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)
John Harris says
Mom – 83 with advanced alzheimer’s – fell in skilled nursing home fractured ankle – after fall and excuses moved mom in with me 2.5 years ago – subsequently developed 3 subdural hematomas – 2 hospital stays and 2 – 6 week rehab in skilled nursing – after both hospital stays she looked like she was dying in rehab – both times brought her back to life – my question: do subdural hematomas increase decline in alzheimer’s – doctor saying rapid decline (was walking 2 dogs – doing dishes – selfsufficient before fractured ankle and 3 subdural hemotomas) just alzheimer’s decline – says accellerated because she got the flu and had a UTI – I say give me the flu and a UTI any day rather than bleeding on the brain – all 3 subduralhemotomas resolved on own but I say mom has never been the same since fractured ankle and 3 subduralhemotomas. I appreciate your opinion and welcome comments. Thanks!
Leslie Kernisan, MD MPH says
Sorry to hear of her decline. I would not be surprised if a person with significant Alzheimer’s declined significantly after any of the health problems you describe (fracture, subdural, UTI or flu bad enough to be hospitalized).
If these things didn’t happen too long ago, it’s possible that she’ll improve slowly with time. Otherwise, I would encourage you to focus on what she still can do, and how you can spend quality time together, and also on planning for future decline because unfortunately decline is to be expected. I have more on decline here: How to Plan for Decline in Alzheimer’s Dementia:A 5-Step Approach to Navigating Difficult Decisions & Crises with Less Stress
We also help people address decline and otherwise support them in our Helping Older Parents Membership Community.
Good luck and take care!
John Harris says
Thank you for your response.
While I know that a UTI and/or flu can have adverse affects – I say bleeding on the brain – subdural hematomas would be much more serious – UTI/flu like getting a bee sting vs. subdural hematomas like swallowing a hornets nest – your thoughts – again, I believe my mother’s RAPID decline is because of subdural hematomas.
doctor saying rapid decline (was walking 2 dogs – doing dishes – selfsufficient before fractured ankle and 3 subdural hemotomas) just alzheimer’s decline – says accellerated because she got the flu and had a UTI – I say give me the flu and a UTI any day rather than bleeding on the brain – all 3 subduralhemotomas resolved on own but I say mom has never been the same since fractured ankle and 3 subduralhemotomas. I appreciate your opinion and welcome comments. Thanks!
Janine Weston says
Hello Dr. Kernisan,
My Mother is 94 with dementia. Recently, she had a bad fall and hit her forehead. She had stitches above her left eye and was hospitalized in the trauma department for 5 days. Mom is now in a Skilled Nursing Facility. Since the fall, she has not been the same at all. She has major memory loss, she’s angry, combative, paranoid, suspicious. Mom no longer knows her age, or mine and seems to be living in the past. Prior to the accident Mom was sweet and loving. I can’t believe this drastic change is a natural progression of the disease. It must be delirium, the head injury or both. Please help. No one is listening.
Leslie Kernisan, MD MPH says
So sorry to hear of your mother’s fall and changed behavior. Yes, I think this could be due to delirium or even to the head injury. It will probably get better with time, but at her age, improvement can be slow. Sometimes older adults also develop a chronic hematoma in the brain after a fall, and that can cause symptoms, see here: http://neurosurgery.ucla.edu/chronic-subdural-hematomas
I would recommend joining an online support group for extra support during this difficult time. Others have been through this and they will listen. There is a good free one at AgingCare.com.
I also offer a special membership group that allows members to ask questions of me and also our geriatric care manager experts; you can learn more here: Helping Older Parents Membership.
Good luck and take care!
Joann Gillies says
Hi
I’ve just come across this article trying to find answers for my 76 year old mum.
We almost lost her twice in January 2019. She is now in a medical journal because of what happened to her. In ICU on 2 separate occasions for a total of 11 days.
This is when her hallucinations were at there wose. She’s now been out of hospital for almost 2 months and living with me for 2 days.
She is no longer my mum but a stranger behind scared eyes.
Today is 3/5/2019 and I’ve lost the woman who was my mum, I now see a confused and aggressive fail old lady and it breaks my heart. She was fiercely independent and now is a shell of her former self.
