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

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

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 method- ology 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.

Several commonalities emerged across countries, highlighting the chance to inform and develop com- mon policies to improve the quality of life of PwD and their relatives across Europe. Policies improving person- and family-centred care and spreading dementia-friendly community concepts and practices are suggested. Strong collaborations between formal and informal services and communities are also needed as well as information on educational strategies to improve the use of resources, promote PwD care, and support PwD relatives’ needs.