Lesbian, Gay, Bisexual, and Transgender Older Adults ' Experiences With Elder Abuse and Neglect
Lesbian, Gay, Bisexual, and Transgender Older Adults ' Experiences With Elder Abuse and Neglect
had been harmed, hurt, or neglected by a caregiver, 25.7% Participants were instructed to use coded identifiers rather
reported knowing someone who had been mistreated,11 and than their names to maintain confidentiality. No demographic
over 60% had experienced psychological abuse.12 In addition information nor abuse history was collected to foster an open
to being at increased risk, LGBT older adults may also have environment and encourage active participation by all partici-
had different relationships with service providers and likely pants. Focus groups were audio recorded and fully tran-
have developed different help-seeking behaviors.13 To address scribed. We used the Consolidated Criteria for Reporting
some of these issues, academic medical groups have provided Qualitative Research to guide collection, analysis, and
guidance to improve care for LGBT patients and have cited reporting of the data.24 The study was approved by the Weill
the need for research and improved understanding of issues Cornell Medicine Institutional Review Board.
pertinent to this population.14
Our goal was to improve our understanding of LGBT older Analysis
adults’ experiences with elder mistreatment, access to resources,
and interactions with medical and service providers. Grounded theory was used to analyze the focus groups. This
included iterative refinement of the questionnaire between each
group as participant responses and discussion directed future
METHODS conversations. Themes were identified by members of the
We conducted focus groups with LGBT older adults to gain research team after iterative review of the transcripts. Once
insight into their experiences with elder mistreatment, bar- codes were developed, the research team reviewed the themes
riers they face in accessing resources, and ways that medical for accuracy and the transcripts were rereviewed and coded.
and service providers can improve outreach and support to Any discrepancies were resolved by consensus. All the key
this community. Because little is known about elder abuse themes reached saturation by the end of the third focus group.
among LGBT older adults, qualitative methods are ideally
suited for the in-depth investigation of this complex social RESULTS
issue.15 Focus groups have previously been successfully used
in elder abuse16-18 and intimate partner violence among Three focus groups of 8 to 10 participants each (26 total)
younger LGBT adults.19,20 were conducted at three SAGE centers, each representing a
This study was conducted in collaboration with a different borough of New York City. Participants were all
national leader in LGBT older adult service provision, Services SAGE members, identified as LGBT, and were older than
and Advocacy for Gay, Lesbian, Bisexual, and Transgender 50 years.
Elders (SAGE). SAGE runs senior centers dedicated to LGBT
older adults in each of the five boroughs in New York City An Expanded Definition of LGBT Elder Mistreatment
and has more than 5000 members. These community centers
provide services, including: care management, social activities, Classically, elder abuse is defined as verbal, physical, sexual,
congregate meals, adult day programs, benefits counseling, or financial abuse of an older adult by a person of trust, such
nursing services, and physical activities. SAGE leads the as a family member, friend, significant other, or caregiver1;
National Resource Center on LGBT Aging to develop and participants identified this as occurring in their commu-
resources and trainings to improve the care of older adults nity: “I’ve known lots of physical relation, gay relationships
and has been actively engaged in research focused on improv- that have regrettably got involved with physical abuse from
ing the care and treatment of LGBT older adults.21,22 one to another.” However, participants reported an expanded
definition of abuse for their community, including ostracism
from family due to LGBT status and concerns about abuse
Questionnaire Development from service providers, such as medical providers and police
We developed a semistructured questionnaire that was (Table 1). For example, one participant explained: “When I
adapted iteratively throughout the research process. The initial go to my doctor, I’m afraid to talk about who I am and ask
questionnaire included questions from previous studies16,23 as for help…And for me, that’s a form of abuse.”
