The Importance of Gay and Lesbian Spousal and Partner Caregiver Research: A Q&A with Toni Calasanti and Brian de Vries
September 2020 | Toni Calasanti and Brian deVries
Congratulations on being awarded a grant from the National Institute of Aging to research the Caregiving needs of spouses and partners with Alzheimer's and dementia. Can you tell us more about this specific study?
Caring for someone with Alzheimer’s or other types of dementia or cognitive decline can be extremely challenging. But this does not mean that all caregivers experience these challenges in the same ways. We are interested in how gender and sexual orientation shape these—the aspects of caregiving that older adults find most challenging, the resources they bring to bear on dealing with these, and how these fit with their self-identities. In addition, one’s relationship to the care receiver has an impact; so we are focusing only on partners and spouses and the particular bonds that are challenged and reformed in the caregiving process.
Why is it important to study the needs of Gay and Lesbian caregivers?
There are many reasons why studying the needs of gay and lesbian caregivers matters. First, we still know relatively little about their experiences, particularly in the context of caregiving and dementia, and where and how practitioners, policies, programs, and the like might support them in this work. Gay and lesbian caregivers already face discrimination that makes dealing with health care providers or social service providers more difficult. They may have few formal or informal supports; lower incomes—a whole range of potential resources may be attenuated. At the same time, they may also bring particular experiences and skills to their care work, such as past experiences of caregiving when they were younger, such as many may have done during the AIDS crisis. Whether such experiences help or possibly re-traumatizes is unknown. There is surprisingly little research on gay and lesbian caregivers in later life. We know that there are important differences between caring for, say, a parent versus a spouse. This gets even more complex when we consider Alzheimer’s or other dementias; if, for instance, the care receiver no longer recognizes the caregiver, how does that complicate caregiving? This can be difficult enough for straight caregivers; but what emotional and practical issues does this represent for a gay or lesbian partner/spouse? The kinds of problems that gay and lesbian caregiving spouses/partners must deal with may be similar, yet their experiences differ. So there is a wide range of ways in which studying the needs of gay and lesbian caregivers is critically important for understanding how to support them.
What are you hoping to learn from this research?
Past research on spousal/partner older adults caring for someone with Alzheimer’s or related dementias has focused predominantly on heterosexual couples and has made clear both the similarities and the differences between the experiences of straight husbands and wives. Are these same similarities and differences present in gay men and lesbians' experiences as spousal/partner caregivers? What unique experiences are revealed? By comparing same-sex and straight caregivers, we also hope to understand how gender and sexual orientation together influence caregiving experiences: approaches, challenges, resources, and strategies.
How can people learn more about this study and participate?
We can be reached by email (firstname.lastname@example.org or email@example.com); you can also visit our study webpage at https://caregivingstudy.weebly.com/ and fill out a contact form. We would be happy to answer any questions.
Where can people learn more about other research you have been involved in as it relates to the LGBT community?
Toni’s research has focused on gender and caregiving primarily among heterosexual couples in later life; she has published extensively in this area. Her previous work on LGBT aging has been theoretical, advocating the need to engage in research. Brian’s work has focused on LGBT aging more generally, with a particular focus on social support and end-of-life issues; he too has published widely in this area (see https://www.sfu.ca/lgbteol.html for a summary of one his projects). This project represents the first collaboration between Toni and Brian and a merger of their fields of study and interests. Please feel free to contact us about any of our research, which we are happy to share.
Is there anything else you would like to share with our readers?
We are committed to these issues, both personally and professionally, being (or having been) caregivers as well as researchers. We truly want to better understand and share the experiences we study so that programs and subsequent research can fully address those issues important to same-sex caregivers—and beyond. Thus far, the participants in our study have found their discussions with us fulfilling and meaningful, and we have been awed by the honesty and commitment of these caregivers. It is our honor and passion to conduct this research.