Having dementia, such as Alzheimer’s, brings on special challenges when it comes to health and medical care.
Last fall, my friend and colleague Paula Spencer Scott interviewed me on what family caregivers can do to improve the health — and healthcare — of a loved one affected by dementia.
The interview turned into a chapter in her terrific new book, “Surviving Alzheimer’s: Practical tips and soul-saving wisdom for caregivers.”
Below, I share three things I wish more caregivers knew about better healthcare for someone with a diagnosis of Alzheimer’s or another dementia. (Read about two more things to know in the follow-up post here.)
5 things I wish caregivers knew about healthcare & dementia
(Note: The following is an excerpt from Paula Spencer Scott’s new book “Surviving Alzheimer’s – Practical tips and soul-saving wisdom for caregivers.” I’ve added a few links to her text.)
A geriatrician urges you to shift how you think about medical care after an Alzheimer’s diagnosis; it can make a world of difference for your loved one and you.
#1: I wish dementia caregivers knew… that what seem like “little things” can make people much worse. Untreated pain, constipation, too much novelty or stress, medication side effects — you don’t think they’re that big of a deal, but for an older adult, they can be huge. Often these “little things” make a person with dementia much more confused or difficult than he’d otherwise be. These seemingly minor problems can even wind up sending your loved one to the emergency room or hospital, which is a stressful and risky experience for someone with Alzheimer’s. And that means another crisis you and the rest of your family will have to deal with.
- Pay attention when a new problem develops, especially if it’s over hours or days. Whether it’s something physical, behavioral, or with thinking skills, don’t automatically assign every change to the dementia. Make sure something else isn’t going on.
- One of the biggest problems caregivers don’t always act on: Sudden worsening in mental abilities. This indicates delirium, which means there’s likely something wrong, like an infection. Often a caregiver will mention to me at a scheduled exam, “She’s been much more confused in the past week.” We often discover a urinary tract infection or medication side effect, but it’s not uncommon for us to find really serious medical problems underlying the new confusion. In one case, we discovered a large pocket of pus next to an elderly woman’s lung, which explained her cognitive downturn. Don’t wait a week. Don’t wait until the next appointment you have. Call the doctor or advice-line that day, and be ready to bring her in today.
#2: I wish dementia caregivers knew… to have doctors re-evaluate the care plan for other chronic illnesses in light of a dementia diagnosis. Most older adults have more things going on than the dementia. Many of these chronic illnesses require self-care that can get hard when you have memory loss and cognitive changes.
- Common examples: People with insulin-requiring diabetes should be given a simplified insulin regimen. It can also be hard for people with dementia to properly take “as-needed” medication, such as for pain or for COPD; instead the plan needs to be simplified, or you need to recruit more help to keep track of how the person is doing and how often they need to take the medication.
- It’s not bad to simplify a care plan! Most doctors can do this, but you have to ask for it because specialists, especially, are focused on the problem at hand for them. Ask, “Is there anything we can simplify to make the care regimen more doable?” Often, if this happens at all, it happens too late. That’s a mistake.
#3: I wish dementia caregivers would … get used to thinking about the real pros and cons for every aspect of care. I call these the benefits and the burdens. Many treatments and procedures are overly burdensome to people with dementia and may be less likely to help than people realize.
- Here’s a common scenario: Someone with dementia is found to have a mass that’s possibly cancer. The doctor wants to biopsy it and, if it’s cancer, offer whatever treatments are possible. You’d want to ask: “How stressful will the evaluation and treatment (if necessary) be? What would happen if we just watched it? And what are the answers to these questions in light of this person’s overall health?” If the person has been in and out of the hospital over the past couple of years due to congestive heart failure, for example, then a full-blown cancer work-up may not be the right thing to pursue.
- For any major diagnostic procedure or treatment, ask, “How will this help with my loved one’s care overall? And what are the likely burdens?” This is especially true for same-day treatments that involve sedatives or anesthesia. Often these tests and procedures are quite stressful and even risky for people with dementia, but many doctors don’t focus on this when they recommend the test. So you really want to be clear on how the test results might help you better manage the person’s overall health.
- Get the doctor to help you think about the big picture of the person’s health. Doctors won’t always remember to do this. Specialists, especially, tend to focus on the specific problem you’ve brought to their attention and how to fix it. They each focus on their own tree, and that can be to your detriment, because you need help with the whole forest. You need to know which are the trees to pay attention to most.
[Interested in Alzheimer’s? Be sure to read the follow-up post, “2 More Things to Know About Better Healthcare in Alzheimer’s.”
Diane says
In your post, you give the example of worsening cognitive abilities caused by a UTI as an item that should be acted upon quickly. Elsewhere on the site, I read that the Infectious Disease Society feels that confusion alone is not enough of a symptom to warrant antibiotics. The article says treatment with antibiotics should not be started until the patient has fever, pain, urgency, blood in urine , or back pain associated with the bacteria in the urine.
https://betterhealthwhileaging.net/urine-bacteria-without-uti-in-elderly/
What is your advice for a loved one with ALZ who has only worsening confusion as a symptom? Should they get tested for a UTI? Should the caregiver watch and wait or get the patient seen right away?
