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Support Needs and Expectations of People Living with Dementia and Their Informal Carers in Everyday Life: A European Study

1
Department of Health Sciences, Lund University, SE 221 00 Lund, Sweden
2
Department of Clinical Sciences, Clinical Memory Research Unit, Lund University, SE 221 00 Lund, Sweden
3
Swedish Family Care Competence Centre, Department of Health & Caring Sciences, Linnaeus University, SE 391 27 Kalmar, Sweden
4
Laboratory of Cognitive Neuroscience, School of Psychology, Aristotle University of Thessaloniki, 54124 Thessaloniki, Greece
5
Athens Association of Alzheimer’s Disease and Related Disorders, 11636 Athens, Greece
6
Centre for Socio-Economic Research on Aging, IRCCS- INRCA, National Institute of Health and Science on Aging, 60124 Ancona, Italy
7
Virtual Campus Lda/GILT-Instituto Superior de Engenharia do Porto, 4350-151 Porto, Portugal
*
Author to whom correspondence should be addressed.
Soc. Sci. 2019, 8(7), 203; https://doi.org/10.3390/socsci8070203
Received: 11 May 2019 / Revised: 15 June 2019 / Accepted: 27 June 2019 / Published: 30 June 2019
(This article belongs to the Section Community and Urban Sociology)
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PDF [281 KB, uploaded 9 July 2019]

Abstract

The aim of this study was to describe the needs and expectations of support within everyday life among community-dwelling people living well with an early stage dementia and their informal carers. The study employed a qualitative design. Data were collected in 2018, via four focus group interviews with, in total, 17 people with dementia and 21 informal carers, transcribed and analyzed with manifest content analysis. Needs and expectations of support among persons with dementia were expressed as the importance of “Participation in my own care,” “Attitude of the informal carers,” and “Trusting relationships with informal carers.” Informal carers’ needs and expectations of support were expressed as the importance of “Formal care and services,” “Getting out of a carer mindset,” and “Family context.” The findings from this study highlighted that persons with dementia were well aware of their cognitive impairments and tried to maintain their independence, with both formal and informal care to help remain “being themselves.” Health professionals should acknowledge persons with dementia and informal carers’ well-being, and acknowledge the importance of their needs together with an understanding of the importance of continuity of frontline carers to building trusting relationships. View Full-Text
Keywords: ageing; content analysis; dementia; formal care; focus group interview; informal care; neurocognitive disorder ageing; content analysis; dementia; formal care; focus group interview; informal care; neurocognitive disorder
This is an open access article distributed under the Creative Commons Attribution License which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited (CC BY 4.0).
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MDPI and ACS Style

Lethin, C.; Hanson, E.; Margioti, E.; Chiatti, C.; Gagliardi, C.; Vaz de Carvalho, C.; Malmgren Fänge, A. Support Needs and Expectations of People Living with Dementia and Their Informal Carers in Everyday Life: A European Study. Soc. Sci. 2019, 8, 203.

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