Illness Perceptions & Help-Seeking Intentions Among People with Early-Stage Dementia and Their Caregivers : Illness Perceptions and Dementia

Gregg, Jane and Perez Algorta, Guillermo and Simpson, Jane (2023) Illness Perceptions & Help-Seeking Intentions Among People with Early-Stage Dementia and Their Caregivers : Illness Perceptions and Dementia. PhD thesis, Lancaster University.

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Abstract

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.