Marcy Adelman, Ph.D., is a psychologist in private practice, founding member of the San Francisco LGBT Dementia Care Oversight Committee, a former member of the San Francisco LGBT Aging Policy Task Force, and co-founder and current Board member of Openhouse, an LGBT senior housing and service organization in San Francisco, California.
Jim and Fred have been a couple for thirty-three years. They had been together for fifteen years, when Fred’s personality began to change. But it was another four years before they got the diagnosis: Alzheimer’s.
For Jim, the news was doubly challenging. He had no idea what to do about the disease. And he didn’t feel confident that service providers would understand their relationship. Jim was really concerned about how doctors, in-home care providers, and others would react to the couple being gay. Would he not be allowed to remain as Fred’s chief caregiver? Because they weren’t legally married, and still are not, would Jim be prevented from making day-to-day and life-and-death decisions? Might he even be stopped from being able to see his partner?
The American public has become very aware and afraid of Alzheimer’s. More than 5 million individuals live with it, and that number is expected to triple over the next few decades as more people are living longer (Alzheimer’s Association, 2015). Alzheimer’s is the sixth leading cause of death in the United States and remains the only leading cause of death for which there is no cure (Alzheimer’s Association, 2015).
Yet for LGBT older adults, Alzheimer’s can evoke a double stigma: living with dementia and being LGBT (Adelman, Nolan, and Haskell, 2013). As with everyone else, LGBT older adults fear losing themselves and their memories, being embarrassed or devalued, or simply being avoided. Mostly, people are frightened of becoming completely dependent upon the care of others. (more…)