well as those developed by the authors. All questions were pil-
oted with SAGE members and staff to ensure sensitivity and
Etiologies of Abuse
comprehensibility. Questions focused on the definition of elder
abuse, prevalence in the community, members’ willingness to Participants identified multiple etiologies, including: the
report or reach out to services, and barriers to reporting and desire for power and control; cycles of family violence;
accessing care (Supplementary Table S1). changing roles and increased dependency; the intersection of
LGBT and aging identity; isolation of family and lack of
advocates; and discrimination by medical providers
Participant Recruitment
(Table 1). The intersection of being LGBT and aging was
Focus groups were held in June and July 2016 at SAGE cen- often highlighted as increasing the risk for abuse: “We have
ters. Participants were recruited from among SAGE members more than one thing to fight against. The discrimination of
through regular programming advertisements. Participants being LGBT and…then you have the double whammy of
were only included if they spoke English and were believed by being elderly.” This was of great concern as participants
SAGE staff to have the capacity to consent. A SAGE staff were worried that some may believe that they could “get
member with social work training (P.H.) observed each focus away with…abuse towards homosexuals via the senior,”
group to assist any participant who became distressed during and this may represent a different etiology unique to their
the conversation or if a participant reported abuse. community. Participants also identified causes of abuse
JAGS MONTH 2019-VOL. 00, NO. 00 LGBT OLDER ADULTS’ EXPERIENCES WITH ABUSE 3
Table 1. Themes, Categories, and Representative Quotations from Focus Groups with LGBT Older Adults Regarding
the Themes of Definitions and Etiologies of Abuse
Categories Representative quotations
Definitions of Abuse
Typical definition of elder abuse “elder abuse is an…intentional act, which may be medical, physical, mental or social,…a
failure to act by a caregiver or a person or people in a relationship…which causes harm to a
person who is 60 plus years old”
Ostracism due to LGBT status “he move away…and then when [his mother] died the sister of all of his relatives, only they
inform him that she passed away but he doesn’t go to the funeral,…because the family…
doesn’t like to mingle with him. So I think it is abusive mentally”
“And I find that a lot of us are isolated and ostracized by our families”
Service providers “…if you have to call the police for a situation and they come and it’s SGL, same gender
loving people, they think it’s a joke.”
“I mean it’s not the physical abuse I suffered at the hands of New York’s finest”
“When I go to my doctor, I’m afraid to talk about who I am and ask for help, and that to me is
a hindrance for me getting the care that I need. And for me, that’s a form of abuse…I’m not
going to get the right kind of medical care that I deserve.”
Etiologies of Abuse
Desire for power and control “I think it’s a power trip that people in terms of if they feel inferior it helps their self-definition to
hurt someone lower than themselves.”
Cycles of family violence “But besides that, we’ve got to, we’ve really got to go back into our family and our history and
people in general because abuse just doesn’t start…as a child, some of us are abused by our
parents…They could be hating for whatever reason, but when they grow, as a child they’re
abused, and they bring that up through the ages with the kids beating up their kids, the kids
beating up their kids, and it goes up on the line. It’s just not one, bad thing, it’s ongoing.”
Abuse due to increased dependency “The grown children might not have the patience. It’s like when…the children were small you
and changing roles had so much patience to teach them this…but when you get up in age they don’t have that
patience.”
“I think a lot of times through the years, I mean, it was loving and everything, but after while
when one gets kind of ill, they become like co-habitating…it’s like you’re in a prison without
bars. You want to leave, but there’s no place to go; you’re up in age now. So you have to
deal with whatever happens….And you resent that…and the loving that you had before, it’s
kind of like fades away.”
Increased victimization due to LGBT “And the answer is there are still people today who think that they can get away with…abuse
status and aging towards homosexuals via the senior.”
“But I bet if you took a survey, you’d find there’s a lot of still harbored resentment against this
community and because of the resentment…the LGBT community is much more susceptible
to abuse and then when you become elderly and frail and defenseless, even more.”
“We have more than one thing to fight against. The discrimination of being LGBT and…then
you have the double whammy of being elderly.”
