Investigating the lived experience of LGBT+ people with dementia and their care partners: a scoping review

Dementia, a global health priority, poses a disproportionately high risk to lesbian, gay, bisexual and trans plus (LGBT+)/gender and sexuality diverse people. Despite this, little research has explored the lived experience of LGBT+ people with dementia or their care partners. This scoping review aims to understand what the literature reveals about their experiences, the ways in which their lives have been investigated, to inform future research, policy and practice. Using an established scoping review methodology, we identified seven papers that reported empirical research on the lived experience of LGBT+ people with dementia and their care partners. Only a single study reported on in two of the papers included people who were trans. This in itself reveals how rarely LGBT+ people are asked to speak about how dementia has shaped their lives in academic research. Our reflexive thematic analysis indicates that LGBT+ people with dementia and their care partners endure overlapping forms of disadvantage. This results in heightened experiences of fear and discrimination, lack of services and compounded social isolation. Importantly, while dementia was embodied as interference and loss by LGBT+ people, it was their gender and sexuality differences that provided solace, even in the face of disadvantage. Importantly, people's relationships with LGBT+ identities were framed as fundamental for safety, resilience and wellbeing, rather than a complicating or confounding factor in living with dementia

The meaning of home when you don\u27t live there anymore: Using body mapping with people with dementia in care homes

The significance of home is broadly recognised as representing selfhood, safety and autonomy. For older people, especially those with dementia, the ability to age in place at home can be threatened by a necessary move into a care home. Home has heightened importance for people with dementia. We know most people want to stay in their own homes, but there is limited research which explores what home means for people with dementia when they move into care homes. Based in a care home in regional New South Wales, Australia, this study used the arts-based method, body mapping, to explore what home meant to people with dementia and/or cognitive impairment. Seven body maps were co-created by current residents (four), family members and supporters (six) and researchers (three). The findings of the body-mapping process highlighted that home is much more than a physical location. Home meant having the ability to carry out practices and rituals, use objects, maintain relationships and experience sensations that are personally meaningful, and which differ from one person to the next. Their body maps revealed that in care homes, people could not \u27do home\u27 anymore because many of the practices, objects, people and places that mattered to them were no longer accessible. Body mapping was a useful method that facilitated the exploration of a holistic expression of home that would not have been possible with more traditional methods. For people with dementia, home was not only embodied and spatial, but also temporal, helping us to understand the ways in which care homes might facilitate a greater sense of home for people with dementia

Key characteristics of the refugee journey for Iraqi and Syrian family members who support their children or siblings with disability

Refugees with disability and their families are increasingly resettled in Australia but remain an under-researched group. As such, this study aimed to understand experiences of disability for humanitarian migrants who support a family member with a disability. Interviews took place with 10 family members from Iraqi and Syrian refugee backgrounds living in Australia, whose children or siblings had disability. BenEzer and Zetter’s conceptualisation of the refugee journey was used to analyse four themes of these families’ experience: (1) Temporal Characteristics: (2) Drivers and Destinations; (3) Process/Content of the Journey; and (4) Characteristics of People. Supporting a person or persons with disability was a defining feature of the participants’ journeys across all themes, with stigma and difficulties in accessing disability support being consistent throughout. The journeys were multifaceted and ongoing, particularly in response to gaps in Australian disability support, and demonstrated the agency and advocacy that families utilised to support the best lives of those they love. Points of interest Few researchers have tried to understand what the refugee journey is like for families where one or more member has a disability. We interviewed Iraqi and Syrian people who came to Australia as refugees. Each of them supported at least one family member with disability. Disability was very important at every part of their refugee journey. As well as the physical journey of coming to Australia as refugees, participants spoke about how they gained new knowledge and skills in Australia to become better advocates for their family members. The participants highlighted gaps in Australian disability support services, which future research should study