Huge demand for NCPC dementia book
Since its publication in July 2011, 3,000 copies of 'Difficult Conversations for Dementia' have been sold or distributed.
The booklet is aimed at helping 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.
Former carer Barbara Pointon said she wished the book had been available when her husband Malcolm, who had dementia, was dying.
She said: "At the very end, due to his advanced dementia, I could only guess what Malcolm wanted for his funeral or the way he would like to be remembered. I wish I’d had a booklet like Difficult Conversations in my hands."
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 guidance, which was supported by the Government’s National End of Life Care Programme and was developed following conversations with 50 patients, carers and former carers, provides practical advice to carers on a range of issues. It also gives a list of useful resources on areas such as advance 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. Talking to people with dementia about what they want to happen at the end of their lives can help improve the quality of their care, say the charities
'Difficult Conversations' is available to buy from the National Council for Palliative Care website at £5.00, or £2.50 for subscribers.