Providing informal care to a person living with dementia: the experiences of informal carers in Australia

Engel, Lidia; Loxton, April; Bucholc, Jessica; Muldowney, Anne; Mihalopoulos, Cathrine; McCaffrey, Nikki

doi:10.1016/j.archger.2022.104742

Cited by 13 publications

(8 citation statements)

References 31 publications

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“…Australia is a large continent with a small population, 80% of which is located primarily in five major cities. Similar to other countries, the incidence of dementia in Australia is increasing [ 26 ], and there is a demand for unpaid carers that corresponds to a shortage of paid carers [ 27 ]. Approximately one third (36%) of Australian people with dementia are living in the community, and just over a half (55%) are receiving support from paid and unpaid carers [ 28 ].…”

Section: Methodsmentioning

confidence: 99%

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Technology for dementia care: what would good technology look like and do, from carers’ perspectives?

Brookman,

Parker,

Hoon

et al. 2023

BMC Geriatr

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Background The development of technology in dementia care has largely been without consultation with carers, and has primarily focused on safety, monitoring devices, and supporting activities of daily living. Further, while involving end-users in the design of technology has been recommended, this is yet to become common practice. Method We conducted a mixed methods study with the aim of investigating carers’ values and priorities for technology development, including prior experiences, barriers to use, and what they would like technology to do. Importantly, we asked carers for their design ideas and bespoke technology solutions for future development. Results Carers of people living with dementia (N = 127), including both unpaid (n = 102) and paid carers (n = 25) residing in Australia, completed an online survey. In addition, a subsample of carers (n = 23) participated in semi-structured interviews. Findings demonstrate that carers want technology to be person-centred, customisable, and to increase opportunities for meaningful social connection. Findings also demonstrate the ability of carers to generate creative design solutions for dementia care. Conclusions These findings and implications will be discussed in relation to the importance of co-design with carers and engineers during the design phase of assistive technology. Also, the importance of technology to enhance, not replace, human-to-human social interactions is highlighted.

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Section: Methodsmentioning

confidence: 99%

“…There are approximately 134,900 to 337,200 unpaid carers, almost all of whom are providing continuous care (60 or more hours per week) [ 28 ]. Carer services are not always accessible, and there are policy efforts to increase the support available to carers of PLWD [ 27 ].…”

Section: Methodsmentioning

confidence: 99%

Technology for dementia care: what would good technology look like and do, from carers’ perspectives?

Brookman,

Parker,

Hoon

et al. 2023

BMC Geriatr

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“…They mainly rely on informal care provided by their family members or friends to be able to remain living at home. 38 , 39 The present study shows the availability of a relatively diverse range of services for people living with dementia, including community services. Additionally, there is a relatively similar pattern of care in both specialised and general services.…”

Section: Discussionmentioning

confidence: 80%

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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“…To support people with dementia to remain at home, family members and friends provide increasing amounts of informal care ( 1 ). While providing care can be fulfilling, it also presents numerous challenges ( 2 ) and is a risk factor for stress ( 3 ). Within caring relationships, the wellbeing of the person with dementia and their family care partners as dyads is interconnected ( 4 , 5 ).…”

Section: Introductionmentioning

confidence: 99%

Learning to use music as a resource: the experiences of people with dementia and their family care partners participating in a home-based skill-sharing music intervention: a HOMESIDE sub-study

et al. 2023

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An increasing number of people with dementia receive informal care from family members to help them remain living in the community. Music therapy is particularly beneficial for supporting the wellbeing of people living with dementia. However, little is known about how music therapy might support people with dementia and their family care partners as dyads. This study explored the experiences of six dyads participating in a 12-week home-based skill-sharing music intervention facilitated by a music therapist. We examined their experiences during the intervention period and in the 3–6 months following. This study was conducted within a larger randomised control trial, HOMESIDE. Data was collected through video-recorded music-based interviews, participant diaries, and a semi-structured interview. Data was analysed using an abductive and relational-centred research approach in consideration of the Contextual Connection Model of Health Musicking for People Living with Dementia and Their Family Care Partners. The study found fifteen themes that describe dyads’ supported experiences of sharing music in their homes. These were organised into three global themes: (1) experiences were shaped by complex influences; (2) a connected musical ecosystem; and (3) music was a resource for wellbeing. This study highlighted the important role of personalised facilitation and the therapeutic relationship as dyads learned to use music as a resource through a process of trial and error. The implications for skill-sharing, indirect music therapy and direct music therapy practice are discussed.

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Providing informal care to a person living with dementia: the experiences of informal carers in Australia

Cited by 13 publications

References 31 publications

Technology for dementia care: what would good technology look like and do, from carers’ perspectives?

Technology for dementia care: what would good technology look like and do, from carers’ perspectives?

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

Learning to use music as a resource: the experiences of people with dementia and their family care partners participating in a home-based skill-sharing music intervention: a HOMESIDE sub-study

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