Leslie Kernisan, MD MPH says
Good question, thanks for bringing it up.
Well, I think the worsening confusion in a person with dementia has to be taken into context. Worsening confusion certainly might be delirium, and usually warrants an evaluation for some type of new illness. UTI is certainly a possibility, but how to evaluate for this possibility would depend on the person’s prior history of illness and evaluation. For someone who hasn’t had recent UTIs and there’s no reason to suspect prior asymptomatic bacteriuria, it would certainly reasonable to culture the urine, and if no other obvious sign of illness or infection is present, it would be reasonable to conclude that UTI might be causing the confusion and attempt treatment.
The problem, however, is that some people with dementia end up being treated repeatedly for UTI, on the basis of a little extra confusion and a positive urine culture. In such cases, what is more likely is that the person has become colonized, so unless there are true signs of serious infection or localizing UTI symptoms, it may not make sense to keep treating for “UTI.”
I was recently involved in such a case, for a person aged mid-90s with mild dementia. Every time he felt unwell and got a little more confused, he was whisked to the ER, his urine culture was positive, and he was treated for UTI. Over and over again. Finally the family consulted me, and I advised rest and watchful waiting next time he was unwell. The family discovered that he was usually better the next day, after resting. In fact it seems his moments of extra confusion were mostly due to fatigue and just having a worse dementia day.
The fact remains that it can be tricky for families to determine how much additional confusion is too much or is worrisome. There is no exact right answer, and which side to err on depends in part on what are the older person’s goals of care and priorities: is it more important to live as long as possible or is it important to try to reduce burdensome medical interventions?
Hope this helps.
Diane says
Thank you. That makes perfect sense.
Ivanna Flint says
My grandmother is currently suffering from Alzheimer’s disease, and I know that caring for her is not as easy as one might think. That is why I researched what we need to do. I did like your idea of asking the doctors if there is any way to make the regimen a little easier to do. There’s no harm in trying, so I will. Thank you for this.
Leslie Kernisan, MD MPH says
glad you found this helpful!
Anonymous says
I have a question about care for people with dementia…One of my parents has suddenly gotten much worse and they are having problems walking, having shaking that is making it hard for them to feed themselves, and the dementia has also suddenly gotten worse.
I made an appointment with their family doctor and they refused to see them – said that palliative care should be taking care of it rather than them. When we joined palliative care we were told that palliative care would work WITH the family doctor, and not displace the doctor.
I feel like they just don’t want to see my parent because of the dementia, and am worried that there is something else going on that would cause such a worsening of their condition in a short time. It is like their feet are glued to the floor when trying to walk and they cannot comprehend spoken language very well.
Should I just get an appointment with a neurologist – and get a new family doctor too?
Thanks
Leslie Kernisan, MD MPH says
A sudden change such as you describe is potentially quite worrisome, and usually would justify an urgent care visit, if not the emergency room. However when people have dementia and are getting palliative care, then sometimes the goals of care are such that we only pursue urgent visits if it really seems important in order to maintain the person’s comfort.
If you already have a palliative care team or provider involved in your parent’s care, I would start by asking them for assistance. They will be in a better position to advise you as to next steps, and might even be able to talk to your doctor about how you will all be collaborating.
Whether seeing a neurologist is likely to help will partly depend on what are the goals of medical care for your parent.
Re your family doctor, whether or not their recommendation was justified, it’s a shame that they left you feeling dissatisfied. You may want to consider a new primary provider, but before you do so, consider trying a round of extra communication with the doctor. Let them know how you felt about this interaction and how you are hoping they can help next time. And try to use “I” messages and not sound too accusatory; it’s more constructive.
Good luck, I hope you’ll soon be able to find the help you need from the providers around you.
Anonymous says
We have dear friends – the wife, 75 yrs, has just been diagnosed with MCI. These friends are heavy drinkers, which we know is doing brain damage. Do you have information published on the damage alcohol produces in the brain or could you address this topic? I would like scientific info to show them so they take this topic seriously and do not feel scolded.
Leslie Kernisan, MD MPH says
hi Anonymous,
Light-drinking has often been found to have some health benefits, but heavy drinking does damage the brain over time. A vulnerable older brain will also work less well when a person drinks heavily.
Here is a recently published scholarly article on this topic: The effects of alcohol on cognition in the elderly: from protection to neurodegeneration.
Some other thoughts for you to consider as you try to help your friends:
– How is your friend’s mild cognitive impairment (MCI) likely to progress? David Hilfiker, a doctor who himself has MCI, recently blogged about this, see “What Happens after Mild Cognitive Impairment?”
– Are there other things your friend should focus on, to reduce the chance of her MCI turning into dementia, or to at least slow the process down? (Entire books on reducing dementia risk exist on this topic!)
– If you’re concerned about your friend’s drinking, is focusing on her MCI the best approach, or might there be more constructive ways of helping her address this issue? (Consider getting advice from a social worker or therapist with experience assisting older adults with substance issues.)
Good luck!