Table 4 Summary of characteristics and findings of included papers
Author(s), year & country | Paper type/design & population | Purpose | Findings |
|---|---|---|---|
Empirical studies | |||
Barrett et al., 2015 [31] Australia | Two empirical qualitative studies comprising in-depth interviews with: • 30 LGT (living with dementia (n = 9); same-sex partner (n = 6)) • service providers (n = 6)) Population: Lesbian, gay & transgender people | Explore the experiences & needs of LGBT people with dementia | • Many older LGBT people have lived at a time when LGBT people where criminalised & pathologised • LGBT people living with dementia do not lose their sexual orientation or gender identity, although dementia may change how sexual orientation is expressed • Dementia & associated cognitive impairment increase vulnerability to homophobic/transphobic family members, which can have adverse impact on how sexual orientation & gender identity are expressed • Loss of control over identity disclosure is an added stressor for LGBT people with dementia • Intimate relationships, friendships, & LGBT networks provide a safe space for LGBT people with dementia & may act as a buffer against discrimination • Actual & anticipated discrimination within services is a concern among LGBT people with dementia, which for some may result in resisting or avoiding care |
McParland & Camic, 2018 [30] UK | Empirical qualitative study comprising 10 in-depth interviews with: • Couples living together (n = 7). women (n = 4) men (n = 3) with same-sex partners • Gay man with dementia (n = 1) • Lesbian with close friend (n = 1) Population: Lesbian & gay people | Explore what it means for lesbian & gay people to experience dementia, & to understand these experiences within dyadic relationships | • Lesbian & gay people continue to experience homophobia & discrimination • Lesbian & gay people are subjected to a ‘double stigma’, relating to sexual orientation & dementia, which could threaten personhood • The stigma affected participants differently, where some became more isolated by choosing to manage alone while others decided to reach out & take action (e.g., by educating others) • Identity concealment decisions were shaped by anticipated & experienced discrimination • Relationships with significant others were as ‘sheltered harbour’, & important for maintaining personhood |
Westwood, 2016 [32] UK | Four main sources for data analysis: • Literature review relating to ageing, gender & sexuality • A subset of data from 60 older LGB individuals aged 60 & over (including 36 lesbian & bisexual women) • Data from Dementia Services Equality Impact Assessment conducted by the author for a local authority previously • Author’s insight Population: Lesbian & bisexual women | Explore the experiences of lesbian & bisexual women living with dementia from an intersectional lens | • Many LGB individuals are hesitant to engage with healthcare providers due to previous & current negative experiences, with implications on timely diagnosis & treatment • Lack of social support, especially access to intergenerational support • Fear of disclosing identity, especially in heteronormative formal care setting |
Non-empirical papers | |||
Adelman, 2016 [37] USA | Discussion paper Population: LGBT | Highlight the added stigma & other challenges faced by older LGBT people with Alzheimer’s diagnosis | • LGBT older people with Alzheimer’s diagnosis face double stigma & barriers to care • Older LGBT people with Alzheimer’s fear that care providers may not be open to their relationship, being devalued, & receiving a lesser quality care due to their sexual orientation & gender identity • Planning ahead is crucial for older LGBT people to avoid delay accessing services & delaying diagnosis |
Beehuspoteea & Badrakalimuthu, 2021 [34] UK | Case vignette, drawing from an observation of a transgender person with dementia Population: Transgender persons | Discuss challenges faced by transgender community in the context of dementia | • Past & present experiences of discrimination, prejudice, & stigmatisation lead to poor access & utilisation of healthcare services • Issues with gender-related behaviour among transgender people with dementia • Limited social support networks |
Cousins et al., 2020 [44] UK | Non-systematic literature review Population: LGBT+ | Produce an introductory summary of the challenges and considerations facing LGBTQ + people | • Older LGBT + people are more likely to have experienced stigma, discrimination and pathologisation of their LGBT + identity • LGBT people with dementia in care homes are at risk of discrimination • LGBT people fear accessing health services due to previous discrimination • Main concern for LGBT people with dementia is loss of self alongside a loss of LGBT identity • Older LGBT + people with dementia may live with hidden identities but out themselves due to cognitive impairments • Transgender people with dementia may experience challenges in being able to express individual gender identity • Early life memories, which become vivid as dementia progresses, might be traumatic for LGBT people • Transgender people with dementia may return to a time before they transitioned • Older LGBT people with dementia are more likely to be estranged from family of origin, with increased levels of social isolation and loneliness • LGBT + support networks are important buffers to the added stressors experienced by LGBT + people with dementia • Advance care planning may be adversely affected for LGBT + people with dementia as LGBT + significant others may be excluded from life-making legal decisions • Structuring care programmes around binary gender (male or female) undermines personhood for non-binary individuals |
Duffy & Healy, 2014 [36] Australia | A reflection using four case examples from practice. Two cases relate to gay men living with dementia Population: Gay men | Explore case examples from social work practice in health & residential care settings that highlight complexities of working with LGBTI people | • Safety issues & risk of disclosing identity • Lifetime experience of discrimination • Challenges in formal care settings include discrimination from staff & service users, & anxiety over identity disclosure • Lack of social support & familial connections • Relationships changes & loss of connection with community of choice due to dementia • Unequitable legal rights & history of oppression • Need for advance care planning |
