Disabilities and Chronic Illness Among LGBT Elders: Responses of Medicine, Public Health, Rehabilitation, and Social Work


Impairment—Any loss or abnormality of psychological, physiological, or anatomical structure or function. Impairment is considered to occur at the level of organ or system function

Disability—Any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being. Disability is concerned with how functional performance affects the whole person

Handicap—A disadvantage for a given individual, resulting from impairment or a disability, that limits or prevents the fulfillment of a role that is normal (depending on age, sex, and social and cultural factors) for that individual

The third dimension—Handicap focuses on the person as a social being and reflects the interaction with and adaptation to the person’s surroundings. The classification system for handicap is not hierarchical, but is constructed of a group of dimensions, with each dimension having an associated scaling factor to indicate impact on the individual’s life


Adapted from WHO (2011)



Across the life span, disability is typically defined in terms of difficulties in one or more physical activities of daily living (PADLS) (e.g., bathing, dressing, feeding, and toileting) or in one or more IADLs (e.g., walking, housekeeping, shopping, using the phone, taking medication, climbing stairs, reaching, and lifting or carrying large objects) (Heikkinen 2003; Wallace et al. 2011). Loss of the ability to care for oneself appropriately results in further loss of independence and can lead to the need for care in an institutional setting (Centers for Disease Control and Prevention [CDC] 2013). Moreover, Heikkinen contends that the general pattern of an increase in disability with advancing age is fairly consistent across industrialized countries, even though there may be significant differences in the prevalence of particular disabilities and underlying factors.

Just as development is not static or finite, neither is disability. The effects of chronic illness and disability may differ depending on individual attributes and on different stages of development, impeding the development of certain skills associated with a particular stage of life. For example, for older adults, illness or disability can present physical or cognitive limitations in addition to those commonly associated with the aging process. An individual grows old gradually and does not suddenly become old when he or she turns age 60, 65, or 70 (Chappell and Cooke 2010). Disability is a process of continuous adaptation to changes across the life span (Sheets 2010). Eventually, disability limits autonomy, introduces dependence, reduces quality of life, and increases risk of assisted living or custodial care and premature death (Fried et al. 2004; Heikkinen 2003).

One of the essential functions to an individual’s everyday life is mobility. In fact, mobility is considered central to an understanding of health and well-being among older populations. Limited or lack of mobility significantly narrows an older person’s world and ability to do things that bring enjoyment and meaning to life (Centers for Disease Control and Prevention 2013). The physical environment offers the potential to assist an individual to intrinsic disability (i.e., ability to perform an activity regardless of context) through the removal or modification of environmental barriers. Thus, for persons with disabilities the goal is to enhance an individual’s actual ability (i.e., ability to perform an activity when supported by the physical or social environment) (Chappell and Cooke 2010; Verbrugge and Jette 1994). The challenge for many older adults with disabilities and chronic illness is that aging-in-place (remaining at home) may be compromised by environmental hazards and barriers, common in the homes of older adults (Chappell and Cooke). Table 33.2 identifies modifications often needed for older adults to remain at home as they age. In addition, fear of discrimination and stigma drives many LGBT elders to avoid services that might enable them to stay in their homes and avoid premature institutionalization (Funders for Lesbian and Gay Issues 2004).


Table 33.2
Modifications necessary for elders to age-in-place































Automatic door openers or door handles instead of doorknobs

Flashing lights connect to doorbell for those hard-of-hearing

Frequently used items in a lower location/easier to reach

Handrails in showers, bathtubs, and around toilet area

Wider doorways, hallways, and circulation paths

No carpet and fewer transitions in flooring

Lower counters, tables, and cabinets

Step-free entry into shower

Enhanced ringer on phone

Handrails on walls

Large print dials

Brighter lighting

Exterior ramps

Without traditional support systems that allow them to age-in-place, many LGBT elders end up relying on nursing homes or other facilities to provide long-term care (MAP and SAGE 2010).



Status of Aging, Health, and Disability


Throughout the world, people are living longer, and their quality of life, to a large extent, is determined by their health status. Over the past century, a major shift occurred in the leading cause of death for all age groups, from infectious diseases and acute illnesses to chronic diseases and degenerative illnesses. Global estimates for disability are increasing due to population aging and the rapid spread of chronic diseases, as well as improvements in the methodologies used to measure disability (WHO 2011). Moreover, WHO (2011) suggests that disability is part of the human condition in which everyone will be temporarily or permanently impaired at some point in life. Persons who reach old age will experience increasing difficulties in functioning. Two out of every three older Americans have multiple chronic conditions and accounts for 66 % of the country’s healthcare budget (Centers for Diseases Control and Prevention 2013; National Institute on Aging [NIA], National Institutes of Health [NIH] 2011). The National Report on Healthy Aging reports on 15 indicators of older adult health, which are grouped into four areas: health status, health behaviors, preventive care and screening, and injuries. Eight of the 15 indicators are contained in Healthy People 2020. To date, the USA has met six of the Healthy People 2020 targets (i.e., leisure time physical activity, obesity, smoking, taking medications for high blood pressure, mammograms, and colorectal cancer screenings), with most states ahead of schedule on four health indicators for older adults (i.e., obesity, medications for high blood pressure, mammography, smoking), and with significant work to do on other indicators for older adults (i.e., flu vaccine, pneumonia) (Centers for Disease Control and Prevention). The Centers for Disease Control and Prevention identifies the areas where services are most needed for LGBT elders: housing, transportation, legal services, and chronic disease prevention.

