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ealth and health care are provincial responsibili- ties and, since 1999, all 10 Canadian provinces have developed or are currently developing plans for the management of Alzheimer disease and related disorders. These plans are based on the findings of the Canadian Consensus Conference on the Diagnosis and Treatment of Dementia and put primary care at the cen- tre of their recommendations, often including specific actions for family physicians to take.1 It is within this con- text that the National Strategy for Alzheimer’s Disease and Other Dementias Act (Bill C-233) was assented to on June 22, 2017.2 This national Alzheimer disease strat- egy is currently being developed and will complement provincial plans. It will have a comprehensive approach addressing education, awareness, destigmatization, and other issues crossing provincial boundaries.3 The devel- opment of the national Alzheimer disease strategy and provincial plans provides an enormous opportunity for primary health care and family physicians to improve dementia care for all, particularly for sexual minorities.It was recently estimated that 13% of Canadians iden- tify as lesbian, gay, bisexual, trans, queer or questioning, or two-spirited, or as members of related communities (LGBTQ2+).4 Explanations of these identities are pro- vided in Box 1.5-8 As more and more people will live with dementia given the aging of the population,9 the number of dementia patients who are sexual minori- ties will increase accordingly. Further, as some common risk factors for developing dementia are more prevalent among LGBTQ2+ communities, the numbers might be even higher.10 Dementia is known to have a profound effect on many aspects of the lives of affected patients and the people in their support systems.11 Recent evi- dence revealed the heightened risk of LGBTQ2+ older adults with dementia having unmet needs.10
The issues surrounding LGBTQ2+ communities have now become a priority for the Canadian government. In recent years, the government has taken meaningful steps toward the inclusion of the LQBTQ2+ community, notably through its formal apology in 2017 for Canada’s role in the systemic oppression of, criminalization of, and violence toward LGBTQ2+ communities12; and the appointment of Randy Boissonnault as Special Advisor on LGBTQ2+
issues.13 While the Canadian Consensus Conference on the Diagnosis and Treatment of Dementia did not address LGBTQ2+ persons’ specific needs, the national Alzheimer disease strategy now has an important opportunity to
reflect Canada’s stance on the inclusion of sexual minori- ties and could act as a federative movement to improve dementia care for all Canadians. To date, only one pro- vincial plan has mentioned the additional challenges faced by LGBTQ2+ older adults, and none included concrete actions to take that reflect LGBTQ2+ realities. Additionally, Canadian primary care physicians recently expressed feel- ings of being ill-equipped or uninformed about the needs of sexual minorities.14-16 Yet they are called to play an increas- ingly important role in the care of LGBTQ2+ patients.14,17 It is thus essential to review the specific needs of this popu- lation regarding dementia and dementia care in order to adequately include these needs in primary care.
To gain more insight into these specific needs, we conducted a review by searching PubMed and Google Scholar using terms related to LGBTQ2+, primary care, and dementia, and targeting a range of publication years. Based on the objectives of the national strat- egy,2 we determined the main challenges facing and key actions required to meet the needs of older LGBTQ2+
persons in primary care.
Developing clinical diagnostic and treatment guidelines
Limited access to assessment, diagnostic, treatment, and management services was identified as an important
Diversity considerations in
Alzheimer disease and related disorders
How can our national and provincial strategies be inclusive of sexual minorities?
Mélanie Le Berre MSc PT Isabelle Vedel MD-MPH PhD
Box 1. Community definitions
Here are the definitions we used for the following community identities:
Bisexual refers to “people attracted to more than one sex and/or gender. This may include those who self-identify as bisexual, queer, pansexual, omnisexual, two-spirited, fluid, or who choose another non-heterosexual identity label.”5 Trans refers to “a diverse group of people whose gender identity or expression diverts from prevailing societal expectations. Trans includes transsexual, transitioned, transgender, and genderqueer people, as well as some two-spirit people.”6
Queer refers to many identities and is often context dependent. It is sometimes used as an umbrella term for
“minority sexual orientations and gender identities.”7 Two-spirited refers to “a person who identifies as having both a masculine and a feminine spirit, and is used by some Indigenous people to describe their sexual, gender and/or spiritual identity.”8
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issue for people living with dementia and their caregiv- ers.18 Access could be even more limited for LGBTQ2+
individuals, as the lack of trust in the health care system and the fear of being denied or provided with inferior health care remain a concern.10,19-22 The fear of disclo- sure of their identity also creates anxiety, especially with the reduced ability to manage sensitive information owing to dementia.23
To improve access to health care for sexual minori- ties, experts advocate for education and training pro- grams for relevant health care professionals and staff, possibly targeting contexts with higher needs.10,20,22,24-28
A few programs and training kits for the inclusion of LGBTQ2+ older adults in health care services already exist, such as well-being charters and printed guides.25,29 However, we found no clinical guidelines or programs specifically for LGBTQ2+ older adults with Alzheimer disease. Yet some recently published material from Alzheimer disease associations in various countries spe-
cifically addresses LGBTQ2+ persons living with demen- tia.30-32 These resources acknowledge the different lived experiences of LGBTQ2+ persons and the informal sup- port systems they might have. They also referred to LGBTQ2+ specific or LGBTQ2+ friendly resources and provided important advice, such as recording important preferences, including pronouns and clothing, in case of later incapacity.30-32 We need to refine existing training programs to reflect best practices, particularly the use of appropriate language and pronouns,14 and to include the newly available resources and clinical literature.
