Brian Van Buren is a retired flight attendant who resides in Charlotte, N.C. He lives alone and has a busy schedule that includes regular appointments with a therapist and church on Sundays. He makes frequent use of his digital assistants Alexa and Siri to help him keep track of things like feeding his dog and where he put his keys. And he spends time on a cause that is near to his heart: advocating for people with dementia. Van Buren’s grandmother and mother died from Alzheimer’s disease, the most common form of dementia. Van Buren himself was diagnosed with early onset Alzheimer’s in 2015. He decided to become an advocate when he learned that Black Americans like himself are two times more likely to develop dementia than whites. “I have a really good quality of life. It’s not much different from when I was diagnosed. Actually, it’s better in many ways,” says Van Buren, 70. “It’s given me focus and purpose. Those things are important to me now.”
Van Buren “is what life can look like living proactively with dementia,” says Karen Love, Executive Director of Dementia Action Alliance (DAA), a nonprofit dedicated to improving the lives of people living with dementia. More than 6 million Americans are living with Alzheimer’s disease, a number that is projected to more than double to 13 million by 2050 as the U.S. population ages. People 65 and older who are diagnosed with Alzheimer’s survive an average of four to eight years but may live as long as 20 years, according to the Alzheimer’s Association. Nearly 500,000 others under 65 years old are living with early-onset forms of dementia.
Under the 1990 Americans with Disabilities Act, anyone with a “physical or mental impairment that limits a major life activity” qualifies as having a disability and a right to “reasonable accommodations.” But dementia, which also affects language skills, visual perception and motor control, is often treated more like a terminal condition than a disability, say advocates for people with dementia. That’s one of the biggest challenges facing people trying to live fulfilling lives amid cognitive decline, they add. “Unfortunately, there’s too much biomedical thinking that ignores the psychosocial and spiritual aspect of living with dementia,” says Love.
Unfortunately, there’s too much biomedical thinking that ignores the psychosocial and spiritual aspect of living with dementiaKaren Love, Executive Director of Dementia Action Alliance
Stigma is another major hurdle, and is often present among family members, friends and acquaintances as well as the general public. Advocates say it is also rife in the medical community. Many healthcare providers believe there is no therapeutic benefit to early diagnosis of dementia and that it may even have harmful effects on the person, explains Elizabeth Gould, Co-director of the National Alzheimer’s and Dementia Resource Center (NADRC) in North Carolina. This so-called therapeutic nihilism makes many family doctors and even some neurologists reluctant to diagnose dementia. When they do deliver the diagnosis, some physicians avoid speaking directly with their patients, addressing their comments to a relative or care giver instead.
Laurie Scherrer, who was diagnosed with early-onset Alzheimer’s in 2013, describes her neurologist’s treatment as “inhumane” and believes it contributed to her clinical depression in the aftermath of her diagnosis. “The biggest challenge is the stigma and negativity,” she says. “If your doctor tells you you’re dying, that’s what you believe.” Eight years after diagnosis, Scherrer is an active advocate for DAA, where she sits on the Board of Directors. She also mentors others with dementia, does public speaking and organizes discussion groups. (See related article).
The medical community’s pessimistic attitudes and behaviors contribute to several unhelpful outcomes, says Sherrie All, PhD, author of “The Neuroscience of Memory.” They discourage people from seeking an early diagnosis when they have mild impairment and can be helped by psychological, medical and behavioral interventions. “It’s still the case that most people are waiting to the moderate stage until they’re diagnosed,” says All, the founder and owner of the Chicago Center for Cognitive Wellness, which offers neuropsychology assessment, psychotherapy and cognitive rehabilitation services to people with conditions including dementia, traumatic brain injury and stroke. “People need a good medical workup so they can control their blood pressure and sugar levels. They need to hold on to every single brain cell they can. We help them do that by intervening through increased stimulation, encouraging them to keep socially and physically active, and treating depression and anxiety. Physical activity alone is huge.”
The biggest challenge is the stigma and negativity. If your doctor tells you you’re dying, that’s what you believe.Laurie Scherrer, Board of Directors for Dementia Action Alliance
Compounding the issues around stigma is the fact that few home- and community-based services (HCBS) specifically target people with dementia. People with early-onset dementia fall in a service gap because they aren’t old enough to qualify for Medicare-related services and they often have too much income or too many assets to qualify for Medicaid, program that funds home- and community-based services at the state level. Those over 60 with dementia can access the same services that other seniors can under the 1965 Older Americans Act but those are usually not tailored to them or delivered by home health aides trained in working with people with dementia.
For example, transportation services are available for older adults in many U.S. communities. But to access those, a person with dementia might need help getting onto a van or become agitated or forget where they are going. A van driver who has been trained to watch out for those signs can be a huge asset in those situations, says Heather Menne, PhD, Senior Health Policy Researcher at RTI International, a non-profit global research institute. Likewise, having home health aides who are trained to read non-verbal behavioral signals about someone’s likes or dislikes can make a big difference in the behavior and quality of life for someone with dementia. “It’s really important we have those services available because 70% of people with dementia are living in the community, not in a nursing home,” adds Menne.
The U.S. government is well aware of the growing needs of Americans with dementia and their care partners. The Administration for Community Living (ACL), part of the U.S. Department of Health and Human Services, began funding grants through the Alzheimer’s Disease Programs Initiative (ADPI) in 2018. The $20 million pool is targeted at states and communities interested in developing “dementia-capability.” To be deemed dementia-capable, a community should be skilled at identifying people with possible dementia, recognize what kinds of services are needed and refer the individual with dementia and their care partners to agencies or people who are able to provide those services in a person-centered manner.
It’s really important we have those services available because 70% of people with dementia are living in the community, not in a nursing home.Heather Menne PhD, Senior Health Policy Researcher at RTI International
Most of the dozen or so grants from ADPI in 2020 were targeted at identifying people with undiagnosed dementia who live alone or those with intellectual and developmental disabilities who are at high risk of developing dementia as they age. Numerous grants were specific to certain ethnic groups, funding the creation of bilingual screening tools and outreach materials in languages such as Spanish, Korean, Japanese and Farsi. Some grants focused on the creation of person-centered care plans for people with dementia or the training of “dementia care navigators.” Others focused on the needs of care partners of people with dementia in terms of education or time off. Few focused on providing direct in-home services for people with dementia. An exception was a grant to Arizona that pays for people living alone with dementia to receive home care and other supportive services.
As part of the overall effort to improve the delivery of care for people receiving HCBS, the Center for Rehabilitation Outcomes Research received a 2020 grant from ACL to develop and test person-centered outcome measures for people with disabilities, including dementia, who are receiving home- and community-based services. The larger goal is to make sure the services provide person-centered care and allow people to live as independently as possible. “Our work on outcome measures for all HCBS recipients, including those with dementia, will allow assessment of the services they receive and assure that outcomes are reflective of recipients’ goals and preferences. It reflects our values as a society that we want individuals to live happy and productive lives,” says CROR Director Allen Heinemann, PhD. To do that, the project team meets regularly with various HCBS experts and thought leaders, including people with disabilities, to learn directly from them. Community participation is essential, Heinemann notes, because “‘One size fits all’ doesn’t fit anyone very well.”