Kate White, Jude Sweeting and Barbara Stephens, on behalf of the Board of Dementia Community, met with Alex Hyde Smith (Chief Marketing Officer and Executive Director) from the Alzheimer’s Society on 8th November 2024 to open a dialogue with the Society about the future of our working relationship.
We discussed the ‘Long Goodbye’, other recent Alzheimer’s Society communications, the shared and differing values and perspectives of our two organisations and the reactions and views of ‘Dementia Community’ members who have spoken out. We emphasised the key role Dementia Community has in fostering constructive debate and creating a space for its community members to express a diversity of opinions and perspectives safely. The meeting had a positive tone, we felt acknowledged, listened to, and heard.
As a former care partner, Kate White spoke about the distress and pain that had been experienced by people living with dementia who felt that the ‘Long Goodbye’ offered a ‘no hope’ message, suggesting that a diagnosis of dementia signalled ‘the end’ with loss of personhood, devastation and a series of ongoing deaths.
We talked about this story being ‘one family’s story’ and that many other stories could be told which would present a more nuanced and balanced picture. We highlighted ways in which people diagnosed with dementia and their families, when all are supported, continue to live life contributing to their community and can have an improved experience at the end of life.
We also discussed our concerns regarding the use of pejorative language such as ‘death’ and ‘devastation’, which, in our view, undermined years of campaigning against stigma.
In addition, we raised our concerns about Alzheimer’s Society’s consultation process with people with dementia about the ‘Long Goodbye’ and its seeming lack of compassion. Alex acknowledged that the Society had not identified the limitations of the consultation process, which had been described as co-production, and would seek to more clearly articulate how people with lived experience are involved in consultations of this kind in the future. We suggested there was an important opportunity for the Society to have a reparative conversation with those who had been involved.
Alex explained the rationale for the advertisement and the campaign and spoke about the research outcomes that had informed the decision to produce the advertisement. Alex also detailed the planned further phases of the campaign that will offer ‘help and hope’ and convey a fuller picture of how people with dementia can be supported to live with purpose and fulfilment.
He expressed their intention to make dementia a more pressing issue for those without experiences of dementia and to raise awareness of the later phases of the illness when many are not experiencing ‘living well’.
To support further dialogue, Alex made it clear that the Alzheimer’s Society is comfortable with fielding all questions and comments, including from their own staff. He encouraged community members to express their views and perspectives.
We asked for our community to be included in future discussions and consultations, in the spirit of ‘critical friendship’ and this was agreed.
The Alzheimer’s Society is a longstanding supporter and contributor to the Journal of Dementia Care and a valued partner of UK Dementia Congress. The Directors of ‘Dementia Community’ are committed to upholding an ongoing dialogue with Alzheimer’s Society about ‘The Long Goodbye’ and other relevant matters and there is a reciprocal commitment from the Society.
November 2024
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