Informal caregivers of older persons with dementia in eight European countries. Experiences, support, well-being and burden.

Research output: ThesisDoctoral Thesis (compilation)


The overall aim was to investigate informal caregivers providing care for older persons with dementia (≥ 65 years of age) in eight European countries. Focus was on their experiences of formal care, access to support and factors that were associated with caregivers’ psychological well-being and burden. Caregivers’ experiences of formal care were investigated in a qualitative study with four focus groups interviews with 23 caregivers of older person with dementia living at home or in a nursing home in Sweden (Study I). The interviews were analysed with content analysis. The result of the caregivers’ experiences of formal care when caring for a person with dementia was captured in the theme ‘Family caregiving requires collaboration with formal care to get support adjusted to needs specific to the stages of dementia’. Access, i.e. availability and utilization of support including providers of the support was a quantitative, cross-sectional study conducted in eight European countries (Study II). A mapping system was used to estimate availability, utilization, and professional providers of support to caregivers caring for a person with dementia. Data was collected for each country nationally. The findings showed that counselling, caregiver support, and education were highly available in six of the participating European countries but were rarely utilized. Countries with national guidelines for dementia care seemed to be more aware of the importance of professionals specialized in dementia. In Study III and IV, factors associated with caregiver well-being and burden was investigated, prospectively with 1223 caregivers, caring for an older person with dementia living at home. The caregivers were interviewed based on questionnaires, at baseline and follow-up after three months. Logistic regression analysis was performed of factors associated with caregivers’ psychological well-being and burden at baseline and 3 months later. Factors associated with presence of psychological well-being and burden and over time were the caregivers’ experience of caregiving, the quality of care and amount of caregiving for the person with dementia.
This thesis emphasize that formal care needs to be proactive and deliver available care and support early in the course of the dementia disease. Mapping the health care and social service systems is a valuable tool for evaluating existing systems, internationally, nationally and locally for policy making. Professionals should be aware about factors associated with caregivers’ well-being and burden to provide proper care and support and promote a healthy transition in the caregiving role and through the course of the dementia disease.


Research areas and keywords

Subject classification (UKÄ) – MANDATORY

  • Medical and Health Sciences


  • Nursing Care, Informal caregivers, Dementia, Europe , Health Services, Home Nursing, Life change events
Translated title of the contributionInformella vårdare till äldre personer med demens i åtta Europeiska länder: Erfarenhet, stöd, väbefinnande ooch belastning
Original languageEnglish
Awarding Institution
Supervisors/Assistant supervisor
  • Christer Nilsson, Supervisor
  • Staffan Karlsson, Supervisor
  • Karin Nilsson, Supervisor
Thesis sponsors
  • European Commission - FP7
  • Greta & Johan Kocks stiftelser
  • Vårdal Institute /Swedish Institute for Health Sciences
  • Lund University, Faculty of Medicine
  • The Kamprad Family Foundation
  • Foundation of Region Skåne
  • The Hans-Gabriel and Alice Trolle-Wachtmeisters Foundation
  • Foundation of Ragnhild and Einar Lundströms memory
Award date2016 Sep 22
Place of PublicationLund
  • Lund University: Faculty of Medicine
Print ISBNs978-91-7619-320-4
Electronic ISBNs978-91-7619-364-8
Publication statusPublished - 2016
Publication categoryResearch

Bibliographic note

Defence details Date: 2016-09-22 Time: 13:00 Place: SSSH-salen, Health Science Center, Baravägen 3, Lund External reviewer(s) Name: Sandberg, Jonas Title: associate professor Affiliation: Jönköping University --- ISSN: 1652-8220 Lund University, Faculty of Medicine Doctoral Dissertation Series 2016:94

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Related research output

Connie Lethin, Anna Renom-Guiteras, Sandra Zwakhalen, Maria Soto-Martin, Kai Saks, Adelaida Zabalegui, David J. Challis, Christer Nilsson & Staffan Karlsson, 2017, In: Aging & Mental Health. 21, 11, p. 1138-1146

Research output: Contribution to journalArticle

Connie Lethin, Helena Leino-Kilpi, Brenda Roe, Maria Martin Soto, Kai Saks, Astrid Stephan, Sandra Zwakhalen, Adelaida Zabalegui & Staffan Karlsson, 2016, In: BMC Geriatrics. 16, 1, 32.

Research output: Contribution to journalArticle

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Related projects

Gabriella Meyer, Ingalill Rahm Hallberg, Jan Hamers, David J. Challis, Helena Leino-Kilpi, Saks Kai, Zabalegui Adelaida, Maria E Soto-Martin & Connie Lethin


Project: ResearchInternational collaboration

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