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.