Dementia report highlights barriers to care at the end of people’s lives

by Phil McCarvill Head of Policy & Public Affairs Phil-McCarvil_300x300

Do you think of dementia as a terminal illness? If you don’t, you’re not alone. Dementia is not routinely identified as being a terminal condition and too often dementia is simply seen as being an inevitable part of the ageing process.
But the fact is that dementia is a terminal illness, which around 850,000 people in the UK are living with. Its symptoms – including memory loss, confusion and behaviour changes – get worse over time and there’s no cure. How we think about diseases matters because it can have a profound impact on the care people with that illness receive.

End of life

In the case of dementia, people in the final stages of the condition face barriers to accessing and receiving appropriate high quality care at the end of their lives. The failure to formally diagnose someone with dementia and the apparent reluctance to think about dementia as a terminal illness mean that people with dementia often do not get the care they need. This can lead to a lack of access to palliative care, poor pain management and unnecessary admissions to hospital in the last few weeks of life. I know from the personal experience of caring for my father that people with dementia have very specific needs. And all too often, services don’t respond to the individual needs of the person being cared for. Similarly, too often health and social care professionals respond to someone who is approaching the end of life with dementia in exactly the same way that they would respond to someone who has cancer or heart disease. The reality is that someone who has dementia will have very different care needs, particularly in the final days and weeks of life. We need to build the care around the individual to ensure the most appropriate care, no matter where they are cared for.

Ageing population

These barriers must be tackled sooner rather than later, because these issues will only get worse as the UK’s population ages and dementia becomes more common. By 2030, the proportion of the UK aged over 85 is expected to double – an estimated one in three people over 65 who die will have some form of dementia. Marie Curie and Alzheimer’s Society today (1 December) published a new report identifying these barriers, grouped around three main themes:

  • identification and planning

  • inequality of access

  • quality of care

Practical steps

Over the coming months, Marie Curie and Alzheimer’s Society will bring together people with direct experiences of caring for someone with dementia at the end of their life with those who plan, design and provide care and support. Over 2015, we will identify practical steps to removing each of the barriers identified in our report. We’ll report back this time next year. We need to take action to improve end of life care for those who are living and dying with dementia today, but we also have to ensure that we are able to meet the challenges of the coming decades. Read the executive summary of our dementia report   Read the full dementia report