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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

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

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.

Suggested Citation

  • Bressan, Valentina & Hansen, Henriette & Koldby, Kim & Andersen, Knud Damgaard & Snijder, Allette & Tageo, Valentina & Allegretti, Natalia & Porcu, Federica & Marsillas, Sara & García, Alvaro & Palese, 2021. "Needs, issues, and expectations on dementia care at home across Europe to inform policy development: Findings from a transnational research study," Health Policy, Elsevier, vol. 125(8), pages 1013-1022.
    • Handle: RePEc:eee:hepoli:v:125:y:2021:i:8:p:1013-1022
    DOI: 10.1016/j.healthpol.2021.05.012
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    References listed on IDEAS

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    1. Estrada Fernández, Mª Eugenia & Gil Lacruz, Ana I. & Gil Lacruz, Marta & Viñas López, Antonio, 2019. "Informal care. European situation and approximation of a reality," Health Policy, Elsevier, vol. 123(12), pages 1163-1172.
    2. Bremer, Patrick & Challis, David & Hallberg, Ingalill Rahm & Leino-Kilpi, Helena & Saks, Kai & Vellas, Bruno & Zwakhalen, Sandra M.G. & Sauerland, Dirk, 2017. "Informal and formal care: Substitutes or complements in care for people with dementia? Empirical evidence for 8 European countries," Health Policy, Elsevier, vol. 121(6), pages 613-622.
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    1. Valentina Bressan & Allette Snijder & Henriette Hansen & Kim Koldby & Knud Damgaard Andersen & Natalia Allegretti & Federica Porcu & Sara Marsillas & Alvaro García & Alvisa Palese, 2022. "Supporting the Community to Embrace Individuals with Dementia and to Be More Inclusive: Findings of a Conceptual Framework Development Study," IJERPH, MDPI, vol. 19(16), pages 1-14, August.

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