Isolation of family and lack of “And I find that a lot of us are isolated and ostracized by our families, so when we have to
advocates depend on nursing homes and medical facilities and we don’t have anybody to advocate and
come and visit us to make sure that we’re alright and that things are going fine for us, those
are the times when we are abused. You see it happening all the time, you know…riddled with
bed sores because nobody cares. Nobody’s visiting, nobody’s taking heed to what’s
happening to the older adult in the community.”
Providers’ communication “When I go, ‘What’s your pain level?’ It’s so and so. Okay, bah, bah, bah, into the computer.
Alright, bah, bah, bah, you’re out.”
Medical providers’ personal bias “My mother was in a nursing home, 95, terrible problem with her knee. I went out and I found
a doctor in the hall…he said to my mother, ‘Alright, what’s the problem?’ She says, ‘My left
knee is in terrible pain,’ so the doctor didn’t give her anything…‘What do you want at your
age? You’re 95.’”
“Also we need to be careful when other gay people go especially to the doctors…Try to let
them know that you are gay and that way they…comfortable to take care of us because
some of them no”
Underresourced long-term care “Because my impression is that a lot of people were hired because economically it was
cheaper to get people who are less qualified.”
from medical providers, including lack of communication Reaching Out for Help
skills; personal biases, including both heteronormative and Many participants reported willingness to reach out for
ageist beliefs; and underresourced long-term care options help and advocate for themselves, while others reported
that contribute to psychological abuse and neglect. nervousness about reaching out to law enforcement or
4 BLOEMEN ET AL. MONTH 2019-VOL. 00, NO. 00 JAGS
other providers (Table 2). Participants also recognized that Barriers to Reporting and Accessing Services
while they may be willing and able to advocate for themselves
Participants reported a multitude of factors that created
at the time of the focus groups, this may greatly change if barriers to reporting and accessing services (Table 2).
they become frail or cognitively impaired and dependent on Many participants reported distrust of police or medical
others. Additionally, participants reported a great willingness providers, and others merely did not know who to talk to
to advocate on the behalf of others, and several identified or call if they had a concern or problem, for example:
themselves as “fighters” who could help others. As one par- “Participant 7: who do you call if you can’t call a police
ticipant described: “You see another human being being officer to address an issue? Who do you call? Participant
battered and you want to do something.” 8: Ghostbusters.”
Table 2. Themes, Categories, and Representative Quotations from Focus Groups with LGBT Older Adults Regarding
the Themes Reaching Out for Help, Barriers to Accessing Services, and Potential Solutions
Vulnerabilities That Increase the Risk for Abuse and Reduce Access to Services
Throughout the Life Course Exacerbation in Later Life
Ostracism from family due to LGBT Reduced access to caregivers and housing
status options
Prior abuse/violence Increased risk of abuse
Increased prevalence of HIV Increased vulnerability due to physical and
cognitive impairment
Income discrimination Reduced access to housing and caregiving
Lack of spousal benefits resources due to lower income/lack of private
health insurance
Poor interactions with law Reduced likelihood of reporting to law
enforcement enforcement
and medical providers Discomfort with medical providers, unlikely to
report or ask for help
Heteronormative experiences Reluctance to engage with traditional support
services
Avoidance of long-term care
Figure 1. Vulnerabilities that increase the risk of abuse and reduce likelihood to report elder abuse throughout the life course that
are exacerbated in later life in the lesbian, gay, bisexual, and transgender (LGBT) community. HIV indicates human immunodefi-
ciency virus.
6 BLOEMEN ET AL. MONTH 2019-VOL. 00, NO. 00 JAGS
adults may have more limited informal caregiver networks as adjusting forms to identify sex identity.13,33,34 While univer-
many did not have or adopt children and lost partners and sal screening in primary care is not currently recommended
friends in the AIDS epidemic of the 1980s, thus limiting their for elder abuse,35 the Elder Abuse Suspicion Index may be
options for safe housing and caregivers. The fear of long- used to start a conversation with patients about abuse.36
term care, both from their perceived increased risk of abuse There are several resources available to older adults
due to being LGBT and from experiences with loved ones experiencing abuse, which can be found through the
whom they perceived had received inadequate care, was cited National Center for Elder Abuse, and specialized resources
by many participants as a key reason not to ask for help. can be found through local SAGE programs.
