Towards integrated and sustainable post-diagnostic dementia support: Insights from care partners in the Australian Capital Territory
1
Centre for Ageing Research and Translation, University Of Canberra, Canebrra, Australia
Popul. Med. 2026;8(Supplement Supplement 1):
ABSTRACT
BACKGROUND:
Despite growing recognition of the importance of post-diagnostic support for people with dementia, service delivery in the Australian Capital Territory (ACT) has been reported as fragmented and constrained by system- and individual-level barriers. This study examined the lived experience and perceptions of care partners of people with dementia regarding service accessibility and adequacy to inform person-centered and sustainable post-diagnostic support.
METHODS:
An explanatory sequential mixed-methods design was employed. A cross-sectional survey explored the accessibility, availability, and responsiveness of dementia support services using a 69-item questionnaire. Purposive semi-structured interviews subsequently explored key issues raised in the survey. Quantitative data were descriptively analysed, while qualitative data underwent inductive content analysis. Findings were integrated to provide a comprehensive understanding of post-diagnostic support in the ACT.
RESULTS:
Care partners (n=86; 75.6% female) encountered access barriers, notably protracted and distressing diagnostic delays exceeding six months for 46.5% of people with dementia. Financial constraints were reported by 75.0% of care partners, with services described as unaffordable which led to service discontinuation. System navigation was a considerable barrier for 69.4% of participants, who experienced difficulty with the aged care system and understanding available services. While early-stage supports from dementia organisations were valued by interviewees (n=13; 53.8% female), responsiveness declined as needs intensified, with 60.8% of survey respondents reporting insufficient tailored support to accommodate complex and evolving needs.
CONCLUSIONS:
The findings advocate for a public health paradigm shift toward affordable, integrated post-diagnostic support tailored to the evolving needs of people with dementia and their care partners. Strengthening service coordination, funding sustainability, and workforce capacity aligns with priorities of the WHO’s Global Action Plan on the Public Health Response to Dementia 2017-2025, including timely diagnosis, person-centered care across the continuum, structured care partner support (training, respite, psychological resources), and recognition of dementia as a public health priority.
Despite growing recognition of the importance of post-diagnostic support for people with dementia, service delivery in the Australian Capital Territory (ACT) has been reported as fragmented and constrained by system- and individual-level barriers. This study examined the lived experience and perceptions of care partners of people with dementia regarding service accessibility and adequacy to inform person-centered and sustainable post-diagnostic support.
METHODS:
An explanatory sequential mixed-methods design was employed. A cross-sectional survey explored the accessibility, availability, and responsiveness of dementia support services using a 69-item questionnaire. Purposive semi-structured interviews subsequently explored key issues raised in the survey. Quantitative data were descriptively analysed, while qualitative data underwent inductive content analysis. Findings were integrated to provide a comprehensive understanding of post-diagnostic support in the ACT.
RESULTS:
Care partners (n=86; 75.6% female) encountered access barriers, notably protracted and distressing diagnostic delays exceeding six months for 46.5% of people with dementia. Financial constraints were reported by 75.0% of care partners, with services described as unaffordable which led to service discontinuation. System navigation was a considerable barrier for 69.4% of participants, who experienced difficulty with the aged care system and understanding available services. While early-stage supports from dementia organisations were valued by interviewees (n=13; 53.8% female), responsiveness declined as needs intensified, with 60.8% of survey respondents reporting insufficient tailored support to accommodate complex and evolving needs.
CONCLUSIONS:
The findings advocate for a public health paradigm shift toward affordable, integrated post-diagnostic support tailored to the evolving needs of people with dementia and their care partners. Strengthening service coordination, funding sustainability, and workforce capacity aligns with priorities of the WHO’s Global Action Plan on the Public Health Response to Dementia 2017-2025, including timely diagnosis, person-centered care across the continuum, structured care partner support (training, respite, psychological resources), and recognition of dementia as a public health priority.
| eISSN: | 2654-1459 |
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