Carer preferences for home support services in later stage dementia

Kampanellou, Eleni; Chester, Helen; Davies, Linda; Davies, Sue; Giebel, Clarissa; Hughes, Jane; Challis, David; Clarkson, Paul

doi:10.1080/13607863.2017.1394441

Cited by 17 publications

(52 citation statements)

References 47 publications

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“…Additionally, a previous UK study by Chester et al 9 found that the most preferred home support options for caretakers of people with early‐stage dementia included ‘support with personal feelings and concerns – provided by a trained counselor at home’ and ‘information on coping with dementia – provided by an experienced worker at home’. Furthermore, a study of Kampanellou et al 10 indicated that for the informal caregivers of people with later‐stage dementia, respite care was the most preferred attribute for in‐home support. The informal caregivers in this study did not talk about a need for respite care.…”

Section: Discussionmentioning

confidence: 99%

“…Additionally, most of the recruited persons with dementia had early‐stage dementia. When dementia advances, people often become more dependent and demanding in terms of formal and informal care 6‐19 . However, there were informal caregivers included who had their loved ones currently institutionalized or had recently died.…”

Section: Discussionmentioning

confidence: 99%

“…The interview guide consisted of broad questions about the in‐home care to identify the most important factors for the participants. Additionally, more detailed questions were included focused on the findings of previous research focusing on unmet needs of informal caregivers and persons with dementia 9,10 . Detailed information about the interview guide can be found in Table 1.…”

Section: Methodsmentioning

confidence: 99%

“…Additionally, more detailed questions were included focused on the findings of previous research focusing on unmet needs of informal caregivers and persons with dementia. 9,10 Detailed information about the interview guide can be found in…”

Section: Data Collectionmentioning

confidence: 99%

“…9 The informal caregivers appeared to prefer support with personal feelings and concerns and information on coping with dementia. 9 Additionally, another UK study by Kampanellou et al 10 that investigated the care preferences of informal caregivers of people with later-stage dementia demonstrated that respite care and daily living assistance were the most preferred attributes for the informal caregivers of people with later-stage dementia. However, as the Dutch health-care system differs from the health-care system in the UK, it is unclear if these findings are applicable to the Dutch dementia population.…”

mentioning

confidence: 99%

See 4 more Smart Citations

Important components for Dutch in‐home care based on qualitative interviews with persons with dementia and informal caregivers

Vullings

Labrie

Wammes

et al. 2020

Health Expectations

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Data Collectionmentioning

confidence: 99%

mentioning

confidence: 99%

See 3 more Smart Citations

Important components for Dutch in‐home care based on qualitative interviews with persons with dementia and informal caregivers

Vullings

Labrie

Wammes

et al. 2020

Health Expectations

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Persons with dementia and informal caregivers prioritizing care: A mixed‐methods study

Wammes

Labrie

Agogo

et al. 2021

A&D Transl Res & Clin Interv

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Introduction More persons with dementia are residing in the community as many countries shift from residential care to home and community care. Although there are many forms of care and support available to avoid crisis situations and prolong community living, it remains unclear how these are valued by community‐dwelling persons with dementia and their informal caregivers. Understanding perspectives of persons with dementia and informal caregivers on care characteristics is a vital step in valuing care services. This study aims to prioritize care characteristics for community‐dwelling persons with dementia and informal caregivers with the use of an innovative mixed‐methods approach. Methods Six mixed focus groups were conducted in The Netherlands with persons with dementia (n = 23) and informal caregivers (n = 20), including a quantitative ranking exercise that prioritized seven care and support characteristics from "most important" to "least important," followed by a group discussion about the prioritization. Audio recordings were transcribed and analyzed using thematic analysis. Results The ranking exercise and discussion showed that persons with dementia favored in‐home care, help with daily activities, and social activities, whereas informal caregivers favored social activities, information about dementia, navigating the health care system, and emotional support. Discussion Persons with dementia prioritized day‐to‐day activities, whereas informal caregivers preferred assistance with organizing care and coping with caregiving. This study created a method to capture the care preferences of persons with dementia and informal caregivers.

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Preferences for attributes of long-term care in dementia: a scoping review of multi-criteria decision analyses

Speckemeier

2022

J Public Health (Berl.)

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Aim Long-term care considerations for persons with dementia are complex. Multi-criteria decision analysis (MCDA) methods are increasingly used to support healthcare decisions. The objective of this scoping review was to identify and analyze published MCDAs in which preferences for living and care concepts for persons with dementia are determined. Subject and methods A literature search was conducted in PubMed, EMBASE, Web of Science, and Google Scholar in October 2021. Searches were limited to peer-reviewed articles published up to October 14, 2021. The included publications aimed at eliciting care preferences for persons with dementia from patients, relatives, healthcare practitioners or the broader public by means of MCDA. Results Ten studies were included of whom seven were published in 2017 or afterwards. In nine studies, a discrete choice experiment (DCE) was conducted. The majority of studies surveyed the general population or caregivers of persons with dementia. Five studies assessed preferences for attributes of home care and two for long-term care facilities. Willingness to pay was addressed in eight studies. Choice task structure and experimental design varied widely. Despite different objectives, strong preferences for continuous care by the same person, organizational aspects, and caregiver expertise were found across studies. Conclusion This review shows that MCDA methods have successfully been applied to analyze preferences for living and care arrangements for persons with dementia. The majority of publications report on DCEs, and a variety of different study objectives and methodological approaches have been observed. Further research is needed to inform the design of innovative concepts which are a valuable alternative to existing care options.

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Carer preferences for home support services in later stage dementia

Cited by 17 publications

References 47 publications

Important components for Dutch in‐home care based on qualitative interviews with persons with dementia and informal caregivers

Important components for Dutch in‐home care based on qualitative interviews with persons with dementia and informal caregivers

Persons with dementia and informal caregivers prioritizing care: A mixed‐methods study

Preferences for attributes of long-term care in dementia: a scoping review of multi-criteria decision analyses

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