If an older LGBT victim tries to access services in the Other service providers and service systems as a whole
community, he/she may also face unique barriers. Domestic also concerned participants. LGBT older adults are more
violence service providers, such as shelters, which predomi- likely to have lower incomes due to a lifetime of discrimina-
nantly serve younger victims, feel unprepared to serve tion due to their LGBT status, are less likely to have tradi-
LGBT adults, often citing a lack of training, funding, or tional spousal support from retirement and health plans due
dedicated resources for victims of same-sex partners or male to this discrimination, and depend more on social service
victims of intimate partner violence.29 Most importantly, programs.29 The budget constraints of these programs were
victims themselves have found these resources to be particularly concerning to participants in the Bronx, one of
unhelpful, and in some cases even harmful, and often turn the lower-income boroughs in New York City. Participants
to family of choice members first.19,20 Older adults trying often felt that the limitations of these programs were a form
to access these resources may face the dual challenge of of systemic abuse as their daily needs were commonly unmet
being an older adult and LGBT, both of which these pro- by the support offered by programs such as Medicaid.
viders may be uncomfortable in serving. Many LGBT older adults have faced victimization
In each group, participants were concerned with, and throughout their lives, often in the form of stranger or street
many had experienced, abuse from medical providers, repli- violence, and many participants worried that this type of vio-
cating concerns reported in prior studies.12 This varied from lence would escalate in later life as LGBT older adults became
verbally derisive or discriminatory comments to providing easier targets for homophobic hate crimes. They felt that much
inadequate care. This relationship with the medical system of this was rooted in discrimination and bias that will hopefully
may be rooted in history for many participants as they have change as legalization of gay marriage and other rights that
experienced a different healthcare system than their hetero- have been won in recent years start to impact the culture. Most
sexual peers. While great strides have been made, this popu- would willingly report this kind of abuse and had suggestions
lation grew up during a time when homosexuality was to use technology or neighborhood watch programs to help
illegal7 and considered a mental illness,30 and for many peo- ensure the safety of everyone in the community.
ple, law enforcement and medical professionals helped to Participants were able to recommend concrete ways
further victimize, rather than advocate for, this community. that service providers could help to start identifying and
As such, LGBT older adults’ relationships with service pro- treating this kind of abuse, and felt that this was important.
viders may be drastically different than non-LGBT older Some suggested improvements included: interviewing older
adults and younger LGBT adults, and may impact their will- adults alone, being persistent in asking about their home
ingness to seek help if they were in an abusive situation. life, believing older adults when they do report, and treating
While the laws have changed and the medical profession has the mental illnesses of perpetrators. In addition, they
worked to rectify some of these relationships,14 these efforts suggested using systems already in place to improve medical
have been recent and many LGBT older adults may still face care, such as using a morbidity and mortality review format
discrimination in the physician’s office. In a recent survey, for complaints or incidents of discrimination in healthcare.
40% of LGBT people, aged 60 to 75 years, said their physi- They also expressed an understanding of budgetary limita-
cian does not know their sexual orientation,24 and 46% of tions in the healthcare system and felt this lead to inade-
transsexual older adults have reported being denied or pro- quate training and hiring unqualified staff, particularly in
vided inferior healthcare because of their sex identity.21,31 long-term care, which lead to abuse and discrimination.
