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    Jim and Fred: A Love Story, Part 2

    SFBT_AgingCommunity_1Jim and Fred’s story in the previous “Aging in Community” column poignantly revealed some of the unique challenges faced by LGBT caregivers and their loved ones living with dementia. Like so many LGBT older adults and seniors, Jim and Fred could not rely on their families for support, and did not feel comfortable disclosing their relationship to service providers.

    As Jim informed me, “If I had known there was a resource available for LGBT people, I would have sought it out. That would have been a great help. Sometimes the sadness was overwhelming. It would have made a huge difference to have had an early diagnosis to understand what was happening to Fred, and to know what to expect and make a plan. And there would have been someone for me to talk to. I wouldn’t have been so alone.”

    In light of such concerns, I recently spoke with Michelle Alcedo, Director of Programs for Openhouse—the Bay Area’s LGBT senior service and housing organization. I asked her, “If a couple like Jim and Fred called you for assistance, what LGBT sensitive dementia-related services could you direct them to?”

    She responded, “They would have a few choices. Openhouse hosts the only LGBT-specific, dementia caregiver support group in the Bay Area. It’s co-facilitated by the Alzheimer’s Association and an Openhouse volunteer. Openhouse volunteers also facilitate a national, online LGBT caregiver support group in partnership with the Family Caregiver Alliance (FCA). In addition, Openhouse partners with FCA to offer a friendly visitor program that matches LGBT volunteer caregivers and LGBT seniors in the community. In addition, we are available to provide referrals to senior facilities, memory clinics, in-home service providers, and elder law practitioners that have been the recipient of Openhouse’s cultural competency training, or that we know to be LGBT sensitive.”

    agingShe continued, “And I would direct them to the important upcoming San Francisco February 20th dementia awareness and education event, Prepare for the Changing Horizon: Dementia Awareness and Caregiving for LGBT Older Adults in Diverse Communities.”

    I asked her what is important about this event. Alcedo said that the unique dementia education event is important because it brings together researchers, community providers, caregivers, and allies working to support LGBT seniors impacted by dementia and its effect on queer support networks and families of choice. She said we know that existing systems are set up for caregivers who are biologically related to the person they’re caring for.

    “What about the partners, families of choice, neighbors, coworkers and others who step-up when families of origin are absent?” she then asked. “Caregivers of people with dementia are at an increased risk for significant health issues, and between 30–40% of dementia caregivers experience depression, high levels of stress, or burnout. Caregivers of people with dementia versus non-caregivers of the same age are more likely to pass away before the loved one they are caring for. It’s clear that as caregivers, we simply cannot manage alone. But what are the implications for a community comprised of fiercely independent people, like Jim and Fred, who have difficulty asking for help, have been rejected by homo/trans/bi/queer/phobic service providers in the past, and are not ready to fully accept what is really happening?”

    “Let’s face it,” she continued, “while things may not always get better, bringing dementia out into the open does offer a critical opportunity for both the caregiver and the person with dementia to plan and prepare for changes. The earlier you discuss your wishes and expectations, the more the care receiver is able to participate in the decision-making process.”

    Today, there still is no cure for Alzheimer’s and other types of dementia. Frightening as an Alzheimer’s diagnosis can be, an early diagnosis provides a person with dementia the opportunity to be proactive by preparing legal documents, such as health directives, and by taking medication and implementing a healthy lifestyle of exercise and nutrition to slow down the progression of the disease. It also gives caregivers valuable time to educate themselves about the course of the disease, best interventions for the person with dementia, and available resources and supports.

    The San Francisco LGBT Aging Policy Task Force estimates that in just 15 years, there will be over 3000 LGBT older adults and seniors living with some form of dementia. These estimates were extrapolated from the Department of Aging and Adult Services expectation of a 49% increase in dementia-related illnesses by 2020. This sizable in-need population is predicated on the graying of San Francisco’s general and LGBT population.

    Hopefully the programs and services offered through Openhouse, Alzheimer’s Association and Family Caregivers Alliance are just the beginning of an ever-expanding network of LGBT sensitive and client-centered dementia resources.

    Please save the date for the following event:
    Prepare for the Changing Horizon: Dementia Awareness and Caregiving for LGBT Older Adults in Diverse Communities
    Friday, February 20, 8:30am–4:00pm
    The Milton Marks Conference Center Hiram W. Johnson State Office Building, Lower level
    455 Golden Gate Ave, San Francisco,
    Registration is required, so please go to the following website if you wish to attend:
    For further information, please also see my earlier articles on dementia care for the San Francisco Bay Times:
    “Jim and Fred: A Love Story”
    and “Taking Alzheimer’s/Dementia Out of the Closet”
    Dr. Marcy Adelman, a clinical psychologist in private practice, is co-founder of the non-profit organization Openhouse and was a leading member of the San Francisco LGBT Aging Policy Task Force.