My mom died in her early 60s due to complications of Alzheimer’s. She was a fierce woman, even in her dementia. My sister, God bless her, took on the care of my mom once it became obvious that she could no longer be left alone. She found her a well-kept home and moved her in.
I found out after she died that people with Alzheimer’s lose their inhibitions, basically all the layers that we learn to hide behind that civilize us. So, my mom, whose first cuss word I heard her use was “Hell’s Bell’s” cussed like a sailor, kicked other tenants of the home and got caught throwing her leg over the fence to escape on a regular basis.
Unfortunately, one of the other things I didn’t learn until she died was that Alzheimer’s patients forget how to swallow. You have to be very careful how they eat because the food that they swallow incorrectly can get into their lungs and cause pneumonia, which is the complication that my mom died from. I felt guilty for years about that, that somehow I should have known and taken better care of her. But this was before the days of Google and information was not as accessible as it is today.
This is one of the reasons that I wanted to post this press release. Information is power and with these kinds of numbers, we need to be paying attention to a cure or an effective treatment.
A Mission of Empowerment
With nearly 10 million new cases of dementia and Alzheimer’s disease occurring each year and no cure, AARP recently launched a new campaign, “Disrupt Dementia.” The campaign aims to help drive new diagnostics and treatments for dementias while providing education, support and hope for patients and family caregivers impacted by the physical, emotional and financial stress of dementia.
The centerpiece of the campaign is AARP’s new $60 million investment in the Dementia Discovery Fund (DDF), the first and largest venture fund focused on discovering and developing effective new drugs for treating dementia. AARP also helped secure the participation of UnitedHealth Group and Quest Diagnostics, which have invested $10 million and $5 million respectively – totaling $75 million to the DDF’s fight against a condition that has not seen a new approved treatment in 15 years.
“AARP’s mission is to empower people to choose how they live as they age, but dementia takes that privilege away from millions of Americans and people around the world,” said AARP CEO Jo Ann Jenkins. “The statistics are staggering, and the numbers continue to climb each year. By 2030, there are projected to be 82 million people suffering from dementia and despite decades of research costing billions of dollars, there is still no cure and few ways to treat symptoms of dementia. With today’s investment in the DDF, AARP and our partners have committed to helping find innovative solutions that can reverse the trend of this health crisis and champion brain health.”
Poor Treament Options
A newly released AARP survey of U.S. physicians shows that doctors are also frustrated with the limited tools available to diagnose and treat dementia for their patients. One in three U.S. physicians surveyed say they feel that current dementia treatment options are poor, and nearly half of physicians strongly agree that there needs to be more diagnostic tools and research for dementia. In fact, most physicians (62 percent) say a lack of diagnostic tools is the greatest impediment to effective treatment. Moreover, there is not significant optimism among physicians for progress anytime soon. Only 10 percent say they are extremely or very optimistic that effective treatment protocols will emerge in the next five years.
The last Alzheimer’s drug was approved more than a decade and a half ago and only brings temporary relief of disease symptoms. Since that time, more than 400 clinical trials have failed. Highly touted research focusing on eliminating plaques and tangles has, unfortunately, not produced safe, effective treatments, and some companies have abandoned their efforts in the face of long odds. Because of this, nearly half of the physicians in the new AARP survey say dementia is a hopeless diagnosis.
And the brain health crisis doesn’t just affect dementia sufferers, but also their friends, family and loved ones. The latest data shows that the impact of dementia on both patients and family caregivers will only continue to grow, as the number of people with the disease in the U.S. is estimated to reach 14 million by 2050, according to research conducted by the Alzheimer’s Association. It is estimated that family caregivers of people with Alzheimer’s and dementia provided 18.4 billion hours of unpaid assistance in 2017 alone, a contribution valued at $232.1 billion nationally.
To draw attention to the experiences of patients and family caregivers and to spark bold new solutions for the world’s brain health crisis, AARP initiated a conversation during national Alzheimer’s & Brain Awareness Month. On June 25, AARP hosted an event in New York City featuring a group of experts in the medical, business and technology sectors as well as notable celebrity guests, including acclaimed journalist and author Katie Couric as the event emcee, and award-winning actress Jane Krakowski, who shared her own personal experience as a dementia caregiver. Following remarks by Jenkins, the experts and advocates who spoke at the event included Kate Bingham, the SV managing partner of the Dementia Discovery Fund; UnitedHealthcare’s Chief Medical Officer Dr. Peter Pronovost; and technology and personal finance reporter and expert, Natali Morris. Key learnings, tips and content for family caregivers are shared at www.AARP.org/DisruptDementia.
Family and Caregivers
For many, the battle isn’t professional but personal.
“After my family’s personal experience with dementia, I echo AARP’s concerns about this looming health crisis and I applaud the campaign to Disrupt Dementia,” said Jane Krakowski. “The chance to stop the impact of this heartbreaking disease could be nothing short of life-changing for so many people, and AARP’s mission to spread education and understanding of the disease has the power to be truly transformative.”
While research is underway to find treatments and a cure, AARP offers resources and tools on its website for the 16.1 million Americans who care for people living with dementia. The organization continuously works to improve the communities in which people with dementia and their caregivers live, by working with leaders and local governments across the U.S. to adopt “age-friendly” guidelines and develop resources. AARP also founded the Global Council on Brain Health to help people strengthen their brain health and minimize their risk of dementia. And AARP is part of the National Advisory Council for Dementia Friendly America.
To access information available to family caregivers, visit: https://www.aarp.org/caregiving/care-guides/dementia. To join the conversation on social media, use AARP’s official campaign hashtag, #DisruptDementia. AARP also urges people to share memories of loved ones impacted by dementia or Alzheimer’s on Twitter and Instagram at #HowIRemember.