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Family caregivers experiences of formal care when caring for older persons with dementia through the stages of the disease
Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health and Nursing.ORCID iD: 0000-0002-6624-9963
2013 (English)Conference paper, Poster (with or without abstract) (Refereed)
Abstract [en]

Family caregivers experiences of formal care when caring for older persons with dementia through the stages of the disease

Connie Lethin, RN, MSc, Doctoral student 1, Ingalill R Hallberg, RNT, PhD, FAAN, Professor 1, Staffan Karlsson, RNT, PhD, Senior Lecture 1, Ann-Christin Janlöv, RNT, PhD, Senior Lecture 2

1 The Swedish Institute for Health Science and 2 School of Health and Society, Kristianstad, Sweden

Abstract

Aim: The aim of this study was to investigate family caregivers’ experiences of formal care when caring for an older person with dementia through the stages of the disease to be able to improve formal care and develop best practice.

Method: A qualitative approach with focus groups interviews was chosen. The participants were family caregivers caring for older persons with dementia at home or in a nursing home. A total of 23 spouses and children took part in the study. An interview guide was used and contained questions about experiences of collaboration, communication and information with formal care. The family caregivers were also asked about improvement of formal care. The transcribed verbatim was analysed using content analysis to find the underlying meaning.

Results: The result showed various themes describing family caregivers’ experiences of formal care when caring for an older person with dementia through the stages of the disease. The themes were predominating in one stage of the disease, but aroused in addition to a lower extent in other stages. “Being in an unexpected life situation with changes in roles” reflected the early stage of the disease describing the transition from being a relative to becoming a caregiver. Participants expressed that information from health care and getting knowledge was important. “Getting care resources or finding your own way” reflected the intermediate stage of the disease and the need of resources to be able to keep on caring at home. Participants experienced that collaboration and communication with municipal and health care was essential. “Being secure with formal care or struggling for security” reflected the last stage of the disease and family caregivers relation to formal care usually in a nursing home. Participants expressed that communication was important and to some degree also collaboration.

Conclusion: Family caregiver´s had various experiences of formal care. From family caregivers view, formal care seems to be either supporting or troublesome when providing care to a person with dementia through the stages of the disease.    

On the behalf of RightTimePlaceCare consortium. http://www.righttimeplacecare.eu

Place, publisher, year, edition, pages
2013.
National Category
Nursing
Identifiers
URN: urn:nbn:se:hh:diva-35997OAI: oai:DiVA.org:hh-35997DiVA: diva2:1169644
Conference
Nordic Conference on Advances in Health Care Sciences Research, Lund, Sweden November 13-14
Available from: 2017-12-28 Created: 2017-12-28 Last updated: 2018-01-26

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CiteExportLink to record
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Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf