Nine tips for traveling with family members impacted by dementia (AFA)

The Alzheimer’s Foundation of America (AFA, alzfdn.org) offers nine tips for traveling with family members impacted by dementia.  These tips apply whether you are traveling near or far.

Robin

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https://alzfdn.org/nine-thanksgiving-travel-tips-families-impacted-dementia/

Nine Thanksgiving Travel Tips for Families Impacted by Dementia

AFA offers the following tips for family caregivers to consider:

  • Advise airlines and hotels that you’re traveling with someone who has memory impairment and inform them of safety concerns and special needs.
  • Inquire in advance with airports/train stations about security screening procedures.  This way, you can familiarize the person beforehand about what will happen at the checkpoint to reduce potential anxiety.
  • Plan the travel mode and timing of your trip in a manner that causes the least amount of anxiety and stress.  Account for the person and their needs when making arrangements; if they travel better at a specific time of day, consider planning accordingly.
  • Preserve the person’s routine as best as possible, including eating and sleeping schedules. Small or unfamiliar changes can be overwhelming and stressful to someone with dementia.
  • Take regular breaks on road trips for food, bathroom visits, or rest.
  • Bring snacks, water, activities and other comfort items (i.e., a blanket or the person’s favorite sweater), as well as an extra, comfortable change of clothing to adapt to climate changes.
  • Consider utilizing an identification bracelet and clothing tags with your loved one’s full name and yours to ensure safety.
  • Take important health and legal-related documentation, a list of current medications, and physician information with you.
  • Depending on the trip duration and/or the stage of the person’s illness, consult with their physician to make sure travel is advisable.

3-step Framework for Diagnosing Dementia (Brad Dickerson, MD)

In this five-minute video, Brad Dickerson, MD, a neurologist at Mass General, describes a 3-step framework for diagnosing dementia:

www.mdmag.com/peer-exchange/early-diagnosis-dementia/recommendations-for-diagnosing-alzheimer-disease

Here are excerpts from the transcript:

Currently, I think we advocate for a 3-step framework that starts by describing the person’s overall cognitive functional status. What we mean by that is, does the person have mild cognitive impairment? Does the person have dementia? … What we really need to do is interview the person and, ideally, an informant, and find out what they are lacking in terms of independent functioning. What have they lost? What do they need help with?

[This] ultimately has major implications for the care plan. Establishing whether the person has mild cognitive impairment or dementia is very important, and I think that threshold varies from person to person and can be quite an arbitrary decision that really takes some clinical experience. Ultimately, what I like to ask people is, if you, as the care partner, can leave the person and go on a trip for a weekend or a week, would they function independently at the things that they need to try to get done to get by in daily life? If the care partner says, “No, I would never do that,” you can pretty comfortably say that the person probably has crossed the threshold into dementia. I think that’s the starting point, No. 1.

No. 2 is, what’s the particular cognitive behavioral syndrome that the person is experiencing? …[Is] the main problem memory loss? Is the main problem executive function? Is the main problem language? Are there multiple problems? A lot of times we see, I think, this common presentation of a person who has memory loss. They’re just not holding on to information, and they also have executive dysfunction. They’re not able to reason. They’re not able to perform tasks to the level that they used to be able to in order to get the job done to reach goals in a valid way.

I think that the syndrome is really meant to capture the major symptoms and signs that the person has of their illness. And that communicates important information to our colleagues and to the patient and family about where their problems are. I think it also allows you to highlight…what their strengths still may be. If this person has a primary memory loss syndrome but their executive function is still good, maybe they can make use of strategies to compensate for some of the problems that they’re having with memory. If they have executive dysfunction, they’re probably not going to be able to do that. Ultimately, that cognitive behavioral syndrome, that second level of specificity in our diagnostic formulation, communicates, in shorthand, to us and to others what the person’s problems are and maybe what they can still do.

