Advocacy, Challenges & Solutions, NHBPS, Toward better care

hundreds of studies make me mad as hell

I am frustrated by the fact that what is self-evident to me (and to thousands of other family care partners) appears to be a mystery to care providers, and apparently also to a whole whack of policy and decision makers who seem to require untold quantities of expensive research to confirm that which is as plain as day to dementia care advocates worldwide. Maybe someone should research why we need research to prove what is common sense and what dementia care advocates already know.

A team of 14 researchers at the University of Exeter in the UK likely spent a year or two working on this paper: Living well with dementia: a systematic review and correlational meta-analysis of factors associated with quality of life, well-being and life satisfaction in people with dementia, which was published in January 2018 in Psychological Medicine; see a layperson’s version in ScienceDaily here.

The team looked at research that spanned four decades and produced a 10-page report that came to a seven-line conclusion, which reads in part:

“Our findings suggest that efforts to improve QoL might focus on supporting relationships, social engagement and everyday functioning, addressing poor physical and mental health, and ensuring high-quality care.”

This is news?

According to the abstract, the conclusions were based on the analysis of “198 QoL studies taken from 272 articles in the meta-analysis.” It boggles my mind when I think about the amounts of money and effort that went into all those studies to come to the conclusion that people with dementia need the same things to enjoy a reasonable quality of life as people who don’t live with dementia. Hello! People who live with dementia are people, not aliens.

Wikihow gives a great list of five personal quality of life indicators for regular folk that include those in the Exeter study conclusion plus several others; here they are:

  • Quality of living conditions
  • Access to healthcare and education
  • Feelings of safety and security
  • Social interactions and relationships
  • Sense of purpose and meaning

Naomi Feil suggested a similar set of needs in her 1993 book The Validation Breakthrough, and of course there’s the person-centered model proposed by Tom Kitwood in the late 1990s, and the well-being model more recently outlined by Dr. Al Power in Dementia Beyond Disease: Enhancing Well-Being, which all say something similar in different ways.

The second half of the Exeter study’s conclusion calls for more research; it says:

“However, there is a need for longitudinal evidence that can point to ways of maintaining or improving QoL over time and enable identification of people at risk of declining QoL, so that preventive interventions can be targeted to this group.”

With all due respect to the researchers, I don’t think we need more research. We need better dementia care.

I think we need to immediately implement action plans that will transform substandard conditions in long-term care facilities and in our own communities to bring them up to acceptable levels. We need to put frameworks and programs in place that will ensure that the majority of people living with dementia attain a reasonable quality of life, whether they live in their own homes or in institutions. We are still a long way from that goal. We need to attain it before we have to maintain it!

The challenges and circumstances under which hundreds of thousands of people who live with dementia struggle every day preclude them from living well and enjoying a reasonable quality of life. These deplorable conditions include being misunderstood, stigmatized, vilified, neglected and abused, as well as being physically confined and chemically restrained, among other indignities.

It makes me mad as hell, and even more determined to be a creator of change.


13+ needs we share with people who live with dementia

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8 thoughts on “hundreds of studies make me mad as hell”

  1. You tell ’em, Amazing Susan! I like this post. It’s strong and to-the-point. Anyone out there taking notes? Anyone ready to make change? Let’s do it. We’re all in this together.


  2. Dearest and Amazing Susan, thank you for this… I am studying a Bachelor’s degree in Dementia Care and fully understand your frustration. The main reason I am at Uni now is because I was fed up with health care workers not listening to me as a carer for my wonderful 90 year old dad who is LIVING WELL with Alzheimer’s disease. Arming myself with detailed “academic” knowledge that still falls on seemingly deaf ears has barely helped. No, I am not a registered nurse, doctor, health care worker – but I KNOW what keeps my dad safe and happy and have living proof (but apparently not “evidence” haha). It is as you describe – the same for all human beings! It is a constant battle to re-educate the people that are involved in my father’s care. He lives alone in his own place, with a carefully programmed roster of care staff visits to enable and assist him with daily life such as meals, dressing, hygiene, exercise and SOCIAL INTERACTION. It takes him time to develop trust, respect and feelings of companionship with staff but when he does feel safe and secure with someone then ALL IS WELL. However, when a care manager decides to change the roster and put in a ‘stranger’ to help with his shower you can imagine his reaction (and we would all feel the same). Sometimes they just don’t get it.
    At Uni I am obliged to study the research that you refer to and often have to laugh. It is all so simple and obvious – to us. We have to keep spreading the word and educating all who cross our paths. People do not believe me when I tell them my dad is happy and well – he is on no medications (just probiotics and vitamin D), uses no mobility aids (he goes to 1 hour exercise to music classes twice a week to maintain strength and have fun), and we monitor his diet so that he is hydrated and consumes adequate protein. Add a sprinkling of car pool Karaoke (we sing out loud in the car), laughter (always having fun) and kindness (mutual understanding) and there we have it. Little to no memory, occasional confusion, but happy and meaningful days.
    Thanks for all the wonderful posts, vignettes and poetry. We must keep on educating (and researching, so they say), and create that change! Kate


  3. You are so right Susan, they do not tell us anything we don’t already know. As with the delayed social care green paper, here in the UK, which will only make recommendations, its all just newsworthy smoke screens to cover the inequalities and injustices of the system.


    1. Thanks for weighing in HC,

      Ironically, I am collaborating on several research projects at the moment, having decided that if I can’t beat em, I’d better join em. Sometimes it’s easier to create change from within, or at least it’s worth a try! One thing for sure, we can’t give up. #WeCanCareBetter


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