Dementia and the LGBTQ Community

The Stonewall Uprising in Manhattan on June 28, 1969, was the tipping point for the gay rights movement in the United States and in the world. What happened during those six days of riots was a turning point in history, and Pride Month is observed annually every June to commemorate that momentous event. Celebrating the lesbian, gay, bisexual, transgender, queer (LGBTQ) community, Pride Month is also an apt time to recognize the additional challenges faced by the group when it comes to dementia.

Dementia Doesn’t Discriminate

Dementia is an umbrella term for a group of symptoms associated with a decline in memory or other thinking skills, severe enough to affect a person’s ability to perform everyday activities/tasks, according to the Alzheimer’s Association. It affects each person differently as the symptoms vary greatly. In most cases, at least two of the following core mental functions must be significantly impaired to be considered dementia:

  • Memory
  • Communication and language
  • Ability to focus and pay attention
  • Reasoning and judgment
  • Visual perception

Every three seconds, someone in the world develops dementia, and it doesn’t discriminate. Dementia affects all races and genders; however, it is notable that certain groups are at a higher risk than others.

The prevalence among older African Americans is approximately two or three times higher than in older non-Latino whites. Additionally, almost two-thirds of those with Alzheimer’s are women. All these groups are represented in the LGBTQ community. Latinos are one and a half times more likely to develop Alzheimer’s and other dementias compared to non-Latino whites.

RELATED: Who am I? Dementia is not a disease…so what exactly is it?

Why Highlight the LGBTQ Community?

According to the Alzheimer’s Association, there are currently close to 3 million LGBTQ seniors over the age of 50 in the United States, and it is projected to increase to about 7 million by 2030. The Association also estimates 350,000 LGBTQ adults in the United States are currently living with Alzheimer’s disease or other dementias. That number is expected to increase to over a million by 2030.

Up till a few years ago, not many studies were done about Alzheimer’s and dementia in the LGBTQ community. “In fact, the first data on the prevalence of dementia among sexual and gender minorities was reported only … at the Alzheimer’s Association International Conference (AAIC) 2018,” said Maria C. Carrillo, PhD, Alzheimer’s Association chief science officer.

More recently at the AAIC 2019, several new studies were presented on dementia and the LGBTQ community, which is great news. According to Dr. Carrillo, the Alzheimer’s Association will fund more studies in LGBTQ and other diverse populations as they continue to expand to teach about the variability of Alzheimer’s and other dementias. And as more studies and research are carried out, it is hoped that more resources can be made available to LGBTQ elders living with dementia and their caregivers going forward.

Concerns for LGBTQ Seniors with Dementia

While Pride Month is meant to celebrate diversity and equality, and we have come a long way since 1969, the LGBTQ community unfortunately still faces challenges and stigma regarding health issues. While it may not be surprising, it is still troubling news to hear.

“Given their lifetime experiences of victimization, discrimination and bias, many LGBT[Q] older adults forgo seeking needed medical care,” according to Karen Fredriksen-Goldsen, Ph.D., professor and director of Healthy Generations Hartford Center of Excellence at the University of Washington, who’s been researching the risks and the resilience of older LGBTQ adults for more than 20 years.

As such, there is a dire need to provide more resources for the LGBTQ community where they feel safe enough to seek help. This is reinforced by a study released at the AAIC 2019 that showed one in seven LGBTQ adults reported a subjective cognitive decline (versus one in 10 heterosexual people).

“It is critical that more opportunities exist for people in these communities to receive regular evaluation for cognitive impairment and Alzheimer’s disease,” said Jason Flatt, PhD, MPH, an assistant professor at the Institute for Health & Aging at UCSF and the study’s lead author. While it is not yet known why there is a higher prevalence in the LGBTQ community, Dr. Flatt attributes it to possible higher rates of depression, inability to work, high stress, and a lack of regular access to healthcare.

And in response to the barriers and discrimination faced, Dr. Flatt said supportively, “There is also a need for greater education on Alzheimer’s risk, signs and symptoms, and training of health care providers to ensure inclusive and welcoming care for LGBTQ populations.”

Another study presented at the AAIC 2019, the Aging with Pride: Innovations in Dementia Empowerment and Action (IDEA), was created by Dr. Fredriksen-Goldsen to advance research into Alzheimer’s in the LGBTQ community. It is the first federally-funded dementia intervention specifically designed for LGBTQ older adults with dementia and their caregivers.

According to the press release, LGBTQ older adults living with dementia were:

  • significantly more likely to live alone (nearly 60%),
  • not be partnered or married (65%),
  • not have children (72%), and
  • not have a caregiver (59%),

when compared to older non-LGBTQ adults living with dementia.

