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Caregivers' beliefs about dementia: findings from the IDEAL study
Jones, I.R. Martyr, A. Nelis, S.M. Morris, R.G. Clare, L. IDEAL Study Team
Jones, I.R.
Martyr, A.
Nelis, S.M.
Morris, R.G.
Clare, L.
IDEAL Study Team
Publication Date
2019
End of Embargo
Supervisor
Rights
(c) 2019 The Author(s). This is an Open Access article distributed under the Creative Commons CC-BY license (http://creativecommons.org/
licenses/by/4.0/)
Peer-Reviewed
Yes
Open Access status
openAccess
Accepted for publication
2019-03-12
Institution
Department
Awarded
Embargo end date
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Additional title
Abstract
Informal caregivers of people with dementia develop
their own beliefs about the condition, referred to as Dementia
Representations (DRs), as they try to make sense of the changes
they are observing. The first aim of this study was to provide a
profile of the types of DRs held by caregivers. The second aim
was to examine the impact of caregivers’ DRs on their well-being,
satisfaction with life (SwL) and caregiving stress.
Methods: Participants were 1264 informal caregivers of people in
the mild-to-moderate stages of dementia from time-point 1 of
the IDEAL cohort study.
Measures: DRs were measured using questionnaire items covering:
Identity, Cause, Control, and Timeline.
Results: Almost half (49.2%) of caregivers used a diagnostic term
to describe the person’s condition, although 93.4% of caregivers
stated they were aware of the diagnosis. Higher well-being, SwL,
and lower caregiving stress were associated with the use of an
identity term relating to specific symptoms of dementia, attributing
the cause to ageing or not knowing the cause, and believing
the condition would stay the same. Lower well-being, SwL, and
higher caregiving stress were associated with believing there was
little that could be done to control the effects of the condition.
Conclusion: Healthcare professionals should assess and gain an
understanding of caregivers’ DRs in order to provide more tailored
information and support.
Version
Published version
Citation
Quinn C, Jones IR, Martyr A et al (2019) Caregivers' beliefs about dementia: findings from the IDEAL study. Psychology & Health. 34(10): 1214-1230.
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Article