dementia Archives - Better Health While Aging

How to Plan for Decline in Alzheimer’s Dementia:
A 5-Step Approach to Navigating Difficult Decisions & Crises with Less Stress

Q: My mother is 76 and has Alzheimer’s disease. She had a couple of unavoidable stays last year in the hospital (due to falls). This accelerated her decline due to delirium, which was treated as if she was just being an unruly and difficult patient. Once my sister and I understood what was going on due to this site’s information, we have been able to protect and support her.

Right now things are stable and quiet, so we are trying to plan ahead.

How should we go about planning for the years of decline my mother may experience before her actual last moments near death? It’s hard to imagine this possibility and I need help facing the (to me) not so obvious.

We have a will, power of attorney, and health care proxy in place.

A: Great question, and especially good that you’re taking advantage of a “quiet period” to address these issues.

It’s a little tricky to answer this question without knowing more about your mother’s current ability to participate in decision-making and in planning for her future care.

Since you say she’s declined after hospitalizations for falls and delirium, let me assume that she has moderate Alzheimer’s and can’t manage more than perhaps expressing some of what she likes and doesn’t like. (For more on the stages of Alzheimer’s and related dementias, see here.)

At this point, you’ve been through some health crises already, and you’ve seen her decline. You’ve also probably gotten a sense of just how many decisions have to be made on her behalf. Some are about her medical care and some are about other aspects of her life, like where she lives and how she spends her days.

Planning ahead is an excellent idea. Obviously, it’s simply not possible to anticipate and plan for every decision that will come up.

But let me offer you an approach that you can use both now as well as “in the heat of the moment” when specific issues arise. This is a framework to help you navigate all kinds of care decisions and future crises that you may encounter.

The following five steps will give you a foundation for anticipating, processing, and reacting to the complications and problems of later-stage Alzheimer’s, with less anxiety and more confidence. These steps are: [Read more…]

Q&A: Hospice in Dementia, Medications, & What to Do If You’re Concerned

by Leslie Kernisan, MD MPH 30 Comments

Q: Dear Dr. K,

With all the news about opioids and benzodiazepines, and their risk of death, I would love to hear your take on the use of these drugs in hospice.

We’ve had two family experiences now (my Mom and my Aunt) who were given these drugs right away when they went on hospice…without hospice trying anything else first that would be less dangerous. My Mom was up and about walking one day at her memory care facility, even laughing. The next day, when hospice put her on morphine and Ativan, she was in a coma. She died 13 days later without ever regaining consciousness. When I protested and asked why she wasn’t waking up, the hospice nurse said, “It’s not the drugs, it’s the disease.” (Mom had dementia.) The nurses wouldn’t let us give her fluids (“you don’t want your mother to aspirate, do you?”) or feed her (“you don’t want your mother to choke, do you?”).

With my Aunt, she had also been in the memory care facility and got to the point of needing a two-person assist. Her power of attorney (POA) was given the choice of moving my Aunt into a nursing home or bringing in hospice. Hospice immediately gave her morphine and Ativan, then backed off the Ativan and gave her morphine every two hours until she died 3 days later.

Now the third sister, also with dementia, has been in hospice for two months and counting. She is lucid most days, eating/drinking, comfortable—all without the opioid/benzo drug combo, because of our experience.

How can family members identify a hospice that doesn’t use this troubling combination of drugs from the start, without first trying something less dangerous, to make a patient “comfortable”?

A: Thanks for sending in this question. I’m very sorry to hear that your experiences with hospice have left you concerned.

It is indeed extremely common for hospice to use morphine and lorazepam (brand name Ativan) to treat end-of-life symptoms. That’s because many people on hospice are suffering from troubling symptoms that these medications can relieve, such as pain, shortness of breath, anxiety, and agitation.

Still, these medications are not always necessary. They are supposed to be prescribed and used as required to relieve the dying person’s symptoms, not by default. So the situation you describe with your mother and your aunt does sound potentially concerning. At a bare minimum, the hospice personnel should have done a better job of discussing their proposed care plan with your family.