Heart disease and cancer pose the greatest risks as people age, and for older adults, other chronic diseases and conditions including Alzheimer’s disease, diabetes, chronic lower respiratory, stroke, influenza, and pneumonia represent the major contributors to deaths (Centers for Disease Control and Prevention 2013; WHO 2011). Typically, older adults have multiple illnesses; the varied nature of these conditions requires intervention from multiple healthcare specialists, various treatment regimens, and prescription medications that may not be compatible. Because of these multiple conditions, older adults are at an increased risk for having conflicting medical advice, adverse drug effects, unnecessary and duplicative tests, and avoidable hospitalizations (Centers for Disease Control and Prevention).

Although disability correlates with disadvantage, not all persons with disabilities are equally disadvantaged. Women, the elderly, the poorest, and those with more severe impairments experience greater discrimination and barriers (WHO 2009, 2011). LGBT elders are represented consistently across these groups. The documentation of widespread evidence of barriers that are identified by WHO (2011) (see Table 33.3) for persons with disabilities parallels the barriers experienced by LGBT elders.


Table 33.3
Barriers for persons with disabilities





















Inadequate policies and standards—policy design does not always take into account the needs of persons with disabilities, or existing policies and standards are not enforced

Negative attitudes—beliefs and prejudices constitute barriers to education, employment, health care, and social participation

Lack of provision of services—persons with disabilities are particularly vulnerable to deficiencies in services such as health care, rehabilitation, and support and assistance

Problems with service delivery—poor coordination of services, inadequate staffing, and weak staff competencies can affect the quality, accessibility, and adequacy of services for persons with disabilities

Inadequate funding—resources allocated to implementing policies and plans are often inadequate

Lack of accessibility—many built environments, transportation systems, and information are not accessible to all. Lack of access is a frequent reason for persons with disabilities being discouraged from seeking employment, inclusion, or accessing health care

Lack of consultation and involvement—many persons with disabilities are excluded from decision making in matters directly affecting their lives

Lack of data and evidence—a lack of rigorous and comparable data on persons with disabilities and their circumstances and evidence on programs that work can impede understanding and action


Adapted from WHO (2011)

The status of aging, health, and disability discussed in this section is relevant to LGBT elders. In addition, LGBT older adults have complex outcomes for chronic illness and disabilities. The following section examines the occurrence of health and disability-related conditions that are specific to LGBT elders.


Chronic Illness and Disability Among LGBT Elders


Physical disability occurs frequently in older adults and is “an outcome of diseases and physiological alterations with aging, with the impact of these underlying causes modified by social, economic, and behavioral factors as well as access to medical care” (Fried et al. 2004, p. 256). With the diversity of life span, health outcomes, and other individual variations among older persons, elders are frequently identified as vulnerable because of comorbidity (multiple chronic conditions), frailty, and disability. Fried et al. assert that these clinical entities are distinct but causally related in that both frailty and comorbidity predict disability , disability exacerbates frailty and comorbidity, and comorbid diseases may contribute, at least additively, to the development of frailty. No distinction is made between the older population and older LGBT adults for these clinical entities. Over two decades ago, Fine and Asch (1988) asserted that almost all research on adults with disabilities seemed to assume the irrelevance of sexual orientation and presume that having a disability eclipses social experience. To date the majority of research on aging and disability and chronic illness continues to ignore LGBT elders. For LGBT persons with disabilities, a disability is likened to living in the “second closet” (Benedetti 2011). Thus, only estimates of the full extent of LGBT health disparities are possible due to a consistent lack of data collection. The main areas of disparity are access to health care, HIV/AIDS, mental health, and chronic physical conditions (MAP and SAGE 2010).

