World Alzheimer’s Day 2019 provides an opportunity to reflect on the history of this disease and the role of advocacy groups in addressing an important public health problem.
Alzheimer’s disease was formally described by Alois Alzheimer in 19061, but for decades thereafter it was virtually unknown to the public, and many physicians considered loss of cognitive function an unavoidable consequence of aging. Robert Katzman’s 1976 editorial in the Archives of Neurology is widely credited with bringing popular attention to the need for a unifying concept for Alzheimer’s disease and senile dementia and highlighting Alzheimer’s as a major public health issue.2
Katzman’s article can be viewed as the spark that ignited the Alzheimer’s advocacy flame. Whereas before only a few local support groups existed to provide psychosocial assistance to people with Alzheimer’s and their families, the piece created the urgency to unite in a fight against a common enemy. In 1979, Jerome H. Stone (caregiver to his wife, Evelyn) and members of several local support groups met with the National Institute on Aging of the US Federal Government to propose the creation of a national nonprofit to augment and stimulate Federal efforts on Alzheimer’s. This resulted in the birth of the Alzheimer’s Association.1,3
In the nearly 40 years since, the evolution of Alzheimer’s advocacy has been nothing short of remarkable. In the United States alone, dozens of advocacy groups (local, regional, and national) have formed to address the multifaceted needs of their constituents. Consider just a few examples:
Advocacy groups like the Alzheimer’s Association, LEAD Coalition, and others have been instrumental in lobbying for and subsequently securing 2.3 billion dollars for the NIH’s Alzheimer’s research in 2019.4 In 20155, the LEAD Coalition initiated and led advocacy efforts that culminated in the first ever “National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers,” led by the National Institutes of Health (NIH) in 2017. The summit’s final report6 contained nearly 60 prioritized research recommendations to improve quality of life for people living with dementia, their families, and other caregivers. NIH has since committed to organize dementia care research summits every three years, with the next summit coming in March, 2020.
Disease awareness and education:
While Alzheimer’s may seem like a household name, it is estimated that up to 50% of people with Alzheimer’s disease don’t receive a diagnosis7, and for those who are diagnosed, the time from one’s first symptoms to a diagnosis is still woefully high – with one study reporting a delay of nearly three years8. The Alzheimer’s Foundation of America’s National Memory Screening Program provides free screenings at health fairs, senior centers, and clinics, providing people an opportunity to be proactive about their brain health.
Advocacy groups are also working to address health disparities in Alzheimer’s disease, providing tailored information and support to meet the needs of their constituents. UsAgainstAlzheimer’s has created individual Alzheimer’s networks for African Americans, Latinos, women, and veterans. AfricanAmericansAgainstAlzheimers have put on a play, Forget Me Not, at venues across the country to raise awareness about the increased prevalence of Alzheimer’s in the African American community, signs and symptoms, and the importance of participating in clinical research9.
Support for people living with Alzheimer’s and their loved ones:
The Alzheimer’s Foundation of America and the Alzheimer’s Association both offer toll-free support lines, with the former providing access to licensed social workers, and the latter providing a 24/7, year-round phone line, accessible in over 200 languages and staffed by masters-level care consultants10,11. Regional groups often offer activities (from exercise to art) for people with Alzheimer’s, as well as caregiver respite services. BrightFocus Foundation has developed an Alzheimer’s “toolkit” that provides practical information for people with dementia and their loved ones to better understand Alzheimer’s and how to manage it.
Advocacy groups have been instrumental in moving the research needle—both by funding (and even partnering) on research studies, and by helping drive clinical trial patient recruitment. The Alzheimer’s Association and BrightFocus Foundation are deeply involved in providing grants and funding for ongoing research – each organization has awarded over a hundred million dollars to fund Alzheimer’s research programs; both the Alzheimer’s Drug Discovery Foundation and Cure Alzheimer’s Fund are close to hitting that milestone.12,13,14,15 Of recent note, the Alzheimer’s Association funded SPRINT MIND 2.0, evaluating the impact of blood pressure treatment on reducing the risk of dementia. The original study, SPRINT MIND, had demonstrated that treatments to reduce blood pressure could significantly reduce the incidence of mild cognitive impairment, a frequent precursor of dementia.16
Patient advocacy groups have also begun to serve more than just the “patient.” Many organizations are now creating healthcare-provider-focused information and education and are also facilitating interactions with the scientific community. Groups like the Alzheimer’s Association have partnered with professional organizations to create and disseminate diagnostic and management tools, as well as materials to be given to people and their families throughout the course of treatment. The Gerontological Society of America engaged physicians and advocates to develop the “KAER Toolkit: 4-Step Process to Detecting Cognitive Impairment and Earlier Diagnosis of Dementia” which compiled tools and resources to help health care providers talk about cognition, assess and evaluate for cognitive impairment and/or dementia, and appropriately refer people to community resources. The Alzheimer’s Foundation of America created its own training program for professionals—“AFA Partners in Care.”
Consider also, the magnitude of conferences organized by these groups. In 2019, Alzheimer’s Disease International held its 33rd conference, the Alzheimer’s Drug Discovery Foundation held its 19th meeting on drug discovery, and the Alzheimer’s Association’s AAIC is on its 11th year, hosting anywhere from 5,000-7,000 people—including industry, healthcare professionals, researchers, and patients.
While Alzheimer’s research still has a long way to go, progress continues and much of this progress is the result of both pressure and support from patient advocacy groups and their motivated members.
Director -Client Services