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)
Noni says
My 93 yr old mom had mild dementia. After attending a wedding,she had stomach cramps. My sister took her to a local hospital where they insisted on inserting a tube down her throat. They found nothing. After that,she was delirious and it was really frightening. My sisters and I spent every moment with her while she was in the hospital. After about 4 days she was released. The cramps had gone away but mentally she never recovered. The dementia got much worse. I wish I had known then what I know now. Although my mom lived to be 98, the last few years,in a nursing home,were not the best. If she had not had that procedure, my sister,with whom my mother lived,might have been able to still care for her,but it became too difficult. Thank you for your article.
Leslie Kernisan, MD MPH says
Thank you for sharing your story. It must have been heartbreaking to see her not recover after that episode of delirium.
magazi ahmed says
I need your help, my grandma has Alzheimer and she’s sleeping with me in my room, where I have a mirror, not only she didn’t recognize herself but she started talking to the mirror, it sometimes made her happy, but other times it left her sad and I dont know what to do about it, I want her health to improve and her stress decrease.
Leslie Kernisan, MD MPH says
If your grandmother with Alzheimer’s has suddenly gotten worse (e.g. over the span of a few days), then it’s a good idea to have her evaluated for possible delirium.
If you are just concerned because her behaviors are strange or bothersome, then I would recommend a good book on what to expect with Alzheimer’s and how to manage common behavior challenges. You can try Surviving Alzheimer’s: Practical tips and soul-saving wisdom for caregivers. You can also get good advice from your local Alzheimer’s Association, or from a support group for dementia caregivers.
I also have advice on managing difficult behaviors here: 5 Types of Medication Used to Treat Difficult Dementia Behaviors.
To improve her health, talk to her doctor about your concerns. You should also try to optimize her brain health through these suggestions: How to Promote Brain Health. Good luck!
alice h knaub says
I am reading all of these stories and they are sad,sad, sad. I can relate because my Husband has markedly cognitive decline. He flew for 26 years in the USAF, accumulated 16 thousand flying hours and now asks me who I am!…. A question or query….why can they take care of tumors in the brain with proton therapy without using any invasive treatment and also manage to have a covid vaccine ready in less than a year when it normally takes 5 and more years. and there is no breakthrough for this horror of a disease? I also become quite frustrated when I see these so called wonder cures for memory loss in commercials. All of us are vulnerable and eagerly pay lots of money to try these OTC meds out. None of them work and truly, it makes me angry and like I said frustrated.
Nicole Didyk, MD says
Thanks for sharing your experience, and I can understand your frustration with the limits of the current dementia treatment options. I share your disgust with ads for dementia cures or supplements for brain health – none of those have any evidence of benefit and can be a huge waste of money for people looking for help.
I can imagine that you have your hands full, but any opportunity that you have to share your story and advocate for more funding for dementia research and support would be extremely valuable.
I remain hopeful that there will be better treatments for dementia in the future, and we’re learning more about prevention all the time, too. Thanks again for leaving your comment.
Jamie says
I want to know what I can do about
I was just diagnosed with very early Lewy body Dementia. I read about all these signs and symptoms but I want to know if there’s something I can do to fight back and slow the progression no one seems to say anything about this and they all talk about Louis body dementia or Alzheimer’s or any similar type of Issue about signs and symptoms and what caregivers can do what can I do is my question
Nicole Didyk, MD says
Hello Jamie and thanks for visiting the website.
Getting a diagnosis can be stressful and I’m glad to hear that you’re enthusiastic about doing what you can to live well and stay healthy.
My advice for my patients living with Lewy body dementia, or any type of dementia includes:
1. Following a Mediterranean style diet. I like the MIND diet and you can click here to learn more: https://www.thewrinkle.ca/site/blog/2021/01/04/whats-the-best-way-to-eat-to-prevent-dementia
2. Get regular exercise, about 150 minutes per week of fairly vigorous movement. This releases healthy brain chemicals and reduces the risk of stroke, which can accelerate dementia progress.
