Dementia care at the end of life

Dr Liz Sampson of University College London delivers the third of Marie Curie Cymru’s lecture series, Caring for People with Dementia at the end of their lives, this week.  She will explore the access to palliative care for people living with dementia get, how advanced care plans can help and why such support is vital to providing a good end of life.

With more and more people living with dementia, it’s important that we are able to support their individual palliative care needs as well as giving support and assistance to their families who are very often providing a huge amount of care and support themselves..

Dementia is a chronic, progressive neurodegenerative disease with an ultimately terminal prognosis for those diagnosed with the condition. 

However, care for people living with dementia is not always underpinned by a palliative approach. This contrasts sharply, for example, with the nature of care people with a diagnosis of terminal cancer receive.

Over the past decade, there have been increased calls to extend palliative care to include people with any terminal illness in need of specialist care, including dementia.

People with advanced dementia may live for a long time and it can be much more difficult to give an accurate prediction of the progression of their disease.  Palliative and end of life care aims to reduce  pain and manage other symptoms so that people can maintain the best possible quality of life  possible as death approaches, whether that is at home, in hospital or in a care home.  Palliative care specialists are also trained and experienced in providing emotional support and having what can often be very difficult and emotionally charged conversations.

The number of people diagnosed with dementia is increasing.  The condition may significantly shorten life expectancy, and concerns have been raised about the quality of end of life care people with dementia receive.

The focus of dementia care across the world has very much been on earlier and more timely diagnosis. This is very important in being able to treat people in a way which alleviates symptoms and, to some extent, slows down the progression of the disease.  Given the lack of treatments which actually tackle the disease itself one of the most important benefits of early diagnosis is that it allows the people diagnosed with dementia to plan for their future care whilst they still have capacity and, of course to have important discussions with those closest to them about the things that matter to them.

But dementia presents particular challenges for advanced care planning, with difficulty judging when the ‘right time’ is to discuss it with the person with dementia and those that are closest to them

In reality, there may never be a ‘right time’. For example, late diagnosis may well mean that someone might not have  the mental capacity that enables them to make such important decisions about the type of care they want in the future.  

In other cases, someone in early stages of dementia may frame their views according to their current situation, rather than how they will feel in future.  Preferences for care may change as a person adapts to and accepts advancing illness. This is a particular issue for people with dementia given the nature of the disease and manner in which it progresses.

Another important consideration is who should be responsible for initiating discussions and ensuring that any  advance care plan is regularly reviewed. Again this is so important for people with dementia where the disease trajectory is often uncertain and can be complicated by frailty and other chronic illnesses and where the person can experience acute medical crisisees such as pneumonia.

Research released last month (Etkind et al. BMC Medicine May 2017) revealed that by 2040, annual deaths in England and Wales are projected to rise by 25.4 per cent over the period – with deaths of people diagnosed with dementia projected to increase from 59,199 to 219,409. This trend will increasingly become one of the key drivers of health and social care planning and within that how the associated need for specialist  palliative care will be met, whether that be directly by palliative care specialists or by other clinicians and carers supported by palliative care specialists.

It is against this background that Marie Curie have launched their Design to Care programme which aims to deliver a blueprint for palliative and end of life care that can help to meet the huge challenges we face.

 

·         The Marie Curie lecture takes place on Wednesday, June 28 at the Life Sciences Hub in Cardiff Bay from 6pm.