Younger Onset Dementia

Abstract

This literature review focused on the experience, care, and service requirements of people with younger onset dementia. Systematic searches of 10 relevant bibliographic databases and a rigorous examination of the literature from nonacademic sources were undertaken. Searches identified 304 articles assessed for relevance and level of evidence, of which 74% were academic literature. The review identified the need for (1) more timely and accurate diagnosis and increased support immediately following diagnosis; (2) more individually tailored services addressing life cycle issues; (3) examination of the service needs of those living alone; (4) more systematic evaluation of services and programs; (5) further examination of service utilization, costs of illness, and cost effectiveness; and (6) current Australian clinical surveys to estimate prevalence, incidence, and survival rates. Although previous research has identified important service issues, there is a need for further studies with stronger research designs and consideration of the control of potentially confounding factors.

What is the impact of dementia on occupational competence, occupational participation and occupational identity for people who experience onset of symptoms while in paid employment? A scoping review

“…(Australian Institute of Health and Welfare ; McCulloch et al ., ; Ritchie et al ., ); Recommending strategies to manage decline in occupational competence through reasonable workplace adjustment (i.e. modified duties and hours, task simplification and adaptive technology) (Cox & Pardasani, ; Ritchie et al ., ); and Supporting workers with planning for, initiating and maintaining post‐retirement engagement in alternate or volunteer work, study, and new or existing hobbies (Ritchie et al ., ; Robertson et al ., ; Sansori et al ., ).…”

“…In a few cases, workers are provided with ongoing supported employment (Öhman et al ., ; Ritchie et al ., ). For those who leave work without a supported transition, occupational routines are significantly interrupted and one's sense of identity is compromised (Harris & Keady; Ritchie et al .; Sansori et al ., ; Roach, et al . 2008).…”

“…modified duties and hours, task simplification and adaptive technology) (Cox & Pardasani, 2013;Ritchie et al, 2017); and 5. Supporting workers with planning for, initiating and maintaining post-retirement engagement in alternate or volunteer work, study, and new or existing hobbies (Ritchie et al, 2017;Robertson et al, 2013;Sansori et al, 2016).…”

“…In turn, difficulty managing intrinsic physical, social, cultural, economic and political aspects of the work environment impact negatively on occupational participation (Ritchie et al, 2017;World Health Organisation, 2017). Over time, loss associated with disruption to worker roles may extend beyond loss of occupational identity, to include isolation from valued social connections, and loss of opportunity to remain engaged in other important occupational roles (McCulloch et al, 2016;Ritchie, Banks, Danson, Tolson & Borrowman, 2015;Roach et al, 2008;Sansori et al, 2016).…”

Online information and support for carers of people with young‐onset dementia: A multi‐site randomised controlled pilot study

“…Although the prevalence of YOD is much lower than that of dementia in later life, [1][2][3] it has a more severe impact on families. YOD is associated with higher frequency of behavioural symptoms 4 ; disruption of family relationships, partnership, and intimacy 5,6 ; adverse impacts on children 7 ; conflicts between caring roles and family or professional responsibilities 8 ; and economic consequences of early retirement or reduced working hours. 9 Caregivers of people with YOD report high levels of depression, stress, and burden associated with the psychosocial consequences of disease onset.…”