3. Find out if dementia medication is right for you. Drugs like rivastigmine can increase the brain level of a chemical called acetylcholine. This doesn’t reverse or slow the dementia, but for some individuals, it helps the symptoms and makes a difference in daily life.
4. Connect with the Alzheimer’s Association. You’re right, a lot of resources are for caregivers, but there are support groups, peer groups, and education and recreational sessions for people living with dementia too. You can find their website here: https://www.alz.org/maryland
It’s excellent that you’re reaching out for information and that bodes well for your progress with this condition. I hope you find this website helpful, and I have a website as well, http://www.TheWrinkle.ca which you might find useful.
JC says
Hello,
My Dad (81) went into the hospital 2 weeks ago with a UTI. He is in the mid stages of dementia, but was managing on his own until recently. Once out of the ER, he immediately showed signs of Delirium, and the hospital had him in restraints and sedatives. He did not know his name or who I was. I live over 800 miles away, so I cannot be there with him everyday, but when I call, they say he is not any better and he is still sedated. They did remove the constraints, but his has mits on his hands so that he will not pull out his IV, catheter or feeding tube. They are giving him Ativan. Once nurse tried to ween him off of that and put him on resperidone, but he was just too agitated and kept trying to leave, ended up falling so they went back to sedating him. Now, they are planning on releasing him to a nursing facility tomorrow. They have a sitter in there with him 24×7, so i am really shocked that they would release him if he needs that type of care.
My question(s) are;
1.) Is there anything else that can be done besides sedation?
2.) His infection cleared up within days of being admitted, but there has been no improvement in his mental capacity, absolutely none. Not sure if that is the sedatives, or if he truly does not know his name or who I am.
Thanks!!!
Leslie Kernisan, MD MPH says
Ugh, sorry to hear this has happened to your father. I am not surprised that he became delirious during hospitalization, as this is very common for people with dementia. However, it’s unfortunate that he has been sedated with Ativan and also restrained. Both of those approaches can paradoxically agitate or otherwise worsen the mental state of people with dementia. So they are supposed to be used as a last resort when other approaches have failed.
In terms of what to do now, I would recommend you take a good look at our related article on hospital delirium, as that goes into more details than this article does: Hospital Delirium: What to know & do.
Basically, treatment of delirium requires evaluation to identify all triggers and exacerbators, treatment/management of everything that is aggravating his mental state, and then a supportive environment to help him recuperate. In many cases, the presence of family or other reassuring people can be helpful.
I always recommend that family try to check for untreated pain or constipation, because these are easily overlooked in older adults and can cause or worsen delirium in people with dementia. Dehydration is another common problem that can be overlooked.
If a person is extremely agitated and chemical restraint (i.e. sedation) is absolutely required, most research studies have found that antipsychotics such as haloperidol or risperidone actually work better than a benzodiazepine such as Ativan (unless alcohol withdrawl is a concern). It may or may not be reasonable for your father’s doctors to make another attempt to switch to antipsychotics; you may want to discuss this with them.
In terms of how fast his mental state can improve, you should know that in older adults with dementia, it can take much longer than people expect…often days or weeks or even months. This means it can be difficult to know what’s going on in the early days: is the person delirious because there is still an infection or trigger, or is it just that they need more time for the delirium to resolve? Basically the health care team needs to be thorough, but as family it can be hard to make sure they’ve covered all the bases if you aren’t physically there.
I do hope he improves soon. Good luck!
Doreen says
My father is 85 years old and stage 6 Alzheimer’s disease. His confusion and delusions increase significantly for the rest of the day and evening following a short lunch outing away from the long term care facility. Should we stop outings altogether?
Nicole Didyk, MD says
Hi Doreen. I’m sorry that your Dad is in Stage 6 (out of 7 on the Global Deterioration Scale) of Alzheimer’s. At this stage, every decision involves a bit of a trade off: being socially and physically active can be therapeutic for your Dad, but routine is so vital to supporting the brain with dementia. Even minor disruptions, like going out for lunch, can be enough to provoke responsive behaviours.
