Spring 2018
Relational Fragility and the Isolational Trajectory in the Latter Stages of Life

The Effect of Sexual Orientation and Gender Identity on Relationships in Later Life

ABOUT THE AUTHOR

Douglas C. Kimmel, PhD
Former Executive Director
SAGE Maine
Suite 2, Tamarack Place, 13 Captain Bill Road
Hancock, ME 04640

Living in coastal Hancock County, Dr. Kimmel is a member of the Maine Psychological Association, now retired from the practice of psychology. His current interest is working for greater awareness of aging issues for gay, lesbian, bisexual, and transgender (LGBT) Maine residents. As one of the co-founders of the New York–based organization Services and Advocacy for GLBT Elders (SAGE), Dr. Kimmel is working to facilitate the development of a SAGE-affiliate in Maine. During his years as a faculty member in the Department of Psychology at City College, City University of New York (1970– 1998), Dr. Kimmel wrote and co-edited several books, chapters in books, and journal articles. He also taught in Japan and Maine, and lectured in China.

For more information on this article, please contact the author at: Doug@sagemaine.org.

Douglas C. Kimmel, PhD

Overview

The goal of this article is to provide some useful resources for understanding the special issues of aging lesbian, gay, bisexual, and transgender (LGBT) older adults, especially related to isolation. This article includes: 1) a summary of the support and advocacy issues from the National SAGE website; 2) focused discussion on home care, housing issues, and growing older with HIV/AIDS; 3) examples of specific programs focused on older LGBT concerns; and 4) a list of a number of publications available directed at the special problem of isolation for older persons who are LGBT. All of these resources are readily available on-line by searching the associated links, or on the original website.

Services for Advocacy for Gay, Lesbian, Bisexual, and Transgender Elders (SAGE) was founded in 1978 to reach out to the isolated gay men and lesbians in New York City who were among the most vulnerable members in the emerging gay community forty years ago. It began offering friendly visiting, brunches, dances, and social events. It drew attention to sexual disorientation and ageism and the myth that gay people do not grow old. SAGE has become a major national aging organization and prominent voice of advocacy for older LGBT individuals. This article relies on the pioneering work of SAGE and draws heavily on materials it provides online. We summarize some key points with links for the quotations as well as for additional resources at the end of this article.

Background Information

One obstacle facing all aging Americans is the risk of social isolation. As adults near retirement age, they may become isolated over time from their broader communities (places of worship, work settings, etc.), as well as from friends and family. This phenomenon means, among other consequences, smaller and lower quality support networks, debilitating feelings of lone-liness and depression, and at its worst, an estranged life where one’s physical and mental health deteriorates (https:// www.sage.org/issues/isolation.cfm).

Social isolation affects many LGBT older people around the country as they deal with stigma and discrimination in their daily lives and in our country’s aging system. The primary risk factors for social isolation affect LGBT older adults in unique and disproportionate ways. For example, one primary risk factor is living alone. LGBT older people are twice as likely to live alone, twice as likely to be single, and three to four times less likely to have children—and many are estranged from their biological families.

Other risk factors for social isolation include mobility or sensory impairments, socio-economic status, and psychological or cognitive vulnerabilities. The research shows that LGBT elders face higher disability rates, struggle with economic security and higher poverty rates, and many LGBT elders deal with mental health concerns that come from a lifetime of discrimination that has had psychological and materials costs.
The hardships associated with being a caregiver can also place the caregiver at risk for social isolation, yet few supports for caregivers consider the unique needs of LGBT families. Major life transitions such as the death of a loved one or the loss of a job can also disrupt an elder’s stability and lead to social isolation.

Location-related barriers, coupled with stigma and discrimination, can make it difficult for LGBT elders in many parts of the country to find the community supports they need to age successfully and avoid social isolation (https://www.sageusa.org/issues/isolation.cfm).