The participants in our study reported discomfort with their Despite their complex history with all types of service
healthcare providers, particularly about how open to be providers, including medical providers, participants were
about their LGBT identity, and were concerned about this willing to engage with researchers from a medical institution,
impacting their medical care. This greatly impacted their and wanted to improve things for themselves and the next
willingness to report abuse, particularly if the abuse were generation. Participants profusely thanked researchers for
related to their LGBT status. coming to them and eliciting their opinions and expressed
Best practices for providing medical care for older their desire to engage more actively with researchers and pro-
LGBT adults can be found from several sources. viders who want to serve the LGBT community.
Fredriksen- Goldsen et al provide recommendations to pro-
viders caring for older LGBT adults to improve cultural
Limitations
competency, including examining their own attitudes about
LGBT communities and understanding the historical and This study was only conducted in three boroughs of
social context that LGBT patients live in.32 Providers can New York City, limiting its applicability to other
also take simple steps to provide a more inclusive care set- populations and contexts. New York has the largest net-
ting, including posting signage indicating an inclusive envi- work of LGBT senior centers in the country, making it an
ronment, adjusting social history questions to ask about ideal place to start the investigation of this topic; however,
family of choice rather than just biological family, and it also has a larger LGBT community and a fundamentally
JAGS MONTH 2019-VOL. 00, NO. 00 LGBT OLDER ADULTS’ EXPERIENCES WITH ABUSE 7
different culture than other places in the country and the 5. Dong X, Simon MA. Elder abuse as a risk factor for hospitalization in older
persons. JAMA Intern Med. 2013;173:911-917.
world where LGBT populations may face more discrimina-
6. Dong X, Simon MA. Association between reported elder abuse and rates of
tion and violence. Further investigation in the other parts of admission to skilled nursing facilities: findings from a longitudinal
the country, including in rural areas, is necessary. In addi- population-based cohort study. Gerontology. 2013;59:464-472.
tion, while we were able to talk to many participants, 7. Fredriksen-Goldsen KI. Resilience and disparities among lesbian, gay, bisex-
demographics and abuse history were not collected, making ual, and transgender older adults. Public Policy Aging Rep. 2011;21:3-7.
8. Mikel L, Walters JC, Breiding MJ, The National Intimate Partner and Sexual
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described etiologies, and proposed concrete solutions to 11. Grossman AH, Frank JA, Graziano MJ, et al. Domestic harm and neglect
these issues. Participants also reported being willing to among lesbian, gay, and bisexual older adults. J Homosex. 2014;61:1649-
engage with researchers and service providers, including 1666.
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Financial Disclosure: Elizabeth Bloemen’s participation was 17. Mysyuk Y, Westendorp RG, Lindenberg J. Perspectives on the etiology of
supported by an MSTAR (Medical Student Training in violence in later life. J Interpers Violence. 2015;31:3039-3062.
18. Enguidanos S, DeLiema M, Aguilar I, Lambrinos J, Wilber K. Multicultural
Aging Research) grant from the American Federation for voices: attitudes of older adults in the United States about elder mistreat-
Aging Research. Tony Rosen’s participation was supported ment. Ageing Soc. 2014;34:877-903.
by a GEMSSTAR (Grants for Early Medical and Surgical 19. Guadalupe-Diaz XL, Jasinski J. “I wasn’t a priority, I wasn’t a victim”: chal-
Subspecialists’ Transition to Aging Research) grant (R03 lenges in help seeking for transgender survivors of intimate partner violence.
Violence Against Women. 2016;23:772–792.
AG048109) and a Paul B. Beeson Emerging Leaders Career
20. Turell SC, Herrmann MM. “Family” support for family violence: exploring
Development Award in Aging (K76 AG054866) from the community support systems for lesbian and bisexual women who have expe-
National Institute on Aging. He is also the recipient of a rienced abuse. J Lesbian Stud. 2008;12:211-224.
Jahnigen Career Development Award, supported by the 21. Espinoza R. Out & Visible: The Experiences and Attitudes of Lesbian,
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Author Contributions: All authors contributed signifi- 2011. https://nutritionandaging.org/inclusive-questions-older-adults-practical-gui
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