Needs, issues, and expectations on dementia care at home across Europe to inform policy development: Findings from a transnational research study

Bressan, Valentina; Hansen, Henriette; Koldby, Kim; Andersen, Knud Damgaard; Snijder, Allette; Tageo, Valentina; Allegretti, Natalia; Porcu, Federica; Marsillas, Sara; García, A. Sánchez; Palese, Alvisa

doi:10.1016/j.healthpol.2021.05.012

Cited by 4 publications

(10 citation statements)

References 30 publications

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“…To meet the diverse needs of people with dementia and enable them to live as well as possible requires supportive government policies and coordinated input from health and social care services and the voluntary and community sector, together with initiatives such as dementia friendly communities [ 16 , 17 ]. There are, however, barriers to the delivery of integrated care including lack of funding, fragmented and fragile services, lack of shared information systems and challenges to interprofessional relationships [ 18 , 19 ].…”

Section: Introductionmentioning

confidence: 99%

Key components of post-diagnostic support for people with dementia and their carers: A qualitative study

et al. 2021

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Background There has been a shift in focus of international dementia policies from improving diagnostic rates to enhancing the post-diagnostic support provided to people with dementia and their carers. There is, however, little agreement over what constitutes good post-diagnostic support. This study aimed to identify the components of post-diagnostic dementia support. Methods We adopted a qualitative design using interviews, focus groups and observation to explore the perspectives of key stakeholders on the content of post-diagnostic dementia support. Purposive sampling was used to identify sites in England and Wales recognised as delivering good practice. Participants included 17 people with dementia, 31 carers, 68 service managers or funders, and 78 frontline staff. Interviews and focus groups were audio recorded and transcribed for analysis. Forty-eight sessions of observation were completed and recorded in fieldnotes. Components were identified through an inductive, thematic approach and cross-checked against national guidelines and existing frameworks; they were subsequently critically reviewed by a range of experts and our mixed stakeholder panel. Results Twenty distinct components of post-diagnostic support were identified, related to five themes: timely identification and management of needs; understanding and managing dementia; emotional and psychological wellbeing; practical support; and integrating support. The first and last of these were cross-cutting themes facilitating the delivery of a unique constellation of components of post-diagnostic support to each individual living with dementia or dyad at a particular time. Conclusions Our work offers an empirically based framework to inform the development and delivery of holistic, integrated and continuous dementia care from diagnosis to end of life. It highlights the relevance of many components to both people living with dementia and their carers. Since the framework was developed in England and Wales, further research is needed to explore the relevance of our components to other sectors, countries and care systems.

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Section: Introductionmentioning

confidence: 99%

Key components of post-diagnostic support for people with dementia and their carers: A qualitative study

et al. 2021

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“…Specifically, between January and June 2019, a qualitative descriptive study was conducted to explore the needs, experiences, perspectives and expectations concerning the care of PwD at home [ 25 ]. We adopted a qualitative approach according to the evidence that the caregivers of PwD, when compared with caregivers of individuals with other kinds of health issues, show a higher risk of unmet needs, social isolation and low levels of quality of life, information and service access.…”

Section: Methodsmentioning

confidence: 99%

“…We adopted a qualitative approach according to the evidence that the caregivers of PwD, when compared with caregivers of individuals with other kinds of health issues, show a higher risk of unmet needs, social isolation and low levels of quality of life, information and service access. Starting from these assumptions, primary data were collected from relatives of PwD, HSCPs and representatives of CSOs from four European countries (i.e., Denmark, Italy, Spain and the Netherlands) [ 25 ]. A purposive sampling strategy [ 26 ] was adopted to promote maximum variation in the caring experiences, socioeconomic and professional backgrounds, severity of the PwD’s disease and trajectory.…”

Section: Methodsmentioning

confidence: 99%

“…A total of 120 participants were involved: (a) 65 relatives of PwD (60 in the FGs, 5 in individual interviews); (b) 32 HSCPs (29 in FGs, 3 in individual interviews); (c) 23 members of CSOs (19 in FGs, 4 in individual interviews). Data collection was conducted in each country adopting a predefined interview guide exploring the needs, expectations and/or concerns that relatives taking care of a PwD experience on a daily basis while delivering informal care at home (more details are reported elsewhere [ 25 ]).…”

Section: Methodsmentioning

confidence: 99%

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Supporting the Community to Embrace Individuals with Dementia and to Be More Inclusive: Findings of a Conceptual Framework Development Study

Bressan

Snijder²,

Hansen³

et al. 2022

IJERPH

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The number of community-dwelling people with dementia (PwD) is rising, and the role of their relatives is crucial in addressing and mitigating the implications of dementia on health care systems and on society. We developed a new conceptual framework to promote the collaboration of the community in supporting relatives who are caring for a PwD as well as a range of stakeholders in embracing dementia. A qualitatively driven, multi-method study divided into three phases was performed from 2019 to 2021. A qualitative descriptive study, a mixed-method systematic review and three consensus workshops were conducted, and their results were triangulated. The final version of the Community Collaboration Concept Framework is composed of three main domains based upon seven components: (1) embracing dementia; (2) creating empowerment and a sense of community; (3) collaborating through cocreation and design thinking. The new framework is based on the literature, the synthesis of empirical data and the consensus of a panel of international experts, supporting the global goal of improving community inclusiveness and collaboration. Further studies are needed to confirm its validity, how it should be implemented in practice in various settings and to propose improvements when designing projects based upon it.

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“…Within the cases of Dutch DFCs, a DFI was our unit of analyses. A purposeful sampling method (25,26) was used based on maximum variation of DFCs in terms of rurality (urban vs. rural sites), the geographic scatter in the Netherlands, duration of being a DFC and characteristics of DFIs within a DFC (8). This sequential sampling method was established together with the advisory panel of Mentality.…”

Section: Case Selectionmentioning

confidence: 99%

What matters in development and sustainment of community dementia friendly initiatives and why? A realist multiple case study

Thijssen

Kuijer-Siebelink

Lexis

et al. 2022

Preprint

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Background Dementia friendly communities (DFCs) are seen as key to participation of people with dementia and carers. Dementia-friendly initiatives (DFI) are important building blocks for the growth of DFCs. Therefore, it is essential to understand how DFIs are developed and sustained to secure the growth of DFCs. This study identifies contextual factors and mechanisms that influence the development and sustainment of Dutch DFIs. It also explains how these contextual factors and mechanisms are interrelated and the outcomes to which they lead. Methods Mixed methods, namely interviews, observations, documentation and focus groups, were used for this realist multiple case study. Participants were professionals (n = 46), volunteers (n = 20), people with dementia (n = 1) and carers (n = 2) who were involved in development and sustainment of DFIs in four Dutch DFCs. Results This study revealed three middle-range program theories as final outcomes: development of a support base, collaboration, and participation in DFIs by people with dementia and carers. These theories address institutional, organisational, interpersonal and individual levels in the community that are essential in development and sustainment of DFIs. Conclusions The development and sustainment of DFIs requires the development of a support base, collaboration, and participation in DFIs by people with dementia and their carers.

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Needs, issues, and expectations on dementia care at home across Europe to inform policy development: Findings from a transnational research study

Cited by 4 publications

References 30 publications

Key components of post-diagnostic support for people with dementia and their carers: A qualitative study

Key components of post-diagnostic support for people with dementia and their carers: A qualitative study

Supporting the Community to Embrace Individuals with Dementia and to Be More Inclusive: Findings of a Conceptual Framework Development Study

What matters in development and sustainment of community dementia friendly initiatives and why? A realist multiple case study

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