Home Care and Housing

In April of 2014, The National Resource Center on LGBT Aging highlighted the need for LGBT-Inclusive housing and care for LGBT older adults. Secure, stable, and affordable housing is a necessary component for healthy aging. In practical terms, a home is a physical shelter from the elements. However, people also feel a powerful emotional connection to their homes— it is a place where they can feel safe to be themselves, free from intimidation, harassment or discrimination. Research has consistently shown that LGBT older adults are less likely to have children to care for them, less likely to have someone to call on in time of need, and are at much greater risk for social isolation than their heterosexual peers.
Therefore, many of them have created strong social networks and families of choice within the LGBT community. LGBT older adults in a San Diego study stated the desire to age at home rather than move, but when asked about options, over 90 percent indicated a preference for LGBT-specific housing if it were available, and 94 percent of the same cohort reported a preference to live alongside other LGBT adults. For LGBT older adults, who came of age during a time before people began living openly and being LGBT was often misunderstood and grounds for fear and harassment, safe homes are especially important.

Unfortunately, this security is denied to many LGBT older adults. Many LGBT older adults experience fear, intimidation and harassment in their private homes as well as in nursing homes or assisted living facilities, making their living situations physically and emotionally unhealthy. In addition, due to higher levels of financial insecurity and lack of affordable housing, many LGBT elders find that they cannot afford homes in the communities they may have lived in for years (https:// lgbtagingcenter.org/resources/resource.cfm?R=339).

A recently-published, groundbreaking report—LGBT Older Adults in Long-Term Care Facilities: Stories from the Field—highlights the mistreatment that some LGBT elders may encounter (https://lgbtagingcenter.org/resources/ resource.cfm?r=54). A broad coalition of LGBT groups led by the National Senior Citizens Law Center released the report. The groups included the National Center for Lesbian Rights (NCLR), Lambda Legal, the National Center for Transgender Equality (NCTE), the National Gay and Lesbian Task Force (NGLTF), and Services & Advocacy for GLBT Elders (SAGE). The report collected information and stories from 769 individuals who responded to an online survey.

Of the total respondents, 328 people reported 853 instances of abuse, including:

  • Harassment by residents and staff
  • Refusal by staff to accept a medical power of attorney
  • Refusal by staff to use preferred name and/or pronoun
  • Refusal to provide care
  • Wrongful transfer or discharge

Nearly nine in 10 respondents said that they thought long-term care staff would discriminate against someone who came out as LGBT in a facility; eight in 10 responded that they would expect mistreatment or bullying from nursing home residents; one in 10 reported that nursing home staff had disregarded a medical power of attorney when it was assigned to a resident’s partner. Transgender elders in particular reported that they experienced isolation and staff refusal to recognize their gender identities (https://www.lgbtagingcenter.org/resources/ resource.cfm?R=64).

Older People Living with HIV/AIDS

Social isolation, loneliness, stigma and discrimination may be particularly challenging obstacles for those aging with HIV/AIDS. In a 2011 research report by Mark Brennan-Ing and Steven R. Karpiak (2011), it was found that: social isolation and resultant loneliness are endemic among OPLWHA [older people living with HIV/AIDS]. Fewer than 20% have a partner or spouse, and they are about half as likely to have a living child as adults 65 and older. Approximately 70% live alone, which is nearly twice the rate of other older adults. OPLWHA tend to have friend-centered networks that we have typically associated with the LGBT community, yet two-thirds of these adults identify as heterosexual. And while friends do provide needed support, many also have HIV. Also, OPLWHA do not disclose their serostatus to many friends.

Beyond the high rates of loneliness and poorer quality-of-life, social isolation also points to an impending shortfall of the support these older adults will need now and as they grow older and confront multiple health issues. Caregivers are derived from these social networks. Without caregivers, OPLWHA will need to increasingly turn to supports that are medically based, as well as formal community-based social services that address their treatment and care needs. However, AIDS service organizations and other HIV service providers are not experienced in the domain of aging. Conversely, most aging service providers have little knowledge of HIV.

Research is needed to better understand the causes of social isolation among OPLWHA, as well as studies that examine dynamics of social support among this population to better understand their needs and how they are met. We need to develop and test interventions that can serve to reduce social isolation and increase available levels of support. Furthermore, we need research on the service utilization patterns and associated factors (i.e., needs, service barriers) that can provide an evidence base for policy makers and program planners to address the growing needs of this aging HIV population. Lastly, we need to better understand how to better integrate HIV and aging services with research targeted at understanding how we can best leverage the resources available from these providers (https://www.lgbtagingcenter.org/resources/ resource.cfm?R=324).

