things, they can be related to autoimmune activity affecting the brain and to certain viral infections affecting the brain, so that is part of why a spinal tap (which allows analysis of the cerebrospinal fluid, aka “CSF”) is being recommended.
Here’s a good, albeit technical, article on rapidly progressive dementias:
Rapidly Progressive Dementia
(See the later part on “Diagnostic Approach to Rapidly Progressive Dementias”)
Given all she’s been through, adding on a spinal tap will probably only be a small amount of additional discomfort/distress. It might provide some useful information to the doctors, and it might help them tell you what they think is going on, and what to expect.
If they don’t identify a specific cause for her symptoms, then it’s possible that much of her confusion is due to delirium, and she may well improve with time. It can take weeks or months. You say she was in good condition before this all happened, so she has a decent shot at improving from delirium, although she may not quite get back to how she was before.
Good luck and let us know how it goes.
Sue H says
My husband is only 67 but is frequently ill. He has asthma and gets numerous chest infections. He often becomes disoriented and delirious. This has happened since he was in his fifties. As you’ve stated he is often much worse at night and causes me to be very stressed, miss sleep and become socially isolated. I don’t know what to do or who to speak to. You often say to talk to your medical practitioner but unfortunately he is a medical practitioner and in his lucid moments tells me I being ridiculous and that it’s really common to be like this when you have flu/bad chest infection. These episodes happen a few times a year and I am convinced are affecting his cognition and especially worried that he will develop Alzheimer’s. He makes it clear I should not talk to his doctor and would be angry if I did. Once he’s recovered from his infection and is back to normal (delirium over) he implies that he wasn’t as bad as I say and won’t discuss it. (I’ve tried taking videos to show him how bad he is, but that just distresses him and he won’t watch them when he improves as he is humiliated). Our life then slips back into some kind of normality for a few months but I live in dread of the next episode , which I know will occur. How could I deal with this in the home setting or who could I get help from? All yours articles seem to be addressed to medics who are treating patients or to friends and family who have ongoing contact with physicians/ hospitals.
Leslie Kernisan, MD MPH says
Oh wow, this is indeed a tough situation.
So if I understand correctly, your husband has a history of asthma, gets “chest infections” (I guess this is some kind of upper or lower respiratory infection) a few times a year, and becomes delirious while ill. It sounds like he does not get hospitalized for these. He is a clinician and he has a doctor, but sounds like the doctor is unaware of the delirium.
First of all, I would say it sounds unusual to me that a person aged 50s-60s would become delirious during an illness that is not severe enough to require hospitalization. Becoming delirious outside the hospital IS common in older adults, but usually those people are much older and/or have pre-existing cognitive impairment, such as a diagnosis of Alzheimers.
This doesn’t mean your husband has Alzheimer’s or another dementia, but he does sound more susceptible to delirium than most people of his age. This may or may not mean that he has an underlying condition affecting his brain.
I do think it’s reasonable to be concerned about his delirium episodes, but for now, it might be more constructive for you to worry less about the long-term impact on his cognition, and more about his own safety during these episodes (if he is getting delirious, he might be developing low oxygen or other worrisome signs that would lead us to usually recommend hospitalization) and also on how these episodes are affecting you.
Now about what you can do. It sounds like the communication between you is difficult — at least when it comes to this topic. I don’t know if he’s always been difficult or dismissive of your concerns, but it’s quite possible that he is feeling scared and anxious about this and the possibility that something might be changing in his brain. Plus this topic brings up anxiety for you too.
Another issue for you to consider: have you noticed any other changes to his behavior, memory, or thinking, that might be cause for concern? If so, he certainly needs evaluation, but this also means it might be even more difficult to communicate with him and negotiate a way forward.
Probably the best way to approach this would be to get someone to help you discuss the issue. A good couples therapist could be very helpful, and is trained to help couples negotiate these issues. (the ideal would be a therapist with experience helping couples address aging issues or health concern.) Alternatively, you could see if someone else in the family or in your circle might be able to help.
You can also potentially decide to override your husband, and you can inform his doctor of the issue. It is legal for you to do this, I explain how HIPAA rules apply to family members here: 10 Things to Know About HIPAA & Access to a Relative’s Health Information.
And yet another option would be to call for help when he is delirious. It’s medically reasonable since delirium can be the only outward sign of a life-threatening illness.
Basically, you will have to decide whether it’s more viable to ask for permission versus ask for forgiveness. I do think it’s best to make an effort to come to an agreement about how this can be brought up to the doctor. In general, you should use “I” messages and emphasize your concern for his wellbeing. Also good to frame your suggestions as ways for him to meet his goals, such as staying in good health for as long as possible.
