Dementia activists challenge stereotypes and push for better post-diagnosis support
14 reported1 conflicting
A group of people diagnosed with dementia are pushing back against what they call “prescribed disengagement” and negative stereotypes about the condition. Maxine Linnell, a retired psychotherapist from Leicestershire diagnosed four years ago, said many people’s attitudes changed immediately after her diagnosis, with some professionals also seeing only the dementia. Julie Hayden, a nurse and social worker from Yorkshire diagnosed nine years ago at age 54, said she was told at diagnosis to get her end-of-life affairs in order. George Rook, an ex-teacher from Shropshire diagnosed in 2014 at age 63, was advised not to take risks, not to get tired, and to prepare. The activists criticize the 2024 Alzheimer’s Society ad “The Long Goodbye” for reinforcing stigma, with Linnell starting a petition against it. The Alzheimer’s Society defended the ad as showing the “unvarnished, devastating reality” of dementia. The activists call for better support including access to Admiral dementia nurses, dementia training in medical education, and a national dementia pathway.
What’s reported
Maxine Linnell, 78, a retired psychotherapist in Leicestershire, was diagnosed with dementia four years ago.
Julie Hayden, a nurse and social worker from Yorkshire, was diagnosed nine years ago at age 54 after being told her symptoms were depression or menopause.
George Rook, an ex-teacher in Shropshire, was diagnosed in 2014 at age 63 and given three pieces of advice: don’t take risks, don’t get tired, and prepare.
Kate Swaffer, an Australian dementia campaigner, calls the advice to disengage “prescribed disengagement.”
Swaffer and Hayden both lost their jobs after diagnosis.
Hayden established the Young Dementia Network; Swaffer cofounded Dementia Alliance International.
Recent research found half of people in the UK fear dementia more than any other health condition.
The 2024 Alzheimer’s Society ad “The Long Goodbye” used the strapline: “With dementia, you don’t just die once; you die again and again and again.”
Hayden was one of 10 activists in a steering group that previewed the ad; all 10 said it was irresponsible and were ignored.
Linnell started a petition titled “Stop negative and inaccurate dementia publicity. Show the hopeful, creative possibilities.”
The Alzheimer’s Society said the ad aimed to show the “unvarnished, devastating reality” and that sugarcoating would be a disservice.
Hayden uses a wheelchair; Swaffer and Linnell both temporarily lost language during stressful events.
Rook said most people diagnosed do not get an annual dementia review, and when they do, the GP often knows less about dementia than the patient.
The activists call for access to Admiral national dementia nurses, dementia training with lived experience in medical training, and a national funded dementia pathway.
Conflicting accounts
The article reports that the Alzheimer’s Society defended its “The Long Goodbye” ad as showing the “unvarnished, devastating reality” of dementia, while the activists criticized it as reinforcing stigma and fear. The Society stated that for too long the hard reality of late-stage dementia was hidden, making families feel unseen and unsupported.
Key figures
Maxine Linnell, retired psychotherapist, dementia activist
Julie Hayden, nurse and social worker, founder of Young Dementia Network
George Rook, ex-teacher, dementia activist
Kate Swaffer, Australian dementia campaigner, cofounder of Dementia Alliance International
Christine Bryden, Australian dementia activist
Sources: The Guardian
