Rachel, a 66-year-old Latina lesbian, has been caring for her 96-year-old mother–who has a dementia diagnosis, and with whom she lives–for the last five years. Trudy is 78 years old and caring for her Alzheimer’s-affected partner Louisa; they have been together for nearly 35 years. Kevin, age 60, cares for his former partner Richard, who is HIV positive< and medically frail, living in supportive housing with round-the-clock care.
Rachel, Trudy, and Kevin, like so many family and friend caregivers, show up every day for their care recipients, even when it’s not easy. All three of them are members of the LGBT community, and they faced caregiving in isolation before they got involved with the caregiver program at SAGE. Our caregivers support groups, including one specifically for dementia caregivers that is co-sponsored by CaringKind, have been a lifeline for many.
A member of the dementia caregivers support group since its inception, Rachel has often told the other members that being in the group has made her feel more compassionate, and that it also contributes to her patience in caring for her mother. Being around a table of LGBT caregivers of adults with dementia has been so helpful to Rachel, who says, “We all speak the same language.”
Rachel is in good company: there are about three million LGBT caregivers in the U.S., according to a 2015 study, and while many LGBT caregivers are doing “horizontal caregiving”–in which they care for another LGBT adult, such as a partner, spouse, friend, ex-partner, or neighbor–we also see many adult children caring for their parents with dementia or other conditions. It’s no unusual for an LGBT adult among a group of siblings to act as a primary caregiver, and it is possible that LGBT adults become caregivers for their parents or other relatives at a higher rate than non-LGBT people. Families may presume that LGBT adults have more time and availability because they’re less likely to have children. Additionally, LGBT people’s families of origin may not be privy to their relationships, and their obligations and care for members of their families of choice may go unnoticed. Adult LGBT children may also find themselves caring for parents who have not been affirming of their LGBT identity.
Many LGBT people rely on those families of choice rather than biological ones for their care, and LGBT caregivers may not be treated with the same respect or understanding. They can be especially vulnerable to caregiver burden, stress, and burnout, and less likely to seek out supportive services because of fears of being treated poorly. More apt than non-LGBT adults to care for each other in isolation, LGBT caregivers can face further strain because there is no one else involved to share the care. Solo caregivers are particularly vulnerable, with compounded health disparities and few opportunities for respite.
Culturally competent support is essential for LGBT caregivers, and SAGE is proud to collaborate with CaringKind to ensure his remains available. As Trudy put it, “It requires a lot of grace and creativity to care for someone with dementia. It doesn’t get better and I can’t get ahead of it. It’s a lifesaver to come to this group and not feel alone.”
Written by Teresa Theophano, Assistant Director of Care Management Services, SAGE.