Joygage seeks to help bring awareness to the unique challenges of LGBTQ older adults who are also members of the Alzheimer’s and dementia care community.
According to SAGE, the dementia care needs of the LGBTQ community need more attention.
A 2014 survey by SAGE reported that 40% of LGBTQ older adults say their health care providers do not know their sexual orientation. Why could that be?
Unique challenges
SAGE’s 2018 report, “Issues Brief: LGBT and Dementia“, outlines the challenges faced by LGBTQ older adults affected by Alzheimer’s and other dementias.
LGBTQ older adults have lived through a long history of discrimination, and continue to face stigma in their later years. To this day, many states still do not have any laws protecting LGBTQ people from discrimination.
Given their history and lack of legal protections, it is understandable why LGBTQ older adults may be unwilling to access services or disclose their identity.
Dementia is one of the most expensive diseases in the US. People living with dementia spend more than three times on healthcare compared to others.
This means that a dementia diagnosis can lead LGBTQ individuals at increased risk for poverty into even more economic insecurity. Aside from employment discrimination, LGBTQ couples and families led by LGBTQ people continue to face unequal taxation and additional burdens.
LGBTQ older adults are more likely to be single and living alone compared to their heterosexual counterparts, who typically rely on their families and children for support. Moreover, LGBTQ people may seek support from close friends. However, their own contemporaries may be facing their own health problems and challenges.
LGBTQ caregivers
Caregiving places individuals at a greater risk of stress, and poor mental and physical health. This risk is exacerbated for LGBTQ-identifying individuals. The fear of being discriminated against makes them less likely to seek out support services.
LGBTQ people often have no children of their own. Their families may see them as the best choice to care for an aging parent. Also, more LGBTQ people become caregivers compared to the general population, at a rate of one in five versus one in six. This can be a problem as some LGBTQ people are caring for a family member who does not accept their identity, relationship, or gender expression.
Many LGBTQ older adults are also supported by their families of choice or friends. However, many service providers typically do not recognize or include families of choice.
The limited availability of LGBTQ-affirming support services may also surprise Non-LGBTQ caregivers.
Finding support
LGBTQ people deserve culturally competent support to help them navigate through the difficulties of dementia. This is especially important during a time when they might be feeling the most vulnerable. It is important for LGBTQ people to find services that can provide them with competent and respectful dementia care.
The Alzheimer’s Association, in their webinar titled “Basics of Alzheimer’s & Dementia for LGBT Care Partners“, outlined the following guide questions for finding LGBTQ-affirming resources:
- Is there an explicit LGBTQ policy?
- Are there staff and residents who are out?
- Have the staff been trained, and are they welcoming and affirming of LGBTQ people?
- Are the intake forms inclusive? If they are not, would they be open to revising the forms to be more sensitive to the needs of LGBTQ people?
- Are same-sex couples given the right to share rooms?
The availability of these resources may vary per location; some might find that LGBTQ-affirming resources may not be easily accessible in their own communities.
But times are changing as more people are becoming accepting of LGBTQ people. Today, there may be a better chance to educate and steer these institutions and organizations in the right direction.
Additional resources
Help is available for LGBT older adults living with dementia and their care partners. Here are some resources for finding LGBT-affirming services, or connecting to other members of the community:
- SAGE, through its cultural competency training program SAGECare, offers a list of credentialed providers trained to welcome and accommodate the unique needs of the LGBTQ community. Head over to their website to learn more or find a provider near you.
- The National Resource Center on LGBT Aging offers a variety of educational resources for LGBTQ people living with dementia and their care partners. Click here to learn more.
- ALZConnected, the Alzheimer’s Association’s online community, has a dedicated message board for the LGBTQ community and its allies. Sign up for a free ALZConnected account to gain access.
- Openhouse, a San Francisco-based organization for LGBTQ older adults, conducts support groups and seminars for caregivers of people living with dementia as a part of its suite of wellness service programs. Visit their website at openhousesf.org for more information.
- Speak Out with Dementia is an online peer support group for LGBTQ people living with dementia. The group is based in the United Kingdom, but people can join from anywhere in the world via Zoom. Meetings happen every Tuesday, 5:00-6:00 PM GMT. To learn more or register, send an email to speakoutwithdementia@gmail.com.