Current Efforts for Targeted Support

There are several agencies and programs across the country that have adopted programs dedicated to supporting the needs of LGBT eldersand their caregivers. The following are a few of those efforts.

Boulder Area Agency on Aging, Boulder, CO

https://www.bouldercounty.org/families/seniors/services/lgbt

In a 2012 interview, Nancy Grimes and Emily Lewis of the Boulder County Area Agency on Aging outlined the LGBT-specific support programs they host. In 2000, they created the Rainbow Elders, a social support group for LGBT seniors; a group of 10–20 folks who met monthly for about eight years. “They currently maintain a mailing list of area residents who have self-identified as Rainbow Elders, and they send a monthly newsletter of social events of interest to this population.” When their agency held its first focus groups with LGBT seniors in the early 2000s, many fears about aging were raised, such as:

  • Where am I going to live?
  • How will I be treated in a nursing home if I am ‘out’?
  • Who are safe providers in the county?

These questions led to the creation of the “Silver Lining Directory: A Resource Guide for the LGBT Elder Community in Boulder County,” which is published bi-annually and distributed to area senior residences and service providers. A non-discrimination policy that includes sexual orientation and gender identity/expression is required for inclusion. The focus groups and subsequent Directory led to a much more ambitious project: Project Visibility. This cultural competency training was launched in 2004 and includes a film in which local elders and area providers voice their concerns about the aging services network; a 40-page manual of definitions, cultural competency tips, and LGBT history accompanies the film.

Lastly, since 2000, the Boulder Country Area Agency on Aging has hosted an annual Lavender Gala to reduce social isolation during the holidays. They also hold at least one educational activity, such as an estate planning workshop, for the community. The Agency hosts a booth at the local pridefest to remind their elders that the Boulder County Area Agency on Aging is LGBT friendly. The Boulder County AAA also collaborates with
Out Boulder, the local LGBT center, to encourage elders to participate in activities such as an intergenerational film project, in which youth and elders’ shared stories were captured on film (https://www.lgbtagingcenter.org/resources/resource.cfm?r=438).

Center on Halstead, Chicago, IL

https://www.centeronhalsted.org/ senior.html

In 2014, Britta Larson, Senior Services Director at the Center on Halstead was interviewed about their innovative housing program for LGBT older adults. Homesharing is a shared housing program where compatible matches are facilitated between a renter and a Homesharing provider who has an extra bedroom in their apartment, condominium, or house. Although each participant has their own bedroom, common areas of the home, such as the living room and kitchen, are shared between them.

Homesharing providers, who are generally LGBT older adults, establish the amount of rent they are looking to receive, which is usually around $500 and includes all utilities. In some cases, renters provide household assistance in exchange for reduced rent. Types of assistance that may be offered include housekeeping, laundry assistance, grocery shopping, and meal preparation (https://www.lgbtagingcenter.org/ resources/resource.cfm?R=401).

Larson points out several of the unique needs of LGBT older adults that make this program so important. First, he states, LGBT older adults are twice as likely to be single and three to four times more likely to be without children than their heterosexual counterparts. In addition, most senior living communities are not LGBT affirming and many LGBT older adults fear discrimination in this setting. The household assistance that renters can provide to LGBT older adults through this program can help them remain in their own home and age in place.

Second, he posits that after a lifetime of unequal treatment under the law, many LGBT older adults are experiencing financial hardships. The additional revenue that the Homesharing provider receives from the rent can be tremendously beneficial for seniors on a fixed income.

Lastly, Larson informs that social isolation among LGBT older adults is common as their support systems dwindle as they age. The companionship they receive from their renter can reduce loneliness and isolation.

Although there are a number of other Homesharing Programs in existence, this Homesharing Program, which began in July 2010, is the first program in the nation that has been designed to meet the unique needs of LGBT older adults (https://www.lgbtagingcenter.org/resources/resource. cfm?R=401).

The SAGE Program

www.sageusa.org

SAGE’s innovative services around the country help LGBT elders address employment barriers as they age, and provide LGBT-friendly supports, such as those offered at The SAGE Center throughout New York City (https:// www.sageusa.org/issues/isolation. cfm). SAGE has a growing network of SAGE affiliates who are meeting these needs in various parts of the country, and their online resources help reach LGBT elders in every part of the country.

