Dementia campaigners outraged at 'unbalanced' advertising campaign by Alzheimer's Society

During World Alzheimer’s Month, some dementia campaigners throughout the UK and the rest of the world are outraged that an advertising campaign by the Alzheimer’s Society, which has already caused distress to thousands of people, is being aired once again on television.

While some people agree with the theme of the advertisements, others are appalled that after the Alzheimer’s Society initially acknowledged the hurt this advert has caused, their only change is the inclusion of a helpline number (the advertisement was originally aired in March 2024).

Two of those who are highlighting this are dementia activists Maxine Linnell and Dr Carol Sargent of Sargent Group Consulting. Both have personal experience of dementia and both feel the advertising campaign is unbalanced.

The Long Goodbye is an advertising campaign which features a son speaking at his mum’s wake. She had dementia. The message was that those with dementia ‘die’ again and again and again.

As one in three of us will be affected by dementia, the Society wants to raise the awareness of policy makers and the general public, to prevent the devastation dementia can bring.

When originally aired, the campaign attracted criticism. The Advertising Standards Authority or ASA received more than 230 complaints, the largest number of complaints it’s received so far in 2024 and one of the highest numbers of complaints since the beginning of 2023.

In just six weeks, a petition to ‘Stop Negative and Inaccurate Dementia Publicity’ was signed by 1,800 people. More than a hundred people took the time to explain why they had signed.

Asked about the restarting of the advert after the ASA dismissed the complaints, the Alzheimer’s Society reiterated their initial statement: “At every stage of development of The Long Goodbye, we took immense care to ensure we’re telling this story compassionately and authentically.”

They have now recognised many people were disturbed by the advert. “It was never our intention to cause distress.”

They have also said: “Most of the public received the advert positively and there is a huge number of people who’ve felt this is the first advert that truly represents their dementia experience. Many people have expressed relief and gratitude for the campaign – finally showing them that many other people have experienced the same, utterly unacceptable levels of pain and struggle that they and their families went through.”

Yet Maxine and Dr Carol Sargent are concerned that none of this evidence is publicly available, nor is there an explanation of why an analogy to dying was used.

It was Maxine Linnell, who lives in Rothley in Leciestershire, who started her petition back in March. She is a writer and retired psychotherapist, and was diagnosed with dementia in 2022.

She told us: “This advert is setting back years of work which gave people living with dementia a voice, and started to treat us with the respect we deserve.

“I really don’t understand how the biggest dementia organisation in the UK finds it acceptable to cause a level of distress which motivated so many people to make complaints and sign my petition.

“Or why the advert contradicts the advice the Alzheimer’s Society gives on their own website? Surely the society should be reducing fear and stigma by highlighting the different ways to communicate so people living with dementia and their families can feel better supported to live their best lives.”

The Alzheimer’s Society have told us that: “An important debate has begun. We need to keep telling the truth about this devastating illness to ensure dementia gets the long overdue attention it deserves and is made a priority among the public and decision makers.”

However, Dr Carol Sargent, of Sargent Group Consulting, who cared for both her mother and mother-in-law when they had dementia, said: “Where is the debate that the Alzheimer’s Society are speaking about? Lots of people would love to see a public debate on this. All I see is a negative narrative around dementia. It is a chronic illness which ultimately causes death, but this should not prevent people from finding ways to live their best lives.

“People diagnosed with young onset dementia have a seven times higher risk of suicide. We had to overcome massive challenges with my mum and mother-in-law, not least the needless early death of my father. What we really need is an open and transparent debate. Policy makers need to hear what people with lived experience want, not just the unbalanced views in an advert from the UK’s largest dementia organisation.”

• Photo shows Dr Carol Sargent of Sargent Group Consulting