Thank you for this article, I will now take her to be assessed.
Leslie Kernisan, MD MPH says
Sorry to hear of your mother’s decline. ICU stays usually mean very serious illness, and those can be a serious setback in health for older adults. Some do recover given enough time, but others never get back to the way they were. Even though your mother may be scared, confused, or aggressive, I think down inside she senses your presence and concern, and that is helping her in some way.
As you get her assessed, be sure to look into joining a support group, so that you can get help processing these changes and your grief at seeing her change. There are free online support groups you can join, or for extra guidance and support, you may also want to consider our Helping Older Parents Membership Community. Good luck and take care!
Luke says
My mom has had symptomatic Alzheimer’s for the past 10 years; the last five were end stages. August 2014 she started wandering off and afterward impacted my life severely requiring around-the-clock supervision. Now it is May 2019 and should would be lucky if she reached her 90th birthday, which is highly questionable and unlikely. I think her decline would have been much faster if I did not walk her in the park daily. Over the last year her ability to use a standard rollarator was no longer possible since she stuck her behind out too far and that tired her out. I spent $700 on a specialized walker for stroke patients which Medicare does not cover but it kept her back straight so she can ambulate the park over a quarter of a mile and it did not tire her out. She really loved those walks. It was the only time of the day she came alive and had animation. Now she is too weak to use that. I’m hoping mom will last until 90, but not at the point that medical intervention makes her suffer. As for urinary track infections, once a person becomes incontinent of bowel they are highly prone to this. However, if a person manages to keep them hydrated the bladder will be flushed and prevent this from happening. However, this is a problem when they are forgetting how to swallow and even thickened water poses a problem. But I noticed everytime mom got real sick her decline drops significantly and it stayed at that new level. Just a few weeks ago mom had a bad fever, near coma, and heart rate 130’s (and this developed overnight!) and she was taken to the Emergency Room (she already was on Keflex for UTI) and diagnosed with urosepsis (high procalcitonin and lactic acid) and I was told she needed to be in-patient. I told her she is on hospice and inpatient would kill her due to her end-stage Alzheimer’s. The ER doc wanted me to sign AMA papers, but I bargained with him and I told him why not just give Rocephin (broad spectrum antibiotic which is necessary for sepsis) IM and I can take her home. He felt comfortable with that. Since I am a RN I gave the Rocephin injections rotating sites daily for seven days and she completely recovered from urosepsis. However, it left her significantly weaker. Yes she recovered and I do what I can to keep her moving but it left its mark. However, I also truly believe if I had her hospitalized she would already been dead..if anything from delirium and removing her from her familiar surroundings and routines. Hospitals are full of strange sounds, bells, whistles, and constant barrage of new faces. At least the Rocephin gave a few more weeks of life with my mom..and death by sepsis is hardly pleasant. However, mom wants to sleep more and more. But at least she has no fever.
On her better days I will still walk her in the park because I can tell she loves that.
I think what I really miss is taking her to the mall–I used a wheel chair but she enjoyed that (I don’t walk her after her morning exercise). How I would give my right arm just so I can take her there again and we enjoy each others’ company just walking in the mall.
I really do not want mom to die..but over the years I did the best I could with her and let’s face it nobody is going to live forever. In a real sense I lost my mom years ago..but even with her advanced state sometimes she would come through and say a few things. I mean when I tell her goodnight she says goodnight back clearly and I tell her I love her and kiss her on the cheek she would smile and nod her head. SHE UNDERSTANDS THAT.
Dealing with dying is very painful and I don’t like it. But I hardly have any choice in that.
Leslie Kernisan, MD MPH says
Thanks for sharing your story. It sounds like your mother and you have been through a lot. Kudos to you for working so hard to help your mom; not everyone is able to do as much for their older parent.
In terms of urosepsis treatment with antibiotics: it sounds like the course of action you chose was reasonable for your family and worked out ok. That said, it can also be reasonable, if the goals of care are comfort and not prolonging life, to treat urosepsis in a palliative fashion, with antifever medication and possibly pain medication. Sepsis is not necessarily a very uncomfortable way to die; people get weak due to low pressure, and also often sleepy due to the severe infection.