If your Dad can get the same type of social interaction and enjoyment from an activity that fits more easily into his routine at home, that would probably be preferable. If the home has a recreation therapist on staff, they may be able to help you with this.
I would add that it may be worthwhile keeping track of your Dad’s behaviour for a few weeks to see if the outing is the trigger for the behaviour change or if something else is setting him off. It may be that some other modification to your Dad’s environment or routine would be more suitable.
Michael Still says
Hello – you refer to hospitalization above and delirium – would you say there is also risk of delirium when moving a person with dementia into a permanent care home situation ? we have noticed an immediate decline in mental and physical ability of our Dad after only 7 days in the Care Home
Leslie Kernisan, MD MPH says
It is very common for people with dementia to experience increased confusion when they are moved into a new environment. This is because changes in routine and environment cause stress, and stress makes dementia symptoms worse. Also, if the placement was from home to a facility, the older person often loses access to people who were a source of reassurance and emotional comfort.
I am not sure whether to call this delirium or not, but it should certainly be expected. If the person gets good physical and emotional care in the new environment, they will eventually adjust and they should improve. Whether they improve back to their baseline will depend on whether they get enough of what they need (again, physically, socially, emotionally) from the care home. It may also depend on how severely they notice and miss the absence/presence of a previously available caregiver.
Now, with a transition to a new care home, there is a high risk of other delirium triggers. For instance, it’s easy for older people to become constipated, either due to a change in routine or a mistake in implementing the same laxative routine as before. Sometimes new medications are prescribed, or old ones are accidentally not included on the new care home’s medication plan. And sometimes older people get sick when they move, possibly because the stress of change depresses the immune system for a bit.
So if your father is not doing well after a week in a new home, I think it’s reasonable to investigate further. It’s possible that he is getting excellent care and this is just part of his adjustment. But it would also be reasonable to check and make sure that pain and constipation aren’t an issue, that everything is being done to optimize his physical, social, and emotional health, and that his medications are in order.
Many care homes are well run, but some aren’t, and in any case it’s always possible for honest mistakes to happen. You will probably need to spend some time paying close attention to your father’s health and wellbeing, while he adjusts to his new environment.
Last but not least: try not to feel too guilty about having had to move him into a care home. I can’t know the particulars of your situation, but in my experience, people only move an older parent into a facility when they have exhausted themselves and their other options.
Good luck!
Mary says
My 95 year old grandpa was walking getting along had early stages of dementia then he fell and broke his him. He had surgery and did rehab. Is home has walked but his mentality is worse but what’s confusing is he will get up around 9 am eat breakfast then sleep all day will refuse to participate in any daily activities will barley take bites of food. But around 5pm he wants to have a cocktail and eat appetizers and then depending what it is he will eat dinner. Then he wants to go to bed but as soon as he gets there he is up will talk nonsense or repeat him self continually . then when 6 am gets here he wants to sleep. Then his day starts over. Is this his dementia getting worse or is he just confused with time. Cause at times he’s alert and knows everyone around him then there’s times he says stuff that is not true or he will stare into space.
Leslie Kernisan, MD MPH says
It’s certainly possible for the answer to your question to be “yes, and yes.” Many people with dementia are permanently a bit worse after surgery and hospitalization. And, dementia itself is associated with all kinds of sleep problems, including getting one’s day/night cycle off.
For more information on sleep problems in dementia, including how to have them assessed and tips on improving them, please see this article: How to Manage Sleep Problems in Dementia.
Sarah says
My grandmother has recently had a fall and has now been in hospital for 2 weeks with a fractured pelvis.
Before going into hospital she had just been diagnosed as being in the very early stages of alzheimers and only suffered very minor memory problems.
