While attending Alzheimer’s Disease International in Perth, Australia last April, I was invited by Executive Director Marc Wortmann to attend a meeting to share opinions about what our top priorities should be regarding Alzheimer’s. Although my conference schedule did not allow me to attend in person, I passed my comments on to Marc, because I feel very strongly about this, and I knew that my thoughts would likely fall outside the majority opinion.
I think it’s fair to say that most of the people at the meeting—and many others around the world—would list research into new medications as the top priority for Alzheimer’s. Many are pushing for a cure, and I imagine that even most of those who realize how daunting a prospect “cure” truly is would still argue that developing new treatments to slow onset and progression would take the top slot.
I beg to differ and will probably ruffle a few feathers in doing so. But keep in mind that in spite of my holistic approach and rejection of many narrow biomedical precepts, I am viewing this as a physician and scientist (and a bit of a mathematician as well).
I told Marc that I believe our top priority is to build capacity and capability in our communities, both for our aging population in general, as well as those living with changing cognitive abilities of all kinds. Here’s why:
The rapidly expanding demographics regarding Alzheimer’s prevalence are a microcosm of our global aging boom, because Alzheimer’s (along with most other forms of dementia) is, first and foremost, an age-related condition. The rapidly rising number of people living with the diagnosis is not due to our risk increasing—in fact recent studies show that the lifetime risk of developing Alzheimer’s is decreasing with each generation, mainly due to better preventive and cardiovascular health. In other words, your lifetime risk of getting Alzheimer’s will be less than that of people born in the decades before you.
The rapidly rising number of people with Alzheimer’s that we see in the US and most high-income countries is mainly due to all of those aging Baby Boomers, who are creating a huge bubble in the ranks of older adults—10,000 Americans turning 65 daily. And we as a nation are ill equipped to respond in a positive way to this aging boom, let alone the increasing numbers of people living with a diagnosis of dementia. Our solution to date has been to force people to live fairly independently, with very little in the way of age-inclusive community supports; and then when they can no longer manage on their own, we move them to a variety of “senior living” environments, which are booming as quickly as the Boomers!
This is a recipe for disaster.
There is only one number you need to know to understand this: the Potential Support Ratio (PSR), defined as the number of working adults for every retired adult. In 1950, the global PSR was 12:1—that is, twelve working adults for every retired adult. By 2000, the ratio had fallen to 9:1, and in 2050 it will be 4:1! So we clearly cannot respond to the aging boom with more senior living campuses; who will build, staff, and maintain them??
The only sustainable answer is age-inclusive communities, and it follows that such communities must accommodate all abilities, including changing cognition. There are other benefits to this approach—keeping elders (and people living with dementia) engaged in community will not only reduce excess disability and costs; the community also benefits from the wisdom and experience of older adults (including those living with dementia).
At Alzheimer’s Australia Western Australia in Perth, a program has been running for several years that connects people in the community who are newly diagnosed with Alzheimer’s with volunteer opportunities in their community. So when much of society is saying, “You’re dying; get your affairs in order” (a message described by Kate Swaffer as “prescribed disengagement”), the message from AAWA is, “We need your talents; your neighbors need your help. You have a purpose.” Compare the outcomes and costs of this approach versus the probable early move to a ”senior living campus” or nursing home that disengagement would cause.
In the UK, 30,000 bus drivers around London were given education about dementia, to help them to be more understanding and helpful of their riders’ needs. Inclusive community initiatives in UK, Australia, and many other countries are far ahead of the US; and as with global warming, the period of time during which we can respond before things get really bad is growing short.
Do I support drug research for Alzheimer’s? Of course I do. But I feel that meaningful progress in drug treatment will be very slow in coming, and that there will never be a day when people do not forget more than we think is normal; that’s the result of nearly doubling our life expectancy over the past century.
Even if we waved a magic wand and cured all cases of Alzheimer’s tomorrow—the sixth leading cause of death in the US—what would the result be? More older people, whom we are already ill equipped to accommodate. And many of them will eventually develop other age-related conditions, including the myriad other forms of dementia that exist.
So, to me, the priority is clear. Developing an inclusive society is Job One. You can read this argument in much more detail, along with a detailed vision for the “Inclusive Society,” in Chapter 11 of my latest book, Dementia Beyond Disease. Tell me your thoughts about this!