Now let me be clear: I cannot say if the way they prescribed morphine and lorazepam was inappropriate or not, because it’s impossible for me to know the specifics of your mother and aunt’s medical situation.

Still, we can certainly review some basics about hospice care for people with Alzheimer’s and related dementias, as well as recommended best practices, when it comes to using opioids and benzodiazepine sedatives.

Here’s what I’ll cover: [Read more…]

Cerebral Small Vessel Disease:
What to Know & What to Do

by Leslie Kernisan, MD MPH 172 Comments

MRI brain small vessel ischemic disease — Signs of cerebral small vessel disease. From Inzitari et al, BMJ. 2009 Jul 6;339:b2477. doi: 10.1136/bmj.b2477

This article is about the most common aging brain problem that you may have never heard of.

While leading a fall prevention workshop recently, I mentioned that an older person’s walking and balance problems might well be related to the presence of “small vessel ischemic changes” in the brain, which are very common in aging adults.

This led to an immediate flurry of follow-up questions. What exactly are these changes, people wanted to know. And do they happen to every older adult?

Well, they don’t happen to every older person, but they do happen to the vast majority of them. In fact, one study of older adults aged 60-90 found that 95% of them showed signs of these changes on brain MRI.

In other words, if your older parent ever gets an MRI of the head, he or she will probably show some signs of these changes.

So this is a condition that older adults and families should know about. Furthermore, these changes have been associated with problems of consequence to older adults, including:

Cognitive decline,
Problems with walking or balance,
Strokes,
Vascular dementia.

Now, perhaps the best technical term for what I’m referring to is “cerebral small vessel disease.” But many other synonyms are used by the medical community — especially in radiology reports. They include:

Small vessel ischemic disease
White matter disease
Periventricular white matter changes
Perivascular chronic ischemic white matter disease of aging
Chronic microvascular changes, chronic microvascular ischemic changes
White matter hyperintensities
Age-related white matter changes
Leukoaraiosis

In this post, I will explain what all older adults and their families should know about this extremely common condition related to the brain health of seniors.

In particular, I’ll address the following frequently asked questions:

What is cerebral small vessel disease (SVD)?
What are the symptoms of cerebral SVD?
What causes cerebral SVD?
How can cerebral SVD be treated or prevented?
Should you request an MRI if you’re concerned about cerebral SVD?

I will also address what you can do, if you are concerned about cerebral SVD for yourself or an older loved one.

[Read more…]

Incompetence & Losing Capacity:
Answers to 7 FAQs

by Leslie Kernisan, MD MPH 19 Comments

Have you ever been concerned about an older relative who seems to be making bad decisions?

Perhaps your elderly father insists he has no difficulties driving, even though he’s gotten into some fender benders and you find yourself a bit uncomfortable when you ride in the car with him.

Or you’ve worried about your aging aunt giving an alarming amount of money to people who call her on the phone.

Or maybe it’s your older spouse, who has started refusing to take his medication, claiming that it’s poisoned because the neighbor is out to get him.

These situations are certainly concerning, and they often prompt families to ask me if they should be worried about an older adult becoming “incompetent.”

In response, I usually answer that we need to do at least two things: [Read more…]

5 Types of Medication Used to Treat Difficult Dementia Behaviors

by Leslie Kernisan, MD MPH 44 Comments

One of the greatest challenges, when it comes to Alzheimer’s disease and other dementias, is coping with difficult behaviors.

These are symptoms beyond the chronic memory/thinking problems that are the hallmark of dementia. They include problems like:

Delusions, paranoid behaviors, or irrational beliefs
Agitation (getting “amped up” or “revved up”) and/or aggressive behavior
Restless pacing or wandering
Disinhibited behaviors, which means saying or doing socially inappropriate things
Sleep disturbances

These are technically called “neuropsychiatric” symptoms, but regular people might refer to them as “acting crazy” symptoms. Or even “crazy-making” symptoms, as they do tend to drive family caregivers a bit nuts.

Because these behaviors are difficult and stressful for caregivers — and often for the person with dementia — people often ask if any medications can help.

The short answer is “Maybe.” [Read more…]

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