2 weeks on and she is unrecognisable. She is hallucinating, remembers very little, doesnt make much sense when talking, isn’t eating or drinking and is very confused.
Can alzheimers really take hold this quickly?
Leslie Kernisan, MD MPH says
Alzheimer’s does not take hold or progress so quickly. It’s delirium that can come on quite quickly, and it often makes people much more confused than they usually are.
See these articles for more information, including information on how delirium is treated:
Hospital Delirium: What to know & do
10 Things to Know About Delirium
I hope your grandmother feels better soon. It often takes longer than people expect for an older person to recover from delirium; it can take days, weeks, or even months, once the delirium triggers have resolved. Support from family does seem to help. Good luck!
Christine Travers says
Could just be the drugs they gave her, ask.
Leslie Kernisan, MD MPH says
It’s true that medications can make confusion much worse when people have dementia, and sometimes can prolong or exacerbate delirium.
Gail Owen says
Hy yes my mums did..eventually she couldn’t walk or talk or do anything for herself. Vety sad
Nicole Didyk, MD says
I’m sorry to hear about your mom’s difficulties. Alzheimer’s disease unfortunately does progress with time, and planning ahead can be helpful.
Sherri says
My 84 yr old father broke his tibia and fiblia. He had surgery and rehab. He was home for about 2 months until his Dr. Said he could no longer live alone. Then we also found out that he has squamous cell carcinoma. He has been under the care of a neurologist for the past 6 yrs. Since all this has happened in the last 4 months his Alzheimer’s seems to be getting worse. I am worried about seeing him change so quickly and all the issues that have occurred. He use to go to the gym 3 times a week and he’s was just informed that he can no longer go. He refuses to walk around the facility or do exercises at all. Idk. Where things are going and how much faster his Alzheimer’s will progress since all has happened in such a short time.
Leslie Kernisan, MD MPH says
Sorry to hear of this. Unfortunately, it’s quite common for older adults to decline after hospitalization for a fracture, especially if they have Alzheimer’s or another dementia. Fractures and hospitalizations are stressful for the body and mind, so most people with Alzheimer’s get worse. And then because they are worse, it’s even harder for them to participate in rehabilitation. Pain management can be a challenge too.
Generally to help people like your father get better, a geriatrician would try to address any delirium triggers. We especially check on pain and constipation, both of which make people with Alzheimer’s worse. Then the trick is to help your father keep moving, both to build up strength and to not get depressed or stir-crazy. It can be hard to manage though, and usually requires nursing or facility staff that are trained in coaxing people like your dad through the recovery period.
I have seen some people slowly get better after this situation, but it usually requires a lot of TLC plus probably some luck as well.
I hope you can find ways to support your father’s recovery during this time. Another option would be to see if you can get a consultation in person with a geriatrician or palliative care doctor. Good luck!
Carol says
My mother declined suddenly and unexpectedly after a routine outpatient biopsy on her bladder was performed; a “minor” procedure, we were told. She developed sepsis, a sometimes fatal blood infection, a week after this biopsy, became seriously ill, was rushed to the hospital ER and from that time forward she was never the same. By this, I mean she steadily lost not only her mental clarity, but her ability to drive, live independently, have her pet and have any quality of life (she as 86 when our saga through multiple hospital stays began). Eight years later, she passed away. My comment emphasizes the need to follow a parent carefully after ALL hospital procedures and be alert for changes in cognitive and physical abilities.
Leslie Kernisan, MD MPH says
Oh, how unfortunate that a minor procedure led to all these complications. That sounds a bit unusual, but it’s certainly common for a serious illness to start a downward slide. You are absolutely right, it’s important to follow an older relative carefully after a hospital procedure.
Also important for older adults and their families to plan for the possibility that a planned hospitalization or unexpected serious illness might lead to longer-than-expected impairments. This is why advanced care planning (designating a surrogate decision maker, expressing preferences for what family should do if an older adult loses independence) is so important.
Thanks for sharing your story.
