Dementia and the LGBTQ community
The Alzheimer’s Association and SAGE (Advocacy & Services for LGBT Elders) have just released a paper (“Issues Brief: LGBT and Dementia”) focusing on the effects of Alzheimer’s and other dementias on this population. Much of the findings can be extended to other groups of older adults, especially people living alone without family or social support. The findings underscore the short- and long-term consequences of dementing conditions not only for the individual, his/her caretaker but also the community in general.
It is estimated currently that there are 47.8 million individuals in the U.S. over the age of 65. By 2030, this will increase to about 72 million Americans. By 2050, people of color (Latinos, black, Asian and Pacific islanders) will make up 42% of the population. The current group of self-identified LGBTQ individuals will also grow as a percentage of Americans, to around 15% of the population.
Alzheimer’s statistics estimate that there are 5.5 million people with this condition, increasing to over 16 million by 2050, unless effective treatment is developed. Research suggests that older adults in the LGBTQ group have higher rates of diabetes and hypertension, both associated with a higher rate of Alzheimer’s and other dementing conditions.
Overview of LGBTQ aging issues and dementia
The LGBTQ population in the U.S. and its territories varies geographically. Some areas and locations have a higher concentration of self-identified LGBTQ individuals based on where they choose to live.
• LGBTQ older adults are more likely to age without a spouse or partner and less likely to have children to support them. According to a recent SAGE survey, 34% of older adults live alone and 40% report a shrinking support network as they age.
• This means caregiving is an important issue for the elder LGBTQ individual. With less family support in some cases, the individual will create his/her family from the community of peers and friends. Dementing conditions create special problems for caregiving in general, often forcing the person into a nursing home.
• Many older LGBTQ adults seek out essential services, including visiting nurses, food stamps, senior centers and meal plans, much less frequently than the general aging population. Social isolation is a problem for LGBTQ elders with Alzheimer’s and other dementias. It is estimated that there are 800,000 LGBTQ elders with a dementing disease living alone.
• LGBTQ elders of color have the greatest disparity of health outcomes due to inadequate care of numerous chronic diseases such as HIV/AIDS, diabetes and cardiovascular health disease—all associated with an increased risk of Alzheimer’s and vascular dementias.
• In general, older African-Americans are twice as likely than whites to suffer from dementias and less likely to be diagnosed correctly. Older Hispanics are one and one-half times more likely to be diagnosed with dementias compared to older whites.
• Bias and discrimination of LGBTQ individuals remains an issue, despite legal gains made at the state and federal level. There are states that continue to allow for refusing health care services. The stigma of the past sometimes prevents the older LGBTQ adult from sharing with his treating doctors his/her lifestyle, often delaying diagnosis and start of treatment.
• Transgender elders are the most severely affected by health-care barriers. Transgender individuals of all ages often selectively hide or disclose their status. A study by NCTE (National Center for Transgender Equality) found in a 2015 survey that 50% of respondents experienced rejection from family, 33% reported negative interactions with health-care providers, and 23% avoided seeking health care because of fear of being mistreated.
• Poverty and income disparity compared with non-LGBTQ individuals continue to be a problem. One in two older queer individuals worry about not having enough money to live on as they age. Many are at high risk of living at poverty-level existence, especially lesbians. Because Alzheimer’s is one of the most expensive medical conditions, many elderly LGBTQ will require social support and services, but many are fearful of accessing these services.
• Sexuality and gender expression are issues for all of us as we age. Our more youthful-oriented society “desexualizes” older adults, regardless of sexual orientation. Many heterosexual and LGBTQ older adults remain sexually active until their mid-80s. People with dementia may also have the need for sexual expression and intimacy. When a person with a dementing illness does express these needs, there is always the question of the appropriateness of these behaviors. This is an issue rarely discussed by couples, healthcare providers and facilities such as nursing homes, especially for LGBTQ elders.
Cognitive health is linked to overall health, so access to health care, especially preventative screening, is crucial. Many barriers confront the gay male, lesbian, bisexual, transgender and queer-identified aging individual when they seek health care. Health providers and facilities need to educate themselves in the special needs of this population, especially for LGBTQ individuals who have dementia.