The impact of young onset dementia on the family: a literature review

Abstract

The studies reviewed reveal a number of negative outcomes for the individual and carers, and highlight the need for further research.

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.…”

“…Younger adults consider the experience, involving lifestyle changes and new roles, a more significant shift than older adults [12][13][14] . Memory disorders bring physical and cognitive decline, fear of losing control over one's life, and the notion of imminent mortality, all of which are typically associated with old age [50] .…”

“…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] .…”

Age-appropriate services for people diagnosed with young onset dementia (YOD): a systematic review

“…They also need to negotiate changing family dynamics with a particular focus on children and teenagers (Chow, Pio, & Rockwood, 2011;Gibson, Anderson, & Acocks, 2014;Hutchinson, Roberts, Daly, Bulsara, & Kurrle, 2016;Johannessen, Bruvik, & Hauge, 2015;Lockeridge & Simpson, 2013;Morhardt et al, 2015;P. Roach & Drummond, 2014;Shnall, 2015;Svanberg, Spector, & Stott, 2011;Thompson, 2011), accommodate changing care needs along the disease trajectory (Bakker et al, 2013;Bakker et al, 2010) and need to seek financial and legal advice as employment is discontinued and spouses give up work to become the main caregiver or take on work to compensate for lost income (Alzheimer's Society, 2015;Chaplin & Davidson, 2016;Picard, Pasquier, Martinaud, Hannequin, & Godefroy, 2011;Ritchie, Banks, Danson, Tolson, & Borrowman, 2015). The need for age-appropriate service design for people diagnosed with YOD has been discussed extensively in a number of comprehensive, non-systematic literature reviews of YOD (Baptista et al, 2016;Beattie et al, 2002;Cabote, Bramble, & McCann, 2015;Millenaar et al, 2016;Richardson et al, 2016;Sansoni et al, 2016;Sansoni et al, 2014;Westera et al, 2014), reports (Austin A, 2016;Brown et al, 2012;Clayton-Turner et al, 2016) and papers across various disciplines (Armari, Jarmolowicz, & Panegyres, 2013;Bakker et al, 2014;Bakker et al, 2010;Ducharme, Kergoat, Antoine, Pasquier, & Coulombe, 2014a;Ducharme et al, 2014b;…”

‘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

“…There is a twofold aim and purpose. Firstly to address what has been identified (Brown & Kleist, 1999;Green & Kleissen, 2013;Svanberg et al, 2011;van Vliet, de Vught, Bakker, Koopmas, & Verhey, 2009) as a significant gap in the research and literature around living with dementia by focusing on the perceptions and experiences of children and young people who have a parent with YOD. The paucity of research translates into an extremely limited range of services and informed resources targeted at supporting these children and young people.…”