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Understanding dementia
and the role of end of life

Simon Chapman explores the need for best practice in dementia and how end of life must always be a consideration.

The impact of dementia, in all its forms, is increasingly recognised and discussed by policy-makers and in the media. This is, in part, thanks to the priority given to it by the Prime Minister in his national dementia challenge which has led to a great deal of activity based on the three themes of improving health and social care, creating dementia-friendly communities and improving research. Thanks to UK leadership, dementia was a prominent item on the agenda at the G8 summit in December 2013.

However, whilst this is all welcome, much more attention needs to be given to ensuring that the end of life care needs of people affected by dementia are being met. Those working in the care sector, for whom understanding dementia and giving care and support to people affected by it is already core business, have an essential role.

Many of the statistics are already familiar. It is estimated that there are about 800,000 people in the UK living with dementia, and that there will be over 1 million by 2021. Two-thirds of people with dementia are women. Over 60,000 deaths a year are directly attributable to dementia (the number may be higher, but it is not always recorded on death certificates). 80 per cent of people living in care homes have a form of dementia or severe memory problems.

End of life care and dementia

People with dementia are much more likely to die in a care home than the rest of the population. Research published by the National End of Life Care Intelligence Network in 2010 showed that about 59 per cent of people recorded as dying with dementia died in a care home, compared with, at that time, about 20 per cent of the overall population. In many instances, nursing home care, dementia care and end of life care are completely synonymous.

It was in this context that, over eight years ago, the National Council for Palliative Care (NCPC), working with partners in the dementia and care sectors, established the Dementia Steering Group. The Group’s remit was to ensure that national agendas and policy in relation to dementia and end of life care are joined up in a consistent and coherent way, and to improve understanding of how quality of life and experience of care for people with dementia can be made as good as possible, right until the end of their lives, with support beyond then into bereavement for the people close to them.

The Dementia Steering Group has done a great deal of work to influence policymakers since it was first set up. What follows are some of the key insights and concepts that it has promoted.

Understanding, planning and relationships are essential to good care

Although the profile of dementia is being raised, understanding of the condition in its different forms and its impact on people is still not what it should be. This lack of understanding manifests itself in different ways. Part of that is lack of diagnosis. Only about 44 per cent of people with dementia are given a diagnosis. Whether this is because of a failure to recognise it, a misplaced belief that because dementia cannot be cured ‘nothing can be done’, or an attribution to ‘getting older’, it is still unjustifiable. Early diagnosis enables the person, whilst they still have mental capacity to make important decisions, to plan and discuss their future care, including their end of life care, in the knowledge of what lies ahead.

Lack of understanding also impacts on the care that people receive. This operates at different levels: there is a need for better understanding of dementia, and also a need for people involved in care to develop a good understanding of the needs, personality and life story of the person they are caring for.

Particularly as people’s dementia advances and they become less able to communicate verbally in the ways that they used to, it may be that they start to behave in ways that hitherto would have been seen as out of character. These can include being agitated, frustrated, confused, anxious, fearful, aggressive, pacing or calling out. This can be alarming or challenging to cope with.

It is important for carers and staff to understand that this is not just ‘part and parcel’ of dementia that nothing can be done about. This behaviour may well be a symptom or sign of distress or an attempt to communicate an unmet need.

Understanding the person with dementia and who they are is also vital to inform and support good care. The work of organisations such as the Life Story Network and My Home Life have emphasised the importance of developing relational care, based on a commitment to knowing the person being cared for and ensuring that the things that are important to them are identified, recorded and respected.

That approach to relational care should also include the person’s family and friends. Even when the person has moved to live in a care home, those who have been their informal carers do not stop being carers. They have an interest in the person’s care and well-being, as well as considerable expertise and insight into the person and how to care for them. They should be involved and seen as partners in the person’s care.

This is not just a matter of good practice. People with dementia will be living with impaired mental capacity. They may require support to enable them to make some decisions about their care and end of life care, whilst other decisions may have to be taken in their best interests. The Mental Capacity Act 2005 sets out the legal framework within which supported and best interests decision-making must take place.

This includes involving people who are interested in the person’s care, as well as the need to be informed about the person’s current and future wishes, beliefs, feelings and values. Evidence of a relational or ‘life story’ approach will help demonstrate compliance with the Mental Capacity Act. This is an issue in which the Care Quality Commission is likely to take a close interest.

This approach will require trained care staff with the competence and confidence to communicate and provide care that is tailored around the individual and their needs and preferences. ‘More/better/different education and training’ frequently appears in the list of recommendations at the end of reports on how to improve services or develop new cultures of care. However, education and training are not ends in themselves; it is only worth investing in programmes that work.

The acid test should be: have we succeeded in changing behaviours and practice? The overall goal should be: are we doing all that we can to ensure the quality and experience of care for the people we look after is as good as it can be? This should be up to and including end of life care.

2030 Vision and future planning

NCPC is using its 2030 Vision project to consider the long-term impact of demographic change. It is well known that our population is ageing. It is less often discussed that numbers of people dying each year are now starting to increase after years of decline. About 500,000 people die each year in England and Wales at the moment. This is predicted to have increased to about 590,000 by about 2030. We need to think and plan now for the models of care that will be needed in the future. Recently we have been exploring what this means for architecture, design and the built living environment.

The emphasis in the Prime Minister’s Challenge on creating dementia-friendly communities is important here. What are the dementia-friendly communities that can provide people with flexible care and support, meeting increasing needs as their dementia develops, right until the end of life? Whilst at the same time maintaining a safe, familiar and stable environment, which is so important for people with dementia. There are already examples of different levels of care being provided in the same site, with a strong sense of community being engendered.

A key issue here is market development. This requires investors willing to back innovative schemes, and a supply of land at reasonable cost on which developments can be built. An aspect that has been considered less is the need to engage the public in this. If people are to plan ahead, and invest in new forms of living arrangement, they need to understand what it is they are being asked to buy into. The language can be bewildering: sheltered; extra care; supported care; assisted care.

NCPC leads the Dying Matters coalition, which has been set up to raise public awareness and change behaviours about death, dying and bereavement. One of the things that we have learned is that jargon is a real barrier to people having discussions about their future care right until the end of life, for themselves and the people close to them. This includes them thinking about long-term care.

End of life care is an important consideration for everyone and it’s essential to ensure that the end of life care needs of people affected by dementia are being met.

Useful resources

Difficult Conversations on Dementia

How Would I Know, What Can I Do? An accessible guide on how to help people with dementia who are in pain and distress.

A 2030 Vision: Building communities and environments to support people to live and die well 

Simon Chapman is Director of Public and Parliamentary Engagement at The National Council for Palliative Care and the Dying Matters coalition.

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