Tom says
Hi. I am hoping this is still an active blog. My mother was overdosed on narcotics by a CMA at her assisted living facility. God sent an angel into the library about 2hrs later. Mom was found slumped over on the couch barely breathing. She was ruched to the ER where Narcan was administered. The ER doctor was ready to release her back to her apartment 2hrs later. I told him to admit her for observation. To which, he begrudgingly agreed. The Narcan wore off shortly after she was moved to a hospital room. I stepped out to talk with my sibs, and returned 10min later to find her hadrly breathing. Narcan was administered again. This event occurred about 2yrs after her Alzheimer’s diagnosis. There was an obvious, immediate baseline drop. In the 18 months since the event, we have watched what was once a slow, steady decline become an exteemely rapid decline in mental function, and now having no bowel control. Can you point me to a study that ties traumatic events like this, to acceleration of Alzheimer’s, speficially? Thank you so much for your work.
Leslie Kernisan, MD MPH says
Sorry this happened to your mother, it must have been very scary for everyone involved.
I’m not aware of any research studying this association, honestly it would be hard to do, to take Alzheimer’s patients with narcotic overdoses (not sure how often that happens) and then carefully follow their mental function over the next 1-2 years.
I guess my question to you would be, why are you looking for such a study, and how are you hoping the information can help you or your mother? People with Alzheimer’s do decline over time, sometimes slowly, sometimes quickly. It’s certainly common for things to accelerate after some kind of health crisis. In almost all cases, the decline over time is heartbreaking for family to witness.
We do have a newer article on Alzheimer’s decline, it may or may not be helpful to you:
How to Plan for Decline in Alzheimer’s Dementia:A 5-Step Approach to Navigating Difficult Decisions & Crises with Less Stress
Good luck and take care!
Kathy Lucas says
I have a twin sister age 61 that now lives in an old folks home.Karen was diagnosed with a rare brain disease called P.C.A. also she has dementia. Karen had 3 months in the hospital when she was rushed in with a brain bleed. I find Karen declining quickly and she does have halicuations. Karen started showing signs when she was in her 50’s. She was a yoga,exercise instructor and a professional mountain bike rider in her 20’s straight thru till her 40’s. Karen had a very bad fall that she was knocked out,had a helmet on but we think this could have been the start of her disease. To watch her now as she is declining quickly is so sad,since she was so healthy taught good living to so many people. Please look up P.C.A disease to get the full picture of her disease.
Leslie Kernisan, MD MPH says
So sorry to hear that your twin sister is declining. By PCA I assume you are referring to posterior cortical atrophy, which is an unusual variant of Alzheimer’s disease that starts with symptoms related to the back of the brain, which processes visual information and spatial information. In PCA, the first symptom is often visual problems, but it’s actually the brain rather than the eyes which are causing the problems.
I am not very familiar with PCA, as it is indeed rare and apparently is more likely to affect younger seniors. There is more information here, and elsewhere online.
For early-onset dementias or rare dementias, it’s generally best to seek help at a specialized memory center. I’m not sure what works best to help someone like your sister with hallucinations or decline, but most of the fundamentals of good dementia care should apply. These include treating uncomfortable problems like pain and constipation, a reassuring routine with exercise, socialization, and suitable activities, and avoidance of medications that make brain function worse.
With any type of dementia, it’s also important to plan ahead for further decline and end-of-life care. I have a Slideshare on this topic here.
Rochelle says
I am pretty sure the current medication my father in law is taking does make his brain function worsen. Alas I am only an outsider, can’t say much….
Nicole Didyk, MD says
It can be frustrating to see aspect of an older adult’s management plan that might be harmful and feel like you can’t say anything.
A good strategy can be to express interest in their health and develop a rapport where the older adult might feel comfortable with suggestions or information. I know many of our readers share the articles from this site with family members.
Sometimes all you can do is share the information and let the family member make up their own minds along with their medical team.
