Taking Alzheimer’s/Dementia Out of the Closet

Most of us know someone who has Al­zheimer’s disease or some other type of dementia (Alzheimer’s/dementia). The individual could be a beloved life partner, a family member, a friend or a neighbor. Many in our commu­nity are living with Alzheimer’s/de­mentia, or are caring for a loved one with the disease, yet we hardly speak of it. It is time to bring Alzheimer’s/dementia out of the closet.

The silence in our community around Alzheimer’s/dementia is one of the greatest barriers to care. Our com­munity knows too well from the AIDS epidemic that we need to speak up and out if we are to empower our­selves and care for our loved ones. If we don’t do this, we put ourselves at risk for isolation and early and unnec­essary placement in nursing homes or dementia care facilities. LGBT older adults and seniors are not necessarily at greater risk for this disease, at least as far as we know, but we are signifi­cantly underrepresented in dementia care services. Dementia care services, providers and care facilities continue to be challenged in providing LGBT senior/dementia capable service.

We are living longer, and this in­crease in life expectancy will mean that many more people will de­velop Alzheimer’s disease. The risk of developing the disease rises with advancing age. The Department of Aging and Adult Services (DAAS) es­timates that, over the next 15 years as the city’s population ages, the es­calating senior population and, in particular, the growing percentage of people living in their 80’s, will bring a 49% increase in dementia-related illnesses. By 2020, 37,470 San Franciscans will be diagnosed with Alzheimer’s/dementia. According to the LGBT Aging Policy Task Force report, our community can expect that over 4,000 LGBT older adults and seniors will be living with some type of dementia.

Alzheimer’s is the most common form of dementia. It is an incurable progressive disease that attacks and destroys brain cells and undermines our ability to care for ourselves. The sheer number of people living in San Francisco who will need assistance will present a crisis in care.

Heterosexual seniors often depend on spouses and adult children, meaning family members legally recognized by the health care system, to provide care and to access needed services. LGBT older adults and seniors are less likely to have children or to be mar­ried, and are more likely to live alone and depend on families of choice, or a friend, to provide caregiving. But LGBT caregivers lack legal recogni­tion, and are therefore at a prejudicial disadvantage when interacting on our behalf with senior services. Also, as we age, our friendship networks are aging along with us. As friends and partners pass away or become frail themselves, our support networks can become frayed. Unlike other age re­lated illnesses, such as arthritis, dia­betes and cardiovascular disease, a person with dementia cannot be the one arranging for their care. The lack of a reliable support network is a major barrier to accessing needed services and puts LGBT people living with dementia at great risk for being removed from their homes and placed in care facilities.

Legal, financial and healthcare plan­ning is especially important for LGBT seniors to ensure the rights of their informal caregivers to advocate and care for them and the ability to imple­ment their wishes. Advance planning makes it possible for an identified per­son—perhaps a partner, a friend or a trusted elder law attorney—to make decisions when the person with de­mentia is no longer able to do so. The Care and Aging with Pride: LGBT Older Adults in San Francisco study reported that more than one third of the LGBT senior participants did not have a durable power of attor­ney for healthcare or a will. We can and must do better than that. Avail­able resources, such as The Horizons Foundation, the National Center for Lesbian Rights and Openhouse, can provide referrals to LGBT elder law attorneys. Openhouse also of­fers workshops and events about ad­vanced planning tools and resources.

It is well documented that LGBT se­niors are reluctant to access services and programs, or to disclose their sexual orientation or gender identity because they legitimately fear dis­crimination and are concerned for their safety. In turn, few service pro­viders have received LGBT senior/dementia capable training and are therefore unskilled in creating trust­ing relationships with, or safe envi­ronments for, their LGBT clients. These concerns keep caregivers from fully utilizing dementia support and educational services.

Recent research at the School of Nurs­ing & Center for Aging at the Univer­sity of Minnesota reported that early detection of Alzheimer’s/dementia and psychosocial counseling for Al­zheimer’s/dementia caregivers re­duce caregiver stress and depression, and significantly delay admission to residential care settings. Caregivers are better able to continue providing home care when they receive psycho/social support and are educated about the progression of the disease, know what to expect and are given skills to manage health and behavioral changes. Openhouse, in partnership with the Alzheimer’s Association, provides an LGBT caregivers sup­port group. The memory clinics at both UCSF and Kaiser Permanente are LGBT welcoming. The Family Caregiver Alliance’s programs and services are LGBT affirming.

The task force recommendations call for more LGBT senior/dementia ca­pable training and services to ensure we receive respectful and appropri­ate care and an LGBT community targeted Alzheimer’s/dementia edu­cation campaign to empower LGBT people living with Alzheimer’s/de­mentia and their caregivers by iden­tifying, and/or developing, the tools and resources we need to ensure that we, and our loved ones, have access to the best care and are able to keep peo­ple living with Alzheimer’s/demen­tia living in their homes and in their community for as long as possible. The task force Alzheimer’s/dementia team, Tom Nolan, Bill Haskell and I, are currently exploring ways to im­plement these recommendations with the San Francisco, San Mateo and Santa Clara Departments of Adult and Aging Services.

It is time to speak out.

Dr. Marcy Adelman, a clinical psycholo­gist in private practice, is co-founder of the non-profit organization Openhouse and is a member of the San Francisco LGBT Aging Policy Task Force.