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)
Lulu says
This article has blown my mind. It explains everything my brother and I went through with my dad.
The guilt of not knowing about this insipid state is adding an unfortunate dimension to my greiving process. It’s also apparently terrifying to experience… And we thought he was just being stubborn.
I cannot thank you enough for educating the american population about this. Neither the hospital not the physical rehabilitation facility ever said anything to us-I’ll never know if they knew and just didn’t want to deal, or whatever… It just slays me that I didn’t comfort him more when I had the chance.
Nicole Didyk, MD says
Thanks for reading the article, and I’m so glad that it struck a chord with you.
Please don’t be too hard on yourself about how you acted during your dad’s illness. It’s easy to second guess yourself, but I’m sure that you did the best you could with the information that you had available to you at the time.
We have a long way to go to get Geriatric education out there, so that more families will have an easier, gentler time with their aging loved ones.
Cyn A. says
My dad is 91 and was diagnosed with Alzheimer’s dementia about 6 years ago. The past year he has really declined and we had no choice but to get him into Memory Care. His agitation and aggression towards Mom was taking a toll on her (she is 85). She lives independently in the same facility as he does.
A week ago, the Memory Care unit found him on the floor (he has a hospital bed that was lowered all the way down) and unresponsive. He ended up in the local emergency room…they did blood work, urine tests (looking for a UTI), CT scan and other than elevated blood enzymes (75-80) all tests came back in the normal range. Since the hospital he has been very in an altered mental state, and is currently in a hospice care center….as he is not getting any better and eating/drinking very little we are arranging for a skilled nursing setting as Memory Care will not take him back. Can we expect that this is his new normal? This disease is so heartbreaking. Thanks in advance.
Nicole Didyk, MD says
I’m sorry to hear that your family has gone through such a hard time lately. It sounds like your dad has had a delirium, which affects 25% or more of older adults admitted to hospital, and more likely to happen when the person is living with dementia.
Delirium almost always fully resolves, but it can take weeks or months, and in the meantime, a person can develop complications (like dehydration and malnutrition). At some stage, it may make more sense to plan for the level of care that he needs right now, and hope that he improves over time. If he does, he may be able to go back to the Memory Care unit.
I hope that your dad can get into a new routine and start to heal.
If you’re looking for more support, you might 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.
Elisabeth says
Not sure my mother has dementia, but mental and physical state has declined rapidly. Over the last year my mother, age 76 has suffered from multiple trauma. In September of 2019 we lost my father who quickly declined with heart attacks, pace-maker, a-fib, stroke and ending with a ventricular event that took his life. We then began to focus on my moms health to ensure that she would live a long healthy life. In february she and my daughter were injured in a head-on collision. She shattered her left fibular, broke several ribs and her breast bone. She had surgery on the leg immediately and was sent to a skilled facility for rehab, but not before being told she had a golf ball size mass on her left kidney that need to be removed once she could walk. Then covid-19 set in, she did great in rehab and was sent home the day the nursing facilities shut down to visitors. We were ecstatic that she would not be stuck there during all of this. We finally set her appointment to be seen by the urologist about this mass on her kidney, he stated that surgery was necessary. That would be the only way to partially remove the kidney mass and find out if it was cancerous. After her 2 week follow up, we were told that the mass was completely removed and was cancer. We continued to do home rehab. Yet she was still declining in strength. Finally she asked myself and husband to move back in with her because she was afraid of falling and getting hurt. We did, she grew weaker and weaker, eventually not even being able to get herself from the recliner to the potty chair next to her. She couldn’t figure out how to stand and and move 3 steps to the potty. I came home from work and we sent her to the hospital for evaluation sent home with antibiotics for a UTI. two days later we sent her back to the emergency room because she was having the feeling of numbing and tingling in her legs, feet, hands, and arms. Diagnosis was UTI and low iron, not the case. After being in the hospital and another rehab for 2 weeks she is now home. She can no longer walk, uncontrolled function of the hands, speech is very delayed and confused like, she is now in diapers and cant even tell if she needs to be changed. Skin breakdown is a huge factor for us. Severe body ache throughout the day and night, won’t eat anything and spills most of her ensure, hot and cold flash to the extreme, and having more and more problems communicating needs or wants to any of us. Not looking for a diagnosis, just some advice on where to start and how to go about health care for this. Thank you for all you do.
Nicole Didyk, MD says
Hi Elisabeth and I’m sorry to hear about the tough time you and your mom have been having. It sounds like a very complex picture and that your mom needs help with many of her daily activities.
When I see individuals like your mom, I usually recommend a Geriatric Care Manager to help determine what services are needed and available, and how to organize them. There might also be some services available through the cancer treatment centre, if that’s where your mom is receiving treatment.
