By Genevieve Wanucha, UW Medicine Memory & Brain Wellness Center
For Discovery 2016, the 31st Annual Alzheimer’s Regional Conference of the Alzheimer’s Association Washington State Chapter, 625 people joined in for a great day of dementia-related education. Among many experts, UW researchers contributed talks that ranged in topic and scope—dementia that hits the frontal lobes, the heart-brain connection, the need for clinical trial participation, and efforts to address the unique needs of LGBTQ baby boomers.
The conference has a reputation for its inclusion of researchers, clinicians, and families affected by Alzheimer disease. “The Discovery conference is valuable because caregivers get to come together with professionals. Some people really crave nitty-gritty research information, and they get to ask researchers direct questions here,” said Becca Verda, Communications & Outreach Coordinator for the Alzheimer’s Association Washington Chapter and the AlzWa Blog.
Laying out the Facts on FTD
One of these information-loving care partners is Steven Z., who attended the talk by Dr. Kimiko Domoto-Reilly, neurologist at the UW Memory and Brain Wellness Center (MBWC), on frontotemporal degeneration (FTD). She brought people’s attention to the less common, but under-recognized and often misdiagnosed, cause of dementia, primarily in younger people.
Like Alzheimer disease, FTD pathology hits the areas of the brain important for cognition, but the disease has the additional downfall of affecting a person’s language, judgment, emotional insight, and self-control, leading to socially inappropriate behaviors that caregivers find difficult to manage.
“I’m so grateful that the Alzheimer’s Association and UW Medicine can offer these kinds of dedicated experts, and that FTD is now included in the greater effort to address Alzheimer disease patients and caregivers,” said Steven, who cares for this wife with FTD. “It was a lifesaver to finally receive the correct diagnosis because we then had an explanation and a path to relevant resources and care.”
Dr. Domoto-Reilly gave a thorough overview of the two types of FTD: primary progressive aphasia, which impacts language comprehension or speech, and the above-mentioned behavioral variant. She noted that language and behavioral symptoms can overlap in a patient, depending on the areas of the brain impacted. People with a family history of FTD often realize that they may carry a genetic mutation that guarantees disease onset in the future—but these families, who often agree to be part of research studies, are the key to finding a treatment or prevention, reported Dr. Domoto-Reilly. For example, therapies are now being developed for people who carry certain mutations, and such an accessible, motivated population of people, certain to develop the disease, will speed up testing and evaluation of these new molecularly-targeted medications.
The Sticking Point
In another well-attended talk, Dr. Murray Raskind of the UW Alzheimer Research Center (ADRC), explained that poor blood supply due to neurovascular disease often accompanies the amyloid plaques and tangles of tau usually associated with Alzheimer-disease type dementia. “The fact of ‘mixed dementia’ may seem overwhelming,” said Dr. Raskind, “but it’s actually not such a bad thing, because it gives us researchers more targets for intervention—improving either the vascular component or the AD component would be therapeutic to many people. That’s why a heart-healthy diet, he explained, isn’t just to avoid heart attacks–it can stave off dementia.
“But, here’s the sticking point,” said Dr. Raskind, who took a moment to raise a caveat to hopeful talk of emerging therapeutics of Alzheimer disease. “Finding a treatment or prevention will proceed only fast as we can get the studies and trials done,” he said. “But to get the studies done, we need healthy participants to volunteer for the A4 study, a clinical trial at the UW and many other places, to test whether a new therapy called solanezumab can delay or prevent Alzheimer disease.”
The A4 study, featured in the new NOVA documentary, Can Alzheimer’s Be Stopped?,” is enrolling cognitively intact persons between ages of 65 to 85 who will receive a free PET scan to detect the early changes of AD in brain. Those who have amyloid plaques at a high enough level will qualify to enter the trial for the new drug solanezumab or placebo. “Yet,” Dr. Raskind said, “most people don’t have amyloid in their brains, so we need to screen many more study participants. Successful trial results could mean a new preventative treatment for those with amyloid build-up in their brains.”
Generations with Pride
Dr. Karen Fredriksen-Goldsen, Professor and Director of the Hartford Center of Excellence at the UW School of Social Work, seeks to address the higher risks of disability, poor health, mental distress and isolation in aging LGBTQ communities, with relevance to dementia risk and access to quality care. She shared the fruits of her NIH-funded research in the National Health, Aging and Sexuality Study: Caring and Aging with Pride over Time. Since 2010, the project has surveyed more than 2,560 LGBTQ adults aged 50 to 100 across the United States in the first nationwide longitudinal study examining the health and well-being of LGBTQ baby boomers across the US, who come from a generation relatively less accepting of gay individuals. The study recently produced the At Risk and Underserved Report (link to PDF).
Goldsen found that more than 20 percent do not disclose their sexual or gender identity to their physician. And, one-third of the LGBTQ individuals did not have a will or durable power of attorney for healthcare, and often no one to sign the documents needed in case of a dementia diagnosis. She said that insufficient communication with medical and social service professionals creates barriers to receiving adequate care and information tailored to their unique needs, vulnerabilities, and challenges, especially in the context of cognitive decline.
“Many providers lack the communciation skills to talk to LGBTQ older adults about their lives and ensure appropriate care,” she said. “Overall, providers need to have ongoing cultural competency training, assess their own attitudes, and know how to respond with signals of safety if they self-disclose. One of the best questions to ask, I’ve found, is ‘Who in your life is really important to you and why?”
In Seattle, one of the most progressive cities in the country, Goldsen finds a surprising lack in culturally-tailored services for aging LGBTQ people—45 percent of whom live alone and 67 percent of whom reported having been verbally assaulted due to their sexual orientation or gender identity. She has responded to the problem with Generations with Pride, a Seattle/King County non-profit agency focused on developing support resources for LGBTQ seniors. The organization also trains health providers to work more effectively with LGBTQ persons, based on Goldsen’s findings about the risks that cut across these diverse communities of people.
On the bright side, the nationally funded survey found that despite their challenging circumstances, many of LGBTQ older adults have developed supportive communities and that the overwhelming majority were satisfied with their lives. The majority exercised regularly and participated in wellness and social activities.
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