Fredriksen-Goldsen et al., 2018 [13] USA | 1. Reviewing 10 core competencies for professional practice with LGBT older adults & families 2. Reviewing & analysing research findings from existing literature on LGBT aging & culturally competent practice in Alzheimer’s disease & dementia care Population: LGBT | Develop competencies for specialised practice with LGBT older people living with cognitive impairment & dementia, as well as their families & caregivers | • Discrimination & identity concealment places the LGBT + person with dementia at an elevated risk for adverse physical & psychosocial outcomes • LGBT older people are more likely to be estranged from family of origin, not have children, & live alone • Historical, social, & cultural context negatively impact LGBT older adults living with dementia • Need for advance care planning in the context of limited social support • LGBT people exhibit strength in their ability to maintain a positive sense of identity & adapt to adversity |
Harper, 2019 [38] UK | Discussion paper Population: LGBT+ | Explore the needs of older LGBT + people with dementia, the role of legislation & regulation, & how healthcare professionals can provide support | • LGBTQ + people with dementia experience unequal rights, microaggression, & overlapping stigma, resulting in loneliness & lack of social support • Increased fear & self-regulation may be more common among older LGBTQ + people with dementia due to generational homophobia, leading to identity concealment • Older trans people with dementia face additional challenges related to recognising & maintaining a gender identity consistent with physical appearance & gender expression • Sexual development is often an unmet need for LGBTQ + people with dementia |
Le Berre &Vedel, 2020 [42] Canada | Commentary paper Population: LGBT+ | How national & provincial strategies related to Alzheimer disease & related disorders can be inclusive | • Stigma & discrimination resulting in limited access services • Fear of disclosing identity due to previous & current negative experiences • Fear of mistreatment & discrimination in formal care settings, especially for the transgender community • Experience of double stigma of dementia & sexuality |
Marshall et al., 2015 [33] Canada | Case report, drawing from the biographical details and real-life clinical scenario of a transgender person with dementia Population: Transgender | Highlight the challenges encountered by a transgender person when they are no longer able to express a consistent gender preference due to dementia | • Gender identity ambivalence or ‘confusion’ due to cognitive impairment associated with dementia, creates ‘’challenges’’ to staff • Inconsistent gender -related behaviours can magnify social exclusion & isolation, especially in formal care settings • Families of origin can infringe on gender expression |
McGovern, 2014 [43] USA | Non-systematic literature review Population: LGBT | • Review the available knowledge on the experiences of older LGBT people with dementia • Promote care practices tailored to the needs & expectation of older LGBT people with dementia | • Loss of a LGBT identity coupled with a loss of self is a common concern for older LGBT people with dementia, rendering the LGBT individual doubly invisible • Life course events of discrimination, lack of recognition & rights, & personal histories of activism (e.g., Stonewall riots, Gay Rights movement) impact on current lived experience & political identity of older LGBT people with dementia • Cognitive impairment associated with dementia may result in forced disclosure of a LGBT identity, rendering the LGBT person with dementia more vulnerable to discrimination • LGBT support networks provide psychological safety |
Monks & Shaw, 2017 [39] UK | Discussion paper Population: LGBT | • Explore the issues & needs of LGBT people with dementia • Feedback from a workshop the authors ran to capture ideas for best practice related to LGBT people with dementia | • LGBT people face double discrimination, relating to their sexual & gender identify, & dementia • LGBT people with dementia are more likely to live alone, & less likely to have children • LGBT people with dementia are more likely to rely on formal care compared to heterosexual people • Families of origin may impede affirming-care for the LGBT person with dementia |
Peel & Harding, 2016 [40] UK | Discussion paper drawing on three case examples Population: LGBT | Explore sociolegal needs & challenges relating to LGBT people with dementia | • Despite legal change protecting LGBT rights in the UK, discriminatory & prejudice practices still exist • Older LGBT people with dementia are likely to conceal their identity due to previous negative experiences & fear of discrimination • Older LGBT people are more likely to be admitted to formal care settings due to lack of familial support • Family of choice may be excluded from being involved in LGBT older adult lives by formal care services • Current heteronormative models of care hinder identity expression & recognition of family of choice for older LGBT + people with dementia • Advance care planning can protect facilitate identity & protect LGBT older people with dementia from homophobia & transphobia |
Price, 2008 [41] UK | Discussion paper, which forms part of an ongoing small-scale, qualitative study Population: Gay & lesbian people | Explore the intersection of sexually minoritized identity, ageing, & cognitive impairment & the challenges this poses for social work professionals | • Psychological & personal safety is jeopardised for gay & lesbian people with dementia, due to loss of personal agency & control • Historical context relating to oppression, stigma & discrimination for lesbian & gay people may impact on current experiences • The heteronormative models of support hinder lesbian & gay people from raising issues & needs important to them |
Scharaga et al., 2021 [35] USA | Case report, drawing from a real-life clinical scenario of a transgender person with dementia Population: Transgender persons | Evaluate whether applying normative data for men or women in neuropsychological evaluation for a transgender individual result in significantly different standard scores | • Identity concealment may increase distress among transgender older adults • The transgender case report highlighted social isolation, loneliness, limited social support, rejection from family, ‘sadness’, & anxiety among the transgender individual • Transgender individuals are more vulnerable to making poor health & financial choices due to lack of social support, avoidant coping strategies, discrimination, & limited access to care |