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    The LGBT Dementia Care Summit: Response to a Crisis in Care

    By Dr. Marcy Adelman–

    “LGBT older adults face difficulties and limited choices as they age. Dementia only makes it more difficult whether the LGBT person with dementia is living alone or has a care person.”
    Edie Yau, Director of Diversity and Inclusion, Alzheimer’s Association Northern California and Northern Nevada (AANCNN) and LGBT Dementia Care Project Director.

    On June 7, a team of experts from the AANCNN, Openhouse and the Family Caregivers Alliance—Edie Yau, Michelle Alcedo and Leah Eskenazi—are holding a community summit to share the progress of their joint program, the LGBT Dementia Project, an innovative program to increase access to dementia-capable care for LGBT seniors and adults with disabilities.

    Four years ago, the blueprint for the LGBT Dementia Project was just one of 13 recommendations offered in the final report of the LGBT Aging Policy Task Force (LGBT Aging at the Golden Gate: San Francisco Policy Issues and Recommendation, 2014). The Task Force report identified significant under-utilization of dementia services by LGBT people and their caregivers. At the time of the study, very few LGBT people were out in San Francisco and in Bay Area dementia services. One provider estimated that less than 1% of dementia support group participants in the Bay Area are LGBT and out.

    I joined the LGBT Aging Policy Task Force specifically to work on LGBT dementia care issues. Tom Nolan and Bill Haskell, who worked for the Department of Aging and Adult Services, volunteered to work with me. The three of us expected that there would be a need for LGBT affirming services based on the lack of LGBT targeted programs mentioned in the thorough 2009 city report, San Francisco’s Strategy for Excellence in Dementia Care. Still, I vividly remember how alarmed and deeply disturbed I felt when the interviews I conducted clearly indicated what little help LGBT people with dementia and their caregivers were receiving.

    My mother, who passed away in 2007, had been challenged by vascular dementia for the last 7 years of her life. So, I knew firsthand what resources, emotional and financial, it takes for a family to care for a loved one at home. It is a huge and profoundly meaningful undertaking that touches every part of your life. After my father died, my four siblings and I saw to my mother’s care. My mother had five adult children to lovingly manage her care. By the time she passed, she was blind, unable to walk, feed or bath herself. My mother died peacefully in her home surrounded by family and caregivers.

    One of my first thoughts after my mother died was about the LGBT community—there is no way anyone should ever have do this alone. By alone I mean care for a loved one with dementia or live with dementia without the support and help of others. I knew from my advocacy work that most LGBT older adults live alone and do not have adult children to support them. I knew something needed to be done, but at the time I didn’t know exactly the what, where or when. The Task Force was my opportunity to finally do that something.

    The Task Force dementia report identified two primary barriers to accessing dementia care: fear on the part of LGBT older adults that they would not be treated with respect if their sexual orientation was known, and the lack of cultural competency expertise on the part of mainstream service providers and organizations to make LGBT older adults feel affirmed and welcomed. As recommended by the Task force, the LGBT Dementia Project, funded by the Department of Aging and Adult Services in 2016, developed and implemented an LGBT dementia capable training module for senior service providers and senior serving agencies and organizations, both LGBT and non-LGBT, as well as first responders and community members.

    The provision of training has succeeded in creating LGBT welcoming and culturally competent dementia services where there had been little to none. There are now services where LGBT people can feel comfortable being out about themselves and their loved ones. The project has also created more dementia expertise in LGBT senior serving organizations and more awareness about Alzheimer’s and other dementias in the community at large. The trainings have been successful, but they are just the foundation for creating change. I asked Yau about the goals of the Summit.

    “There are two goals: first to identify challenges in implementing LGBT inclusive strategies in aging and adult services in order to develop solutions, and second, [to] understand and address the concerns and unique challenges faced by LGBT caregivers and persons with a diagnosis from their personal experience,” Yau said.
    So where does the project go from here? “The project is up for renewal,” Yau said. “We hope San Francisco supports this project for another year to begin developing a network of support services with the LGBT community in mind. Overall, this project has been welcomed with open arms in San Francisco. The response to the training has been positive with many anecdotal stories of change in heart and attitude towards LGBT people. The challenge is developing long term change in policies by integrating LGBT inclusive values within organizations.”

    According to a recent UCSF report, there are 18,440 people 65 year of age and older diagnosed with Alzheimer’s disease in San Francisco. That number is projected to increase to 25,546 by 2030. The risk of developing Alzheimer’s and other dementias increases with advancing age. As more people live longer, we can expect an increase in the number of people diagnosed with Alzheimer’s.

    Today there are 25,000 LGBT older adults and people living with disabilities in San Francisco and that number is expected to double in the next two decades. Because of the lack of sexual orientation and gender identity data, we have no accurate estimates of the number of LGBT people living with Alzheimer’s disease or other dementias.

    The LGBT Dementia Care Summit will have a presentation by Dr. Jason Flatt on the latest LGBT dementia research, a speaker on living with Alzheimer’s, panel presentations on care partners and promising practices, a project progress report, free lunch and break out groups for an interactive dialogue about the challenges and solutions going forward.

    Come be a part of making dementia services LGBT inclusive. You will have an opportunity to meet, speak and work with the three inspiring experts who developed the training, and who are poised to take this project to the next level.

    LGBT Dementia Care Summit
    Thursday, June 7
    The Milton Marks Conference Center
    Hiram W. Johnson State Office
    Building, Lower Level
    455 Golden Gate Avenue, San Francisco
    Free Lunch Included
    Register: https://action.alz.org/PersonifyEbusiness/Default.aspx?TabID=1357&productId=38029263
    Or call 800-272-3900

    Dr. Marcy Adelman is the Co-founder of Openhouse, a Commissioner on the California Commission on Aging, a member of the San Francisco Dignity Fund Oversight and Advisory Committee, and a leading expert on LGBTQ dementia care and policy issues.