Dealing with dying is indeed difficult. Hospice services can bring in extra help with symptoms and much needed emotional support for families.
I am sure your mother senses your presence and your love, and that it means a lot to her. Take care and good luck!
Paul says
I’ve found, over the course of 18 months looking after my mother, who has Alzheimers, that delerium from UTIs has a quite profound impact on both her and my quality of life.
When the UTI is present she is more agitated, and won’t stay put. She’ll climb out of bed every 10 minutes for an hour before finally settling, and she’ll speak more garbled nonsense.
Antibiotics (for her) make a significant difference for the both of us, and takes away 80% of the stress involved in caring for her.
Unfortunately, in the last 18 months she’s had exposure to 4 or 5 different doctors, and all but one of those doctors has dismissed the significance of a UTI, essentially saying that if she isn’t in discomfort they will not treat it (she never complains of pain, so a UTI could be raging and she’d still stay quiet about it).
While I can understand the pressure on doctors not to over prescribe antibiotics, they also need to understand that the delerium from a UTI can have very significant effects on the patient and the caregiver. A five day course of antibiotics can restore peace to the household for the next 3 months. Priceless!
For others here, delerium shows as a fairly rapid change in behaviour and cognition. If you suspect a UTI you will probably get better appreciation of the issue from a female doctor, as woman are far more likely to have first hand experience of UTIs and a different perspective than a male who likely has never had a UTI himself.
Leslie Kernisan, MD MPH says
Thanks for sharing your story.
Diagnosing UTIs can be tricky in people with dementia, because many older people are colonized and actually are experiencing asymptomatic bacteriuria, which is not supposed to be treated with antibiotics. Many older adults are being overtreated with antibiotics. Repeated antibiotic treatment also tends to lead to resistant bacteria and so the treatment usually stops working within 6-12 months.
That said, if in your experience your older parent really improves after antibiotic treatment, it’s reasonable to consider it. Ideally both the family and the health provider would participate in a carefully considered decision that is well-informed and mindful of guidelines, but not unduly stuck to the guidelines.
I have more on urine bacteria and when to treat here: UTIs and Urine Bacteria in Aging: How to get the right diagnosis & avoid unneeded antibiotics.
Nadine says
My father was diagnosed with Dementia in April 2018. The symptoms were at first somewhat mild and he was put on Aricept. In about 6 months we quickly saw a deterioration. He left home in the middle of the night because he had delusions that a family member was trying to hurt him. He then came to stay with me. While in my home, he experienced hallucinations, agitation, and delusional thinking. He also became aggressive and would refuse to eat or take his medication. He was hospitalized for about 3 weeks and we had to make the decision of putting him in a long term facility. Since being at the facility he was hospitalized once due to his hallucinations and increased agitation. He had also began to refuse to eat or take his medication. When he was discharged from the hospital and went back to the nursing home, he was calmer but continues to eat the food at the nursing home saying they’re poisoning his food. He does comply with his medication however also refuses to bathe. I bring him food daily in the evening and leave foods for him to eat during the day. He is also on Ensure. He has lost about 15 pounds in about 3 months because he is not getting enough food during the day. He does not comply with the nursing home staff when they encourage him to eat during the day and he waits for me in the evening to eat. I spoke to the doctor and pretty much they’re treating him mostly for the psychosis ( Haldol). I haven’t gotten any answers on what to do by the nursing home staff and just at a loss. I don’t want him to keep losing weight and would ideally would want him to start eating again from the nursing home ( but the delusions prevent this from happening). My father also does nothing but stay in his room all day and does not participate in anything at the nursing home which I know is contributing to his decline. I am also feeling that this facility may not be too experienced with memory care. However I am apprehensive in moving him because of fear that my dad may still have these difficulties anywhere he goes.
Leslie Kernisan, MD MPH says
Sorry to hear of your father’s dementia and decline. You don’t say how old he is, but since his situation sounds quite complicated, he might benefit from consultation with a specialty memory clinic (e.g. at an academic medical center) or perhaps a geriatric psychiatrist. Delusions are common in Alzheimer’s, but his sound like they are really affecting his quality of life and his health.
