The Challenges of Being a LGBTQ+ Caregiver for Dementia

Each year, more than 16 million Americans provide more than 17 billion hours of unpaid care for older adults with Alzheimer’s disease and related dementias. While all caregivers of people with dementia or other health challenges can benefit from support services and have common barriers, caregivers within the LGBT community have unique experiences and needs. 

LGBTQ adults also face the additional burden of discrimination and social stigma, which can impact their access to medical care and social care services. LGBTQ caregivers, whether be close friends or family members of the person with dementia, may also be dealing with their own quality of life challenges.

Types of LGBT Caregivers

Those in the LGBTQ community become caregivers in larger numbers, making up 9% of the caregivers in the United States. However, across aging services, LGBTQ individuals are often overlooked as caregivers–often due to an understanding of how “LGBT caregiving” is defined.

Among LGBT people, caregivers can fall into three different groups that have unique challenges. An LGBT adult can also identify as being within multiple categories as described below.

An LGBTQ person caring for another LGBTQ person

These caregivers may or may not see themselves as caregivers, especially if they are a part of a LGBT couple and view the acts of support they are doing as what is necessary to be supportive of a life partner. For some of these caregivers, their own family of origin relationships may be strained, limiting the appropriate resources they can expect from their biological families. They also may not have adult children on which they can rely for additional social support.

Unpaid carers who identify as LGBTQ+

When a group of family members comes together to care for an parent with Alzheimer’s disease or another dementia diagnosis, the LGBT member often assumes the role of primary caregiver. This is because they are often perceived to have more time and availability than their heterosexual counterparts, who may have children to care for in addition to their responsibilities as an adult child.

Special issues arise when an LGBT adult child is caring for a older adult parent that never accepted his/her sexual orientation or for which there is memory loss or cognitive impairment that impacts the ability of the person being cared for to be a “safe space” for the LGBTQ+ individual.

Informal caregivers providing support to older LGBTQ people

When non-LGBT caregivers act as caregivers for LGBT elders, they may feel personally accepted within support groups or comfortable accessing community resources for their own health issues; however, these same organizations may not be equally accepting of those with different gender identities.

If you are providing dementia care to a LGBTQ+ older adult, know you are supporting community members among the most isolated social positions and due to this, those with some of the greatest health disparities.

Recognizing that you or the person receiving dementia services is within this gender minority of LGBTQ+, your being aware of the challenges you may face in the life course of the caregiving process and the possible solutions available, can impact the likelihood of quality care.

Below we will explore some of the common challenges encountered in the LGBTQ caregiving process and provide guidance in addressing them.

Common Issues for LGBTQ Elders and Caregivers

Recognizing Families of Choice Legally

If you or a loved one with dementia are part of a family relationship by choice versus designated by an official legal arrangement, when medical needs arise if protections are not put in place, you may lose out on necessary recognition or protection. For many LGBTQ people, familial-type relationships are created out of the need for social, physical, and emotional support and can be the cornerstone of caregiving arrangements.

It is important for these types of arrangements to be recognized formally by social service providers and other legal entities. Completing necessary documentation to ensure the needs of older people in these categories are protected, is important before there are long-term care services needs. In recent years, many states have adopted the CARE (Caregiver Advice, Record, and Enable) Act, which requires hospitals to ask patients at admission if they wish to designate a caregiver. Some helpful background on the New York State Care Act provisions is available here.

Access to Services

According to research done by the Funders for LGBTQ Issues, LGBTQ older adults are five times less likely to seek medical care or other social services than the general public. By avoiding medical care, they are putting themselves at risk for negative physical and mental health outcomes. This lack of mistrust in health care providers by transgender individuals and others within the LGBT population has serious ramifications for the success of comprehensive care and services.

Caregivers must partner with providers and other policy makers to create supportive environments for service provision of LGBT older adults with dementia and their LGBT caregiver counterparts. This includes anticipating non-traditional family structures and providing acceptance as they would caregivers who are traditional relatives.  Joining a focus group or advocacy group to bring attention to this need could help improve dementia experiences.

Concerns with Finances

It has been noted by SAGE that LGBT older adults are less likely to be ready for retirement with respect to financial security. Add to this, the challenge of facing what has been called the most expensive disease by the Alzheimer’s Association, will likely limit the ability of this population of older adults being able to coordinate and afford additional support and resources.  Receiving competent support from a knowledgeable financial consultant and conducting research about all of the available options as early as possible in the dementia caregiving journey or if only possible, in advance of your loved one’s needing higher levels of care, could make a marked difference in financial outcomes of you, as the caregiver, and your loved one with dementia. 

Caregiver Social Isolation

Regardless of whether your loved one with dementia or you, as the caregiver, are from the LGBTQ+ population of older adults, the act of being a caregiver is extremely isolating and stressful. Accessing an LGBT support group or other resources available from the Family Caregiver Alliance, early in the journey of caregiving is imperative. All caregivers are susceptible to burnout, but the LGBT caregiver experiences additional factors that increase the likelihood and time to reaching that state.

At times, knowing that you are not alone, and connecting with people in similar situations with the ability to offer ideas for solving the challenges you face, can make all the difference in helping you face another day as a LGBTQ caregiver or a caregiver of an LGBT older adult with dementia. This May, LifeSpan of Greater Rochester is hosting a LGBTQ+ Caregiver Panel on National Honor Your LGBT Elders Day. For more information and to register, go online here for in person and for a virtual option.

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