A recent article by Stone Hearth News reports that a study by researchers at Penn State and the Benjamin Rose Institute on Aging found that care-givers and those they care for who are suffering from mild-to-moderate dementia often have different perceptions regarding the care-giving. The article is titled "Dementia caregivers do not understand the things that are important to their relatives: study" and - insofar as it goes - I can't see how it could be conclusive.
From the article:
The researchers interviewed members of the pairs separately, asking questions related to how much value they place on five core values: autonomy, burden, control, family and safety. For example, one question focused on the level of importance a dementia patient gave to the ability to spend his or her own money in the way he or she wants.
Perhaps it's the way the article was written or the specific examples provided by the study leader (Steven Zarit), or both, but this really stuck in my craw when I read it. Hopefully, the issues I have with the article aren't also present - or worse - in the study write-up itself.
Make the jump...
Another excerpt:
“Our results demonstrate that adult children underestimate the importance that their relatives with dementia placed on all five core values,” said Zarit. “For example, the person with dementia might think it is very important to continue to be part of family celebrations, but his or her caregiver might not.”
Um, yeah.
Persons suffering from mild to moderate dementia - at least insofar as Alzheimer's patients go - have issues with perception and memory. One of the reasons that someone ~has~ a primary care-giver is to mitigate the "brain fart" manifestations that the Alzheimers victim may be prone to.
For example, an incident from the past:
Mumsie was getting into the swing of the Adult Day Health schedule pretty smoothly. We'd get her up, washed, dressed and downstairs in time for breakfast, then the shuttle bus would pick her up or I'd drop her off at the center.
In the afternoons, I'd usually pick her up.
Two different factors bothered me about the center: the first revealed itself when I went in one afternoon with Wifey to pick up Mumsie.
The day program leader mentioned that Mumsie was starving whenever she came in and never seemed to be getting breakfast at the house. I was shocked, and pointedly mentioned that she did, in fact, get breakfast every morning. I asked her why she would come to such a conclusion. "I asked Mumsie, and she said she hadn't eaten. On top of that, she was hungry."
Okay - let's examine that for a moment:
- A dementia patient states she can't remember the breakfast she had a little over an hour before, and
- Same patient is deemed "ravenous" because she wants toast w/peanut butter & coffee with the others who are getting toast with peanut butter *(sometimes Jelly - sometimes PB&J sammiches)
All week long, apparently, the folks were taking Mumsie at her word and deciding not to ask me - her primary care-giver - about her morning routine. They took her word at face value, in spite of the fact that she usually forgot what she had done 15 minutes before.
It wasn't exactly confidence-inspiring, to say the least. The people at the center were alleged specialists in Alzheimers, and yet they seemed completely at sea with regard to how to evaluate their charges.
Anywho - back to the study, and one more example. The first excerpt I'd provided from the article mentioned "one question focused on the level of importance a dementia patient gave to the ability to spend his or her own money in the way he or she wants." What degree of autonomy - and what level of dementia - did the researchers use for their base levels? When Mumsie was still largely autonomous but could no longer safely drive, we convinced her to give up her keys. We hadn't locked down her bank account or taken away her charge cards yet - she was still "competent" enough for us to leave her for a few hours during the day if need be. But that didn't last.
Wifey had taken over balancing Mumsie's checkbook and making sure the bills got paid, but at one point the charges on a couple credit cards shot up - Mumsie, home during the day, had seen several infomercials selling various things, and dutifully called the numbers given when told to call with her credit card ready.
Is that an example of spending that the doctor wants to preserve?
Or how about the daily walks Mumsie took to the local bank branch, where she'd withdraw $1,000 from her account (each day) and walk home.
We noticed this when Wifey checked the account while paying bills and saw that it was over $20,0000 short. Mumsie had no idea where the money had gone or what it was used for, and denied that she had anything to do with it.
We found or accounted for around $13,000. We still don't know what happened to the other $7k.
Mumsie was still very much able to carry on a conversation at those times, as well as clearly express her wishes.
But that doesn't mean that she did not, in her words, "need a keeper." She clearly did. And that's when my role as primary care-giver became 24/7, 365.
What's your take on the article and its implications, the way it is presented online? Do you think the study is realistic and/or accurate, or does the article not provide enough to go on (outside of the quotes from the study leader)?