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7 Steps to Managing Difficult Dementia Behaviors
(Safely & Without Medications)

(This article is by my colleague Paula Spencer Scott, author of the book Surviving Alzheimer’s: Practical Tips and Soul-Saving Wisdom for Caregivers. I invited her to share an article on this topic, since many in our community are coping with dementia behaviors. — L. Kernisan)

The odd behaviors of Alzheimer’s and other dementias can be so frustrating and stressful for families.

I’m talking about the kinds of behaviors that try patience, fray relationships, and drive us in desperate search of help:

“First she thinks the caregiver is stealing her sunglasses and now she accused me of having an affair.”

“When I tried to help Dad wash up, he hit me.”

“My husband follows me so closely I can’t stand it. But if I go in another room he’ll wander out of the house.”

“Mom started unbuttoning her shirt in the middle of the restaurant!”

“Just when I’m completely exhausted at the end of the day, he seems to get revved up. He keeps peeking out the windows, convinced that someone is trying to break in. Now he won’t sleep.”

A common approach to difficult behaviors is to go right to medicating them with tranquilizers, sedatives, or antipsychotics. But that’s risky and often not what’s best.

In fact, experts recommend trying behavior management first, and for good reasons: It tends to be more effective in the long run than “chemical restraints,” has no dangerous side effects, and leads to a better care relationship. But people often don’t know how to do this.

I’ve learned how.

I’ve lived through five close family members’ experiences with Alzheimer’s and other forms of dementia. Lots of trial and error, and insights from dozens of top dementia experts (whose brains I’ve been lucky to pick as a journalist and dementia educator), got me through regular scenes with…

My father-in-law, who needed a walker to move yet spent hour after hour for several days straight hauling all his clothes and toiletries from his room to our driveway, insisting that his (imaginary) new wife was about to pick him up
My dad, a formerly sharp dresser who wore the same shirt and pants every day no matter how dirty
My grandmother, who insisted on going “home,” when she was home
And other relatives, in dozens of similar scenes.

In this article, I want to share what I wish someone had explained to me early on: the “Why-This, Try-This” approach to dealing with difficult behaviors.

This is a mental framework that can help you get unstuck from unproductive responses that get you nowhere or make things worse.

It can bring calm -– to both of you — whether the issue is verbal or physical aggression, agitation, confusion, wandering, disinhibition, delusions, hallucinations, or a restless or repetitive behavior (like pacing, shadowing, rummaging). It also works well with milder irritants like repetitive questions and indecision.

Then, I’ll boil down the Why-This, Try-This concept to a 7-step process you can use every time. These “7 R”s give you a basic platform for responding to any frustrating behavior: [Read more…]

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

by Leslie Kernisan, MD MPH 16 Comments

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

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

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, 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 older adults.

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 106 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…]

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