Dying Matters calls for improved end of life communications for people with dementia
The Dying Matters Coalition together and its charity the National Council for Palliative Care is today urging professionals and carers of people with dementia to talk to them about their end of life wishes.
The publication 'Difficult Conversations', which is being launched at a joint meeting of the All-Party Parliamentary Group on Hospice and Palliative Care and the All-Party Parliamentary Group on Dementia, is intended to help professionals and carers of people with dementia to open up conversations about end of life wishes, especially early on in the disease, and to provide support.
More than 35 million people worldwide and over 800,000 people in the UK have dementia, but people with the disease often receive unequal access to palliative care – in part because of problems discussing end of life issues with someone once they have dementia.
The new guidance, which has been supported by the Government’s National End of Life Care Programme and developed following conversations with 50 patients, carers and former carers, provides practical advice to carers on a range of issues. It also provides a list of useful resources on issues such as advanced care planning and peer support for carers.
Although dementia affects communication, it can still be possible in many cases for the person with dementia to express their wishes.
Speaking today, Eve Richardson, Chief Executive of the National Council for Palliative Care and the Dying Matters Coalition, said: “Dementia is different for everyone, but knowing what could happen can help with planning ahead and being prepared. Speaking openly about end of life issues with people with dementia can help ensure they receive the care they want and get their wishes met.”
Alistair Burns, the National Clinical Director for Dementia, commented: “End of life care for people with dementia is a key part of delivering good quality dementia care. Conversations with people with dementia early on in the disease, at the appropriate time, to establish their wishes about end of life care couldn’t be more important.”
Claire Henry, Director of the National End of Life Care Programme added: “Only by talking to people with dementia and their families can professionals assess the individual’s needs and plan their care. Such advance care planning can ensure the individual has greater control over their own care, including where they receive it. This resource will provide a useful grounding for care staff working with people with dementia. They can supplement it by accessing free training in communication skills around end of life care that available to many health and social care staff – such as e-ELCA (End of Life Care for All).”