Family care of the dementing elderly

Abstract

This paper is in two parts. In the first part we review the findings from ‘first generation’ studies of family care of the dementing elderly. First generation studies tended to trawl the topic, with a few questions asked about many aspects of care; they were largely descriptive and rarely involved hypothesis testing. The first generation studies are examined in relation to eight questions: (1) Is caring for a dementing person stressful? (2) Is caring for someone with dementia more stressful than caring for someone with some other disorder? (3) Which aspects of dementia are most problematic for caregivers? (4) Is level of impairment associated with level of experienced burden? (5) What role do family members apart from the main caregiver play? (6) Are there gender differences in amount of help received or coping? (7) What impact does the provision of services have on carers? (8) What are the predictors of the break-down of family care? Second generation studies are those in which many questions are asked in relation to only one or two aspects of caregiving; these studies are beginning to fine-tune our knowledge base. In the second part of the review we describe two second generation studies, both concerned with the potential predictors of the breakdown of family care. Neither study has been published elsewhere. Study I examined the relationships between social death, anticipatory grief, and coping with the care of a dementing relative. In Study II it was hypothesized that `expressed emotion', a concept having predictive value in relationship to family care of a person with schizophrenia, would be of value in predicting the breakdown of community care of people with dementia. In addition, the study aimed to examine in detail how carers cope with the task of caring for someone with dementia. In the final section of the paper two areas for future research are described. Firstly, studies of family networks and filial responsibility, and, secondly, studies investigating the role of professionals in decisions to institutionalize. The paper concludes with recommendations for more in-depth qualitative research, as well as research focussing on the dementing person's perception of care.