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Duties to Care

The Duties to Care Dementia Project

The Duties to Care project ran from October 2010 – February 2012.

What was the project about?

The ‘Duties to care’ project was interested in the experiences of carers of people with dementia. Dementia is an umbrella term which describes a range of degenerative brain diseases that have common symptoms. These symptoms include memory loss, decreased reasoning and communication skills, and a reduction in the skills needed to carry out activities of daily living. In particular the project focuses on carers’ experiences of accessing health and social care services.

This project was interested in finding out the answers to these questions:

  • What do the carers of people with dementia think about the regulation of care services?
  • How effective are the legal frameworks surrounding dementia care from carers’ perspectives?
  • What are the key issues and concerns that carers have in relation to accessing health and social care support services?

We have now completed the data collection phase of this project and are now writing up the results and presenting papers from the project at academic conferences. We are very grateful to all the carers who filled in the survey and everyone who took part in a focus group for giving up their time and for sharing their experiences with us. See the findings page for more information about the results from this research.

Why is this research important?

Many peoples’ lives are affected by dementia. There are over 800,000 people living with dementia in Britain. People with dementia need increasing levels of support to carry out daily tasks, maintain a decent quality of life and live with dignity. Most of the care that people with dementia need is provided by unpaid or informal carers, often family members.

We know very little about what informal carers’ think about accessing care services for people with dementia. There have been recent changes to the legal frameworks surrounding dementia care and the way that dementia care is organised. How do carers’ navigate these legal and regulatory frameworks? For example, how do carers’ feel about accessing help with, and financial assistance for, care? What do carers’ think about the recent changes to power of attorney and the personalisation of care budgets?

These are important issues that have implications for carers of people with dementia, the loved ones they care for and how dementia care should be best organised.

Who funded this research?

British Academy LogoThe British Academy have funded this project through their small grants scheme. This is a small scale project that will lay the foundations for more research in this area.

The Dementia Talking project built on some of the findings from this research, which was also funded by the British Academy.

What did you find out?

The Duties to Care project allowed us to find out a great deal about carers’ experiences. You can browse the project Findings on this website, and browse the list of publications that have come from Duties to Care.