The Massachusetts LGBT Aging Needs Assessment (MLANA) Coalition

MLANA’s Mission:  To assess the health, service, care and support needs of older LGBT people in Massachusetts and develop services that better meet the needs of this population.

All people face challenges to health and well-being as they age.  As LGBT people, we will likely encounter challenges that are unique to our status as sexual or gender minorities, as ageism and heterosexism intersect to form a double burden in our lives.  We will face stigmas related to our age and our sexual and gender identities; we are also likely to face unique challenges related to housing, physical and mental health, caregiving and receiving, and in our relationships with health care and social service providers. On the other hand, we are likely to draw on sources of strength and resilience that are distinctive to our personal and LGBT community histories of struggle.

In a culture that celebrates and values youth, older people often go unrecognized.  Older people can be made to feel invisible as they make their way in the world in their everyday lives, they are depicted one dimensionally (if at all) on television and in movies, and they are a population group that is often underrepresented in research.  This lack of recognition is doubled for older LGBTs as we find ourselves invisible as sexual and gender minorities in representations of older people and invisible as a part of the LGBT community in representations of lesbians, gays, bisexuals and transgenders.  

The Massachusetts LGBT Aging Needs Assessment (MLANA) Coalition aims to address the invisibility of older LGBTs by working collaboratively on community-based participation in research projects that assess the health, service, care and support needs of LGBT people in Massachusetts over the age of fifty.  Fenway Health and the Center for Population Research in LGBT Health has joined with the LGBT Aging Project, Stonewall Communities, the New England Association on HIV over Fifty, and several interested individuals to form MLANA and work to better understand the unique challenges and strengths of this overlooked population.

MLANA’s work builds upon a small, but growing body of research that has investigated issues unique to LGBTs as they age:

•   Caregiving and receiving.  Older LGBTs are at a disadvantage in accessing informal caregiving from loved ones like partners and children.  Why?  LGBTs are less likely to have children than their heterosexual counterparts and older LGBTs seem to be more likely than younger LGBTs and heterosexuals to live alone (Adelman et al. 2006, Heaphy et al. 2004, Crystal et al. 2003).  Further, older LGBTs are at a disadvantage in accessing formal caregiving services as few services are available that respond to the dignity and needs of older people as LGBTs.  Older LGBTs are reluctant to make use of services designed for the general population because they fear discrimination.  On the upside, older LGBTs have sources of resilience in caregiving and receiving:  they are able to rely on families of choice– social support systems of friends or combinations of friends and biological relatives – and are willing to serve as a source of caregiving to other LGBTs (Grossman 2007, MetLife 2006).  Further, community organizations like the LGBT Aging Project have responded to the caregiving and receiving needs of elders by organizing formal LGBT caregiving assistance services and by providing cultural competency training to elder service organizations that serve the general population of elders (for example: Landers et al. 2009).

•   Housing.  Like older people generally, most LGBTs report a preference to “age in place”—that is, to reside in their own home and community as they grow older.  However, some LGBT elders desire housing in a retirement community and many will face age-related conditions that require housing and care in an assisted living or nursing facility.  The transition into retirement housing may be especially difficult for older LGBTs.  Research has shown that LGBTs expect to face discrimination from facility administration, staff and residents and that they may encounter policies that are not sensitive to LGBT families and partners (Johnson et al. 2005).  For elders who are not at all or not entirely open about their sexuality or gender minority status, leaving home for retirement housing can mean leaving the primary place of refuge and freedom.  Retirement housing for these elders may represent a new closet.  On the upside, community organizations like Stonewall Communities are responding to the housing needs of elders and for their preferences to live in LGBT communities as they age.  Several projects to build LGBT centered retirement communities are under development nationwide (Adelman 2006).  

•   Access to Quality Health Care.  While access to culturally competent health care services is an issue for LGBT people of all ages, the issue can be more pronounced for older LGBTs who will require more health care services as they age.  Older LGBTs—particularly those who came of age before the Gay Liberation movement—grew up in an era where LGBT-related discrimination in health care was very common.  As such, many older LGBTs have not and do not disclose their sexual and gender identities to health care providers and their needs and unique risks may not be addressed.  Further, health care providers may often presume their patients to be heterosexual and this may be particularly true for older people (who are often thought to be lacking any sexuality at all).  Fortunately, resources are slowly becoming available to educate health care professionals in providing culturally competent care to LGBTs and LGBT older people (for example: Simone and Appelbaum 2009, Appelbaum 2008, Makadon et al. 2008).