Try to avoid or be very careful in bringing up possibilities that generate a lot of fear. (So, may be better to not say “I’m concerned you will get Alzheimers” and instead say “I’m concerned this could the sign of something wrong, which needs to be detected and addressed,” or “I’m concerned that during one of these episodes, you could fall dangerously ill at home.”) There are actually many non-dementia problems that can affect memory and thinking, I explain them here: How We Diagnose Dementia: The Practical Basics to Know.
Last but not least, you need to work on your own self-care and your own resilience and skills in facing these difficult situations which raise anxiety and the prospect of future health changes that you can’t entirely control. Find a support group online (there’s a good one at AgingCare.com). Consider a mindfulness or meditation practice. Consider counseling or therapy for yourself, so that you can better cope with the dread that the situation is currently creating for you. Make sure you get enough sleep and exercise.
I wish there was an easy way forward for you but there probably isn’t! Try to take care of yourself and keep doing what you can. Good luck!
Sue Cowley says
What a brilliant article. My 80 year old next door neighbour was admitted to hospital 3 weeks ago with infections caused by her foot ulcer, which developed about 6 months ago. She has no next of kin as she is an only child, she has no children and her husband died over 20 years ago. We have been neighbours for over 30 years, but as I am not her relative, staff cannot give me any details about her condition or treatments. She has multiple health problems, rheumatoid arthritis which began in her fifties and she developed diabetes about 5 years ago. She had a hip replacement some years ago and developed a blood clot, so she also takes warfarin as well as steroids and diabetic medication. I have noticed a slow decline in her cognitive abilities over the last 5 years, she now has difficulties remembering how to use her computer, microwave and music centre Since going into hospital she has severely declined as is almost always very confused when I visit and suffers hallucinations. She has been assessed by a Social worker who says there is no underlying dementia, although I know this is not true no one listens to me as I am not her next of kin.
I now understand, after reading your article, that she is suffering from delirium, but despite being treated with antibiotics for the last 3 weeks there is no improvement. In fact when I visited today she was more confused than I have ever seen her. Her mobility has never been good, but she could get around at home, wash and dress herself and get her own meals. She is now confined to her hospital bed and incontinent. I have been told that she will won’t be allowed home as her care needs can’t be fulfilled there as they are too complex. Who will make these decisions on her behalf as no one has Power of Attorney and as far as I am aware she has no relatives living? I find it hard to see her in this predicament as she was an intelligent, independent, retired businesswoman.
Leslie Kernisan, MD MPH says
Thanks for sharing this story. Sounds like your neighbor is in a sad and difficult situation. A few thoughts:
– If you noticed signs of cognitive decline in the past five years, then I agree that she most likely she has some dementia (perhaps mild) which is now being worsened by delirium.
– The social worker — and the involved doctors — SHOULD take your information about your neighbor into account. We are supposed to consider information provided by all knowledgeable and reliable informants, regardless of whether they are kin or not. People who have lived near or worked with a person for a significant length of time generally qualify. It’s really too bad if they are ignoring your input.
– If she is currently still very confused, it’s true that she probably can’t go home. This is going to make it harder for her to recover, esp if she doesn’t have family to visit her and help her recover wherever she is. Normally when an older person loses mental capacity and has no kin or POA, the social workers initiate a petition for guardianship. Some jurisdictions have a “public guardian” who manages the affairs and health decisions for people like your neighbor; in other places, there are professionals who take this on.
As her friend and neighbor, you can certainly put what you know in writing and keep providing it to the involved clinicians and others.
They also technically are allowed to divulge some information to you. I explain this further here:
10 Things to Know About HIPAA & Access to a Relative’s Health Information
Good luck, I hope you find a way to help your neighbor!
Kevin says
My mother (75yrs old) had her first episode of dementia about a year and a half ago. I brought her to the hospital and they did all the scan and blood test and nothing came up. The episode been on and off for the past year and half. The doctors diagnosed her with uti and gave her antibiotics to treat it. She did get better after taking antibiotics, but episodes keep coming back and she has been in and out of hospitals many times in past months. Her memory is decling rapidly these past few weeks. She can’t finish her sentences and forgetting what she wants to say. She needs help getting dressed and do daily task when she is confused.I really don’t know what I can do anymore because I’m the only one at home that’s taking care her and I also have and older sister that has schizophrenia that can barley do anything herself and also needs help. I’m am so burnt out and running out of options. ?
