I told Judy I was going to do a blog on some recent research on caregiving and she suggested that I write instead about how I got involved in doing research on family caregivers. This is the area of work that Judy and I are best known for, and so here is the beginning, in three parts.
It Began on the South Side of Chicago
My graduate school mentor at the University of Chicago was the late Robert L. Kahn, one of the pioneers in the clinical psychology of aging. Unlike most experts at that time, Bob believed that older people could respond positively to treatment, even those suffering from dementia. He would often say that how we look at a problem determines whether or not we can see a solution. If we think of dementia as only a medical problem that has no effective treatment, then we will conclude that there is nothing we can do. But if we view dementia as a bio-psycho-social phenomenon, we can address treatable components of the psychological and social aspects of dementia. And that means helping family members who are providing care. We can help them figure out how to best provide care, and make sure they get regular breaks so that they can continue providing care at home, despite high levels of stress. Care at home when it’s possible is the key—that’s what people want and the alternatives are often (but not always) not very good. But home care is only possible if the family gets support.
A Small Study on Caregivers’ Burden
After I took a position at University of Southern California in 1975, two other events happened that influenced my work with caregivers. I had the opportunity to run a small demonstration clinic, the Andrus Older Adult Center, where we trained graduate students and provided clinical services for older adults and their families. We were located off-campus so that we could reach out to the community. This was the late 1970s and many of the people who came to us were family members who were caring for someone with dementia. They would often tell us that they had sought help from other places and were told there was nothing that could be done. The doctor would say, “It’s chronic brain syndrome,” the term used at the time, “There’s nothing you can do. You might as well put him in a nursing home.” Social services were also reluctant to help. When caregivers came to us, we talked with them and helped them with strategies for managing the day-to-day challenges they were facing. And with two graduate students, Karen Reever and Julie Bach, I did a study of caregiver burden. Although this was a small-scale and unsophisticated study by today’s standards, it established a fundamental point, that caregivers’ subjective feelings of burden were not determined by the severity of dementia symptoms, but by how caregivers viewed and adapted to those symptoms and to the help they received from other family members. This suggested that if we build coping and family resources we could lower burden.
Unintended Consequences of Training Memory
About the same time, I applied for a grant to the National Institute of Mental Health to study the effects of memory training for older people who did not have dementia. This was the first time Judy and I worked together. The reviewers liked the study but thought we needed to add another component, memory training for people with dementia. After all, memory loss is the main problem in dementia, so it made sense to see if training might help reduce those problems. So we developed a plan for memory training, but we felt that for training to work, we needed to include the family caregivers of the persons with dementia in the groups so they could help the person to implement the strategies at home. And it worked, sort of. The training improved memory a bit, but not to what it was before the disease, and this brought home to the caregivers how limited their relative was. As a result, their depression increased during the several weeks of training. But they told us something important. They said the training was not helpful to them, but they really liked getting together with each other. So we decided to offer an ongoing support group for caregivers of persons with dementia. It was the first or second group in Los Angeles—depending on who you ask---and helped build interest in the needs of family caregivers.
Where This Led
Running the support group led us to think about other things caregivers might need. One day Judy and Karen were talking about the burden study and speculated that, since family support seemed helpful in lowering burden, perhaps holding a family meeting could directly build support. So they began holding family meetings with clients at the clinic, and they did work. The meetings cleared up misconceptions about dementia and misunderstandings among family members. At the end, most of the families came up with plans to help the main caregiver and were able to follow through on these plans.
We then did a test of the interventions we had developed, problem-solving strategies for managing dementia, family meetings and support groups. The results were encouraging. Considerable research has been done by many other groups throughout the US and Europe since then that has confirmed the value of these approaches. As Bob Kahn proposed many years ago, we can help persons with dementia by helping caregivers. And we can help caregivers so the stress does not become overwhelming. We’ll have a lot more to say about that in future blogs.
By the way, the clinic still exists, led ably by Dr. Bob Knight. It is now called the Tingstad Older Adult Center, named for a benefactor, Hortense Tingstad, who was a member of that first support group. You can find it at: http://gero.usc.edu/knightlab/TOACC/about.shtml