•   Mental Health.  Older LGBTs like older people in general, face social isolation and loneliness as they age.  Compounding the issue for LGBTs may be a growing disconnection from an LGBT community that values youth and makes little space for its elder members.  This may be particularly the case for gay men, who have reported more negative views of aging than lesbians (Schope 2005).  Further, many older LGBTs have experienced sexual orientation victimization in their lifetime.  Victimization, particularly physical victimization, appears to be related to poorer mental health, poorer self-esteem, internalized homophobia and suicidal thoughts (D’Augelli and Grossman 2001).  On the upside, many older LGBTs are doing very well and some have hypothesized that the experience of being LGBT may foster the development of skills for coping with aging.  Many older LGBTs have robust social networks and report high degrees of involvement with gay community (Orel 2006, Grossman et al. 2000).

•   Physical Health and Health Risks.  Older LGBTs face health risks and health conditions that may be exacerbated by age.  Aging with HIV and AIDS is a particular concern for older gay and bisexual men.  Older gay and bisexual men are a group that remains at risk for HIV and other STIs.  Older gay and bisexual men may also be at higher risk for certain cancers, including anal cancer and may not be getting appropriately screened.  Older lesbians and bisexual women may be more likely to be overweight or obese, may have more risk factors for breast and cervical cancer, and may be less likely to be screened (Valanis 2000).  LGBT people in general face a number of disparities with regard to physical health and health risks; less is known about which conditions and risks are of particular relevance for older LGBTs.  On the upside, community organizations like Fenway Health and New England Association on HIV Over Fifty are responding and advocating for more attention to the unique health needs of older LGBTs.  The MLANA coalition is an outgrowth of such community-based efforts.

MLANA Coalition members

The Center for Population Research in LGBT Health is a project to support and stimulate research to fill critical knowledge gaps related to the health of sexual and gender minorities, strengthening the foundation for culturally competent treatment and behavior change models.  The Center serves as a science and research advisor to MLANA.  

MLANA representatives: Judy Bradford, Director and Aimee Van Wagenen, Program Manager

Fenway Health provides high quality, comprehensive health care in a welcoming environment and seeks to improve the overall health of the larger community, locally and nationally, through education and training, policy and advocacy, and research and evaluation. Fenway’s mission is to enhance the physical and mental health of its community, which includes those who are gay, lesbian, bisexual, transgender, the people who live and work in our neighborhood, and beyond.

MLANA representative: Henia Handler, Director of Government Relations

The mission of the LGBT Aging Project is to ensure that lesbian, gay, bisexual and transgender elders and caregivers have equal access to the life prolonging benefits, protections, services and institutions that their heterosexual neighbors take for granted. We promote this mission through LGBT cultural competency training for elder care providers, advocacy on local, state and national issues and outreach to LGBT elders and caregivers.

MLANA representatives: Lisa Krinsky, Director, Bob Linscott, Assistant Director, and Ed Ford, Steering Committee

New England Association on HIV Over Fifty’s mission is to build, among those living or concerned with HIV/AIDS or aging, understanding and support for infected or affected older people and to expand community conversations and actions so that they include older generations and more fully address the interplay of aging with various disease states. We intend to promote engagement and mutual respect among professionals in aging and HIV policy, research, advocacy and care, to champion the viewpoints and voices of those over 50. The New England Association on HIV Over Fifty follows an equal opportunity policy without regard to race, creed, color, religion, national origin, sex, sexual orientation, age, physical or mental handicap, veteran status, marital status, gender self-perception and/or presentation.

MLANA representative: Jim Campbell, President

Stonewall Communities is a non-profit tax-exempt organization, created to build community for and with LGBT seniors and their friends and to better understand and advocate for their needs. We are in the vanguard, working to create residential, educational, social and support opportunities for older LGBTs.

MLANA representative: David Aronstein, Founder and Board of Directors and Ed Ford, Board of Directors

Other individuals

Jeff Driskell, Assistant Professor, Graduate School of Social Work, Salem State College

Stewart Landers, John Snow International

Steve Meersman, JSI Research & Training Institute, Inc. 