SAGE Maine – An Example of SAGE in Action

www.sagemaine.org
SAGE Maine, a state-wide affiliate of Services & Advocacy for GLBT Elders (SAGE), has a particular focus on the effects of sexual orientation and gender identity (SOGI) on relationships in later life. The following are some anecdotal examples from three years of experience in this rural and relatively politically conservative state.

A Drop-In Center opened in Bangor, Maine. On the first day the intern was greeted by two women who did not know each other. One had recently been bereaved after a 40-year relationship with a same-sex partner and was coping with the attitudes of friends and colleagues who did not recognize that this grief was equivalent to that of a married couple, not just two roommates or friends. The second lived down a long dirt road several miles from Bangor and did not know another lesbian. After an article appeared in the Bangor Daily News about the group, two other women who had been together for over 30 years and had just retired, and a male neighbor they thought might be gay, arrived; they did not know any other lesbian or gay people in Bangor either. Currently, the group has grown to include a monthly luncheon that attracts as many as 21 people (with two service dogs). Last month Sage Maine invited students from the Bangor High School “Pride” group to come for a potluck; seven came and were engaged in wonderful intergenerational conversations around small tables. Many of the Sage Maine staff felt as if they were acting as kind of “grandparents” for these kids, some of whom identified as transgender or gender nonconforming (TGNC). At the recent Pride Festival, many of these pot-luckers met and greeted each other, as the two retired women helped staff the table along with three other Drop-In folks. Although previously isolated, these students are no longer disconnected and are part of a supportive community. We have invited one new member to the state-wide SAGE Maine Board and in her biographical sketch she wrote: “Finding SAGE meant everything … After her partner’s death: understanding, support, and companionship. She feels honored to be considered for this opportunity to give back to SAGE and help others, as she has been helped.”

In the bigger city of Portland, SAGE Maine has had an even larger effect with its monthly dinner which is subsidized by the Southern Maine Area Agency on Aging and hosted by St. Luke’s Episcopal Cathedral. Middle-aged volunteers from a local insurance company help serve the meals to over 80 participants. This year there was not only a contingent of walkers in the Pride Parade, but SAGE Maine was able to use a tourist trolley to bring those who did not walk to the large festival in the park, where we provided seating in the shade for all older participants.

One unique service SAGE Maine provides is a “Virtual Drop-In Center” where folks connect by telephone across the state. The calls are arranged by the Executive Director at the request of the participants who provide a phone number for the call to be received; there is also a toll-free number with no code needed if they wish to connect without providing their phone number, or are calling from a different number. At the designated time (4 pm on Tuesdays for the Lesbian, Gay, & Bisexual – LGB – folks; 4 pm on Wednesdays for the Transgender – T or TGNC – folks), the phone rings and they are invited to join the conversation. Some typical comments on the LGB conversation is the fear of disclosure in the rural community, concern about anti-gay attitudes if they need home health or physical therapy, and worry about housing if one can no longer live at home. The TGNC group, which is made up primarily of individuals who have never identified as LGB and have been, or still are married, have different concerns.

For example, one person had to visit the emergency room late at night and felt the attending staff was uncom-fortable with treating her, despite the fact that she has been regularly seen at the hospital for many years. Another participant lives in a very rural part of the state and no one knows he was not born male. He is very careful to avoid “having a target on his back” and so avoids any LGBT gathering or group; the telephone group is the only place where he feels able to talk openly and, in fact, may be the only social contact he has during the week. Another TGNC participant, still living with a wife, has to take our calls out in the barn on her cell phone, as the wife is unaccepting of living with someone who thinks of herself as a woman.

SAGECAP: Innovative LGBT Caregiving Program

[https://sageusa.org/programs/sagecap.cfm]

SAGE’s SAGECAP program offers critical supports for LGBT caregivers in New York City and around the country. SAGECAP offers a host of caregiving services to provide comprehensive support to caregivers. These services include: weekly caregiver support groups, one-on-one and group counseling services, educational seminars, bereavement group referrals, and development of caregiving plans. In addition, SAGECAP works with caregivers to prepare for their own aging needs by offering informational workshops on topics such as long-term care, financial and legal planning, and referrals to planning professionals with expertise in LGBT aging issues. By offering a comprehensive menu of counseling supports and educational resources, SAGECAP supports the caregiver with their current reality as well as preparing them for a supportive aging future. Additionally, SAGECAP promotes LGBT caregiving issues through education and outreach both locally and nationally through ad campaigns, presentations and partnerships with aging service providers to increase the ability of the aging services, and LGBT services network to meet the needs of the growing numbers of caregivers. [https://www.lgbtagingcenter.org/resources/resource.cfm?R=45]

