Dementia: what care do patients and carers need in the last year of life and time surrounding death? an exploratory qualitative study

Background: The incidence and prevalence of dementia is increasing in the UK as the aged population increases. It is currently high on the national agenda. The National Dementia Strategy for England and End of Life Strategy advocate both living and dying well with dementia. Recent media attention has resulted in greater public interest in what can be a debilitating, unpredictable condition affecting those around the person with dementia and not the sufferer alone. This is at a huge cost to the economy and predicted to increase. Research suggests this group receive different levels of care and treatment at end of life than those cognitively intact experiencing different life limiting illnesses. This study sought to explore needs of people with dementia and their informal carers in the last year of life and surrounding death. Aims: The main aim of this study was to explore experiences of this group identifying their underlying needs at this time. Methods: Qualitative methodology was used to explore these differences. Interviews informed by narrative were conducted with bereaved informal carers of people with dementia on one occasion to access their experiences and views. Field notes were kept by the researcher to supplement interpretation and analysis. Analysis: Interviews were recorded digitally and transcribed fully by the researcher. Analysis was informed by the Grounded Theory approach. Results: A total of 41 participants were interviewed. These were mainly siblings or spouse and came from a range of backgrounds ranging from 21-86years in age. Most participants were female (31), death occurred in various 24 hour care environments including district general hospitals, nursing and residential care homes (specialist EMI and non-specialist). A small number (4) experienced death within the family home. Five themes were derived from within the data, carers as experts; kindness; humanity and compassion in care; the hard work of caring; living and dying with dementia in the face of uncertainty and communicating in a world of chaos and unpredictability. The latter being the underpinning theme in the data. Informal carers want to collaborate and be included in all aspects of palliative and end of life care for their loved ones. Issues separating dementia from other life limiting illnesses and provision of palliative and end of life care are: disease course, uncertainty and unpredictability over long periods of time and the role of informal carers as experts with a group whose communication skills are compromised. Discussion: If palliative and end of life care for this group is to mirror that currently provided for other terminal illnesses, the development of knowledge, confidence and communication skills amongst the workforce is crucial. In order to be successful, multi agency working, flexible and creative ways of delivering palliative and end of life care for this group are essential