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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.

Field testing of the ACCOM shows promising results. More extensive trials of the measure are planned across Australia.

This study used a qualitative, cross‐sectional design to address a gap in understanding the perspectives and practices of care planners and case managers in supporting consumer‐ directed care (CDC) for community dwelling people living with dementia. Semi‐structured telephone interviews were conducted with a convenience sample of n = 16 planners and managers from seven providers of the Australian home care packages (HCP) program in NSW (Australia). All interviewees described the aspirations of supporting choice within CDC as synergistic with their values and with person‐centred care. Some described new flexibilities within the more open‐ended planning conversations enabled by CDC. However, most acknowledged their capacity to enable choice for clients with dementia was limited by the capped care budgets, as well as the skills and time needed to support choice and decision‐ making. Organisational practice changes associated with the shift to a market‐based system were also perceived as limiting the capacity to support choices. Reducing centralised systems, increasing individual budgets and improving staff capacity to support decision‐making by people with dementia may help to improve this situation. However, results suggest a deeper need to re‐evaluate whether the CDC model is the most appropriate for supporting the rising numbers of people with dementia to age well in place.

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