Decision making

In this paper, we present new insight into the ways in which carers of people with dementia make decisions in the context of seemingly declining autonomy and freedom associated with the condition. Our focus is on the ways in which carers reflect on decisions made in different temporal contexts (day-to-day, medium- and long term). Drawing on data and analysis from in-depth interviews with male informal carers of women with mild to moderate dementia living in the northwest of England, we outline how the decision-making process is dependent on the temporality of the decisions.

For the past 15 years a central theme of government health-care policy has been to encourage the health service to change the way it relates to those who use it. Recent health policy documents such as Our National Health: A plan for action, a plan for change (Scottish Executive, 2000) emphasise a more integrated way of working that reflects co-operative partnerships.

Objective To identify common difficult decisions made by family carers on behalf of people with dementia, and facilitators of and barriers to such decisions, in order to produce information for family carers about overcoming barriers.

Design Qualitative study to delineate decision areas through focus groups and complexity of decision making in individual interviews.

Setting Community settings in London.

Design/methodology/approach – The approach is to discuss current guidance and practice, and to offer academic criticism and explanation.

Much confusion still surrounds the concept of empowerment and how it is to be translated into practice within the context of community care for service users and carers. A major limitation has been the tendency to treat empowerment as synonymous with participation in decision-making with little attention given to the ‘ecological’ model of empowerment where linkages have been found between community participation and measures of psychological empowerment.

Policy guidelines insist that people with dementia should be involved in decisions about key life choices and transitions. However, as dementia affects both cognitive and communication difficulties, it becomes increasingly difficult to do this, and innovative and effective ways to support people with dementia and their carers to interact with each other are needed. This project, funded by Joseph Rowntree Foundation, examined if Talking Mats, a low-tech communication framework, could support family carers and people with dementia to discuss issues around daily living with each other.

Recent changes in older people's public care services in Nordic countries in particular in Finland and Sweden are based on implicit expectations that family members will increase their involvement in care. In Nordic countries, the care of small children has been acknowledged to be a social matter that concerns gender equality and the work life participation of both men and women, while the situation of working carers of older people is much less acknowledged.

This paper presents the findings from a project investigating the circumstances, experiences, perspectives and service needs of young people caring for a family member with a disability or long-term illness. Using qualitative methods, our research explored the experiences of two cohorts of young carers – younger carers aged 7 to 17 years and young adult carers aged 18 to 25 years. The concept of ‘bounded agency’ offers an explanation for the way that younger carers' and young adult carers' decisions and aspirations can be shaped by the barriers and contexts in which they find themselves.