No fuss please! I’m deafblind: a personal point of view and some friendly suggestions

Abstract

Purpose This paper aims to offer practical suggestions as to factors needing consideration when meeting, interacting with or assessing the needs of an older person living with acquired deafblindness. Design/methodology/approach The paper’s author draws on his personal experience of living with acquired deafblindness to offer practical suggestions. Findings This paper offers an experiential definition of acquired deafblindness, before providing practical suggestions related to engaging with deafblind people, distinguishing between acquired deafblindness and cognitive decline, and assessing hearing and sight levels. Originality/value There is a paucity of literature on the lived experience of older people living with acquired deafblindness. This paper offers both a unique insight into this experience combined with practical suggestions for those in contact with older deafblind people.

Patient and public involvement and engagement with underserved communities in dementia research: Reporting on a partnership to co‐design a website for postdiagnostic dementia support

“…9,10 There has also been a challenge to represent the voices of traditionally underserved groups within dementia research, 11,12 which has resulted in neglecting the distinct needs of such communities in service design, provision and improvement. 13 Some unanswered community-relevant research questions include how to address barriers of South Asian communities to seek support and access dementia services, 14 how to ensure that dementia information is accessible to deafblind users, 15 or how to engender culture-relevant principle of person-centred care to support lesbian, gay, bisexual, transgender, queer+ (LGBTQ+) people with dementia and their partners/families of choice. 16 Through an ethical and human rights standpoint, there is a need to fill in this gap, by embracing collaborative approaches and appreciating the benefits of undertaking PPIE with traditionally underserved communities in dementia research.…”