“Are we there yet?” I would query from the back seat, as many of us do in our early years.
“20 minutes,” without fail was my dad’s answer.
When I was old enough to notice that this answer was more automatic than accurate he explained that many years of working with teens taught him 20 minutes was just long enough for one to not count the minutes but not so long that they would complain, and as “there” can refer to anywhere it was not a lie – we would be “there” in 20 minutes.
This same phenomenon has been happening for the last 40 years in the search for a cure for Alzheimer’s. Since the 1970’s, a cure has been promised to be “just around the corner,” usually 5 to 10 years out. The most recent example came this month when the Alzheimer’s team advanced to compete at the Global XPRIZE Competition in 2018 with their plan to eradicate the disease. AgeWave founder Ken Dychtwald, a member of the XPRIZE team, said “Our team is firmly committed to stopping this horrific disease from becoming the health, social and financial sinkhole of the 21st century.” Twenty-five million dollars are being donated by one funder alone to this campaign.
This type of hyperbolic language and effort to focus precious resources exclusively on “the cure” distracts us from the amazing strides being made building communities where people living with dementia thrive, and it prohibits any consideration of the treasure and gift dementia can give our society. The truth is everyone reading this article is either living with dementia or has the possibility of living with it in the future. We owe it to ourselves and our communities to stand up and demand that, while we await a cure, resources are to also be spent on figuring out how to live well with dementia.
“I would be willing to bet there will never be a simple, well-tolerated medical cure for dementia,” says Dr. William H. Thomas, MD, entrepreneur and geriatrician. “Why not? The human brain is an astonishingly complicated organ and its workings are vastly more complicated than the simple chains of cause and effect on which most medical treatment rely. Non-medical approaches to the well-being of people living with dementia can go far beyond anything any pill has to offer.”
This is not a new or novel idea. The Alzheimer’s Association even has it as half of their mission:
A world without Alzheimer’s disease. The dual mission of the organization is to eliminate Alzheimer’s disease through the advancement of research and to enhance care and support for individuals, their families and caregivers.
And yet, anyone who works in the eldercare field knows the latter half of this mission has been grossly neglected in comparison with the first; both halves of this mission are incredibly important. At this time, the truth is we are nowhere near understanding Alzheimer’s, let alone curing it, and therefore, the second half of this mission has much more potential to ease the suffering associated with Alzheimer’s and other intersectional social ills. Afterall, a dementia-friendly world is a human-friendly world.
Gerontologist Eilon Caspi recently published an article in Dementia that explores this duality, “Trust at stake: Is the “dual mission” of the U.S. Alzheimer’s Association out of balance?”. In this article, Caspi gives us a comprehensive look at the last 30 plus years of the “Fight Against Alzheimer’s” and the gross imbalance of effort and funding between the dual mission of seeking cure and best care.
“Yes we will End Alzheimer’s – or at least the way we think about it today” – Dr. Peter Whitehouse, MD, PHD
Are we there yet? Yes. However, the “there” we are close to when it comes to a cure is not the one we are being led to believe. We have at our disposal the means necessary to end the way we currently think about Alzheimer’s. But to do this we must let go of long held patterns of being only bio-medically cure-focused. We must follow the lead of self-advocate communities such as Momentia and To Whom I May Concern and others in re-writing the social story around dementia, while also continuing to learn from organizations like Dementia Friends about how to make our world a better place to live with dementia.
Whitehouse responded to Caspi’s article by saying:
“That said, [Caspi’s Article] does not, in my opinion, go far enough in its criticism of the underlying thinking about diagnoses like Alzheimer’s and MCI [Minor Cognitive Impairment], the dishonesty and greed in the field that underlies unrealistic claims, the need to take into consideration life course perspectives, and the importance of balancing the challenges of dementia with other social priorities. Deeply thinking through our individual and social responses to dementia has profound potential for influencing how we think about not only aging, but our collective humanity. Yes, we need to prevent dementia and, when we implement more relevant public health measures to accomplish this, such efforts will help many other health conditions. When we develop communities friendly to people with dementia we will make them friendly for all of us.”
The unbalanced focus has not only swayed resources away from programs and culture change that could offer us an end to Alzheimer’s – it has also made the social suffering for those living with dementia worse by maximizing the stigma. Dr. Al Power, MD geriatrician, has written extensively about this for ChangingAging. In response to Caspi’s article, Dr. Power said:
“As I mentioned to Eilon, the other side effect of this narrow view of dementia is the refusal to see people’s distress as anything but another “neuropsychiatric symptom of dementia,” and to respond in kind with a parade of useless pills. And now, the AA (Alzheimer’s Association) is repackaging their Cure message, by saying they are “looking for the first Alzheimer’s survivor.” As my friends living with dementia have lamented to me, “So…I am not a survivor, living with my dementia for the past 10 years??”
We can turn the tide. We can choose to invent and support campaigns that seek to understand the psychosocial aspects of dementia as well as the biomedical. We can support culture change movements with our words, actions, and funds. The change we need will not be found in one solution but through collective effort. Alzheimer’s in particular and dementia in general is complex far beyond our understanding and accordingly so will be the cure.
Dr. Whitehouse explains:
“We suffer from a derangement in our collective thinking about the complexities we face. The good news is that if we are more disruptive and get our social responses to dementia more balanced and wiser, we can regain the trust lost in so many parts of our societies and be more successful as human beings in leaving our legacy for the next generations to live on this planet……But let us be careful that in this creative space of rethinking how to respond to the challenges of brain aging that we remain skeptical of those who promise their own, newly discovered, patented or copyrighted, “scientifically proven” solution to end Alzheimer’s. The “solution” belongs to all of us and is all of us.”
Indeed, the solution does belong to all of us and will come from all of us working together.
What are your favorite organizations or programs that are truly making a difference in the lives of people living with dementia, their allies and communities?
What can we do better to support these efforts?