Informal care

Objective: When it comes to dementia, caregiving can have adverse effects on the psychological and physical health of the informal caregiver. As yet, little is known about the impact of caring for a young dementia patient. This review provides an overview of the literature concerning the impact of early onset dementia (EOD) on informal caregivers and on children of EOD patients. The available literature comparing the impact on EOD and late onset dementia (LOD) caregivers will also be provided.

As the aging population increases, the demand for informal caregiving is becoming an ever more important concern for researchers and policy-makers alike. To shed light on the implications of informal caregiving, this paper reviews current research on its impact on three areas of caregivers’ lives: employment, health, and family. Because the literature is inherently interdisciplinary, the research designs, sampling procedures, and statistical methods used are heterogeneous.

The bulk of care in the community is carried out by lay carers. Recent policy initiatives to support them in the United Kingdom are outlined. There remains evidence of significant gaps in support from professional health and social-care workers including community nurses. This paper reports three studies of lay carers: those caring for older people, carers of technology-dependent children, and home-care workers involved in the “direct payments” scheme.

Besides patients’ health and well-being, healthcare interventions may affect the well-being of significant others. Such ‘spill over effects’ in significant others may be distinguished in two distinct effects: (i) the caregiving effect and (ii) the family effect. The first refers to the welfare effects of providing informal care, i.e., the effects of caring for someone who is ill. The second refers to a direct influence of the health of a patient on others’ well-being, i.e., the effects of caring about other people.