Janice Moore & Ana Nelson (Text Version)

2016 PRARP Consumer Vignette

Title:  A Link between TBI and Alzheimer’s Disease?  The Advocates’ Perspective

Janice Moore and Ana Nelson, Alzheimer’s Association

Janice Moore:  My father-in-law was a Veteran. He was in the Vietnam War, and he experienced a traumatic brain injury as well. So, in around 2001, he started having Alzheimer's symptoms, and from 2001 to 2005, me and my husband took care of him. We moved him into our home. So I saw the whole progression of the disease, even to the point where I had to make the hard decision – me and my husband – to place him in a nursing home. And it was just heartbreaking for my husband and for myself; but just seeing him go through the changes that come with Alzheimer's. The families see the person that they once knew that’s no longer that person, and just trying to establish trusting relationships and helping them to remember that you’re there to help them, and who they once were; it’s very challenging every day.

Ana Nelson:  With Alzheimer's, you never know. I come from a family that has always had healthy lifestyles. Exercising and eating right, and keeping our minds alert was always very big. We have a long history of great genes. And yet, in spite of all of that, I have had three family members that have lived with vascular dementia. And now I have a family member that is living with mild cognitive impairment. He says it’s extremely frustrating to know that you’re deteriorating, to know that you have a condition that is progressive, and there’s nothing that you can do to stop that. So it brings the urgency to this kind of research; that genetics is one piece of the puzzle, but it’s not the whole story. It’s also the lifestyle factors. What is the relationship between traumatic brain injury and Alzheimer's? And what are the variables? What are the factors that come into play?

Moore:  At the VA right now, over half – it’s a 40-bay unit – over half of the Veterans that I provide care for – Vietnam War Veterans, a few World War II – so over half have had traumatic brain injuries. So the challenges with the Military piece, as well as the natural progression of the disease, it can be–it can be challenging for the caregiver.

Nelson:  It’s a good feeling to know that the Department of Defense has made funds available to scientists around the world to find out what the relationship is between traumatic brain injury and Alzheimer's Disease.

Moore:  My role with the Peer Reviewed Alzheimer's Research Program is a consumer role. We’re asked to review applications and give our input from a caregiver and a personal point of view. Sitting at the table with scientists, it is so overwhelming, it’s intimidating – it can be intimidating – but at the same time, by the end of the day, they make you feel so welcome. They make you feel like you really make a difference, and they really want to hear what you have to say.

Nelson:  We get to talk about the actual studies, and I get to ask questions on behalf of my family caregivers who want to know a little bit more about the actual studies themselves. A lot of family caregivers are hesitant to have their loved ones participate in clinical trials because their recollection of clinical trials is from what we used to hear 30 years ago, right? And there’s yet a number of opportunities for families to make a difference. I mean we’re not going to find treatments until folks volunteer for these clinical trials, so it’s important to get families involved; and by participating in these peer review sessions with the scientists, I can ask questions. And I can be candid, and I can say, “Well, what are the  consequences of this particular study if a family member were to, [a] person with dementia were to get involved in these studies?”

Moore:  I am on the committee to do the annual Alzheimer's Conference in our area that has breakout sessions on different issues with Alzheimer's research, with just things to help caregivers. So, taking back just what research is being done; just to tell them it is hope…

Nelson:  It’s a tremendous opportunity to show our Service folks that have contributed so much to, for our freedom, who are now back here; and some of them have sustained some of these traumas, and now there is support that they’re getting. So they know that they’re not alone. They have sustained these conditions for which there is no cure. And our government has made these funds available to do the research, to find out what is the link, what is it that we can do to improve the quality of life of these Service men that had given so much to our country.