Including and supporting LGBTQ2+ persons with dementia and caregivers
L’inscription est affichée dans la langue où elle nous a été proposée. Pour plus d’information, veuillez communiquer avec la personne ou l’organisme nous ayant soumis cette inscription.
Researcher bios and how their research backgrounds relate to this study
Dr. Arne Stinchcombe is an Assistant Professor in the Master of Applied Gerontology (MAG) program and the Department of Recreation and Leisure Studies at Brock University. He maintains expertise in the psychosocial aspects of health, aging, and older adulthood. Research interests include: mental health and aging; social determinants; LGBTQ+ aging; community mobility; and, end of life issues.
Purpose of this research project
Currently, sexual orientation and gender identity are not routinely collected as part of administrative reporting in Canada and, thus, we have little epidemiological data upon which to estimate the prevalence of dementia or related patterns of risk (Wilson et al., 2016). Data from population health studies show that lesbian, gay, bisexual, transgender, queer, and two-spirit (LGBTQ2+) older adults exhibit a higher prevalence of physical and mental health conditions known to be risk factors for cognitive decline (e.g., heart disease, stroke, depression), and behavioural risk factors (e.g., alcohol consumption, smoking) (Fredriksen-Goldsen et al., 2013; Fredriksen-Goldsen et al., 2017); these health inequalities are posited to stem from minority stress experiences associated with LGBTQ2+ identities (Meyer, 2003). Evidence suggests that poor cognitive function is a key risk factor for later dementia diagnosis (Braekhus et al., 1995). This study will use a large, prospective sample of the Canadian adult population surveyed as part of the Canadian Longitudinal Study on Aging (CLSA) in order to characterize risk and identify protective factors for cognitive deficits among sexual minority older Canadians. It will also seek to understand the lived experiences of LGBTQ2+ persons with dementia and caregivers. REB approval has been acquired to analyze secondary data collected as part of the CLSA (19-007 – STINCHCOMBE); this data analysis is ongoing. In addition, this current study has received approval from Brock University (19-367 – STINCHCOMBE).
For a long time, the perspectives of persons with dementia have been absent for research, and there is now growing recognition of the need to include the voices of persons with dementia in research to inform policy and practice (Novek & Wilkinson, 2019). This study will follow the strategies articulated by Novek and Wilkinson (2019) for safe and inclusive research practices for qualitative research involving people with dementia.
Approximately 30 semi-structured interviews will be completed with: 1) LGBTQ2+ persons with dementia; 2) persons caring for LGBTQ2+ persons with dementia; and, 3) LGBTQ2+ caregivers, focusing on lived experiences as they relate to identities, dementia, as well as formal and informal care. Interviews will be conducted by phone or using Zoom, dependent upon participant preference. Duration of interviews will vary but expected to be between 45 minutes and one hour.
This study will establish the evidence base to inform policy and practice responses that promote health equity for LGBTQ2+ persons with dementia and their caregivers and represents a series of related activities comprising a 3-year mixed-methods program of research that will set the stage for a career focused on LGBTQ2+ persons with dementia.
How this research will help LGBT2SQ people and communities
It is expected that the knowledge synthesized and produced as a result of this project will fill a critical gap in the understanding of the experiences of LGBTQ2+ persons with dementia and caregivers. By affording a voice to persons with dementia and members of informal care networks, both professional bodies and scholarly associations will be able to enhance their own practice, policies, and research (i.e. a summary report will be disseminated to articulate key themes identified). Through discussions with our contacts in the community, we know that persons with dementia and their caregivers want to share their stories – this project affords them such an outlet. Additionally, continuing healthcare education programs, within and beyond post-secondary institutions, can utilize findings in their own curricula and knowledge- development strategic plans. It is anticipated that the media interest generated by this project may have an impact on the general population's perception and interest in understanding LGBTQ2+ persons with dementia and dementia care for LGBTQ2+ people. As there is a paucity of research examining the experiences of LGBTQ2+ persons with dementia and their carers, findings from the interviews will contribute to our understanding of how to support these individuals. Lastly, in my work with aging LGBTQ2+ people, participants have reported that the opportunity to speak about their lived experiences through interviews/focus groups to be affirming
We are seeking to interview: 1) LGBTQ2+ persons with dementia or cognitive impairment; 2) LGBTQ2+ persons providing care for someone with dementia or cognitive impairment; and, 3) caregivers for LGBTQ2+ persons with dementia or cognitive impairment.
Participants are not compensated for their role in this project.
Participation in the interviews involves minimal risk. As the project involves sharing personal experiences surrounding care and illness, it is understood that there may be emotionally/psychologically charged reactions during the interview. Although this study involves some level of self-disclosure and sharing, it does not constitute therapy and the appropriate supports will be suggested should the participant voice a need. Persons with dementia may experience distress or discomfort communicating and recalling events. In line with the recommendations by the Scottish Dementia Working Group Research Sub-Group (2014), participants with dementia will be asked if they want someone to accompany them during the interview. This person will often be a family member, friend, or caregiver, and will also provide informed consent. Following best practices, the researchers will look for signs of distress and offer breaks, offer to stop the interview or research process, or change to neutral topic (Novek & Wilkison, 2019). There is also a list of appropriate online (COVID-friendly) support resources that will be offered to participants if desired/required.
Promoting the Study
Participants will be recruited through regional and national LGBTQ2+ organizations (Senior Pride Network of Niagara), seniors centres (e.g., West St. Catharines Senior Citizens Centre), and dementia care organizations (e.g., Alzheimer's Society of Canada; Alzheimer Society Niagara Region). In addition, Facebook and twitter posts will be used to publicly advertise.