Leslie Kernisan, MD MPH says
Yikes, sounds like you have a lot on your hands.
Memory “declining rapidly over the past few weeks” sounds concerning to me. Dementia usually progresses slowly, so if someone starts declining quickly, we usually start checking for medication side-effects and new/worse health problems; the evaluation would be similar to that looking for delirium causes.
Your feelings of burn out are also very concerning. It is really common to become burned out by the situation you describe; you have surely been doing hero’s work for far too long and with far too little support.
Caregivers often feel quite stuck when they are in your situation; their aging parent clearly needs a lot of help, the caregiver feels overwhelmed, and so it’s hard to figure out how to take care yourself, get more help, and set limits.
But, that is what you need to do: find ways to take care of yourself, get more help with your mom, and set healthy boundaries so that you don’t remain burntout or fall quite ill yourself.
To get started with this, I recommend joining an online support group for people caring for aging parents. There is a very active one at AgingCare.com, see here. If you post about your situation, I’m sure you’ll get at least a dozen responses offering support and advice. Support groups are especially good for getting advice and moral support on dealing with family members and finding other sources of help.
Other good resources to try:
Family Caregiver Alliance Care Navigator
Your local Area Agency on Aging (find it using this locator service)
Search for local nonprofits that offer support to people caring for aging parents
You will need to take care of yourself in order to have the energy and ability to advocate for your mom, and help figure out what is going on with her medically. Good luck!
Kathy says
This is a very useful and informative article.
My mother was sent to hospital due to Influenza A with high fever in mid 2015. We believe that she suffered delirium during her stay in hospital. We are not sure whether it was due to her high fever or not but she was disoriented and talking a bit nonsense. We told the doctor-in-charge who arranged an occupational therapist to do a MMSE test on her. The result was, as expected, very low – 16 scores. I find it strange that why the doctor decided to do this test in that situation. Before her stay in the hospital, her score was 21. Recently a geriatrician told me that my mother’s case was probably due to fever, temiflu and the stress/environment in the ward. My mother was discharged a few days later but the condition was improved very slightly and slowly. Last year, she did another MMSE test and her score was 19.
Leslie Kernisan, MD MPH says
Thank you, I’m glad you found this article helpful.
MMSEs and other forms of bedside cognitive testing are sometimes done in the hospital, but they should not be used to diagnose or confirm dementia, because there is such a high chance that an older person is delirious and hence will have worse mental function than usual.
Delirium is unfortunately very common among older adults with cognitive impairment.
Denise says
My husband is. Invincex he’s getting well. I just nod a lot and smile. I worry he’s going to realize it’s not so and crash. What can I do?
Leslie Kernisan, MD MPH says
I am assuming you meant to wrote that your husband is convinced he’s getting well, and that you’re worried that at some point he’ll realize it’s not so.
Smiling and being supportive is a good start. As to what else to do, it really depends on your situation and the particulars of your husband’s health circumstances.
I would recommend you find a caregiver support group, either locally and in-person, or online. Other caregivers will have lots of ideas and suggestions for you.
You can also voice these concerns to your husband’s doctors, they should be able to advise you. Good luck.
Debby says
I read your article and several others.. I appreciate how you explained the different things to look for and how to treat.. My mother had been slowly but stedily declining from alzheimers, for years.. One thing that always made her happy was walking around her yard looking at her flowers, one of those days the neighbor had his dogs out again without a leash, they attacked my mom. the whole way to the hospital she was saying are they going to be mad(meaning the neighbors).. she said they could have bit her but “they” would be mad.. so instead she fell and something scratched her.. At the hospital I explained the whole story. But mom kept saying they just knocked her down.
Anyway long story short since that day she was back and forth to dr. and hospital several times, all had a nurse coming every other day. she ended up having surgery on that leg and at that time they new for sure it was a vicious bite. I kept telling everyone that would listen that her memory was getting worse.
Within 8 months of the day she was looking at her flowers and was attacked she passed away.. Never went for a walk around her house again. she was so afraid. After that she wouldn’t walk anywhere unless I was by her side, I miss my mom so much and I know she would have still been here had this not have happened.
Leslie Kernisan, MD MPH says
Oh, that’s a sad story. I’m very sorry this happened to your mother, and sorry for your loss.
You may find it helpful to connect with others who have also lost an older parent and are missing that person intensely.
Debbie says
Dr. Kernisan,
This website and information has been a life saver for me in my efforts to help my mother who is 76 years old and diagnosed with Alzheimers. She had a couple of unavoidable stays last year in the hospital (due to falls) which accelerated her decline due to delirium which was treated as if she was just being an unruly and difficult patient. Once I understood what was going on due to your information we have been able to protect and support her. I now share this information with everyone I can.