Sometimes, in situations like the one you describe, the best course of action is to focus on managing symptoms to improve quality of life, rather than a long-term cure or complete recovery. This type of care is often in keeping with a palliative care approach.
It sounds like you have your hands full with helping your mom, and I want to let you know about 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.
Jeff says
My wife has been extremely intelligent and wonderful She has had SLE Lupus for 43 years and it has barely ever been in remission. Her pain has been at least an 8 on her best day for all these 43 years. We married 24 years ago and I knew this information. She is an OT with her doctorate in Adult Education. She is extremely pleasant and creative. She has loved being an OT. About 10 years ago she was diagnosed with Alzheimer’s as well. I have been supportive of her through it all, but it is far from being easy. Last July she had a major breakdown with her Alzheimer’s and she was hospitalized. I had already made all arrangements with a Financial Planner, Attorney who specialized in Alzheimer’s patients, took her to the best Neurologist’s in the Indianapolis, had our wills made, had her see a gerontologist and while she was in the hospital she saw two Neurological Psychiatrists. She is now in an Alzheimer’s Unit since getting out of the hospital.
I am a retired UM Pastor and a retired Hospice Chaplain. I know I cannot be her pastor or chaplain. Her daughter was with us when one of the Neurological Psychiatrists met with us. She would not agree with the doctors diagnosis and called it nothing but his opinion. I knew the doctor and believed his diagnosis. Her daughter refuses to have anything to do with me since then cutting me off from her family and withdrawing from her mother. I am concerned for my wife’s grandchildren, which at that time I was their grandpa, but not considered that now. I am in counseling and before this Corona Virus I was with my wife twice a day and preached in the Unit on Sundays.
I am praying she not have to keep on suffering so long. Her Lupus pain has not shut down during this time. It is horrible to watch. Even the OT’s at the Unit don’t see how she can take it all. They all know her for her accomplishments as an OT and her doctorate. I have given her so much of my time over all these years I am exhausted and feel as if I have lost all my friends. She is worth it all. Now what should I do?
Nicole Didyk, MD says
Hello Jeff and thanks for sharing your story. Your love and admiration of your wife really comes through your comments, and I can’t imaging how difficult it must be to be separated right now due to the pandemic.
Your description of her daughter’s reaction is very familiar, and it’s not uncommon for people to have a denial reaction in response to hearing a painful diagnosis, which unfortunately can lead to estrangement in the family.
Dr. Kernisan has numerous articles about coping with the grief and loss when a family member is living with dementia. She also has some valuable information about how best to plan ahead when a family member is suffering and the future seems uncertain.
The article about the POLST (or Physician Orders for Lie-Sustaining Treatment) might be helpful in bringing some comfort to you and finding a way to avoid unnecessary suffering or hospitalization as your wife’s condition changes.
You will get through this tough time. Try to look after yourself and reconnect with some of your friends (virtually).
Rich says
My wife (80) has always been very healthy, asude from suffering from depressi on. She has been taking Lorazepam for decades for sleep issues. When I noticed she was having significant memory problems over tge last year I askef her physician whether this cou ld be related to that drug. She said yes and immediately stopped my wife’s prescription, no tapering off of tge drug. Within two days my wife would experience intermittant delirium and c onfusion. A month later we went to a local clinic; she was put back on the drug and the plan was to start a taper after 4 months. They also did an MRI which showed some degeneration in the frontal cortex, but said that her clinical picture doesnot indicate a dementia. Things went somewhat well for about a month, although there were regular short deliriums. I reached out to the clinic twice during this period, both times i was told to give extra Lorazepam, which I did unwillingly on a few occasions. But things had gotton so bad after this month (i.e., six seeks after being taken off Lorazepam cold turkey and four weeks after restarting it, that we went to the clinic agsin twice in one week. The second time my wifewas diagnosed with”depressiin with psychotic thoughts” and 0.5 mg. Risperidone was prescribed. She did not want to stay in the clinic so I took her home after two days. We waited a week to start the Risperidone. It was eventually increased to 1 mg., then 1.5 as her symptoms did not abate. She grew more remote, more confused at times, had less interest in things she enjoyed, etc. Last Wednesday we had an appointment with the head hysician ar a clinic some hours from where we live (he is an expert on benzodiazepine problems). He tested her and said, in his opinion, she is suffering from dementia. He gave us a schedule for tapering the Risperidone (20 days). He also switched my wife from Lorazepam to a Clonazepamand gave me a schedule for a 90-day taper. He suggested we have neurological testing done to determine exactly what illness she has.
In the nearly five months since being taken off Lorazepam my wife has become a different person. The major changes began when she started on Risperidone nearly two months ago. At times she is lucid, but she much slower than she used to. Her voice is very weak too. At times she is completely confused,like she is in a trance. At times she’ll ask questions like how to use a toothbrush. Other times dhe does not recognize me.
