title: Illness Perceptions &amp; Help-Seeking Intentions Among People with Early-Stage Dementia and Their Caregivers
title: Illness Perceptions and Dementia
titleType: Subtitle
Creators: name: Gregg, Jane
Publisher: name: Lancaster University
Year: 2023
Subjects: Dementia, Vascular, Alzheimer's, caregivers, illness perceptions, illness representations

description: Objectives: The majority of people with mild to moderate dementia in the
 United Kingdom (UK) are cared for by informal caregivers (CGs), usually
 spouses and close family members. However, surprisingly little is known
 about the influence of the dyadic relationship in regard to an
 individual’s own help-seeking once receiving a diagnosis of dementia.
 Using the conceptual framework of the Self-Regulatory Model (SRM), the aim
 of this study was to examine the illness perceptions of people with
 early-stage dementia and their CG in relation to their own help- seeking.
 Also, the effect of the relationship between both members of the dyad on
 their own illness perceptions with their own help-seeking intentions was
 examined. 
 
 Methods: A cross-sectional study of 56 dyads (person with dementia and CG)
 applied the five dimensions of the Illness Perception Questionnaire
 (IPQ-R) to assess illness perceptions of dementia and the General Help
 Seeking Questionnaire (GHSQ) to measure help-seeking. Dyads were recruited
 from 9 community mental health teams for older adults from an NHS trust in
 the UK. 
 
 Findings: To answer the research question a systematic literature review
 of 14 studies revealed that an individual’s illness perceptions of
 dementia were related to their own cultural beliefs, acceptance, stigma,
 and experiences of dementia services, and that these perceptions
 influenced their own help-seeking intentions. In response to the
 literature review, an Actor Partner Independence Model (APIM) analysis of
 the person with dementia and their carers illness perceptions revealed a
 significant actor effect for identity with help-seeking for the person
 with dementia and for physical and behaviour cause with help-seeking for
 the CG. However, there were no partner effects across dyads, both between
 and within the person with dementia and the CG.
 
 Conclusion: This is the first study to utilise the IPQ-R with people
 living with dementia. Examining illness perceptions with help-seeking, the
 modified IPQ-R showed inconsistencies regarding validity and reliability
 for the IPQ-R subscales of control, consequences, coherence, and timeline
 acute. Thus, suggestions are made to consider adaptations to the IPQ-R
 regarding language used for people living with dementia. 
 
 The observation of illness perceptions and help-seeking within the dyadic
 relationship revealed a lack of partner effects, suggesting that an
 individual’s own perceptions of dementia did not have an impact on their
 partners help-seeking. This suggests that members of the dyad are not
 connecting with each other about their perceptions of living with dementia
 and may result in delayed help- seeking. Thus, future interventions
 focussing on a more shared understanding of illness perceptions between
 both members of the dyad may help identify what support is needed for
 people living with dementia as they learn to live with the illness, thus
 improving their quality of life.