Assessing and disseminating best practices
As local projects are initiated, such as formal policy changes toward more inclusive clinical record systems or the creation of educational material specifically for health care providers and residents in long-term care institu- tions,33 the time could be ripe for a national discussion on how to scale up successful initiatives. For example, a 1.5-hour LGBTQ2+ sensitivity training program is avail- able for free in Quebec and has already provided more than 50 individualized training sessions to organiza- tions.34 Particular attention should also be given to proj- ects such as the Diversity 101 program, which aims to facilitate the transition to a long-term care facility for LGBTQ2+ older adults and will be launched in 3 Prince Edward Island facilities in the upcoming months.33
Best practices for LGBTQ2+ older adults would be per- son centred and adapted to the context of care, whether the person is living at home or in long-term care.10,35
First, in the context of community-dwelling LGBTQ2+
older adults, we need to take into account the needs of their informal support resources. Sexual minorities are at a greater risk of social isolation than the gen- eral population is,10,19,36 as many are estranged from their families of origin.20 As a result, informal support is often provided by a “chosen family” and partners,37
who might not have access to the same resources or feel welcomed into the same spaces as other caregiv- ers would be.19,20 It thus remains crucial to recognize the unique importance of chosen families for LGBTQ2+
older adults.25 Also, when entering the private space of a home, special care should be taken to provide safe and supportive interactions in which LGBTQ2+ older adults feel comfortable to disclose their identities if and when they choose.23 Evidence suggests that these soft skills and cultural sensitivity should be introduced early as a compulsory part of the medical training of future health care professionals.17,38
Second, LGBTQ2+ older adults often fear having to leave their home for a long-term care facility, as they worry about discrimination and mistreatment.39 This is especially true for trans patients with dementia receiv- ing intimate care or remembering their past lived under another gender identity.39
In response, some suggested developing specific LGBTQ2+ long-term care spaces.25,39,40 Others preferred mainstream care but with clear inclusive practices,20,23,25,40
such as professionals collecting information in an adapted or sensitive manner,41 the use of unbiased lan- guage,10,20,27 and the inclusion of LGBTQ2+ educational material or representation.27,30,42 Establishing partnerships with and involving LGBTQ2+ representatives in health care organizations might be the way to achieve this.28
Other national objectives
The national strategy officially identified 7 distinct objec- tives.2 In addition to the 2 objectives centred on the delivery of care described in the previous sections, the national strategy also aimed to create nationwide objectives, encourage greater investments in research, coordinate with international bodies, develop and dis- seminate information, and make recommendations for standards of dementia care. These objectives widen the reach of the national strategy beyond primary care to include other levels of care, research communities, international bodies, and even the general population.
Indeed, beyond the age-based stigmatization reported in LGBTQ2+ communities,43 LGBTQ2+ individuals liv- ing with dementia reported experiencing the “‘double stigma’ of dementia and sexuality.”24 Campaigns target- ing sexual minorities and the general population could thus have a valuable effect.
Conclusion
This overview of the 7 national objectives highlighted impor- tant elements to take into consideration for the strategy to be sensitive to the realities of older sexual minorities with Alzheimer disease and related disorders. Its conclusions were included in the official Canadian Academy of Health Sciences report.11 As the Canadian government is taking concrete action to assert its stance on the inclusion of sexual minorities, the timing is right to include LGBTQ2+
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Diversity considerations in Alzheimer disease and related disordersneeds in the new national Alzheimer disease strategy.
Canada might be the 30th country to develop a national strategy,3 but it will be the first to include formal diversity measures. As the research in this field is still growing,44 this could be the first step in developing specific stan- dards and accreditation procedures.
Ms Le Berre is a research assistant in the Department of Family Medicine at McGill University in Montreal, Que, and in the Lady Davis Institute at the Sir Mortimer B. Davis–Jewish General Hospital, and a doctoral student in rehabilitation science at the University of Montreal. Dr Vedel is a public health physician and Associate Professor in the Department of Family Medicine at McGill University and Investigator in the Lady Davis Institute.
Competing interests None declared Correspondence
Dr Isabelle Vedel; e-mail isabelle.vedel@mcgill.ca
The opinions expressed in commentaries are those of the authors. Publication does not imply endorsement by the College of Family Physicians of Canada.
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This article has been peer reviewed. Can Fam Physician 2020;66:244-6 La traduction en français de cet article se trouve à www.cfp.ca dans la table des matières du numéro d’avril 2020 à la page e115.
