By Dr. Marcy Adelman
I don’t recall anyone telling me that one of the best experiences they had taking care of their self/parent/spouse/friend was what it took to find, manage, or coordinate in-home non-medical care. Most people I know wait until there is a health crisis before they explore in-home services for themselves or a loved one, and then they scramble to put something together. After the scramble usually comes the roller coaster ride of finding the agency and aids that are the right fit for you or your loved one. This scenario is probably true for both LGBT and non-LGBT older adults. What, if any, are the unique concerns and issues of LGBT older adults and elders concerning the use of in-home non-medical care, and how well are they being served?
In-home non-medical care is an emotionally complex and intimate experience that unfolds in the most private place in your life, your home. An LGBT older adult may hire in-home non-medical care to assist them in performing activities of daily life—such as bathing, dressing and toileting—and/or less intimate activities, such as housekeeping and food shopping. It is understandable that LGBT older adults and elders would want to be confident that the in-home care worker they invite into their home will treat them with the dignity and respect they deserve.
If you live long enough, there will most likely come a time when you will need in-home assistance to help you recover from a serious illness or injury, or to support your ongoing independence when challenged by a chronic illness or disability. According to California’s Legislative Analyst’s Office, seniors turning 65 between 2015 and 2019 are projected to live for 23.6 years after age 65 and to spend 4.5 of these years with a disability that limits their ability to independently perform routine activities of daily life. If you have a partner/spouse or other family member (such as a child or sibling) to assist you when needed, you can delay, reduce or eliminate the need for hiring in-home non-medical assistance.
Nationally, LGBT older adults and elders are less likely to have support networks that include spouses and adult children. LGBT elders are twice as likely as heterosexual elders to live alone. They are additionally half as likely to have a spouse or partner, four times more likely to have no children, and fifty percent more likely to have no close relatives to call for help when needed, according to SAGE, Advocacy and Services for LGBT Elders (http://www.sageusa.org/issues/general.cfm ).
LGBT older adults and elders look to their close friends or families of choice to provide support and care. But members of families of choice are usually similar in age and may have moved away, or are challenged with their own health issues and could then be less available to provide care support and assistance.
The alternative to in-home care is placement in an assisted living facility or nursing home. But senior institutional care facilities are known to be unwelcoming to LGBT elders (see a related report at http://www.lgbtagingcenter.org/resources/resource.cfm?r=54). Advocates have made some progress in this area by passing local anti-discrimination legislation ( related story at http://sfbaytimes.com/lgbt-senior-care-facilities-bill-of-rights-unanimously-approved/) but there is still much work to be done on the state and national levels to protect vulnerable LGBT elders in long-term care facilities.
It is not surprising that, despite frail or frayed informal support systems, LGBT older adults and seniors prefer the stability and independence provided by recovering and/or remaining in the comfort of their homes.
In 2016, Openhouse conducted ten interviews with middle plus income LGBT older adults and elders to explore their needs and concerns about in-home non-medical care. The participants were five gay men, four lesbians and one trans woman ranging in age from 57 to 81 years of age. Half of the participants lived with their spouses. Only one interviewee had no experience with in-home care.
The key theme that emerged most often across the interviews was trust. Interviewees felt it was important to establish the agency’s trustworthiness early on.
Factors that created trust were: responsiveness to client’s issues, prioritizing client’s needs, sensitivity to LGBT issues, culturally competent services, sensitivity to unique trans needs, sensitivity to individual care and personal nuance, and shared interests between caregiver and client that help to establish good relationships.
Trust is also an essential component of the Alzheimer’s Association of Northern California and Nevada’s (AANCNA) Live Alone Project in San Francisco. This pilot project provides case management and care circle development to people living alone with dementia. Trusted community non-profits Little Brother Friends of the Elderly, San Francisco Village and Openhouse refer clients to the Live Alone Project to receive case management and care circle development.
The AANCNA social workers are mindful about maintaining that trust by putting the client at the center of their care and care decisions, and when working with LGBT clients by being sensitive to LGBT issues. Social workers proactively connect with friends and neighbors who are providing assistance to acknowledge and encourage their continued caregiving assistance. The social worker also creates a plan with the client to share information and provide education and care planning with a support system.
In 2013, the LGBT Aging Policy Task Force commissioned a study, “Addressing the Needs of LGBT Older Adults in San Francisco” (http://age-pride.org/wordpress/wp-content/uploads/2013/07/SF-LGBTOlderAdultsFINAL7-10-13.pdf), which reported:
60% of participants live alone
2/3 of participants are single
85% do not have children
40% have one or more physical disability
Most participants have moderate levels of support
1/3 of participants did not utilize in-home care because they found it to be too expensive.
The study made the following recommendations:
Expand caregiving support programs for LGBT older adults.
Participants had a high need for caregiving support, combined with low rates of caregiving arrangements plans. Most live alone and do not have children to help them.
Address the distinct needs of LGBT older adults as separate subgroups.
Trans and Bisexual participants reported elevated needs for most services. Racial and ethnic minorities reported higher rates of service needs, such as mental health services for Hispanics and African Americans, and housing assistance and day programs for Hispanics and Asian Americans.
Provide training and services to help LGBT older adults as well as providers anticipate future aging and health planning needs.
Services to help create wills, testaments and powers of attorney for health care and finance would be especially helpful for LGBT older adults who are not married or partnered.
The City and the Department of Aging and Adult Services have responded to some of these recommendations. We need to determine how effective the new programs are, and where the gaps are in services.
The LGBT community needs in-home services that are affordable, accessible, culturally sensitive and sensitive to the unique needs of LGBT elders of color, Trans and Bisexual elders and both low income and middle-income LGBT elders as well.
We need to have a culturally competent workforce, better integration of services among community non-profits, and innovative solutions to ensure that every LGBT elder receives the in-home care services they need to continue to live, thrive and contribute to the community.
Marcy Adelman, Ph.D., a clinical psychologist in private practice, is co-founder of the non-profit organization Openhouse. She is also a leading advocate and educator in LGBT affirming dementia care and a member of the Advisory Council to the Aging and Adult Services Commission.
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