And then the third level is, what’s the brain disease that is the cause of the problem? Sometimes it’s multiple diseases. Often, it’s compounded by other medical problems or things like medication effects that affect brain function but are not necessarily a disease in and of itself. The most common, I think, is Alzheimer disease mixed with cerebrovascular pathology in an older adult population—people over the age of 70, 75. In the younger people, I think it can sometimes be a more pure condition, whether it’s Alzheimer disease, or frontotemporal degeneration, or Lewy body disease. Those can often be primary diseases, especially in younger people.

That’s really the 3-step formulation that we advocate that we try to follow. It’s not always possible to be 100% confident in any 1 of those levels, and I think that’s where we have to talk about likely due to Alzheimer disease or likely due to cerebrovascular disease, and rate our level of certainty so we can think about whether we need some additional specialty involvement. If so, what does that involve, and how important is that in thinking about the management? We don’t necessarily have to have the sophisticated biomarkers that we talk a lot about in every individual with dementia likely due to Alzheimer disease. I think there are plenty of people we can all diagnose with fairly straightforward assessments and tests and not do the multimillion-dollar work-up on, that we often end up spending time talking about in the more specialized cases.

 

“Little Wished-for Deaths” (beautiful caregiving story)

This is a beautiful story about a woman who cared for her 90-plus year old grandfather with Parkinson’s Disease and dementia.

Excerpt:

“Because grief, like death, doesn’t adhere to our constructs. The wished-for deaths of ailing loved ones doesn’t make them any less loved. It only means we hoped for an end to suffering, on both accounts. And deaths that are supposed to be small can sometimes feel big. … The funeral commemorated a life that spanned nearly a century, putting those four years into a birds-eye perspective. They were sometimes burdensome, yes, and sometimes beautiful, but only a small portion of a rich and varied life: of his and mine both.”

The full article is here:

www.nytimes.com/2019/10/11/well/family/little-wished-for-deaths.html

Little Wished-for Deaths
by Mary Pembleton
October 11, 2019
New York Times

Robin

“The Comforting Fictions of Dementia Care” (The New Yorker)

This is a thought-provoking article in “The New Yorker,” by Larissa MacFarquhar, about care facilities using nostalgic environments to soothe their residents:

www.newyorker.com/magazine/2018/10/08/the-comforting-fictions-of-dementia-care

The Comforting Fictions of Dementia Care
by Larissa MacFarquhar
The New Yorker
October 1, 2018

In the article, she notes that:

Some people in the dementia field believe that to think of the disease as a terrible harm is to think slightingly of people who are living with it.  They argue that, with proper care, a person can live as good a life with dementia as without—in some ways and in some cases even better. … Those working in dementia-care often ask, Should a person be defined by thoughts and memories? Aren’t emotions and bodies enough?

Robin

“Hiring In-Home Help” (Family Caregiver Alliance publication)

This is another terrific publication from Family Caregiver Alliance on “Hiring In-Home Help.”  Topics reviewed include:

  • Do I need assistance?
  • My loved one only wants me to help.
  • “I don’t want a stranger in my house!”
  • How do I find help?
  • Home care agency — pros and cons.  And some questions to ask the agency.
  • Private hire — pros and cons.
  • What will it cost?
  • How can I afford it?
  • How do I find the right person?
  • Write a job description including training desired, driving, transferring skills, experience with people with memory or other cognitive impairments, language skills, housekeeping, pets, smoking, and hours.  If hiring privately, also ask about wages, and are you providing food?
  • Interviewing with lots of sample questions.  Some sample questions include “What is your favorite kind of client?”  “What pushes your buttons?”  “Is there anything in the job description that you are uncomfortable doing?”  “Give an example of how you deal with someone living with memory problems.”  “How do you handle people who are stubborn?”  “What is your experience transferring some out of bed or chair and into a wheelchair?”This is good advice:  “If the care receiver is present, watch the interactions between the attendant and the care receiver. Do they only respond to you, or do they include the care receiver in their answers?”
  • Writing a contract for hiring help.
  • What are the employer’s responsibilities?
  • Communication.

Here’s a link to the webpage (which can be printed):

www.caregiver.org/hiring-home-help