People with dementia and carer preferences for home support services in early-stage dementia

Chester, Helen; Clarkson, Paul; Davies, Linda; Sutcliffe, Caroline; Davies, Sue; Feast, Alexandra; Hughes, Jane

doi:10.1080/13607863.2016.1247424

Cited by 50 publications

(82 citation statements)

References 40 publications

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“…Health and service providers at the 2017/2018 National Research Summit on Dementia Care explicitly called for research to (1) “proactively support” PwD and to reduce the need for “reactive” medical services, (2) implement comprehensive models of care, and (3) validate the effects of different person‐centered care practices on the health and well‐being of PwD . Summit participants also called for additional research supporting informal caregivers' needs, as managing the complexities of dementia care, experiencing frustration, and coping with uncertainty about how to care for their loved one contribute to caregiver stress and burden …”

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confidence: 99%

“…14 Summit participants also called for additional research supporting informal caregivers' needs, as managing the complexities of dementia care, experiencing frustration, and coping with uncertainty about how to care for their loved one contribute to caregiver stress and burden. [15][16][17][18] To inform the design of proactive, dementia-specific services to prevent or optimally deliver emergency care, we first must better understand how the needs and experiences of PwD, informal caregivers, healthcare providers, and other stakeholders influence ED use among communitydwelling PwD. 6,19 This study explores stakeholders' perspectives on the decisions and drivers influencing ED use and suggestions for effectively addressing unmet needs.…”

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confidence: 99%

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Factors Influencing Emergency Care by Persons With Dementia: Stakeholder Perceptions and Unmet Needs

Jacobsohn

Hollander

Beck

et al. 2019

J American Geriatrics Society

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BACKGROUND/OBJECTIVES People with dementia (PwD) frequently use emergency care services. To mitigate the disproportionately high rate of emergency care use by PwD, an understanding of contributing factors driving reliance on emergency care services and identification of feasible alternatives are needed. This study aimed to identify clinician, caregiver, and service providers' views and experiences of unmet needs leading to emergency care use among community‐dwelling PwD and alternative ways of addressing these needs. DESIGN Qualitative, employing semistructured interviews with clinicians, informal caregivers, and aging service providers. SETTING Wisconsin, United States. PARTICIPANTS Informal caregivers of PwD (n = 4), emergency medicine physicians (n = 4), primary care physicians (n = 5), geriatric healthcare providers (n = 5), aging service providers (n = 6), and community paramedics (n = 3). MEASUREMENTS Demographic characteristics of participants and data from semistructured interviews. FINDINGS Four major themes were identified from interviews: (1) system fragmentation influences emergency care use by PwD, (2) informational, decision‐making, and social support needs influence emergency care use by PwD, (3) emergency departments (EDs) are not designed to optimally address PwD and caregiver needs, and (4) options to prevent and address emergency care needs of PwD. CONCLUSION Participants identified numerous system and individual‐level unmet needs and offered many recommendations to prevent or improve ED use by PwD. These novel findings, aggregating the perspectives of multiple dementia‐care stakeholder groups, serve as the first step to developing interventions that prevent the need for emergency care or deliver tailored emergency care services to this vulnerable population through new approaches. J Am Geriatr Soc 67:711–718, 2019.

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confidence: 99%

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Factors Influencing Emergency Care by Persons With Dementia: Stakeholder Perceptions and Unmet Needs

Jacobsohn

Hollander

Beck

et al. 2019

J American Geriatrics Society

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“…This trial was designed to fill a knowledge gap identified by preceding systematic review [ 54 ]. It also took account of another recent study within the programme, which showed that people with dementia prefer advice on memory aids to be provided at home by a trained worker [ 55 ].…”

Section: Discussionmentioning

confidence: 99%

Cognitive aids for people with early stage dementia versus treatment as usual (Dementia Early Stage Cognitive Aids New Trial (DESCANT)): study protocol for a randomised controlled trial

Chester

Clarkson

Davies

et al. 2018

Trials

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BackgroundThere is a growing need for an evidence-based approach to home support for people with dementia and their carers following diagnosis but research on the effectiveness and cost-effectiveness of different approaches is sparse. The Dementia Early Stage Cognitive Aids New Trial (DESCANT) will evaluate the clinical and cost-effectiveness of a range of memory aids, training and support to people with mild to moderate dementia and their carers at home and compares that intervention with treatment as usual.Methods/designThis is a multi-site, pragmatic randomised trial preceded by a feasibility study and internal pilot. We aim to allocate at random 360 pairs comprising a person with mild to moderate dementia and an identified carer between the DESCANT intervention and treatment as usual. We assess participants at baseline, 13 and 26 weeks. The primary outcome measure is the Bristol Activities of Daily Living Scale; other participant outcomes include cognition, quality of life, activities of daily living and social networking; carer outcomes include quality of life, sense of competence and mental health. To enhance this quantitative evaluation we are conducting a qualitative component and a process evaluation to assess the implementation process and identify contextual factors associated with variation.DiscussionThe DESCANT intervention reflects current policy to enhance the capabilities of people with dementia after diagnosis and their carers. If it is clinically and cost-effective, its modest nature and cost will enhance the likelihood of it being incorporated into mainstream practice.Trial registrationCurrent Controlled Trials, ISRCTN12591717. Registered on 29 July 2016.Protocol number: 31288: North West - Haydock Research Ethics Committee, 20/06/2016, ref.: 16/NW/0389.

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“…The results of this study indicated that persons with early-stage dementia preferred opportunities for social and recreational activities and support with their personal feelings and concerns. 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.…”

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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.…”

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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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People with dementia and carer preferences for home support services in early-stage dementia

Cited by 50 publications

References 40 publications

Factors Influencing Emergency Care by Persons With Dementia: Stakeholder Perceptions and Unmet Needs

Factors Influencing Emergency Care by Persons With Dementia: Stakeholder Perceptions and Unmet Needs

Cognitive aids for people with early stage dementia versus treatment as usual (Dementia Early Stage Cognitive Aids New Trial (DESCANT)): study protocol for a randomised controlled trial

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

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