Alzheimer's A Growing Concern Among LGBTs

A decade ago Lou Bordisso found himself lost one morning in the downtown San Francisco office complex where he worked. He walked endlessly down corridors and took fruitless rides on the elevator desperate to find the room where his weekly Monday meetings were held.

"It was in the other twin tower and I just couldn't find it," recalled Bordisso, 61, a gay man who lives in Vallejo with his husband.

One day he found himself trapped in Macy's, unable to figure out how to exit the department store. He would forget passcodes he previously recalled with ease.

As a case manager he routinely was called upon to testify in court. But on the stand he would lose his train of thought midsentence. A psychiatrist treated him for cognitive impairments, but his symptoms continued to worsen.

His vision deteriorated to the point where he couldn't judge spatial distances. One day he drove his car into a pole in a parking lot, ending his time behind the wheel.

Eventually a neurologist diagnosed Bordisso with early onset Alzheimer's disease as well as Lewy body dementia. Even simple day-to-day tasks can present difficulties for him.

"I can't remember washing my hair or not," Bordisso said. "I devised a system where I put the shampoo bottle on the other side of the shower after I use it so I don't wash my hair three or four times."

As the number of LGBT older adults continues to grow in tandem with the boom in America's senior population, so too is concern about the increasing number of LGBT seniors diagnosed with forms of dementia, particularly Alzheimer's.

In San Francisco alone health officials estimate that the number of older residents living with Alzheimer's will be 26,774 by 2020, with approximately 3,213 LGBT seniors living with the disease. Another 2,142 LGBT seniors aged 65 and older are expected to be living with other diseases that cause dementia.

According to a report commissioned in 2013 by the city's LGBT Aging Policy Task Force, the number of LGBT people living with all forms of dementia in San Francisco will number 6,964 by 2030.

"This will be a major challenge to us as a nation as we age and live longer if we don't get our arms around this sooner than later," said gay state Senator Mark Leno (D-San Francisco), whose family spent 10 years caring for his mother after she was diagnosed with Alzheimer's. "She was very fortunate though, as horrible, horrible as the disease was. She turned into a ball of love in the final months, I am certain because of the love and support she was surrounded by."

Leno was addressing a recent daylong training the Northern California and Northern Nevada Chapter of the Alzheimer's Association co-sponsored in San Francisco to educate health care providers, such as nurses, physician's assistants, and family caregivers, about the specific issues LGBT patients with dementia confront.

Dementia refers to a person's "decline in mental functions" to the point where they need help with "day-to-day functions," while Alzheimer's disease is the "most common cause" of their cognitive impairments, explained Dr. Geoffrey A. Kerchner, who recently left Stanford University, where he oversaw research into memory disorders and Alzheimer's, to become the associate medical director at Genentech.

There are some tests that can diagnose Alzheimer's, but there currently is no cure, stressed Kerchner. The most common symptoms are memory loss, visual impairment, and social isolation, he added.

"Within the next 10 years we are going to have at least the first therapy that attacks the underlying reasons for Alzheimer's," he said. "We will have drugs that work and know what stage of the disease we need to start treating."

Dementia is a growing national concern, as evidenced in the findings of a federally financed multiyear study on the aging needs of LGBT seniors that has enrolled 2,400 people so far. Seven percent of those 50 years of age and older self reported having some cognitive impairment, according to the preliminary findings. One percent of people in the 50 to 79 years old age group, and another 1 percent in the 80 and older age group, reported being told about the need for Alzheimer's and dementia care.

The lead researcher of the National Health, Aging and Sexuality Study: Caring and Aging with Pride Over Time is Karen I. Fredriksen-Goldsen, Ph.D. She is a professor and the director of the Healthy Generations Hartford Center of Excellence at the University of Washington.

Fredriksen-Goldsen, a lesbian, will be tracking the LGBT study participants over the next five years and hopes to receive funding to continue the study for 30 years.

"This is the first longitudinal study of aging LGBT baby boomers," she said while discussing her findings so far at the February 20 training, billed as the first to focus specifically on LGBT dementia issues.

One finding she pointed to in her study is that 40 percent of the people who reported having severe cognitive impairment rely on an informal caregiver, such as their partner or a friend. Many older LGBTs are part of what Fredriksen-Goldsen refers to as "the silent generation," meaning they were not out of the closet for most of their lifetimes and often don't have relatives, like a sibling or children, they can rely on to care for them.

"Sometimes their family doesn't know about a person's sexual orientation until they are facing cognitive impairments or dementia," she noted.

A major concern for health care providers is the large number of LGBT seniors who are already socially isolated and may be reluctant to seek out services due to past experiences with discrimination in a health care setting. If they are living with dementia, they may not be accessing the care they need.

"People living alone and having memory problems, I worry about the most," said David W. Coon, Ph.D., the associate vice provost and a professor at Arizona State University's College of Nursing and Health Innovation.

For the partners, friends, and family members who serve as caregivers for people living with dementia, they suffer their own physical and emotional tolls. Nicky Pyne, 71, said caring for his partner, who had Chronic Obstructive Pulmonary Disease and suffered from memory lapses, "was the most difficult thing. I had to give up who I was."

Even after his partner's family hired a caregiver to help out, Pyne said he still suffered from guilt whenever he would leave their house.

"The caregivers told me to go to the movies. I would sit at a restaurant crying feeling helpless because he wasn't there with me," said Pyne.

For more information about the services offered by the Alzheimer's Association, visit http://www.alz.org/norcal/