AlzheimerSupport: (AS) What is your background and qualifications?
David Troxel: (DT) I have a masters degree in Public Health from what used to be called Rutgers Medical School and now it is UMDNJ (University of Medicine and Dentistry of New Jersey – Robert Wood Johnson Medical School), and I’ve worked in the field of dementia and Alzheimer’s since 1985.
AS: How did you become interested in Alzheimer’s?
DT: It was actually kind of an accident. I’d finished the degree program at UMDNJ and back in the mid ‘80s it was a tough economy and jobs were hard to get. I had a friend at the University of Kentucky Alzheimer’s Research Center (then one of just 10 federally funded centers) who contacted me and offered me a job. I didn’t even know what Alzheimer’s disease was because back then there was so little training in aging and geriatrics in the professional training programs. They hired me despite the fact that I didn’t know what Alzheimer’s was and, in a way, I think it was a tremendous benefit not to know exactly what I was doing because when I got to Kentucky I was asked, along with several other key people, to set up a nationwide network of services for caregivers and patients. Many people said, “Oh, you can’t do that, this won’t work, that won’t work.” My colleagues, particularly this woman Virginia Bell and myself, had the view that we could try some different things. We went and successfully set up a lot of support groups, day-centers and family education programs. Many of those programs went on to become national models; back then we could just invent whatever we wanted since nobody really knew what the right answers were.
AS: There weren’t any national or statewide programs established?
DT: In the 1980s, early ‘80s and late ‘70s there was a lot of research on caregivers, a lot of information about the plight of the wives, the husbands, the daughters, daughter-in-laws but there wasn’t much about the patient. We didn’t really know how to help these people and it was very much a time of great pessimism. There wasn’t a lot of public awareness about Alzheimer’s. A caregiver would go to the doctor and the doctor would say, “Oh, what’s wrong with you? He’s just old, you know, just old age. Don’t worry about it.” It was a time when there wasn’t a lot available and our first real task was to educate the community and even a lot of doctors about a proper work-up and evaluation. We’ve come a long way; we’ve come farther than I ever dreamed we would in the research field and in our ability to offer family services. This is a time where we have a lot of options for patients and families and can really do some things to bring out the best in the patient and help the families.
AS: What inspired you to write The Best Friends Approach to Alzheimer’s Care?
DT: The book, written by myself and Virginia Bell, really came from a strong desire we had to get the message out that we felt there was still a lot you can do even when a person has Alzheimer’s to help improve their quality of life the best you can. The inspiration for the book was that we had both done a lot of work in adult day-care centers. You would go into these adult day-care centers (which are all around the country and the world now) expecting to find doom and gloom, but actually you would walk in and you would see a lot of people gathered together, having a good time; laughing, sharing coffee, looking at the newspapers, doing activities. It really seemed almost like a group of friends being together. Virginia Bell and I realized that the social/behavioral approaches really reach people. If you can surround a person with dementia with feelings of security, a joyful atmosphere, it brings out the best in everybody. What a person with Alzheimer’s disease needs is somebody to be a friend to them. These elements of friendship: meaningful activities, safety, security, humor, could really be a clue to how to relate to people with the disease. The book was one of the first books, if not the first book, to get out of the doom and gloom mood. The very first reader letter we got was from a woman who had Alzheimer’s. She read the book and said it gave her a better sense of where she was and what she could still accomplish. It was very gratifying, very surprising in a way that that was the first comment we received. People can read this book without feeling despair which, unfortunately, I think some of the other books in the field are just so overwhelming to caregivers or the patient that they can’t read it.
AS: What do you hope people will get out of reading The Best Friends Approach to Alzheimer’s Care?
DT: A couple of things, I think the book has just many many practical ideas of sort of ‘dos’ and ‘don’ts’ for connecting with people with Alzheimer’s and helping them. Even simple things like “don’t argue.” It’s a big one if you can teach a husband not to argue with his wife who has Alzheimer’s or vice versa, I mean that’s an enormous achievement. I think in the book there’s a sense that caregivers should be a best friend to themselves, to take care of themselves, and to use services - not to wait too long to use services. The book definitely wants to connect people with the National Alzheimer’s Association network. I’m also proud that we actually have stories about real people with the disease. We got permission from about 40 or 50 families and individuals to use their real names in the book. This is the first time it had ever been done, that you would have real names, real cities, and nobody turned us down, I was amazed. And they tell their story about what it’s like to have this disease.
AS: The patients?
DT: Patients, yes. In other words, in the past books would either do a composite or maybe say David S. of whatever city. We actually interviewed people with the disease and their caregivers. We told real true-life stories as to how families cope with this disease. I think people learn through stories. It’s one thing to give 20 generic principles but if you can give some anecdotes it’s beneficial. We’ve had some really positive feedback about that.
AS: What advice do you think is the most important for caregivers?
DT: I would say to certainly inform yourself the best you can about the disease, be patient with yourself and your other family members, recognize that some people need time to adjust to what’s happening. Maintain an optimism or hope, our research is doing tremendous things. We’re learning so much more about the disease that we may soon learn ways to slow it down or even prevent it, if we can’t be hopeful for ourselves maybe for our children and grandchildren. On a different note, as a caregiver think about your future; where do you want to be in five or 10 years because if your loved one does have Alzheimer’s, they will eventually die from the disease. What do you want your life to be and your relationship with your siblings and family? Remember not to cut yourself off from the world, to try to imagine a time when you’ll only be responsible for leading your life. Have a sense of pride that you’ve been able to give such loving care over a period of time to your loved one.