Understanding chronic conditions and disability among LGBT elders is increasingly important for several reasons: (a) advances in medicine, public health, rehabilitation, and technology have increased life expectancy for persons with disabilities; (b) LGBT elders have limited access to culturally sensitive and LGBT-affirmative service; (c) older adults are remaining in the workforce longer; (d) LGBT elders are among the poorest of the poor, especially women; (e) LGBT elders have higher rates of health disparities; and (f) quality of life is compounded by the intersection of age, sexual orientation or gender identity, and disability (Harley 2015). Increasing numbers of older adults living to reach old age (including LGBT elders) have changed the demographics of disability (Sheets 2010). The case of Gloria below is an illustration of a lesbian who acquired a disability earlier in life and additional chronic illness es as she aged.


Case Study of Gloria

Gloria is a 67-year-old African American lesbian. She was diagnosed with multiple sclerosis at age 36. Gloria worked as a college professor until her disability forced her to retire at age 57. Subsequently, she was diagnosed with arthritis in her hands and knees at age 48 and recently with macular degeneration of the eye. Gloria does not go to the doctor on a regular basis. She waits until the symptoms of her illnesses become, as she describes them, intolerable.

Gloria was married and divorced at age 23. She has two grown children who live in other states. Gloria served in the army for eight years. Gloria has ongoing contact with her children.

Gloria is still able to drive, but has reduced the distance that she will drive because of muscle weakness, severe headaches, and vision problems. She is not active in the LGBT community, but she does have several lesbian and gay friends with whom she socializes. Gloria regards herself as an advocate for lesbians and women’s rights.

Questions



  • What are the functional implications related to Gloria’s disabilities?


  • What type medical specialists will Gloria have to see?


  • What are the cultural considerations in working with Gloria?


  • What do you need to know about Gloria’s family dynamics and support system?


  • What issues must be addressed with regard to the intersection of age, disability, and ethnicity?

LGBT older adults are at an elevated risk of disability and mental distress, with 31 % reporting depression and more than 53 % of transgender older adults at risk of both disability and depression. The rates of disability among LGBT elders are also distinguishable by gender, with sexual minority women’s health being significantly lower than men and heterosexual women. Older gay and bisexual men are more likely to experience poor physical health compared to heterosexual men. Bisexual men have significantly higher rates of cardiovascular disease than gay men. Transgender older adults are more likely than non-transgender older adults to have obesity, cardiovascular disease, asthma, and diabetes. Lesbians and bisexual women have similar rates of vision, hearing, and dental impairments; bisexual men have more vision impairments than gay men, and transgender older adults have more sensory and dental impairments than their non-transgender counterparts. Older lesbians are significantly more likely to engage in heavy drinking as compared to older bisexual women (Fredriksen-Goldsen 2011; Fredriksen-Goldsen et al. 2011).

In a study of disparities and resilience among LGBT older adults, Fredriksen-Goldsen et al. found that 41 % of the participants in the project had limitations in their physical activities as a result of physical, mental, or emotional problems. Of this percentage, 21 % were using adaptive equipment. An examination of the combination of LGBT older adults with limits in physical activities and the use of adaptive equipment reveals that 47 % have a disability, including 53 % of lesbians, 51 % of bisexual women, 41 % of gay men, 54 % of bisexual men, and 62 % of transgender older adults. Collectively, LGBT elders have diagnoses of high pretension (45 %), high cholesterol (43 %), arthritis (35 %), cataracts (22 %), asthma (16 %), diabetes (15 %), hepatitis (11 %), and osteoporosis (10 %). It is unknown if the rate of Alzheimer’s disease among LGBT elders is different than the general elderly population.

The American Community Survey (ACS) is a general household survey conducted by the US Census Bureau and is designed to provide communities with reliable and timely demographic, economic, and housing information. An examination of ACS (Population Association of America 2014) data, from the 2009–2011, reveals that the prevalence of disability among older adults in same-sex relationships varies by gender and relationship type, and by type of disability . Overall, 17.5 % of older men in same-sex relationships were living with a disability compared to 20.8 % of married men and 21.5 % of unmarried men in opposite-sex relationships. Men in same-sex relationships were less likely to report difficulty in cognitive, ambulatory, self-care, and sensory functions compared to married and unmarried men in opposite-sex relationships. However, men in same-sex relationships were slightly more likely to report difficulties with independent living. On the other hand, women in same-sex relationships reported higher levels of almost all disability types compared to their married and unmarried counterparts in opposite-sex relationships, including any disability and difficulty in ambulatory, self-care, sensory, and independent living functions. The prevalence of cognitive difficulty for women in same-sex relationships was less than that of women in unmarried opposite-sex relationships, but more than that of women in married opposite-sex relationships. In summary, these data provide evidence of national disparities in disability between older adults in same-sex relationships compared to older adults in opposite-sex relationships. And, this relationship is especially strong and consistent for women (Populations Association of America).

