Dr. Karen I. Fredriksen Goldsen, PhD, Professor at the UW School of Social Work and Director of UW Healthy Generations Hartford Center of Excellence, is an internationally recognized gerontologist and scholar in addressing health inequities of at-risk elders and their caregivers. She and her research team are creating the first ever dementia intervention tailored to address the unique needs of LGBTQ older adults living with memory loss and their caregivers: Aging with Pride’s IDEA (Innovations in Dementia Empowerment and Action) Study, currently enrolling at ageIDEA.org.
As published in the Spring 2020 issue of Dimensions Magazine
*Update: Changes during COVID-19
What is the origin of your research on health outcomes of LGBTQ elders?
Our research team has been investigating the health disparities of historically disadvantaged populations, especially populations that have limited access to services, for 25 years. We identified LGBTQ older adults as a population in high need. For the last decade, our team has been conducting Aging with Pride: National Health, Aging, and Sexuality/Gender Study (NHAS), the first National Institutes of Health (NIH) funded longitudinal national project designed to better understand the aging, health, and well-being of LGBTQ midlife and older adults and their families and caregivers. The study follows 2,450 LGBTQ adults ages 50 to 102 and tracks their health and well-being over time. We partner with 17 community agencies across every US census division.
Before the Aging with Pride study, there were no large health studies of LGBTQ older adults and their caregivers. Information about disparities in health and cognitive impairment in this population just wasn't available.
It was difficult to get such a study funded when we first started. LGBTQ elders are a largely invisible population, around which there was a lack of awareness of health disparities. Funding agencies thought that this population of seniors wouldn't participate in the project because they were too hidden and that we couldn't reach them. But actually, people did participate in our project, and have stayed engaged. We have a 94% retention rate in this longitudinal study.
What do you know about health and dementia risk factors for the LGBTQ community of older adults?
LGBTQ older adults have many strengths. They have built communities, friendships, and families, and they are resilient in many ways. But at the same time, they are less likely to seek services in part because of their experiences and history of discrimination. We found that lesbian, gay, and bisexual older adults have disparities in accessing medical care, and higher prevalence of chronic health conditions and cognitive impairment and memory loss, compared to heterosexuals of similar age. It’s very concerning to see these elevated rates of cognitive impairment.
Once we identified higher rates of cognitive impairment, we then wanted to understand the unique risk and protective factors in this community of elders. We found there are many risk factors that are associated with dementia, or Alzheimer's disease, in this community. For example, they are more likely to have HIV/AIDS, some subgroups are more likely to smoke, and they show higher rates of depression and psychological distress. These are just some of the factors likely associated with higher rates of cognitive impairment.
How are you putting these lessons into action, with the Innovations in Dementia Empowerment and Action (IDEA) Study?
Because I'm an expert in the health of disadvantaged elders and their caregivers, I wanted to partner with an expert in Alzheimer's disease and dementia. I contacted Linda Teri, PhD, one of the world’s leading experts in non-pharmacological treatments in dementia care. She is now Professor Emerita at the UW School of Nursing and past Director of the Northwest Roybal Center for Translational Research on Aging. We put our heads together. We quickly became inspired by a protocol called Reducing Disability in Alzheimer’s Disease (RDAD), developed by Dr. Teri. This validated protocol has worked to reduce stress and increase physical activity in people with dementia and their care partners.
We decided to utilize RDAD as the foundation and then designed and integrated specific components to address the unique needs of the LGBTQ population and evaluate its effectiveness in a clinical trial which we named the Innovations in Dementia Empowerment and Action (IDEA) Study. The intervention in being offered in Seattle, San Francisco and Los Angeles.
IDEA is a free six-week cognitive behavioral intervention program where a care partner and a person living with dementia (called a dyad) are matched up with a coach. One person in the dyad needs to identify as LGBTQ - it can be either the caregiver or the person living with dementia (or both). We train coaches in this cognitive behavioral intervention in three areas: problem solving, communication, and low impact exercise. The coaches help both the caregiver and the person experiencing memory loss develop strategies to solve problems that may arise, in nine one-hour sessions. We compensate people for the time that they spend on five phone assessments during the program. For each assessment the dyad successfully completes, they are given $25, for a total of $125 for the five assessments.
There has never been an intervention designed around the unique and distinct needs of LGBTQ older adults living with memory loss and their caregivers. A culturally relevant intervention uses appropriate language and addresses their history of discrimination. In the IDEA study, we want to ensure that this community can access support resources that they may not have been able to in the past. We are also thinking about what kinds of services need to be available for this community. We want to know if this program, adapted for LGBTQ adults, improves the quality of life for people with dementia and their care partners.
*Update: Changes during COVID-19
Future hopes for study?
Moving forward, I'm hoping we can extend our translational research to ensure that all LGBTQ elders and their caregivers have access to a culturally appropriate intervention. Ultimately, we want to provide this intervention across the nation.
Importantly, we have found that about half of the people who want to enroll in this study don't have a caregiver. We have now received funds from NIH to develop a pilot project focusing on people who don't have a caregiver to accompany them in a research study like this. All of this work gives us very important insights for other at-risk and underserved communities and how Alzheimer's disease and dementia impact communities at large.
What can the UW Alzheimer's Disease Research Center and the Memory and Brain Wellness Center clinic do to help?
I think it is really important to get the word out that this intervention program is available and addresses the distinct needs of LGBTQ older adults who are experiencing dementia and LGBTQ caregivers of those with dementia. LGBTQ older adults are much more likely than the general population to have friends who provide their care instead of legal family members. These friends might not think about themselves as a caregiver or that they have enough time to engage in this project. Just one person in the dyad needs to identify as LGBTQ. It is really important to let people in this situation know that they are eligible to participate. We want to reach people as early as possible, so they get the help they need. Right now, there is still room in the program for new participants. •
