IDEAS home Printed from https://ideas.repec.org/a/gam/jscscx/v8y2019i7p203-d244539.html
   My bibliography  Save this article

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

Author

Listed:
  • Connie Lethin

    (Department of Health Sciences, Lund University, SE 221 00 Lund, Sweden
    Department of Clinical Sciences, Clinical Memory Research Unit, 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
    Athens Association of Alzheimer’s Disease and Related Disorders, 11636 Athens, 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)

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.

Suggested Citation

  • Connie Lethin & Elizabeth Hanson & Eleni Margioti & Carlos Chiatti & Cristina Gagliardi & Carlos Vaz de Carvalho & Agneta Malmgren Fänge, 2019. "Support Needs and Expectations of People Living with Dementia and Their Informal Carers in Everyday Life: A European Study," Social Sciences, MDPI, vol. 8(7), pages 1-14, June.
    • Handle: RePEc:gam:jscscx:v:8:y:2019:i:7:p:203-:d:244539
    as

    Download full text from publisher

    File URL: https://www.mdpi.com/2076-0760/8/7/203/pdf
    Download Restriction: no
    File URL: https://www.mdpi.com/2076-0760/8/7/203/
    Download Restriction: no
    ---><---

    References listed on IDEAS

    as
    1. Herron, R.V. & Rosenberg, M.W., 2017. "“Not there yet”: Examining community support from the perspective of people with dementia and their partners in care," Social Science & Medicine, Elsevier, vol. 173(C), pages 81-87.
    Full references (including those not matched with items on IDEAS)

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Andrews, Gavin J., 2019. "Spinning, hurting, still, afraid: Living life spaces with Type I Chiari Malformation," Social Science & Medicine, Elsevier, vol. 231(C), pages 13-21.

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:gam:jscscx:v:8:y:2019:i:7:p:203-:d:244539. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: MDPI Indexing Manager (email available below). General contact details of provider: https://www.mdpi.com .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.