Practical information for aging health & family caregivers
Want to keep your brain — or the brain of someone you love — as healthy as possible?
Then it’s essential to know which commonly used medications affect brain function.
In this article, I’ll go into details regarding a type of medication that I wish all older adults knew about: anticholinergic drugs.
(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…
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…]
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:
Have you been worried about an older person’s memory or thinking skills? If so, you’ve probably found yourself wondering if this could be Alzheimer’s, or another dementia.
What to do next? If you look online or ask people, the advice is generally this: tell the doctor.
This advice isn’t wrong, but it’s incomplete. Yes, you should tell the doctor. But you’ll dramatically improve your chances of getting to the bottom of things if you come to the doctor with useful information on what you’ve observed.
In fact, research has found that interviewing family members about the presence or absence of eight particular behaviors can be just as effective, when it comes to detecting possible Alzheimer’s, as certain office-based cognitive tests.
Dear Dr. K,
I live with my wife, who has Alzheimer’s.
I don’t argue or try to correct my wife when she misremembers or confabulates but this makes for two different worlds – hers and mine – and so we have less in common and grow apart. Is this the only option or have you better advice? — D.T.
First and foremost, I want to thank you for everything you’ve done, and are doing, for your wife with Alzheimer’s. It’s not an easy journey, and she’s very fortunate to have you involved.
Your question really speaks to the relationship issues that arise in Alzheimer’s caregiving. As the disease changes your wife’s brain, this is going to change the way you and she relate to each other.
I’m glad you are looking for advice on this topic, because maintaining and improving your emotional connection can yield big benefits for both of you, in the short-run and in the long run. In fact, it’s quite possibly the most important thing that you can do for yourself and your wife.
Feeling more connected will reduce stress for you both. This leads to three very important benefits:
In my opinion, reducing stress and improving emotional connection can probably do more for her brain health than most dementia medications, and most conventional medical interventions. (Avoiding delirium, however, might be equally valuable.)
The mind-body-heart connection is that important!
Plus, it’s a win-win, since what improves your relationship will help reduce the stress that caregiving can put on your own health.
So, my opinion as a doctor is that this is important enough to your health, and your wife’s health, that you should seriously consider investing time — and possibly money — in this nurturing of your relationship.
This week’s Q & A call was about how to better manage health and healthcare issues, when you’re taking care of someone with a dementia such as Alzheimer’s.
Most of the caregivers’ questions were about delirium. This is the state of worse-than-usual confusion that people can develop when they are sick or under serious stress.
I love talking to Alzheimer’s caregivers about delirium, because this is a really common problem that family caregivers absolutely can do something about!
The key is to know that people with dementia are especially prone to get delirium when they fall ill (especially in the hospital). And then you’ll want to know the basics on how to spot this problem, and how to get the doctors to address it properly.
A fact I wish more caregivers of elders knew: delirium can be the only obvious sign of a potentially serious health problem, such as a heart attack, a urinary tract infection, or a pneumonia. (Especially when it comes to older people with Alzheimer’s, they often don’t voice focused complaints the way younger people do.)
The trouble is, even though delirium is very common in older adults, studies have shown that it’s often missed by doctors and nurses. This is a important problem in healthcare, for three key reasons:
[Read more…]In my last post, I listed three things that I often wish more caregivers knew, about getting better medical care for a loved one with Alzheimer’s or another dementia.
In this post, I’ll list two more important things for dementia caregivers to know. Again, this will be an excerpt from Paula Spencer Scott’s book “Surviving Alzheimer’s: Practical tips and soul-saving wisdom for caregivers.”
But first, a quick word on Paula’s book, which as best I can tell, is really unique. On their own, her tips on handling common everyday problems — such as personality changes, memory glitches, difficult behaviors, and personal care issues — are good enough that I’d recommend her book to family caregivers because I love the practical “Why This, Try This” format she provides. She also offers solid advice on managing caregiver stress and relationship tensions.
Yet what’s really nifty about Paula’s book, is that she combines these practical tips with a section called “The Big Picture: Insights & Inspiration from the Wizards of Alz.” This is a compilation of twelve condensed expert interviews, and yours truly was very honored to be included.
Each expert has a different contribution to make to dementia caregiving. Whereas I focus on how caregivers can better manage the health issues, Bob DeMarco offers advice on “stepping into Alzheimer’s world,” Anne Basting provides guidance on using art therapy and storytelling, Teepa Snow suggests ways to decode the secret language of dementia, Leeza Gibbons encourages caregivers to not forget about themselves, and researcher Dr. Richard Isaacson provides cutting-edge advice on diet and dementia. (To see the full list of experts, you can preview the table of contents here, by clicking “look inside.”)
This creates a really rich and diverse package of perspectives, insights, and practical advice. So if you are looking for help surviving as a caregiver to someone with Alzheimer’s or another dementia, I encourage you to consider Paula’s book. (Note: Paula was my editor at Caring.com, and I also consider her a personal friend. But I wouldn’t tell you I recommend her book unless I really did like it.)
And now, back to what you can do, to get better healthcare for a loved one with dementia.
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.)
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.
Are you caring for an older person with Alzheimer’s or another dementia?
Would you like to learn more about planning and managing end-of-life issues?
If so, you might be interested in an online webinar this week that I’ll be doing in collaboration with Family Caregiver Alliance.
It’s scheduled for Thursday, November 7th, at 1pm PST (4pm EST). During the webinar, I’ll review how families can better address end-of-life planning in the context of a dementia diagnosis. I’ll also offer some suggestions as to how to handle common challenges at the end-of-life itself.
I will be taking live questions during the last part of the webinar. This is the part that I’m most looking forward to!
To sign up for the webinar, click here: https://www3.gotomeeting.com/register/764240806
Please note that Family Caregiver Alliance, who invited me to present, is charging $15 for the webinar.
This work by Leslie Kernisan MD & Better Health While Aging LLC is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
Based on a work at BetterHealthWhileAging.net.