Further development needed: models of post-diagnostic support for people with dementia

Low, Lee‐Fay; Gresham, Meredith; Phillipson, Lyn

doi:10.1097/yco.0000000000000848

Cited by 14 publications

(9 citation statements)

References 48 publications

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“…They specifically wanted earlier information on what symptoms to expect, how to manage them when they arise, and an annual review. These findings are similar to other studies investigating priorities for post-diagnostic support following a dementia diagnosis [ 39 , 40 ] and lend further support to efforts to design more responsive services [ 41 , 42 ]. Even in cases, where post-diagnostic support was perceived to be inadequate, participants described how the early knowledge that the person with dementia’s symptoms are caused by dementia can help them to better understand that person and prepare for their future caregiving role.…”

Section: Discussionsupporting

confidence: 87%

A qualitative study of informal caregiver perceptions of the benefits of an early dementia diagnosis

Couch,

Co,

Albertyn

et al. 2024

BMC Health Serv Res

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Background Current and former dementia policies in the United Kingdom (UK) recommend diagnosing dementia early, or as close to the onset of symptoms as possible. Informal caregivers play an important role in initiating the diagnostic process and providing support to people living with dementia. Therefore, this study aimed to explore caregiver perceptions of the benefits of an early diagnosis. Methods We conducted semi-structured interviews with 12 current and former informal caregivers to people with dementia in the UK in 2020. We analysed the interviews using thematic analysis. Results Benefits of an early diagnosis included: (1) protecting the person with dementia from financial or physical harm, (2) timely decision-making, and (3) access to services and treatments following a diagnosis. We identified three conditions necessary for the benefits of an early diagnosis to be felt: (1) adequate prognostic information, (2) someone to advocate on behalf of the person with dementia, and (3) a willingness to seek and accept the diagnosis. Conclusions In this study, we identified how diagnosing dementia close to the onset of symptoms could be beneficial and the conditions necessary for these benefits to be felt. The findings highlight the importance of an early diagnosis for enabling people with dementia and caregivers to make practical arrangements and to access services. Further research is needed to build on the findings of this study by exploring the perspectives of people with dementia and by including a larger, more diverse sample of caregivers.

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Section: Discussionsupporting

confidence: 87%

A qualitative study of informal caregiver perceptions of the benefits of an early dementia diagnosis

Couch,

Co,

Albertyn

et al. 2024

BMC Health Serv Res

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“…6 To achieve this, greater multidisciplinary involvement and a shift towards community-based services is necessary, as recognised in the Australian healthcare system. 1 , 37 Indeed, the majority (about 75%) of people with dementia live in the community instead of moving to residential aged care. They mainly rely on informal care provided by their family members or friends to be able to remain living at home.…”

Section: Discussionmentioning

confidence: 99%

“…The types of services and professionals increases every year and now include short-term support worker, ongoing support worker, centre-based support, primary care management, specialist dementia clinics or home hospital care. 1 , 2 …”

Section: Introductionmentioning

confidence: 99%

The Integrated Atlas of Dementia Care in the Australian Capital Territory: A Collective Case Study of Local Service Provision

Tabatabaei-Jafari,

Furst,

Bagheri

et al. 2024

Health�Serv�Insights

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Background: This study evaluates the dementia care system in a local area and aimed to include all specialised services designed to provide health and social services to people with dementia or age-related cognitive impairment, as well as general services with a high or very high proportion of clients with dementia. Methods: The study used an internationally standardised service classification instrument called Description and Evaluation of Services and DirectoriEs for Long Term Care (DESDE-LTC) to identify and describe all services providing care to people with dementia in the Australian Capital Territory (ACT). Results: A total of 47 service providers were eligible for inclusion. Basic information about the services was collected from their websites, and further information was obtained through interviews with the service providers. Of the 107 services offered by the 47 eligible providers, 27% (n = 29) were specialised services and 73% (n = 78) were general services. Most of the services were residential or outpatient, with a target population mostly of people aged 65 or older, and 50 years or older in the case of Aboriginal and Torres Strait Islander Australians. There were government supports available for most types of care through various programmes. Conclusions: Dementia care in the ACT relies heavily on general services. More widespread use of standardised methods of service classification in dementia will facilitate comparison with other local areas, allow for monitoring of changes over time, permit comparison with services provided for other health conditions and support evidence-informed local planning.

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“…The integrated model of care suggested by Low et al (2023) provides a valuable guide for post-diagnostic support that could be used in memory clinics until the changes proposed in this study are implemented. It is clear that public metropolitan clinics in Australia are developing an integrated model of care using local resources.…”

Section: Discussionmentioning

confidence: 99%

Enhancing post-diagnostic care in Australian memory clinics: Health professionals’ insights into current practices, barriers and facilitators, and desirable support

Pavković,

Goldberg,

Farrow

et al. 2023

Dementia

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Introduction Providing integrated and evidence-based support to individuals and families following a diagnosis of dementia is essential in order to optimise their quality of life and assist them to live well. Memory clinics provide multidisciplinary services specialising in the assessment and post-diagnostic treatment of people with dementia. This study sought to identify current practices, barriers and facilitators to provision of postdiagnostic support and to obtain health professionals’ opinion of ideal post-diagnostic support to be offered in Australian memory clinics. Methodology This was a cross-sectional qualitative exploratory study. Data was collected from health professionals familiar with the process of diagnosis and post-diagnostic support through two expert panel meetings ( n = 22). In addition, 5 focus groups ( n = 22) were conducted including health professionals who are employed in Australian memory clinics. Data was collected between October 2020 and November 2021. Reflexive thematic analysis was undertaken. Results Seven themes and three subthemes were identified under the three topics: Current Practices, Barriers and Facilitators, and Desirable Support. Themes relating to Current Practices were: Tailored Communication and feedback about diagnosis; Prescription of medications and follow-up; and Referrals to health and community services. Themes relating to Barriers and Facilitators were: The structure of the current system; Lack of funding; Lack of resources; Call for government investment. Themes relating to Desirable support were: A key/single point of support; Cognitive interventions; and Counselling and education. Conclusion Post-diagnostic support in Australian memory clinics focused primarily on ensuring people understood their diagnosis, information about postdiagnostic support was provided, and dementia medications were prescribed. There were notable differences in practices in metropolitan compared to regional areas. A key concern was the need for increased funding, particularly to support the establishment of a single point of contact to facilitate continuity of care.

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Further development needed: models of post-diagnostic support for people with dementia

Cited by 14 publications

References 48 publications

A qualitative study of informal caregiver perceptions of the benefits of an early dementia diagnosis

A qualitative study of informal caregiver perceptions of the benefits of an early dementia diagnosis

The Integrated Atlas of Dementia Care in the Australian Capital Territory: A Collective Case Study of Local Service Provision

Enhancing post-diagnostic care in Australian memory clinics: Health professionals’ insights into current practices, barriers and facilitators, and desirable support

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