St Christopher’s called for a new societal approach to people with dementia at a conference at the Royal Society of Medicine yesterday. It is estimated that one in three people over the age of 65 years who die, will have some form of dementia.* This means enormous challenges must be overcome if we are to reduce loneliness for those who have the condition and to ensure everyone can receive good end of life care.
The conference was a collaboration between St Christopher’s and international non-profit foundation Memory Bridge, and was attended by leading dementia experts including representatives from Dementia UK, the Alzheimer’s Society and Age UK. Attendees at the conference signed a pledge to reduce loneliness for people living and dying with dementia (link to online pledge); as too often people with dementia are considered ‘no longer there’ once they have seemingly lost their place in society. The pledge has also being launched online at www.stchristophers.org.uk/dementiapledge.
Dr Heather Richardson, Joint Chief Executive at St Christopher’s says, “In the UK the demographics of the dying is going through an enormous transition; people are dying over much longer periods, with multiple conditions and changing needs, which increasingly includes dementia.
“Yet hundreds of thousands of people with dementia aren’t getting access to the right support to allow them to live well, let alone to die well. Dementia is a life-limiting disease but, today, too many people are failed because they are not referred to palliative care at all or far too late, meaning they do not receive the holistic care that they deserve.
Palliative care providers like hospices must strengthen their expertise and skills so that they are able to embrace and have meaningful relationships with people with dementia, enhancing their quality of life right until the very end of life.”
Hundreds of thousands of people with dementia aren’t getting access to the right support
Michael Verde, of Memory Bridge, continues, “At a time when almost 40% of the UK population know a family member or close friend living with dementia** few people know how to connect with people in this condition, including their friends and loved ones. And when people with dementia have difficulty communicating verbally there is a danger that they become emotionally isolated from their loved ones or carers.
“People stop trying to interact with them in any emotionally meaningful way when that happens. But people who have dementia still need to feel that they belong and that they matter. We need to move through feelings of fear and awkwardness to being with people with dementia. To do that, we must learn to listen – not just to what is wrong with the person, but to what remains and is special.”
Conference attendees watched a special screening of the documentary ‘Love Is Listening: Dementia Without Loneliness’, a documentary produced by Michael Verde of Memory Bridge and featuring world-renowned solo percussionist, Dame Evelyn Glennie. Bringing together globally recognised authorities in the arts, science, and spiritual traditions, the film documents how, using her extraordinary awareness of non-verbal communication, Dame Evelyn was able to make an emotionally profound connection with residents of a South London care home whom many might consider to be beyond meaningful reach because of their dementia. The film trailer can be seen at www.memorybridge.org/the-films/
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*Living and dying with dementia in England: Barriers to care, by Marie Curie Cancer Care/The Alzheimer’s Society, December 2014
** YouGov polling for Alzheimer’s Research UK 2nd – 5th May 2012 and ONS 2014 population statistics