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!
Leah Bisiani says
I have personally had many reservations in regards to the ongoing panic that has occurred over the last 10 years, with the discussions and fear of the impact our ageing population will have on resources, inclusive of the additional topic of an increased percentages of people living with dementia.
As discussed, this is not due to any factor other than a large influx of older people directly related to the baby boomers, and a growing population overall. Additionally we throw into the mix the increase in average lifespan that occurs due to evolution and advancement of modern medical technology, which enables our older population to live a longer, fuller existence.
I too attended, and was part of the Perth conference recently.
I understand the need to find a cure for Alzheimer’s. Just as I do for all conditions that plague our population in great numbers. However, as we are still theorising ‘why’ the changes occur in relation to Alzheimer’s, an actual cure cannot be found until that point.
Here lies the paradox. Do we spend all our funds on research, thus neglecting the crucial and largely unmet needs in the present of those living with dementia???
Both are vital.
Thus I would suggest research is definitely required and to be continued to enable change to occur in relation to a cure.
However, what is paramount here, seems to be the utilisation of funds in the now, to ensure those hundreds of thousands of people living with dementia, who are not receiving the support and care they truly deserve, are allocated as much funding as required to enable them to live a life of quality.
We cannot justify the ongoing neglect of those living with dementia in the present.
I do believe, realistically, that too much focus is placed on finding a cure, when we still have such a large percentage of older people living with dementia living neglected, and destroyed lives, existing only with a sense of core suffering and despair.
Yes, cures and medications are a commendable future vision, however, to be truly humane, we do need to benefit and care for those in desperate need now, for compassionate and empathetic quality care. Can we not allocate funds to successfully manage the symptoms until a cure is found, and help those that we are aware of who suffer needlessly, are mismanaged and misunderstood, because of the unfair injustice of a cure taking precedence to their care in the present.
I believe that we have a duty of care to ensure our population living with dementia in the present deserve nothing less than the best, and when a cure is found, that will be a day to celebrate.
Until then lets prioritise a little better to ensure no one misses out.
Leah Bisiani – RN.1/Dementia Consultant/MHlthSc
Anna Sontag says
Some of these threads point to a question of how to access and use the wisdom of elders. One important practice in that direction is to create more and more opportunities for elders to communicate, especially about what they care and know about, and additionally in terms of developing solutions to problems. Just as in Special Ed, there is a role for supports, like keeping track of all the good ideas and moving them to the next level, communicating with others to share and continue to develop them. Creating a forum that uses the internet, and captures the bright spots, and retransmits them so the conversation stays alive. Connecting elders who share an interest, expertise, and facilitating that communication with times and techniques and data saving. It can take some doing to organize, but the wealth is powerful.
Rita Anand says
Dr. Al Power and you all Friends,
Thank you !
This is a REALITY !! Outstanding topic….. People like you and all others who are in health care profession should carry this passion. Education and Training is very Important for any one who has been touched by dementia in any way-whether professional care or family care.
All new investors, management companies & Builders who are building these future communities should understand this need and create communities with passion …. not as a Business !!! I am right there with you on that ….We need help NOW ….
Michelle Daniel says
Great viewpoint, Al! I think we (as a society and specifically our healthcare industry) have missed an opportunity because we are not training as well as we should. I will continue to raise funds and walk for a cure as most of us do, but there are elders RIGHT NOW (and more to come) that need our understanding and an ability to have a voice. Training is so very important!! Personal and organizational transformation are imperative. I humbly ask if anyone is reading this and wants to attend an upcoming training, please contact the Eden Alternative at http://www.edenalt.org for training information near you. Thanks!!
Susan Quinn, MSW says
Yes! Yes! Yes! A thousand times yes to the 10th power, Powers! Our obsession with defying senescence, a grand and beautiful design, places our society smack dab in the middle of unabated terror of dementia. We deal with this terror with grasping desperately for an elusive cure that keeps us so sadly detached to the reality of what is happening this very second. Your insight and research into the concept that dementia is something to embrace as a demonstration of transitioning from the earthly to ethereal has helped my clients immensely – it is the antithesis of Seroquel. I am daily so very grateful for your insight, work and approach. YOU GET IT!
ALL dollars should not go into research for a cure and it they do not. The vast majority of RESEARCH dollars go toward treatment. Of course, I want those with dementia to live well with the disease but I also want prevention, treatment and a cure for those that follow me. It isn’t just about those of us with dementia but about the generations who follow us. ALL areas regarding Alzheimer’s and related dementias are grossly underfunded. Let’s not start divisive thinking by saying one aspect is more important than another.
