“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?
image credit: VenusPetrov – There is a path to every destination
adrian watson says
I was initially very hesitant to discuss my Alzheimer but i just hope it can still help someone. I feel this will be very important information for all Alzheimer patients, because the most violent element in society today is ignorance. Be it any condition, a healthy diet and natural medicine is a road to fast recovery. I had suffered Alzheimer for many years, I fought for proper medical care and all form of humane treatment with little improvement I went through many sleepless nights and periods of intense grief, as do most families. I was recommended by a friend to use ZOMO herbs for my Alzheimer with high hope and assurance. I finally feel my illness is gone with no more symptoms. Doc email ID [email protected]
sharma shankar says
I had been desperately seeking for a psychiatrist but was told that the local ACT team was “capped” despite an influx of mental health funding I got frustrated. Only within recent time (3 years ago), I started reaching out online for Dementia cure. Eventually, I found a medication that alleviated his symptoms. I read an excellent article about Alzheimer’s/Dementia Disease that my mum too suffered with that is if I chose to use the word Suffer Which I DON’T. You see this condition is really what we make it out to be. Recovery starts with us the caregiver’s. How we think about this condition will determine how much power we chose to give it in our lives but the bottom line is that ZOMO medication works, it is a great relief, Lives matter and what I am encouraging others who have Alzheimer’s/Dementia illness, to begin doing!!. If you really care you’d try anything, mine isn’t so bad a board certified neurologist cured my Mum of Dementia. lack of knowledge was not a problem, and educating was not going to help. Stigma-free really needs more thought. check out the link to know more: https://curetoalzheimer.blogspot.com/
Malcolm Clark says
a plethora of forward research can be found here:
Susan Macaulay says
I’m in full agreement that too much focus, effort and resources are devoted to “cure” and not nearly enough to care. As to “What can we do better to support” efforts to improve the lives of those living with dementia, I think changing perceptions about the disease and the people who live with is paramount. Perception underlies everything. But change will take time, and a lot of hard work. It’s up to all of us to contribute in whatever way we can.
For me, that means advocating through my blog (http://myalzheimersstory.com/), giving seminars and workshops, being politically active and talking about the issues with people I meet at every opportunity.
Wayne Mesker says
Great article Kyrie
I’m proud to be the Outreach & advocacy Director for the Alive Inside Foundation
The Alive Inside Comm-University concept is now in the Pilot Stage in Healdsburg, California
an experimental community we are calling, “Safety.”
“Safety” will include elder care, a nursery School, youth housing, and a birth center.
It will be a place where Elders have value and purpose.
It will be in a walkable community.
It will be Community owned and profitable for investors and the community.
The dream is to create better endings and better “becomings” for all involved.
Cornelis van Dijk says
There are excellent initiatives taking place in The Netherlands. I have been reading about this for the last two years mainly in De Correspondent, a digital newspaper. One of the initiatives is “the dementia diaries”. I am also an appointed volunteer in Wake Country, NC to inspect nursing homes. As such I report to the ombudsman. In the last three years I have seen how the treatment of older people works in North Carolina.
S Lindsay says
I am an Aging 320 student at the Erickson School of Aging and I really connected with this post. I believe that people suffering with dementia get a bad reputation for having a debilitating disease that nothing can be done about. A lot of information on dementia is just about end of life care and not on how to go forward with one’s life after being diagnosed. I for one would like to see more suggestions on how to make one’s life easier with dementia and how to properly treat the transforming brain of a dementia patient. This connects with my class because we had to read various chapters on dementia specifically and other brain altering diseases. The main point was for people to see the diseases as just changes in a person’s perception of the world and not as inhibitory. I think if more people viewed these aliments this way then we would be more apt to create spaces where dementia patients are well cared for and treated as regular people. They should not be treated as infants and their autonomy as people should not diminish any because of their disease. They should be uplifted with comforting things and people in order to not disrupt their lives even more. While waiting for a “cure”, proper care and not stigmatizing should be top priority.
Susan Macaulay says
Another good way to change perceptions is not to use the words “suffering from,” but to replace them with “living with” instead.
David Rosen says
I am a student at the Erickson School of Aging at UMBC and I agree that the culture change needs to take place in regard to the care of our fellow citizens with Alzheimers and dementia. In regard to dementia, there are economic forces that affect the treatment methods. With the more common biomedical model there are large companies and lobbyists advocating the use of medicines that do not show that they are effective. According to research, medication has shown that only twenty percent of people taking medication show improvement. Karlawish, J (2006). NEJM 355(15), 1604-1606. Also, there is the culture found in for-profit nursing homes which leaves workers overworked, underpaid, and undertrained, which sets up an environment in which sedating individuals is easier to do than spending quality time with them. Most people living with dementia live outside of these homes, so the culture in our communities needs to change and we need ways to reach and educate outside caregivers about the disease. The caregiver’s role would be expected to be a “care partner” rather than a medication dispenser.
One training program that has found success is the Eden Alternative’s “Dementia Beyond Drugs” program for caregivers. I found the link in your blog people living with dementia thrive to be very interesting and uplifting.
It would be nice to get a fraction of the research funding that is going to find the elusive cure directed to improving the lived experience of dementia. 30 plus years after Kitwood challenged the old paradigms of dementia we still have support mechanisms and services that focus on safety, task and outcome rather than autonomy, enablement, experience and well-being. But there is hope! I have seen an emerging exciting trend for greater emphasis on these areas and as the voice of people living with dementia gets louder and louder the old ways will no longer be acceptable. I just wish it was happening sooner!
Head of Dementia Practice & Innovation
norman duncan says
All of what you have commented is true. Neurotransmitters transmitting cell to cell is the basic research that has baffled all researchers.How can you stop the electricity that keeps this event from occurring. Running for the cure of the AA is a foolish project and unwarranted. We require a brand new organization to minister this entire research and to be recognized by our Government as the single voice of experts to advise and consent to any funding for programs. We need to organize.