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

Valentina Bressan, Henriette Hansen, Kim Koldby, Knud Damgaard Andersen, Allette Snijder, Valentina Tageo, Natalia Allegretti, Federica Porcu, Sara Marsillas, Alvaro García and Alvisa Palese

Health Policy, 2021, vol. 125, issue 8, 1013-1022

Abstract: This qualitative descriptive study explored needs, issues, and expectations on dementia care at home as expressed by relatives of people living with dementia (PwD), health and social care professionals (HSCPs), and members of civil society organisations (CSOs) from four European countries. A focus group methodology integrated with individual semi-structured interviews was adopted to collect data by employing a purposeful sampling method. A total of 13 focus groups and 12 individual interviews were conducted in 2019, involving 65 relatives of PwD, 32 HSCPs, and 23 members of CSOs. Deductive content analysis and findings triangulation were performed to analyse data, and a subgroup of participants confirmed the findings. Relatives need to be (a) informed and trained to cope with changes in PwD, (b) recognised for their caregiving role, and (c) assisted by specialised HSCPs. Professionals who work in partnership with PwD and their relatives call for a reorganisation of available services. CSOs compensate for the lack of proper support, promoting networks, and cooperation with local communities.

Keywords: Family caregivers; Relatives; health care professionals; Social care professionals; Civil society organisations; Dementia; Health and social care systems; Policy development (search for similar items in EconPapers)
Date: 2021
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Citations: View citations in EconPapers (1)

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Persistent link: https://EconPapers.repec.org/RePEc:eee:hepoli:v:125:y:2021:i:8:p:1013-1022

DOI: 10.1016/j.healthpol.2021.05.012

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