Kim says
It’s so heart breaking isn’t it, my mum has Alzheimer’s and I don’t know if the nursing home environment has made her worse or if she is just declining due to this nasty disease
Leslie Kernisan, MD MPH says
Yes, it’s indeed heartbreaking to see a loved one decline from Alzheimer’s.
Eventual decline is inevitable, but it’s true that some environments seem to help people do better for longer, and some seem to accelerate their decline. Common nursing home problems that can accelerate decline include:
– not enough suitable activities for enjoyment or stimulation
– workers who are harsh or brusque (people with Alzheimer’s don’t remember the specifics of what happened, but the emotional feeling of what happens lingers with them for a while)
– not enough exposure to sunlight or natural light
– not enough time outside and/or exposed to plants/trees
– inappropriate use of medications to manage behavior
– insufficient attention to new or chronic medical problems
– insufficient attention to discomforts and/or pain, including constipation
Basically, is the environment pleasant, is it stimulating and enjoyable, are the workers caring and pleasant, and is your mom getting her health needs properly attended to? Those are some of the things that all family caregivers have to try to sort out, when a loved one is residing in a nursing home.
Good luck and take care. Don’t forget to seek help and support for yourself; this role will never feel easy for you, but it’s often possible to make it feel a little less overwhelming and sad.
Tim Dumas says
My Mom have Alzheimer’s Dementia. The memory care home that she was living at, did an involuntary Mental health hospitalization. She has been there for 16 days. She is not eating and taking her meds. She is getting worse. Can she be moved to hospice. I am my mom’s POA. she does not want to have a feeding tube. The memory care place will not take her bad. Skilled nursing will take her with us paying private care and having hospice go there to help her. The hospital is telling us that she can’t quafity for hospice for dying because its just the dementia causing her to refuse to eat and take her meds. She is dying. But they want us to pay 8,000 dollars to put her in a nursing home. My brothers and myself do not know what to do.
Leslie Kernisan, MD MPH says
Sorry to hear of your mother’s difficulties.
It does sounds like she’s doing badly right now, but whether she’d qualify for hospice can be more challenging to sort out. I explain dementia and hospice in this article
Q&A: Hospice in Dementia, Medications, & What to Do If You’re Concerned.
Another idea: Can you request a palliative care consultation? Palliative care specializes in addressing distressing symptoms but also in helping patients and families think through their goals for medical care. Even if your mom doesn’t qualify for hospice now, you might be able to work out a plan that is more focused on comfort and her quality of life. Whether this enables you to place her in a facility that suits her needs and yours might be a little tricker to work out, but it still could help to talk to a palliative care specialist.
I have some information on managing decline in Alzheimer’s here:
How to Plan for Decline in Alzheimer’s Dementia:A 5-Step Approach to Navigating Difficult Decisions & Crises with Less Stress
If paying for the needed care is an issue, I would recommend talking to a social worker. Medicaid may or may not be an option; it often takes some digging around to figure it out. You can also try contacting your local area agency on aging, or even the local Alzheimer’s association for suggestions on how to manage.
Good luck and take care!
Yollie says
Hi, my mum has dementia and refused to eat anything for weeks, even stuff she normally liked. She would drink though so I tried her on things like vanilla meal replacements and protein shakes and she would drink that so at least she was getting calories
Leslie Kernisan, MD MPH says
Thanks for sharing your story. Going with high calorie shakes can be a good option sometimes. But in general, if a person with dementia — or really any older person — starts to refuse to eat or starts losing weight, it’s important to get a medical evaluation to find out why. Is there a dental issue or pain in the mouth? Is it that the dementia has progressed? Or it could be a variety of other issues.
In short, it’s important to look into why, while coming up with a short-term solution. good luck!
