Transforming Health Care through Innovative and Impactful Research

I spent 18 years as an Alzheimer's caregiver and the last 5 as an advocate. My 81-year-old dad began to show symptoms of dementia in 1994, the same year that former President Ronald Reagan published his now famous letter to the American people announcing his diagnosis of Alzheimer's disease. Three years later in 1997, at age 57, my husband was diagnosed with mild cognitive impairment. It can involve problems with memory, language, thinking and judgment, and behaviors that are greater than normal age-related changes and may signal, as it did with us, the beginning of a heartbreaking journey for which most are ill prepared. My dad died in 2001 and my husband in 2012.

Like so many caregivers, for so many years, I was silent; I strove to protect my husband's dignity and say nothing that would cause him to lose hope or become despondent. But all the while the door closed tighter and tighter and we became more and more isolated. For 12 years I watched over and cared daily for my husband, alone and without a break. My story is not unique.

In early 2010, I began to speak out. I went to town halls and on advocacy trips to the state capital and organized a team for our local charitable walk. I consented to an interview with the Knoxville News Sentinel and spoke candidly with the journalist who came to our home. Our story ran locally and was picked up across the state.

I also began a campaign for an Alzheimer's disease semipostal stamp that would raise money for research. I joined together with fellow advocates to promote the call to create a semipostal stamp to draw public attention to the enormity of this health crisis and, as importantly, to help raise much needed funds for medical research through the voluntary purchase of postage stamps.

I truly believe that it is through individual effort that we can make a collective difference. My husband participated in clinical trials and, at death, donated his brain for autopsy. I've participated in walks and fundraisers and in a clinical study for cognitively healthy adults, and I've joined the Alzheimer's Prevention Initiative's Registry. I've written to every member of Congress, asking them to make the vision of the National Alzheimer's Project Act a reality, to dedicate sufficient funding to advance research, and to cosponsor the Health Outcomes, Planning, and Education (HOPE) for Alzheimer's Act and the Alzheimer's disease semipostal.

With 16 other caregivers and their loved ones, I participated in an awareness project to create the video "Alzheimer's/Dementia Knows No Borders." I served as convener to the Clergy Against Alzheimer's network and co-edited a book of interfaith meditations, "Seasons of Caring: Meditations for Alzheimer's and Dementia Caregivers."

I am honored to be a board member of B.A.B.E.S. (Beating Alzheimer's by Embracing Science) and a founding member of three national networks working to demand the urgency and commitment needed by our political, business, and civic leaders to achieve the bold but doable goal of ending Alzheimer's disease by 2020.

It is because of my personal experiences that I am committed to doing all that I can to stop this disease. It is why I was so pleased to be invited to participate as a consumer reviewer, alongside prominent scientists, in the evaluation of research applications submitted to the Peer Reviewed Alzheimer's Research Program sponsored by the Department of Defense. Consumer reviewers have the honor and responsibility of representing the collective view of those who are living with Alzheimer's disease - patients, caregivers, and family members. In this capacity, we were asked to review research proposals aimed at better understanding the association between traumatic brain injury (TBI) and Alzheimer's disease, and to reduce the burden on caregivers and individuals affected by TBI or Alzheimer's disease-related symptoms.

While the assignment was challenging, it was also deeply rewarding. The dedication with which the reviewers read and submitted their comments and the ensuing dialogue at the meeting was inspiring and hopeful as it was clear to me that each individual involved in the process shared my personal passion and desire to contribute to a legacy that does, indeed, help move us closer to a cure! I am thankful to have had the opportunity to lend my voice to this effort.