Previous experiences of discrimination and victimization were also negatively associated with quality of life among LGBTQ older adults living with dementia. Socializing with friends or family was positively associated with quality of life, and physical activity were associated with better physical functioning.

And with what we know about the importance of social interaction and other lifestyle factors to prevent dementia, it only stresses the importance of having available resources to the LGBTQ community to ensure they have access to help and support.

Resources Available

Test your brain health

Savonix provides a safe and confidential way to assess and monitor your brain health in your own home. By simply downloading a mobile app, you can take a 30-minute test to find out more about your brain functions such as attention, focus, and memory. Visit https://savonix.com/us-brainhealth/

Access quality healthcare

It’s important for you and the person with Alzheimer’s disease to seek supportive healthcare providers who are inclusive of your identities and who you feel comfortable with as a health care provider. Seek referrals to LGBTQ sensitive healthcare providers from the Gay and Lesbian Medical Association (glma.org) or an LGBTQ community center in your area.

Find support

– The Alzheimer’s Association is available all day, every day through its free 24/7 Helpline (800-272-3900). It is staffed by master’s-level clinicians and specialists, and offers confidential support and information on a variety of topics.

– The Alzheimer’s Association partners with SAGE Advocacy & Services for LGBT Elders, the country’s oldest and largest organization dedicated to improving the lives of LGBTQ older people. To learn more about SAGE programs and services, go to sageusa.org.

Join the ASSIST Study to Help Advance Research

Boston University and Savonix teamed up in 2019 for the ASSIST Study, a three-year study to look at brain health and related lifestyle factors (e.g., diet, sleep, exercise) of about 400,000 participants. Past Alzheimer’s disease or dementia studies have focused on only a few hundred people and mainly on non-Latino white participants. The Assist Study is the first scale of its kind, and will gather data from hundreds of thousands of people and focus on more diverse populations. The Assist Study will help scientists develop new medicines and therapies, bringing us closer to finding a cure for Alzheimer’s and dementia. For more information, visit www.assiststudy.org.

  • If you’re 22 years and older, have a mobile device and about 45 minutes to take a test, you can make a difference (your health status does not matter). It’s a great and easy way to volunteer and make a big impact in the comfort and safety of your own home!
  • In less than 45 minutes, you can help us find a cure for Alzheimer’s Disease. Download step-by-step instructions for Apple devices or for Android devices.

Why Should You Join the Assist Study?

Currently, more than 50 million people worldwide have been diagnosed with dementia. Unfortunately, there is no cure or treatment. By taking part in the ASSIST study, you will help scientists better understand how the brain functions at all ages. The study includes how behaviors like sleep and exercise and other health conditions affect our cognitive health. This information can help researchers develop therapies and drugs to target memory loss and move us closer to a cure for Alzheimer’s disease. Click here for our FAQs.

For more information about the ASSIST Study or about brain health, contact us.


References

Johnston, M. (2019, June 11). Alzheimer’s and the Stonewall Generation. Alzheimer’s Association. Retrieved from https://www.alzheimersblog.org/2019/06/07/alzheimers-and-the-stonewall-generation/

Flatt, Jason et al. Subjective Cognitive Decline Higher Among Sexual and Gender Minorities: Population-Based Findings from Nine States In The U.S. Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association, Volume 15, Issue 7, P1250. https://doi.org/10.1016/j.jalz.2019.06.4779

Increased Risk of Subjective Cognitive Decline in the LGBT Community. (2019, July 14). Alzheimer’s Association International Conference. Retrieved from https://www.alz.org/aaic/releases_2019/sunLGBT-jul14.asp

Pride Month Spotlights Alzheimer’s Challenges. Alzheimer’s Association. Press Release Retrieved from https://www.alz.org/media/co/documents/Pride-Month-5-19.pdf?ext=.pdf

Lesbian, Gay, Bisexual, and Transgender Health. (n.d.). Office of Disease Prevention and Health Promotion. Retrieved from https://www.healthypeople.gov/2020/topics-objectives/topic/lesbian-gay-bisexual-and-transgender-health

Matias, D. (2019, July 17). LGBTQ Americans Could Be At Higher Risk For Dementia, Study Finds. NPR. Retrieved from https://www.npr.org/sections/health-shots/2019/07/17/742220471/lgbtq-americans-could-be-at-higher-risk-for-dementia-study-finds

Subjective Cognitive Decline — A Public Health Issue. (n.d.). Centers for Disease Control and Prevention. Retrieved from https://www.cdc.gov/aging/data/subjective-cognitive-decline-brief.html