Dementia caregiving
: burden and breakdown

  • Simon O'Donovan

    Student thesis: Doctoral Thesis


    This study was an investigation of the phenomenon of dementia caregiving burden and breakdown in community caregiving situations. 109 carer subjects participated in the study, with 91 current carers -17 via face-to-face interview and 74 via the internet, and 18 past carers - two via face-to-face interview and 16 via the internet, contributing their experiences of dementia caregiving.

    Two new carers' assessment tools were devised to meet more fully the requirements of the 'Carers (Recognition and Services) Act 1995' (DoH, 1995), namely the 'Dementia Caregiving Problems Questionnaire (DCPQ)' and 'Dementia Caregiving Burden Questionnaire (DCBQ)'. These new assessments were tested and demonstrated to be reliable, with Cronbach Alpha scores of 0.7029 and 0.8430 respectively, and are recommended for implementation in clinical practice.

    The key predictive risk factors for high caregiving burden in this study were perceived stress; omission of caregiving satisfactions; carer depression; perceived impact on quality of life; perceived helpfulness of community care services; behaviour problems - especially shouting, swearing and screaming, irritability and night disturbance; poor quality carer/dependant relationship; mood problems; perceived helpfulness of informal support; perceived impact of caregiving on dependant emotional well-being and, to a lesser extent, hours spent in caregiving.

    The key predictive risk factors for expected relinquishment of home caregiving were DCBQ score; perceived impact on quality of life; perceived stress; carer depression and, to a lesser extent, geographical distance in caregiving; perceived helpfulness of community care services and omission of positive feelings in the carer.

    Based on the above risk factors, a new 'Dementia Caregiving Breakdown Risk Assessment Tool (DCBRAT)' is proposed for use by community care managers to identify 'at risk' caregiving situations so that service interventions can be targetted more towards carers who are highly burdened in their role, who are at risk of developing psychological health problems or who may be nearing breakdown in their caregiving situation. Thus the effectiveness of service interventions may be maximised and optimal health gain for carers achieved, resulting in improved outcomes for people with dementia.

    The DCBRAT and the similarly proposed 'Conceptual Model of Dementia Caregiving, Burden and Breakdown' will need to be further tested in post-doctoral research.
    Date of Award2004
    Original languageEnglish
    SupervisorDonna Mead (Supervisor), Jim Richardson (Supervisor) & Laurie Moseley (Supervisor)


    • dementia
    • caregiving
    • care
    • carers
    • Dementia Caregiving Breakdown Risk Assessment Tool
    • DCBRAT
    • psychological health problems

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