Conclusion

These support and housing programs are shining examples of what is being done and what can be done to better help LGBT elders face their unique aging experience. As Aging Life Care Managers, it is vitally important we pay special attention to the risk factors for social isolation and loneliness in our aging LGBT clients and that you encourage your local providers and facilities to do the same. It is even more important to let the LGBT community know about services that are affirming by advertising, signs in waiting rooms, and by the use of LGBT-friendly forms. One cannot tell who is LGBT by looking, nor can an LGBT person tell which services or facilities are affirmative by guessing.

As providers, we need to recognize the subtle and significant unique needs of isolated older individuals because of long-standing attitudes regarding sexual orientation and gender identity. These gender-based attitudes are often deeply ingrained in the fabric of society and in the psyche of individuals. Only by calling attention to them, and seeking out available resources, especially including training and certification from organizations such as SAGE (https://sageusa.care), can we address the problems of isolation and relationship deficits in the later years.

Resources

SAGE LGBT Elder Hotline
Now, no matter where they live, LGBT elders have a place to call when they need peer counseling, information, and local resources. The SAGE LGBT Elder Hotline is live and ready to take your calls at 1-888-234-SAGE. The hotline is open Monday through Friday from 4pm – midnight, Eastern Time and on Saturday from noon to 5PM Eastern Time. Prefer to use email? Reach out at SAGE@glbthotline.org.

LGBT Aging Center
Another website that also has a rich set of resources about LGBT isolation is the National Resource Center on LGBT Aging: https://www.lgbtagingcenter.org. This resource center is supported by SAGE and several other organizations and was created with a federal grant. Here are some of their current resource publications:

SAGE PUBLICATIONS

[https://sageusa.org/results.cfm?Keywords=isolation]

  • A Guide to LGBT Caregiving – Spanish Edition (Una guía para el cuidado de personas LGBT )
  • Act now! OAA reauthorization must include services for LGBT elders
  • Advancing an LGBT Agenda: Guide to Aging Topics at Creating Change 2014
  • Eight Policy Recommendations for Improving the Health and Wellness of Older Adults with HIV
  • Gaining Visibility: The Challenges Facing Transgender Elders
  • Health Equity & LGBT Elders of Color
  • How Health Care Reform Will Help LGBT Elders
  • Improving the Lives of LGBT Older Adults
  • Improving the Lives of LGBT Older Adults – Abbreviated Version
  • Improving the Lives of LGBT Older Adults – Large Font
  • Improving the Lives of Transgender Older Adults
  • Improving the Lives of Transgender Older Adults: Executive Summary
  • In Their Own Words: A Needs Assessment of Hispanic LGBT Older Adults
  • Inclusive Questions for Older Adults: A Practical Guide to Collecting Data on Sexual Orientation and Gender Identity
  • Inclusive Services for LGBT Older Adults: A Practical Guide to Creating Welcoming Agencies
  • Infographic: Federally-Supported Services for LGBT Elders
  • Know Your Rights! LGBT Older Adults & Older Adults Living with HIV
  • Lesbian, Gay, Bisexual Older Adults & Medicare Fraud Prevention
  • LGBT Older Adults and Exclusion from Aging Programs and Services
  • LGBT Older Adults and Falling Through the Safety Net
  • LGBT Older Adults and Inhospitable Health Care Environments
  • LGBT Older Adults and Reauthorization of the Older Americans Act: A Policy Brief
  • Opening Doors: An Investigation of Barriers to Senior Housing for Same-Sex Couples
  • Out & Visible: The Experiences and Attitudes of LGBT Older Adults, Ages 45-75
  • Planning With Purpose
  • Public Policy & Aging Report: Integrating LGBT Older Adults into Aging Policy & Practice

One webpage on the SAGE site is devoted to isolation; reviewing the comments and resources, it is clear the mission of SAGE is both service and advocacy for LGBT elders.

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