Weathering the Journey After an Alzheimer's Diagnosis

When Carole Rowe's husband began showing signs that he may be developing Alzheimer's disease, they insisted on a referral for further testing. That decision, she says, has made all the difference. Here Carole, a nurse by profession as well as a caregiver to her husband (whose diagnosis was confirmed), shares her thoughts and advice on weathering the journey that comes after such a diagnosis.

How long have you had a connection with the Memory and Aging Program?

Late summer or early fall of 2015, there was an article that appeared on the front page of the Sunday Providence Journal. The article featured Dr. Salloway and explained his interest and involvement in research to combat Alzheimer's. At the time, my husband David was starting to notice some signs that maybe he might be affected by this disease. His mother had Alzheimer's and we watched her go through some very difficult periods in her life. We called the program to see what we needed to do to become involved.

As a study partner - and wife - to a clinical study participant, what has the experience of being part of the research been like for you and your family?

For us, Butler's Memory and Aging Program has been a very enlightening experience. We strongly suspected David had Alzheimer's, but found some frustration in trying to get our family practitioner on board. He was telling us he thought David was having some normal aging issues and don't be too worried. As his wife and an RN, I was not accepting this respsone, and strongly pushed for a referral to Dr. Salloway. He decided that I was not going to accept anything less, so we got our referral. What followed was some intense testing, both cognitive and physical, and imaging studies. This confirmed our fear that this was the diagnosis. The experience has been amazing in many ways.

First and foremost, having Dr. Salloway has a ph ysician assures us that we have the best treatment and guidance available. Not everyone is this fortunate. Knowing that we would have all the latest and best treatments, we chose to enroll in the Biogen trial. This too involved Dr. Salloway's insistence that David should be involved. Nothing is easy, but we were lucky to have him in our corner.

Have there been any surprises for you about the clinical trial experience?

The staff of the program is incredible. Everyone has a job to do and they all take it very seriously. Their professionalism shows in everything they do. Their explanations have made the process very smooth. Therefore, no surprises.

What advice would you give to families if a loved one wanted to participate in a clinical trial?

If I were to give any advice to families, it would be that this is a fight worth fighting. Most likely we will not benefit as much as future generations, but Alzheimer's is a devastating disease that we need to do everything we can to  help our kids and grandkids avoid the pain and suffering it brings.

What would you like people to know about Alzheimer's as it pertains to your family life and your outlook on the future?

Every day of this journey brings some added concerns about how we will be strong enought to accept every new challenge. I pray that I will continue to do all I can. There are bumps in the road, and I hope my "shock absorbers" hold up! This disease robs the patient of so much, but we all must fight to help future generations have better treatments earlier.