Betty Acree says
Dear Dr. Kernisan:
For about three years intermittently I have been caring for a woman in her late 80s diagnosed with dementia. As well, she has ARMD, glaucoma and hearing deficit. During a period that I was not involved with her care, her physician put her on Quetiapine 50 mg qd and Escitalopram (dose ? mg qd.) Shortly after I began working with her again, the physician began making changes in dosage and eventually discontinued Quetiapine without tapering the dose. I was getting information second hand from her daughter and unfortunately I understood that Escitalparm was discontinued also. Before and after the medications had been stopped, the lady was complaining of dizziness and feeling weak. Several times her BP was elevated also. On the morning of 20th day after the medications had been stopped, she c/o of feeling weak and lightheaded. I checked her pulse and it was thready and too fast to count. She was transported to the hospital and admitted with diagnosis of A-fib. During the evening she became delirious. The following morning she was discharged to a nursing home. The delirium worsen, the daughter blamed me for the decline in mental status, behavior and A-fib. Did stopping the 2 above mentioned medications cause these changes? Thank you for your help.
Leslie Kernisan, MD MPH says
Hm. I’m not aware of a significant connection between the medications you describe and developing atrial fibrillation.
Atrial fibrillation is very common in older adults and could easily cause the dizziness and weakness that you describe, especially if it causes a very fast heart rate.
I am sorry if you are being faulted for the older person’s decline.
Gail Owen says
My mum was the same in the care home..I cant forgive myself for putting her in there as she declined so quickly..horrible cruel disease it is.
Nicole Didyk, MD says
Hi Gail. It can be difficult to tell if someone would have declined anyway if they hadn’t made the transition to a long-term care home. Transitions can be stressful. I hope you can be compassionate to yourself and let go of guilt.
Linda langston says
Yes my mom has Alzheimer’s & we placed her in a nursing home 6 wks ago they r taking very good care of her but she has declined drastically. I don’t know why …she is in the 6th stage.
Nicole Didyk, MD says
I’m sorry to hear that your mom is living with dementia at a fairly advanced stage. Often, a move to a long-term care home is a big transition that can result in changes in behaviour and mood. In my experience it can sometimes take months for someone to settle into a new routine. It is important to make sure that medical issues are ruled out though, like urinary tract infection or medication adverse reaction.
You might also be interested in the Helping Older Parents Membership. The membership provides ongoing guidance from Dr. Kernisan and her team of professional geriatric care managers, to help you more easily get through your journey helping your aging parents. It also includes access to her popular Helping Older Parents Course and live QA calls with her. You can join the waitlist here if you’re interested.
Paige Jordan says
My mom is also in a nursing home with my dad and she has Dementia and I believe that since Covid has been here she has got worse. I would visit them every other day and spend 4-6 hours or longer with them, in the last 13 months I have only got to visit them a handful of times and it was only for 30 min. It really sucks I just sit home while my moms health declines she wants me there with her and they won’t allow visitors and 30 min just confuses her so much more. I honestly believe that if me and my sister’s could visit she might do so much better. I feel I’m losing my mom and being told I can’t visit is taking a huge toll on myself my family everything. Before Covid my mom was completely different and now she is so different. She just wants to see her children and grandchildren. I don’t know how to cope with this horrible disease
Nicole Didyk, MD says
Your story is heartbreaking and all too familiar. Despite the very small risk of breakthrough COVID, I feel that with the high vaccination rates, we can begin open the long-term care homes to visitors and volunteers with a minimal risk. The risks of isolation and social deprivation is real for so many families right now.
I hope that you’re able to look after your own health needs during this time, so that you’re fit when things do open up again. You might be interested in my video about “Caring During COVID”. Try to make sure you’re eating well, exercising and getting enough sleep.
Karen says
im so sorry about Karen.
Caleb says
Thank you for the information. This is such an awful disease and I hope that we can continue to develop treatments to hopefully one day prevent it from occurring.
Dorothy says
My mom had delerium a year ago which made her dementia move on faster she has vascular,but keeps saying her water works are painfull,she has a catheter,we’ve had her water checked but comes back fine,doctors just don’t want to know,my 87 yr old dad nurses her,along with me and my sister X