Canthis realy be an accelerating on a dementia? Can I hope (I’m already praying) for some recovery after the Risperidone is out of her system? I would be so grateful for any advice on what I can do, especially anything that could help imprive her situation. Many thanks.
Nicole Didyk, MD says
Hi Rich and sorry to hear about the tough time you and your wife are having. I can’t give you medical advice, but I can tell you that a delirium can take weeks or even months to resolve. So if a person has a delirium related to a benzodiazepine withdrawal, it may be a long time before the person is cleared from the delirium (and some individuals never return to their previous level of cognition and function). Medications such as risperidone can also be sedating and have properties that can dull thinking and alertness. I usually suggest waiting a few months after a medication is stopped before evaluating whether a person is at a new baseline, which may be in keeping with a diagnosis of dementia, or if they have fully recovered.
Steven says
Hi… Mom is 85, turning 86 Sept 2020
Mom was diagnosed in 2017 with late onset Alzheimer’s “with no behavioral disturbance” (whatever that means). She moved into assisted living in May 2017 after rehab from a terrible fall, and is doing fairly well. She has short term memory loss (mostly repeating herself, forgetting what happened at a Dr. appointment, etc.). It gets worse later in the day, or if she’s stressed out. That’s said, she is still independent, comes and goes independently to her Dr appointments, to get her hair done, go to the theatre or shopping, etc.
We are so very grateful that her dementia has been progressing as slowly as it has been, but it is progressing nonetheless. Her health is fairly good otherwise.
Then issue: Her Dr is suggesting surgery to remove a toe (arthritis has made her big toe rub on the next toe causing it to always have an open sore spot). Mom has had issues waking up from anesthesia in her younger days and at age 85/86, it’s a big concern. We’ve also heard that anesthesia can cause dementia to worsen, or progress more rapidly.
We’re confused with everything we’ve read and heard, and wondered if you had any thoughts on the effects of general anesthesia on someone with dementia, or even local anesthesia if that is even an option.
Thank you for your valuable time.
Nicole Didyk, MD says
Hi Steven. It sounds like your mom is living with a mild dementia and your concern about the potential brain complications of surgery is understandable. At the same time, joint conditions that cause pain and limit walking can also have serious negative effects, although they may develop more slowly. Ultimately, it’s an individual decision and there are risks and benefits either way.
Here is an article about anesthesia and cognitive impairment. Post-operative cognitive dysfunction is not uncommon, occurring in about 10% of those undergoing non-cardiac surgery (it’s up to 70% for cardiac surgery). The authors indicate that based on the latest evidence, there is probably no advantage of regional (which ma be referred to as a “spinal” or a “block”) versus general anesthesia. They also review the recommendations of an international working group on peri-operative neurotoxicity and this group recommends reviewing medications prior to surgery and to avoid first-generation antihistamines, centrally acting anticholinergics, benzodiazepines, and meperidine.
Nicole says
Hi, my mom was recently diagnosised with moderate stage Alzheimers at 69 years old. She also has congestive heart failure, type 2 diabetes, high blood pressure, high cholestrol and mobility issues. This is a lot to handle. What would a rough prognosis be and how should we approach her care?
Nicole Didyk, MD says
Hi Nicole and sorry to hear about your mom’s diagnosis. As this article about heart failure and end of life care describes, it can be very hard to determine a prognosis in such chronic conditions. It all depends on how these conditions interact, other factors in the person’s health, and most importantly, what the person’s goals and values are.
Having received these diagnoses, it is a good time to think and talk about Advance Care Planning. The podcast in the link covers some of the important questions to ask that may be helpful in guiding you as a family as your mom lives with dementia and heart disease.
I’m glad you are here on the website looking for information – that kind of proactive approach is very helpful. Wishing you the best.
Christina Armstrong says
Hello,
My mother is 76 years old, diabetic with medication control Metformin and neurologist said she showed mental decline of age and that Brain scan showed the same. That was 3 months ago. Literally and I am not kidding, overnight something happened. She was happy and talking politics with us the night before, went to bed and woke up unable to remember anything. We found her naked in my young daughters room sitting on the floor. She doesn’t know her name, the year, where she was born, nothing. We took to the ER and they admitted her. She is in hospital right now. They have done the following and all normal: CT scan(showed dementia damage in the back of the brain), EEG, urinalysis (no culture grow ordered yet), EKG, thyroid, kidney, liver, basic bloodwork, absolutely zero signs of stroke. Now they are talking discharge if they can’t find a cause already. We are freaking out because something has caused this and I can’t believe they would send her home without knowing the cause. They are also refusing to recommend rehabilitation center with Medicare which will pay with the right paperwork. They are saying she won’t improve that why. How can they say this if they don’t even know the cause? I feel like this is neglect of elderly and don’t know what to do!
