Finding from the Aging With Pride: IDEA study (NCT03550131), presented at the Alzheimer’s Association International Conference in Los Angeles, July 14-18, 2019 show that a strong research-community partnership is necessary for the development and implementation of an intervention for dementia targeted to the lesbian, gay, bisexual and transgender (LGBT) community.
Participants from the LGBT community with dementia made first contacts to enlist as often as caregivers, and the most common reason for ineligibility was not having a care partner. Rates of living alone were higher compared with individuals outside the LGBT community and caregivers were more likely to be a friend/buddy than a family member.
Individuals seeking information about the study had learned about it through community events, agency newsletters, social media and the use of diverse social networks. Empowerment-focused and culturally appropriate approaches were effective in retaining participants in the study.
People in the LGBT community comprise a disparate health population with higher rates of cognitive impairment compared with heterosexual and cisgender people. In addition, the LGBT community’s needs have not been addressed in mainstream clinical trials or established clinical services.
In another study presented at the meeting, data show that members of the LGBT community are also more likely to have a diagnosis of depression (35.1% of LGBT individuals in population studied vs 28.1% of others; P <.0001). Individuals who were LGBT were 2.73 (95% CI: 2.12-3.5; P <.0001) times likely to develop dementia.
The Aging With Pride: IDEA study is the first federally funded of any interventions designed to assess and address the needs of individuals within this community who have dementia and their caregivers. The study compares a specialized LGBT enhanced program with a standard dementia program and uses coaches who help to identify and modify behavior issues that affect function and adversely affect the care recipient and caregiver dyad. Unique risk and protective factors including dealing with LGBT-specific trauma, identity management, and disclosure of their LGBT identity to health care providers and others, engagement in the LGBT community and dementia services, are addressed by the coach and physical activity to increase balance, endurance, and strength are supported.
“Given their lifetime experiences of victimization, discrimination, and bias, many LGBT older adults forgo seeking needed medical care,” said Karen Fredriksen-Goldsen, PhD, professor and director of Healthy Generations Hartford Center of Excellence, University of Washington. “LGBT people living with dementia and their caregivers often have difficulty accessing information and support services, which can be especially challenging when memory loss and dementia enter the equation.”
Hans D. Katzberg, MD, MSc, FRCPC; and Hamid Sadeghian, MD, FRCPC
Matthew Varon, MD; and Pedro M. Machado, MD, PhD
Chengyuan Wu, MD, MSBmE