Beth Prullage, doctoral student of Social Work, Simmons College

Dale Mitchell, Executive Director, Ethos

Additional resources

TFI’s Professional Education Training Module on Caring for the Older LGBT Adult

Senior Action in a Gay Environment (SAGE)

References

Adelman, M., Gurevitch, J., Vries, B. & Blando, J. A. (2006). “openhouse”: Community Building and Research in the LGBT Aging Population in D. Kimmel, T. Rose & S. David (Eds.), Lesbian, Gay, Bisexual, and Transgender Aging: Research and Clinical Perspectives (pp. 247-264). New York: Columbia University Press.

Appelbaum, J. S. (2008). Late Adulthood and Aging: Clinical Approaches In H. J. Makadon, K. H. Mayer, J. Potter & H. Goldhammer (Eds.), Fenway Guide to Lesbian, Gay, Bisexual, and Transgender Health (pp. 135-156). Philadelphia American College of Physicians.

Crystal, S., Akincigil, A., Sambamoorthi, U., Wenger, N., Fleishman, J., Zingmond, D., et al. (2003). The Diverse Older HIV-Positive Population: A National Profile of Economic Circumstances, Social Support, and Quality of Life. Journal of Acquired Immune Deficiency Syndrome, 33(1), S76-83.

D'Augelli, A. R., & Grossman, A. H. (2001). Disclosure of Sexual Orientation, Victimization, and Mental Health Among Lesbian, Gay, and Bisexual Older Adults, Journal of Interpersonal Violence,16(10), 1008-1026.

Grossman, A. H., D'Augelli, A. R., & Dragowski, E. A. (2007). Caregiving and Care Receiving Among Older Lesbian, Gay, and Bisexual Adults. Journal of Gay & Lesbian Social Services, 18(3/4), 15-38.
Grossman, A. H., D'Augelli, A. R., & Hershberger, S. L. (2000). Social support networks of lesbian, gay, and bisexual adults 60 years of age and older. Journals of Gerontology, 55b(3), 171-179.

Heaphy, B., Yip, A. K. T., & Thompson, D. (2004). Ageing in a non-heterosexual context, Ageing & Society, 24, 881-902.
Johnson, M. J., Jackson, N. C., Arnette, J. K., & Koffman, S. D. (2005). Gay and Lesbian Perceptions of Discrimination in Retirement Care Facilities. Journal of Homosexuality, 49(2), 83-102.

Landers, S., Mimiaga, M. J., & Krinsky, L. (Forthcoming 2009). The Open Door Project Task Force: A qualitative study of a program model that builds cultural competency among mainstream elder service providers working with LGBT seniors.  Journal of Gay & Lesbian Social Services.

Makadon, H. J., Mayer, K. H., Potter, J., & Goldhammer, H. (Eds.). (2008). The Fenway Guide to Lesbian, Gay, Bisexual, and Transgender Health. Philadelphia: American College of Physicians.

MetLife (2006). Out and Aging: The Metlife Study of Lesbian and Gay Baby Boomers: MetLife Mature Market Institute.

Orel, N. (2006). Community Needs Assessment: Documenting the Need for Affirmative Services for LGB Older Adults in D. Kimmel, T. Rose & S. David (Eds.), Lesbian, Gay, Bisexual, and Transgender Aging: Research and Clinical Perspectives (pp. 227-246). New York: Columbia University Press.

Roberts, S. A., Dibble, S. L., Nussey, B., & Casey, K. (2003). Cardiovascular disease risk in lesbian women, Women's Health Issues,13,167-174.

Schope, R. D. (2005). Who's afraid of growing old? Gay and lesbian perceptions of aging. Jounral of Gerontological Social Work, 45(4), 23-38.

Simone, M., & Appelbaum, J. (2009). Caring for the Older LGBT Adult. Learning Modules on LGBT Health. Boston: The Fenway Institute.  Published online.

Valanis, B. G., Bowen, D. J., Bassford, T., Whitlock, E., Charney, P., & Carter, R. A. (2000). Sexual orientation and health: comparisons in the women's health initiative sample. Archives of Family Medicine, 9(9), 843-853.