ALL the funding should not go into research for a cure and it does not; most RESEARCH dollars go for treatment. Some organizations wish to put their money into this area and it is important. Of course, I want those with dementia to live well with the disease and I want dollars put toward this but I also want prevention, treatment and a cure for those that follow me. It isn’t just about us with dementia; I think way beyond my own little life. ALL areas regarding Alzheimer’s and related dementias are grossly underfunded. Let’s not start divisive thinking by saying one aspect is more important than another.
Richard Taylor, phd. says
Hello, as usual Dr. Power’s message should be characterized as Dr. Powerful. Organizations, large organizations are trying to confront the inevitability of a world population which has never been older, never been as vulnerable to the symptoms of dementia by throwing money at a bunch of willing researchers to cure away the problem. It hasn’t worked, it isn’t working, it won’t work (but that’s another story).
What we already have to work with are our communities. While readiness varies greatly between governmental entities, citizen support services, and an aging and aged psycho social infrastructure, these services can be, should be our first responders to this crisis. Our communities aren’t just the best vehicles to work with, to strengthen, to fine tune, they are our only tools to realistically deal with the inevitability of this growing segment of everyone’s population.
While we worry about pot holes, more police officers, occasional terrorist’s terror the aging of the world continues. When will human needs trump all and become the priority of now and of the future? When will our leaders think, plan, and act for a better tomorrow starting today?
Slow down, if not temporarily stop this baseless and useless rush to fund cure research. If you want to collect money for a real issues of dementia then support psychosocial research. Leadership isn’t lacking, there simply isn’t ANY forward thinking leadership. A cure is not a solution, it is a twenty plus year hope of many. It is an easy “fix.” A fix which simply does not exist, and will never exist to wipe away dementia and return us all to the golden years when people didn’t live long enough to confront the symptoms of dementia, they just died earlier.
It is time for us each and all to stand up and speak out about an issues which is unresolved, out of control, and impossible to reach.
Forward together, towards true, inclusive, and well funded communities efforts to adjust and support the aging of their citizens.
Kay Van Norman says
Thanks Dr. Powers! Community inclusion is key to well-being for everyone. Even older adults without cognitive challenges are put on the shelf in senior housing. I’ve been advocating for purpose-centered senior living for awhile – where communities designed to “take care” of older adults give way to creating centers for elderhood where the priority is giving individuals the resources, tools, support, and encouragement to solve problems in the broader community. Care would be provided but as just one of the “supports” to help elders of every shape, size, and ability stay engaged!
… and a note to your comment about how community “…benefits from the wisdom and experience of older adults.”
It strikes me that this is something that gets repeated a lot, but without real meaning.
Webenefitfromthewisdomandexperienceof … gets repeated like it’s something everyone knows. But we so-called developed nations don’t *live* this. With the exception of an occasional breathless article about a marathon swimmer or lauded artist, we have a lot of work to do to make those words ring louder and truer. If we really believed it, we wouldn’t be shutting so many aged/aging humans away, and we wouldn’t be so shocked when they are recognized for their contributions.
Alzheimer's Speaks says
Whoop Whoop! Great Article Al. Ask anyone dealing with the disease and they will tell you they need help today, not tomorrow. The fact of the expense of the disease alone, shows we need more dementia friendly initiatives to offset care needed. Our medical model is not working well for people with dementia at this point. Although improved, it still has a long ways to go. I’m excited to see all the grassroots efforts making huge impact around the world by collaborating, leveraging creativity, skill ses, resourcest and passions.
Rick Gamache says
Al: thanks for continuing to inspire us all with your wisdom and your vision.
Jennifer Berg says
BRAVO! In researching the Village to Village Movement (Aging In Place) for my community, I interviewed a Physician who consults with our, one local retirement facility, he felt that the concept would be hard to sell because change is hard for most people – helping our Elders remain in their community is not where the profit is either!. And while he was quite familiar with the Eden Alternative, he expressed similar apprehension for that Movement. Although his answer is a given, it is also one that can discourage others from being innovative. Thank advocating for change in addition to medical research – even if it isn’t popular!
Gail Weatherill, RN BSN CAEd CDP says
AMEN, AMEN and a thousand times AMEN! As a nurse for people living with dementia, I seethe with frustration at the blind chase for a cure without recognizing current needs. Groups like the Alzheimer’s Association here in the US are moving to put all their eggs into the research for cure basket. In the meantime, those with dementia and their care partners are suffering immeasurably. Thank you for a sane perspective, for recognizing we are years from a cure and need to address our approach to care NOW.
Glenna Wilder says
Hello Dr. Power,
Your post is a breath of fresh air for me. I am a graduate gerontology student at Marylhurst University and will be starting my thesis this fall. It will be largely about disrupted socialization of elders, the need for creative alternatives to psychotropic drugs, and the need for the type of community you have just described. Thank you, and keep beating that drum – I am right there with you.