Wellbeing among people with dementia and their next of kin over a period of 3 years

Document type: Journal Articles
Article type: Original article
Peer reviewed: Yes
Author(s): Göran Holst, Anna-Karin Edberg
Title: Wellbeing among people with dementia and their next of kin over a period of 3 years
Journal: Scandinavian Journal of Caring Sciences
Year: 2011
Volume: 25
Issue: 3
Pagination: 549-557
ISSN: 0283-9318
Publisher: Wiley
URI/DOI: 10.1111/j.1471-6712.2010.00863.x
ISI number: 000293756500018
Organization: Blekinge Institute of Technology
Department: School of Health Science (Sektionen för hälsa)
School of Health Science S-371 79 Karlskrona
+46 455 38 50 00
Authors e-mail: goran.holst@bth.se
Language: English
Abstract: Little is known about the dyadic experience over time of
people with dementia and their next of kin. The aim of
this study was to investigate the state of mind of people
with dementia, their next of kin’s experience of burden
and satisfaction, and factors associated with these experiences over a 3-year period. The sample consisted of 32 people with dementia living at home with family caregivers in the south of Sweden. Data were collected during the period 2004–2007 and consisted of patients self
reports (GDS), dementia nurse assessment (MMSE, Berger
and ADL) and next-of-kin assessment (patient’s state
of mind and care provision). Data also consisted of nextof-
kin’s self reports concerning health, burden and satisfaction.
The result showed that patients’ state of mind was mainly positive at baseline but a deterioration was seen over time in the patient’s mood and cognitive functioning together with an increase in ADLdependency and suspected depression. Dependency in personal ADL entailed a higher risk of being in a negative state of mind. For next of kin the experience of burden increased while satisfaction decreased over the 3 years. The inter-relationship between the patients’ mood and the caregiver’s satisfaction and burden seems to get
stronger over time. At baseline caregiver burden was
mainly related to the next of kins’ general health and to
patient behaviours that were difficult to handle. During
the progression of the disease caregiver satisfaction becomes increasingly related to patient state of mind and
dependency. There is, however, a need for more research
focusing on the specific inter-relational aspects as previous
studies have mainly focused on either the situation
for the person with dementia or on the caregiver.
Subject: Nursing & Caring Sciences\General
Keywords: dementia, community care, family perspective