of more than 11,000 people invested in our brain health. We are people with Alzheimer’s disease or other dementias, family caregivers and people interested in maximizing our cognitive health. We use our experience as data to inform government, policy, the medical and research industries, and society about What Matters Most to the Alzheimer’s Community.
We call it The Science Of US.
Published in Gerontology and Geriatric Medicine, via Sage Publishing: “Caring for Dementia Caregivers: Understanding Caregiver Stress During the COVID-19 Pandemic”
Cited in public comments or presentations to the FDA, in support of Aduhelm and Rexulti treatment availability
Utilized by the Brain Health Academy to educate healthcare professionals on dementia risk factors
Sub-awardee of a three-year grant from the National Institute on Aging working with Mayo Clinic for studying lucidity in dementia
Partnering on a survey of the value of treatments in a consortium initiated by Tufts University
Projects including AD-PACE and Biogen
Online surveys: Twice a month you will receive an email from A-LIST Founder Meryl Comer inviting you to answer a short survey.
Surveys ask about the issues we care about: Past survey topics include challenges for caregivers; dementia symptoms, such as agitation; managing the COVID-19 pandemic; and traveling with dementia.
We use anonymous survey results to make life better for our community: We make sure policy makers, researchers, health care providers, drug developers, insurers, and others who serve our community understand and consider our insights and preferences.
Get started! CLICK HERE to add your name, then check “I Agree” to sign our consent form that explains the A-LIST study. Then take our first online survey: the Pulse of the Community.
"There is strength in the number of caregivers willing to devote their daily lives to improving the lives of their loved ones suffering from Alzheimer’s. The A-LIST nurtures that strength by bringing us together to facilitate a path to a cure, and centering on the needs of both culturally diverse patients and caregivers." - A-LIST Caregiver
We are so pleased to share our A-LIST article, “Caring for Dementia Caregivers: Understanding Caregiver Stress During the COVID-19 Pandemic,” published in Gerontology and Geriatric Medicine, via Sage Publishing. You can also read it HERE.
This data was gathered in eight longitudinal surveys conducted over the course of the COVID-19 pandemic.
Thank you for raising your voice, sharing your experiences and contributing to the growing wealth of knowledge about the Alzheimer’s experience.
Barron's: The Other Pandemic: What to Do About the Coming Alzheimer’s Crisis
A-LIST Pulse of the Community, Volume 15, July 2023: Connecting the Alzheimer's Community as Partners in Research
A-LIST Pulse of the Community, Volume 14, December 2022: Lucidity in Dementia
A-LIST Pulse of the Community, Volume 13, November 2022: Latino Caregiver Study, Alzheimer's Disparities
Our vision is that rigorous data on what matters most to people living with dementia and care partners – the science of us – drives policy, research, drug development and access decisions affecting their lives. This program, which includes the A-LIST and AD PACE, develops patient and caregiver insights and experience data to inform advocacy, research, regulatory approvals, access determinations, care and services. This work will offer new knowledge to the field generally and advance drug development.
