Hi, this is Teri. I am a third-generation Alzheimer's Survivor and co-caregiver of a parent with Alzheimer's Disease. This week, the Alzheimer's Survivor Surviving & Thriving Blog Post features Alzheimer's in the LGBTQIA+ community.
It is far past time that we need to stop defining people by their sexual preferences! I am sick and tired of it! My sexuality, your sexuality, everyone's sexuality is not anyone's business. Much less the government's business.
Think about every person you interacted with over the last week. How would the interaction have changed if that person was LGBTQIA+? This last week, I had interactions with the following:
- UPS Delivery Person
- FedEx Delivery Person
- Mailman
- Grocery Store Checker
- Grocery Store Stocker
- Cardiologist
- Cardiology Stress Test Technician
- Receptionist
- Pharmacy Technician
- Pharmacist
- Neighbors
- Lawn Service Owner
- Lawn Service Worker
- Gift Store Clerk
- Amazon Delivery Person
- Parking Garage Attendant
- Former Co-Workers
- Friends Online
- Clients
- Parent
- Face-to-Face Friends
Not one of those interactions would have been different if I knew they were or were not a part of the LGBTQIA+ community. Even the friend I had lunch with talked about their loving relationship with someone of the same sex. We must stop using insignificant differences to categorize people.
But the reality is we do judge people and define them by gender, sexuality, color, career choices, religion, nationality, levels of education, and many more insignificant definitions. We use those definitions to segregate others from our lives.
The Alzheimer's Association believes that diverse perspectives are critical to achieving health equity — meaning that all communities have a fair and just opportunity for early diagnosis and access to risk reduction and quality care. The Association is committed to engaging underrepresented and underserved communities and responding with resources and education to address the disproportionate impact of Alzheimer's and dementia.
People who identify as LGBTQIA+ experience many health disparities, like diabetes, heart disease, family violence, depression, obesity, fewer preventive screenings, poor nutrition, social isolation, and exposure to viruses. All of these can lead to cognitive decline, memory loss, and eventually Alzheimer's Disease and other forms of dementia.
Statistics
According to the Alzheimer's Association:
More than 6 Million Americans are living with Alzheimer's Disease.
Cognitive decline prevalence is higher in the LGBTQIA+ Community at 15.7%. As opposed to 10.5% in the non-sexual and gender minority.*
LGBTQIA+ adults with cognitive decline were also more likely to report functional limitations due to cognitive decline than non-LGBTQIA+ adults with cognitive decline. 60.8% versus 47.8%.*
One in 3 seniors will die from Alzheimer's Disease.
Alzheimer's kills more people than breast cancer and prostate cancer combined.
From 2000-2019, deaths from heart disease have decreased by 7.3%, while deaths from Alzheimer's have increased by 145%.*Research by Jason D. Flatt Subjective cognitive decline higher among sexual and gender minorities in the United States, 2015–2018
LGBTQIA+ and Aging
As we have discussed in the past, Alzheimer's Disease is more than a disease based on genetics. Alzheimer's is caused by a combination of age, genetics, environmental (pollution & mold) & lifestyle factors (insulin resistance, diabetes, pre-diabetes). People in the LGBTQIA+ are more at risk than everyone else.
LGBTQIA+ people face significant challenges. At the core of those challenges is the lack of social & legal acceptance. Not just in the past but in today's world, too. The keys to successful aging are good health, healthcare, economic stability & security, and social & family support. Sadly, these are the areas where the LGBTQIA+ community experiences disparities compared to non- LGBTQIA+ people. Along with discrimination, they have lived with unequal and discriminatory laws and policies for most of their lives.
A lifetime of discrimination creates a lack of economic security. This includes a history of a lack of inclusive health care, leading to physical health disparities. In addition, finding suitable jobs, limited career choices, and lower earning power have led to a life of poverty. It should be no surprise that older LGBTQIA+ people struggle to afford necessities such as food, & a good place to live.
INSURANCE
Many LGBTQIA+ people have been denied health insurance because many states do not require employers to offer coverage to partners. LGBTQIA+ seniors have faced a lifetime of employment discrimination coupled with inadequate or no legal protections against this discrimination, which contributes to lower earning power. At this time, no federal law explicitly prohibits employment discrimination based on sexual orientation or gender identity.
HOUSING
In general, there is a lack of affordable housing for elders. LGBTQIA+ people need spaces to live and thrive that are affordable and affirming of their identity. Federal housing protections prohibit discrimination in federally funded and insured housing on the basis of sexual orientation and gender identity, but state laws are lacking. Only 20 states prohibit housing discrimination based on sexual orientation and gender identity. Leaving 50% of the LGBT population in states with no laws banning housing discrimination based on sexual orientation or gender identity. Many senior living communities leave LGBTQIA+ older adults more vulnerable to discrimination and abuse.
SOCIAL SECURITY
For many seniors, social security is the difference between living in poverty and being able to afford food to eat and a place to live. Long-term lowered earning power because of employment discrimination means that LGBTQIA+ people may have lower Social Security payments. Also, while same-sex married couples now have access to social security benefits, many people in same-sex relationships whose partners died before the freedom to marry was available cannot currently access Social Security survivor benefits, one of the most critical financial safety nets available to older Americans.