Recently I was reading many articles on your website and came across something that referred to what we might expect to contribute to my mother’s decline. In other words, it was quite detailed in challenging the reader to think about possibilities and prepare for the future. If I remember correctly, it encouraged planning and preparing for the seasons along the way as other medical conditions not Alzheimers are the culprit. Right now things are stable and quiet. It is hard to imagine what to expect. I know there is no way to guarantee what will happen. But the article was stimulating in that it had practical information and scenarios which made it more real. This is so needed because I feel paralyzed and sometimes in denial and cannot really envision what to prepare for. Is there any way you know which article I may be referring to? I cannot find it again and want to talk with my sister about Mom’s future. We have a will, power of attorney, health care proxy, etc. in place but this article was so very good and approached preparing from a different place. I know I’m not giving you much to go on but whatever you can share will be helpful.
Thank you for your generous heart and help. You are really making a huge difference in this world and in our lives.
Leslie Kernisan, MD MPH says
First and foremost, thank you for this comment, and especially for being specific about the ways in which this site has helped you and your mom. It is feedback like this that has helped me sustain the time and effort that I put into the site.
In terms of advance planning for dementia, what to expect is continued slow decline, occasional health crises, and if your mother lives long enough, eventual very late-stage dementia.
Here are some articles and BHWA pages where you might find what you are looking for:
3 Things Caregivers Should Know About Better Healthcare in Alzheimer’s
2 More Things to Know About Better Healthcare in Alzheimer’s
5 Tips to Help You With End-of-Life Planning
(You can find most articles on either dementia or advance care planning/end-of-life by clicking “Popular Topics” in the navigation bar.)
I also have a Slideshare on advance planning in dementia here: End of Life Issues in Dementia: Planning and Managing
Some additional resources you might find helpful are:
Conversation Starter Kit for Families and Loved Ones of People with Alzheimer’s Disease or Other Forms of Dementia
Advanced Dementia: A Guide for Families
I hope one of these will be what you were looking for! If not, let me know and I will take another look through the site…
This would also be a good topic for me to address in an article, but I may not be able to get to it until the fall.
Thank you once again for being part of the community, and for sharing your story.
Elsa says
My 74 year old mother past away about a month and half ago. Her dementia declined very fast the last two years. We did not know what kind of dementia my mom had, but as I have been reading on the different kinds of dementia, the one that my mom had the most symptoms of was LBD. She would fall at times, hallucinated, her sun downers would happen anytime during the day. Towards this past year she was having trouble walking and her doctor said that it looked like Parkinson’s disease because she would shake. Well Mom got therapy and started improving. She was walking better and getting up on her own. One Saturday morning I took her to the restroom and got her ready for the day. As I we were walking out of the restroom my mom lost her balance. She fell on her hip first and the her body went back and hit the back of her head on the tub. The ambulance came and took her to the hospital. They did a CT and everything was normal. They sent her home. At home we noticed that mom could not walk eat on her own and could not talk very well. My mom past away ten days after the fall. I have been going crazy wondering what happened. Why the fall caused her death. I feel guilty for not being extra careful. I want to know what happened. Maybe you cannot tell me exactly what happened, but where I can get answers.
Leslie Kernisan, MD MPH says
It’s probably too late at this point, but to understand what happened medically before your mother’s demise, you would need an autopsy and probably also a review of all her medical records and care in the months leading up to her death.
Her death ten days after the fall may or may not have been caused by the fall. It is quite possible for an older person to develop a problem — such as a heart problem or a preliminary stroke — that can cause weakness and a fall, and can also lead to death soon after. So I would not assume that the fall directly led to her death.
You can try to pursue the medical investigation further if you feel you need to. But I would encourage you to instead get help processing your grief and guilt. Even when people are quite careful, accidents happen. Try to not beat yourself up over your mother’s fall. Remember that you were involved caring for her during this last phase of life, which was a wonderful gift to her that not all older people get to enjoy.
Remember also that if she was declining from her dementia and other conditions, she was likely to die within a few years no matter what you did. I’m sure you wanted more time with her, and probably she wanted more time too. But life happens in certain ways and we have to accept it.
So…please try to remember all the things you did for her, and also try to accept that usually we can never know exactly what happened or why things happened as they did, and part of the process is trying to make peace with this. You did the best you could and I’m sure that overall, you did well by her. Good luck and take care.