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

Connie Lethin, Elizabeth Hanson, Eleni Margioti, Carlos Chiatti, Cristina Gagliardi, Carlos Vaz de Carvalho and Agneta Malmgren Fänge
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Connie Lethin: Department of Health Sciences, Lund University, SE 221 00 Lund, Sweden
Elizabeth Hanson: Swedish Family Care Competence Centre, Department of Health & Caring Sciences, Linnaeus University, SE 391 27 Kalmar, Sweden
Eleni Margioti: Laboratory of Cognitive Neuroscience, School of Psychology, Aristotle University of Thessaloniki, 54124 Thessaloniki, Greece
Carlos Chiatti: Department of Health Sciences, Lund University, SE 221 00 Lund, Sweden
Cristina Gagliardi: Centre for Socio-Economic Research on Aging, IRCCS- INRCA, National Institute of Health and Science on Aging, 60124 Ancona, Italy
Carlos Vaz de Carvalho: Virtual Campus Lda/GILT-Instituto Superior de Engenharia do Porto, 4350-151 Porto, Portugal
Agneta Malmgren Fänge: Department of Health Sciences, Lund University, SE 221 00 Lund, Sweden

Social Sciences, 2019, vol. 8, issue 7, 1-14

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.

Keywords: ageing; content analysis; dementia; formal care; focus group interview; informal care; neurocognitive disorder (search for similar items in EconPapers)
JEL-codes: A B N P Y80 Z00 (search for similar items in EconPapers)
Date: 2019
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