RETIREMENT & PENSIONS
LGBTQIA+ people whose spouses died or retired before the freedom to marry was widely available may not have been able to access their partner's retirement or pension benefits. Changes may not be able to be made once an individual is retired. A lack of retirement or pension income contributes to economic insecurity for LGBTQIA+ people.
INHERITANCE
LGBTQIA+ people whose partners died before the freedom to marry became widely available may have been unable to inherit their partner's assets lawfully, leading to economic insecurity.
THE RESULT: Poverty and Economic Insecurity
The cumulative impact of discrimination over a lifetime is that LGBT older adults are at increased risk for poverty. Nearly one-third of LGBTQIA+ people ages 65 and older live at or below 200% of the federal poverty level, compared to a quarter of non- LGBTQIA+ people.
LGBTQIA+ Social Isolation
LGBTQIA+ people are much more likely to put off care, to be self-reliant, and to be protective of their home as a safe space. Many LGBTQIA+ people access essential services, like visiting nurses, food stamps, senior centers, and meal plans much less than the general aging population. This is despite the fact they would benefit greatly from these services.
Loneliness & social isolation are pervasive with people living with memory loss. Those living alone are also more likely to live in poverty, have had dementia for a shorter period, and have fewer impairments in performing daily activities. However, people with dementia who live alone are at increased risk of inadequate self-care and wandering.
Alzheimer's disease and fear of mistreatment can cause someone to be more isolated and not reach out for help. This isolation may result from poor transportation or access to community centers. Isolation may also be a result of a lifetime of LGBTQIA+ discrimination.
LGBTQIA+ Poverty
Until recently, LGBTQIA+ people did not have access to marriage, and many faced unfair tax burdens. That, combined with a lifetime of employment discrimination, LGBTQIA+ people are at increased risk of poverty. Most LGBTQIA+ people are concerned about not having enough money to survive.
Nationally, LGBTQIA+ people lag behind different-sex married households in income, assets, and home ownership. LGBTQIA+ people have a greater need for social services, but as we discussed, LGBTQIA+ people are fearful of accessing these services.
LGBTQIA+ Health Disparities
LGBTQIA+ people experience health disparities across many areas. According to the Institute of Medicine of the National Academies, LGBTQIA+ people experience more depression, obesity in the lesbian population, higher rates of smoking and alcohol use, lower rates of preventative screenings, including pap tests, mammograms & prostate exams, higher risk factors of diabetes, cardiovascular disease and higher incidents of HIV/AIDS for gay & bi-sexual men.
Cognitive health is linked to overall health, so access to healthcare, especially preventative care, is a priority to reduce health disparities that lead to memory loss & dementia. We must encourage LGBTQIA+ communities to access healthcare services, make lifestyle changes & support their overall health to reduce the prevalence of Alzheimer's in this community.
LGBTQIA+ Sexuality & Gender Expression
American society desexualized older adults and refuses to recognize that many people remain sexually active across their lifespan. People (regardless of sexuality) stay sexually active well into their late 80s. People with dementia also have the need and desire to be sexual and intimate.
As people with dementia experience changes in cognition & judgment, the expression of their sexuality may result in behaviors that are challenging for others to accept. A person experiencing memory loss may express inappropriate sexual behavior, changes in levels of inhibition, and maybe even the formation of new relationships. It is common for family members to struggle with decisions about what they feel is right or wrong, obligations, needs, and unfaithfulness.
LGBTQIA+ older adults face the barrier of healthcare providers who do not recognize that they are attracted to people of their gender. Healthcare providers must examine their own beliefs & prejudices as we as organizational policies to provide equal care to all.
Independent Living, Assisted Living, & Memory Care facilities rarely have experience welcoming LGBTQIA+ people. Conversations about sexuality & sexual expression are often challenging for the staff, family & loved ones. It is even more challenging if the conversation includes the sexual activity of people of the same sex. LGBTQIA+ people should be given the same opportunities to experience healthy & safe sexual contact as their heterosexual peers.
Including LGBTQIA+ people in dementia-related services
LGBTQIA+ older adults and their caregivers face unique challenges when facing Alzheimer's Disease. However, these tips will help:
· Expand your definition of family. Many LGBTQIA+ people do not have relationships with their family, children, or partners. Consider using terms like loved ones or network of support. Understand that for many, family are the people they choose to have in their life.
· Use positive LGBTQIA+ language. Don't be shy about using the words lesbian, gay, bisexual, and transgender.
· Participate in LGBTQIA+ activities. Show support by participating in positive LGBTQIA+ events.
· Include LGBTQIA+ people in your family, business, religious/spiritual, and social circles.
· Educate the people in your life on LGBTQIA+ cultural lifestyles.
· Find or create support groups specifically for LGBTQIA+ caregivers and LGBTQIA+ people living with dementia and memory loss.
· Partner with local LGBTQIA+ community groups and political organizations
· Advocate for non-discrimination protections for LGBTQIA+ older adults.
· Collect information on sexual orientation and gender identity. Be prepared to have appropriate conversations and support LGBTQIA+ people.