Informal care

Context: Study of the problems and requirements of the main caregiver providing home care for dementia patients that have resulted in the patient being institutionalised.

Objectives: To determine the reasons for placing the dementia patient in an institution.

Resources: Self-administered questionnaire of 48 questions on the patient and caregiver, including a list of complaints, given to the main caregiver. Medical questionnaire on the patient filled in by the geriatrician.

This paper reports on interviews with 30 carers of working age in north-west England. Respondents revealed a general dissatisfaction with government initiatives and policy. The findings suggest that in the main either the policy, or its implementation at grassroots level, or both have little impact. 

Reports on the launch of ASTRID ( A Social and Technological Response to meeting the needs of Individuals with Dementia and their Carers) a European project funded under the Telematics Programme, involving the UK, Norway, Netherlands and Ireland. It aims to research and promote the use of assistive technology, a broad term which covers anything from simple devices for individuals to whole systems of adapting housing.

This paper explores the different ways in which informal carers for people with dementia negotiate their care-giving role across the changing organisational and spatial landscape of care. In-depth qualitative data are used to argue that the decisions of carers are socially situated and the result of negotiations involving individuals, families and wider cultural expectations. These decisions affect where care occurs.

Italy has one of the highest percentages of older people in Europe, a trend likely to increase faster than elsewhere alongside greater disability. Family support is also weaker through demographic developments and greater female participation in the labour market, and public policies for frail older people are underdeveloped with wide regional variations. The national scheme, the indemnita di accompagnamento (companion payment), is paid to approximately 7.3% of severely disabled people over 65 based on assessment of need.

This report contains the findings of research conducted among people in the UK who care for someone with cancer by providing them with informal unpaid help and support. Ipsos MORI conducted this research on behalf of Macmillan Cancer Support who wanted to determine the number and profile of people caring for someone with cancer in the UK. The organisation also wanted to understand the impact of caring on their lives, including the need for support. 

The paper examines trends in the probability of providing intense care for older parents over the fifteen years between 1985 and 2000, and asks what would happen to the numbers of people providing care to older parents if these trends were to continue in the coming decades. Because the present study is based on an analysis of past trends in provision of informal care, it allows for some key assumptions underlying the projections of informal care in future years to be examined empirically.

The incorporation of informal care into economic evaluations of health care is troublesome. The debate focuses on the valuation of time spent on informal caregiving, while time measurement, a related and may be even a more important issue, tends to be neglected. Valid time measurement is a necessary condition for the valuation of informal care. In this paper, two methods of time measurement are compared and evaluated: the diary, which is considered the gold standard, and the recall method, which is applied more often.

Research has demonstrated the benefits of telecare. It helps those with long-term needs live more independent lives, improves well-being, and enhances the quality of life. Yet little attention has been focused on the impact of telecare on unpaid carers who look after relatives with long-term care needs. This article examines the evidence from “A Weight Off My Mind: exploring the impact and potential benefits of telecare for unpaid carers”, and the ways in which telecare has impacted on carers, and how it has improved their quality of life.

Background There is a lack of instruments to measure the needs, stigma and informal care of people with schizophrenia that take account of sociocultural variation and patients' and formal and informal carers' opinions and experiences. Aims To develop questionnaires to measure stigma, needs and informal (non-professional) care for people with schizophrenia. Method We undertook the study in seven countries and in English, Spanish and Portuguese.