Overall, mental health of LGBT elders is good (70.8 on a scale of 0 = very poor to 100 = excellent). In rating satisfaction with their life, lesbians report (71.8), bisexual women (65.6), gay men (71.7), bisexual men (65.6), and transgender older adults (62.7). Thirty-one percent of LGBT elders report some type of depressive symptoms, with 53 % having been told by a doctor that they have depression. Transgender older adults have the highest rate of depression (48 %), and lesbians (27 %) and gay men (29 %) have the lowest, and 24 % of LGBT older adults have been told they have anxiety (Fredriksen-Goldsen et al. 2011). Two of the most alarming mental health issues for LGBT elder are loneliness and social isolation (see Chap. 30). Both of these issues can lead to negative health consequences or be the result of chronic illness and disability . Older bisexual women and men exhibit higher rates of loneness than lesbians and gay men. The rates of neglect experienced by LGBT elders are similar to the general elderly population, and their rates of mistreatment tend to be higher (see Chaps. 16, 17, and 21 in this text). Across the categories of physical and mental health, transgender older adults fair worst than other LGB elders. The prevalence of physical and mental health problems is elevated among LGBT elders even taking into account differences in age distribution, income, and education; however, those LGBT elders with lower incomes and lower education are at more heightened risk (Fredriksen-Goldsen et al.).

Much of the sparse research that has been done on LGBT elders with disabilities has looked at either physical or mental disabilities. There is a clear lack of focus on LGBT older adults with developmental disabilities. This is especially disconcerting for two reasons. First, many persons with developmental disabilities have the same life expectancy as the general population. Second, while most people begin to experience the effects of aging in their 40s, some persons with a developmental disability may require a greater level of support at a younger age than the general population. The later reason requires more attention be given to factors associated with aging such as changes in social roles, activity levels, behavior patterns, and response to occurrences in the environment and health conditions (Connect Ability 2010). Some characteristics of aging may mask symptoms of a developmental disability and vice versa. For example, an older adult with Alzheimer’s may exhibit a lack of insight or an inability to articulate what he or she is experiencing, both of which are characteristic of cognitive impairment associated with a developmental disability and Alzheimer’s disease.

LGBT elders with disabilities and chronic conditions may find themselves facing issues of coming out or coming out again as needs for social services increase (Sue and Sue 2013). It is important for them to understand and be prepared for the potential negative responses they may receive as they complete the application process for services. For example, the answers that they provide on an application may inadvertently expose them to discrimination. Thus, LGBT elders’ application for services because of a disability may be overshadowed by a service provider’s preoccupation and bias with their sexual orientation or gender identity. Discussion Box 33.1 provides some examples of implications for practice.


Discussion Box 33.1

Implications for practice with LGBT older adults

Avoid use of heterosexist language.

Be aware if the person has competency issues.

Do not use labeling language (e.g., disabled person).

Be aware of a change in name of a transgender person.

Ask the person by what name he or she want to be addressed.

To the extent possible, give the person as much autonomy as possible.

Be aware that LGBT clients have specific concerns about confidentiality.

Recognize the historical affects of stigma related to sexual identity and age.

Be knowledgeable of the person’s support system or the need to establish one.

Understand the functional limitations of disabilities/chronic conditions for the individual.

Do not assume that the presenting problem is the result of sexual orientation, or gender identity.

Assist the person in identifying concerns that have to be addressed in the short-term and long-term (e.g., housing, end-of-life issues).

Recognize that mental health issues may be the result of stress related to homophobia/transphobia, internalized homophobia, the coming out process, or lack of support systems.

Questions

1.

What are the ways that you can prepare to address these issues?

 

2.

Do you know the resources that can assist you in supporting your efforts to work with LGBT elders with disabilities?

 

3.

How can the intersection of disability, age, and sexual identity impact service delivery?

 


Service Needs and Intervention


Disability is complex, and the interventions to overcome the challenges associated with disability are multiple and systemic, varying with the context (WHO 2011). An area of critical concern for elders is affordable housing as they age-in-place. LGBT elders identify housing as the number one priority for action in a needs assessment conducted by Senior Action in a Gay Environment (SAGE) (Funders for Lesbian and Gay Issue 2004). Moreover, housing discrimination is of primary concern, including “trepidation” about mainstream senior housing options (Knauer 2009; National Gay and Lesbian Task Force 2006). Implicit in affordability is accessible housing that will allow elders to maintain independence, quality of life, and safety in terms of both the condition of the dwelling and residential location. The ability to obtain adequate and safe housing affects all aspects of life (e.g., employment, proximity to friends and family, access to services), and the relationship between housing and other aspects of everyday life is particularly important for older persons who may be more restricted because of their mobility, income, and support systems (Equal Rights Center 2014).

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Jun 5, 2017 | Posted by in GERIATRICS | Comments Off on Disabilities and Chronic Illness Among LGBT Elders: Responses of Medicine, Public Health, Rehabilitation, and Social Work

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