Leslie Kernisan, MD MPH says
Sorry to hear of your situation. That sounds like quite a dramatic change. Hard to say why they haven’t found an explanation. It sounds like they don’t think that keeping her in the hospital for longer will help them find the cause, however. If this is the case, and if she otherwise has stable vital signs and doesn’t appear to be acutely ill, this may be why they want to discharge her.
Regarding her discharge, they may be concerned that she’s not going to be able to cooperate with the amount of therapy that is part of a rehab center program. Or they may think that she doesn’t otherwise qualify. You can learn about coverage (and the difference between inpatient rehab and skilled nursing facilities) here:
https://www.medicare.gov/coverage/skilled-nursing-facility-snf-care
https://www.medicare.gov/coverage/inpatient-rehabilitation-care
https://www.mainlinehealth.org/specialties/rehab/inpatient/snf-vs-acute-rehab
You can find info on appealing a hospital discharge decision here:
static/file/Hospital_to_Home.pdf
I hope you get some answers soon. Good luck and take care.
Edel cheasty says
Hi I have looked after my mum for last 20 years ,now 95 was started with a demitia at 92 given tablet,yet they no nothing how to stop it ,as far as I have seen any type of sadation should not be used as it inflames the brain and not good on the heart ,if they do not want to do operations on an older person because they can not use sadation , why use it other wise ,only to have people like zombies ,
There needs to be a law brought in not to use sadation for older people, creates most
Of the falls ,and makes the mind 10 times worse , shame on the medical perfesion doing this,
We need to make a stand to say no sadation for older people ,as it assist,s in early death
Leslie Kernisan, MD MPH says
It’s true that sedating a person becomes riskier as they get older, especially if they are in their 90s and/or have a dementia diagnosis.
In geriatrics, we try to always make a very carefully considered decision. Sometimes after weighing the benefits and risks, it still is reasonable to attempt sedation, but the key is to be cautious.
Your mother is very fortunate that you’ve been able to help her. Twenty years is a long time! I hope you aren’t too tired and that you’ve been able to address your own needs as you help your mom.
Grace says
My mother has been suffering from Alzheimers for several years. She was living at home, still somewhat self sufficient, but had a car accident that she could not recall where it happened. We moved her into an assisted living near by our home, and she did pretty well for about 3 years, although getting increasingly forgetful, repeating herself many times in conversation.
About 6 weeks ago, she fell and fractured her femur. I was with her in the ER and she could not understand why she was there. Finally, she had surgery and was in the hospital for 3 days. She never understood that she couldn’t walk so she would constantly try to get up on her own. But at least we seemed to have some semblance of conversations.
She was in rehab for 6 weeks and did quite well in physical therapy, but she is still in a wheelchair most of the time. In the meantime, her mind seemed to continue its decline. Finally she returned to her assisted living facility, but I have had to hire 24 hours supervision. Basically someone to stay with her to help her get out of bed, go to the bathroom, help her dress, take her down to meals. She still enjoys playing bingo and poker, but our conversations are more and more scattered all the time.
A few days ago, the caregiver told me she thought my mother had a UTI due to frequency of needing to get up in the night plus she wet the bed (which she had never done before), so we went to ER and sure enough, it was quite a bad one. She is now on antibiotics and the UTI has improved a lot just in 2 days. But her mind seems to be on a steady decline.
Is there a chance she will get better, that part of the issue was the UTI? I would gladly take her to her primary care physician to discuss options for improving her life, but at this point, she just seems to be getting drastically worse by the minute. The hope was that she would get better physically to be able to use a walker and go back to being a bit independent, but I am starting to believe this is a fantasy on my part.
I’m trying to figure out long term what to do for her. Right now the 24 hour care PLUS the assisted living facility is so expensive and not covered by Medicare. I thought she might get better but if she’s not, then I need to make other plans for her care (such as an Adult Family Home). Any idea or suggestions would be much appreciated.
Leslie Kernisan, MD MPH says
Sorry to hear of your mother’s recent health issues. Yes, hospitalizations, infections, and other physical stressors can provoke delirium and cognitive decline, especially in people with Alzheimer’s.
At this point, her fracture is still pretty recent and also she had just begun treatment for the UTI a few days before you wrote. So I’d say it’s too early to know whether she might eventually start recovering some cognitive function. I have seen some people slowly get better over several months. Others don’t.
She’s already had Alzheimer’s for several years. The longer she has it, the more weak and vulnerable her brain is. That means the more easily she’ll be affected by illness, the longer it will take to recover, and the greater the likelihood that she won’t recover.
I would suggest giving things another 4-8 weeks and then seeing where you are at. If she’s been in a restorative environment that gives her a chance to recover, you should see some improvement. If you don’t see much improvement, then it becomes more likely that she’s settling at a new worse normal, or even accelerating in her decline.
Good luck, I hope she starts to improve soon!