Selfhood in younger onset dementia: Transitions and testimonies

Abstract

Younger people with dementia and their carers are an overlooked population for research, policy and practice attention. In this study, data were collected from both the United States and the UK in order to explore the meaning and construction of selfhood and identity. The US data collection included in-depth interviews with 23 people diagnosed with younger-onset dementia, while the UK data collection comprised 15 face-to-face interviews with younger carers of younger people with dementia; all carers were/had been caring for a younger person with dementia diagnosed through the DSM-IV-R criteria. A grounded theory analysis of the data resulted in the emergence of five themes to explain the interview data, these were: (1) identity as a worker; (2) identity of abandoned individual; (3) sexual identity; (4) family identity; and (5) identity as an individual engaged in living. Additional research is necessary to further develop the attributes and application of these identity profiles.

Managing life-altering situations: A qualitative longitudinal study of the experiences of people with memory disorders and their family caregivers

“…In these respects, our results support previous indications that managing identity and sense of self is a significant coping task for the PMD [4,11,15,21] and that adaptation to new roles and responsibilities of caregiving poses challenges for family caregivers (FCs) [5,8,10,12,41] . The processes of adjusting to altering self and adopting the role of caregiver were intertwined as interpersonal processes comprising a continuum of adjustment and distress.…”

“…Previous research shows how memory disorders change family roles and dynamics [5,[8][9][10] . Interestingly, people with early-onset memory disorders and their families face slightly different challenges from those who are older at the time of onset [11][12][13][14] . Previous studies concerning the subjective experiences of PMDs focus on their challenges, coping strategies [15][16][17][18] , the diagnosis' impact on their selfhood and identity [11,[19][20][21] , subjective reality [22,23] and dignity [24,25] .…”

“…Interestingly, people with early-onset memory disorders and their families face slightly different challenges from those who are older at the time of onset [11][12][13][14] . Previous studies concerning the subjective experiences of PMDs focus on their challenges, coping strategies [15][16][17][18] , the diagnosis' impact on their selfhood and identity [11,[19][20][21] , subjective reality [22,23] and dignity [24,25] . Issues relevant to family members' experiences that have been studied include changes in relations as well as caregivers' challenges, well-being, burden and coping mechanisms [8,[26][27][28][29] .…”

“To be, or not to be”: experiencing deterioration among people with young-onset dementia living alone

“…Additionally, people living alone with dementia have significantly more unmet needs (Miranda-Castillo, Woods, & Orrell, 2010). People with YOD need support during the whole course of the disease (Harris & Keady, 2009; Horndalsveen, 2017; Roach, Keady, Bee, & Hope, 2009), yet few services supporting YOD have been established (Chemali, Schamber, Tarbi, Acar, & Avila-Urizar, 2012; Gjøra, Eek, & Kirkevold, 2015). …”

‘Every time I see him he’s the worst he’s ever been and the best he’ll ever be’: grief and sadness in children and young people who have a parent with dementia

“…1 This is significant as the limited evidence indicates that parental dementia in families with children and young people causes greater social and psychological upset, damage, tension, hardship and family break up than it does when children are adult (Allen, Oyebode, & Allen, 2009;Barca, Thorsen, Engedal, Haugen, & Johannessen, 2014;Denny et al, 2012;Gelman & Rhames, 2016;Harris & Keady, 2009;Hutchinson, Roberts, Kurrle, & Daly, 2014;Johannessen, Engedal, & Thorsen, 2015;Luscombe, Brodaty, & Freeth, 1998;Millenaar et al, 2014;Roach, Keady, Bee, & Williams, 2013;Robertson, 1996;Rosenthal Gelman & Greer, 2011;Svanberg, Stott, & Spector, 2010, 2011.…”