We do have an article on unintentional weight loss here, it may give you ideas about what to ask his health providers
Q&A: What to Do About Unintentional Weight Loss
Last but not least, I would recommend finding an online support group for dementia caregivers; they will have ideas about what you can try.
Good luck!
SV says
I’ve read that 30% of patients with hospital delirium decline permanently.
Up tp 50% of ICU patients develop some form of HD.
This is a problem.
Leslie Kernisan, MD MPH says
It’s hard to specify an exact statistic for how many people decline, because the studies are done on different populations with varying levels of follow-up. But yes, it’s true that some people never recover back to their previous baseline, and delirium has been associated with accelerated cognitive decline.
For more on efforts to reduce delirium, you might enjoy the podcast episode with Dr. Sharon Inouye. She’s the geriatrician who pioneered the study of delirium and developed proven programs to reduce delirium in hospitals.
062 – Interview: Preventing Hospital Delirium & Maintaining Brain Health
Carmen says
Hey my mother is 69 diabetic and currently receiving dialysis she had open heart surgery 14 weeks ago and they think she has dilerium. She repeats herself constantly and stares into space. They had restraints on her and even mittens because she pulled out catheter for her dialysis. She’s been yelling and hollering. She was independent and living on her own now she’s not eating or going to bathroom on her own she has a feeding tube. We didn’t have any idea this could happen it’s awful and I am the only family here. I am praying for a change she’s been in hospital or nursing home for the past 14 weeks it seems she got worse being in nursing home. Any advice would be helpful and they can’t do a MRI because she has a pacemaker to rule out stroke
Leslie Kernisan, MD MPH says
Sounds awful indeed, this must be very hard for your family.
An MRI, in all honesty, is unlikely to make a difference. Generally when evaluating delirium we look for infections, metabolic imbalances, medication side-effects, dehydration, and other things that don’t show up on MRI of the brain. Otherwise, it’s a matter of time and supportive care.
You might find it helpful to read the related article on hospital delirium, if you haven’t already done so.
I hope your mom starts to improve soon. good luck!
Melissa Linebaugh says
My 75 year-old darling mother-in-law went from normalcy to delirium in 2 days! We suspected some declining mental abilities, but often we attributed it to age and personality. We are at a loss and the hospital has no real answers yet CT normal and MRI does show some slight whitening in the frontal cortex but they said it could be normal aging or early dementia. They still can’t find any underlying disease that would have triggered this—she is now like some ghost. It’s horrific. And we had no preparation. She lost her 10 year old grandson (my nephew) to brain cancer last year and this occurred shortly after she hosted a celebration of what would have been his 11th birthday just two weeks ago. There is some speculation that depression led to this seemingly overnight decline, but we have nothing definitive. We just don’t know what to do. She is at a tiny country hospital that doesn’t have access to a neurologist and it just makes it harder.
Leslie Kernisan, MD MPH says
So sorry to hear of your mother’s recent mental decline. And how sad that your family lost your nephew at such a young age, that must have been a devastating loss.
Depression can in some causes cause psychosis, so I suppose that’s a possibility. Otherwise, if you’d noticed signs of mental decline in the past few months, that could also be depression or it could a slowly progressing cognitive condition, or even type of medical problem affecting brain function.
If she is delirious now, they should continue looking for causes and triggers, as they are doing now, and otherwise management consists of supportive care and waiting for things to improve. I’m sorry I can’t offer any more specific suggestions. I hope she starts doing better soon. Good luck!
Claire says
Hi dr Kernisan. Thanks so much for your helpful answers. My mum has declined further and a brain scan offered some explanation… my mother had a hematoma on each side of her brain. Those hematomas had been seen as small in July however have significantly increased and required surgery last night. I’m told by a doctor I spoke to on the phone that mums mobility is expected to improve but not sure about her cognitive state. Mum has been kind of singing in a high pitch voice instead of speaking… it sounds like she is wailing almost… it’s been distressing.. this doctor did tell me mum was put on benzodiazepines of some sort to help with her behaviour… but they didn’t think that was the cause of her big decline… in 21 days I will get to see her…