By Dr. Al Power
Thanks to Denise Boudreau-Scott for her beautifully written interview with me about “memory care” and segregation. The article drew many comments, and I thought it would be useful to address them in more detail.
There are many more arguments against segregation than Denise could possibly have included; they can be found throughout my two books. But I’ll list just a few more here. On the clinical side, there is the lack of evidence for better care (Cochrane Review, 2012), increased risk of elder-elder “mistreatment” (Annals of Int. Med. 2016), and demographic studies showing significantly higher antipsychotic use in many such places (BUPA 2009, Hawkes Bay 2005). Of course, there are exceptions to all of these studies; but the best organizations achieve their results via their approach to care, not their segregation.
Then there’s the inescapable demography that tells us that in 2050, there will be only 4 working adults for every retired adult. This challenges not only memory care, but also senior living as a primary approach to global aging. If we continue to move older adults out of their communities to separate places to live, who will build, staff, and maintain them? And that begs another question: If communities worldwide are responding by becoming more “dementia-friendly” (i.e. inclusive), why does the aged care sector remain steadfastly “dementia-unfriendly”?
Please understand that this is not about bad people who don’t provide good care. In the 1950s, there were many talented, compassionate teachers who worked in segregated schools and provided a great education to their students. They should be honored for their work; but that didn't make segregation the right thing to do. Also, I do not expect you to rush out and dismantle all memory care communities; just acknowledge that there are systemic barriers to optimal well-being for the people who live there that must be overcome, just as we see in institutional nursing homes.
Readers requested solutions to the resistance they encounter from other residents and family members. This is the result of ignorance, stigma, and fear. And if you already operate a memory care area, you are actually fueling that fear, in effect saying, “You are right; those people don't belong around you.” So memory care is a bit like smoking, in that it’s easier to not start than to quit once you are doing it.
The best way to quit smoking is cold turkey, but de-segregation can be approached in a more gradual fashion—first by bringing people out to social events, then eventually unlocking the door, and finally re-integrating. (For an extensive discussion of unlocking doors, see my 4-part blog from last year that starts here: The Hidden Restraint).
To overcome resistance, try these five steps: (1) Educate. (2) Humanize, by helping others to know the whole person, not just the disease. (3) Demonstrate dignified, compassionate approaches so that others can see that their neighbors are valued. (4) Learn the best ways to enhance well-being and respond to distress (shameless plug).
Finally, (5) each organization must decide if their underlying values embrace equal rights for people living with dementia. If so, then take a stand. If your principles are such that you would decline a family member’s request to remove someone of a different race or religion, then you need to take an equal stand for people with different cognitive abilities. (You can see my 12-minute presentation on memory care from last year’s Alzheimer’s Disease International conference in Budapest as posted below.)
Who does this well? Among my LTC paragons are the St. John’s Penfield Green House homes that I helped to develop during my time there. In fact, Green House Project Senior Director Susan Ryan reminds us that the vast majority of Green House homes are integrated houses, and she wants to see more connection to the larger community as well. On the retirement community side, one standout I have visited is Carol Woods in Chapel Hill, NC. There are many, many more.
Thanks for listening and good luck!