In the last week of April, members of the Dementia Alliance International community gathered for our monthly Cafe le Brain. This event offers a unique opportunity for members from all support groups to connect in a supportive and casual environment.
This month, the Cafe assumed a more solemn atmosphere in the aftermath of a recent advertisement campaign by the Alzheimer’s Society in the UK. DAI members and dementia advocates Julie Hayden and Maxine Linnell shared their thoughts on the campaign, titled ‘The Last Goodbye,’ highlighting the adverse effects it has had on them and their friends living with dementia.
A recording of the Cafe can be viewed through the link below. Please note that this video contains the original Alzheimer’s Society advertisement which may be distressing for some viewers. If you wish to skip this you can do so. It plays from 3:00 to 4:33 and is time stamped.
After their speech, the floor was opened for general discussion in which many members expressed dissent towards the ad. It also felt that the ad did not abide by the Alzheimer’s Society’s own information standards which state that dementia information should be, “based on the needs and experiences of people affected by dementia.”
Maxine highlighted her concern that this is a huge step in the wrong direction, setting back years of work to change the attitudes towards dementia. She also expressed this in her blog stating:
“The Long Goodbye has already set us back, and it’s set back all the work that’s gone on over years for change. If you’re afraid of having dementia, if you think you might have it, if you have a diagnosis, if you know someone who has dementia, if you’re one of the 50% of people who will know someone who develops dementia, please don’t believe this ad’s message.
And please do what you can to stop it going out.
Nobody wants to spend years saying goodbye. We all want to live and connect with each other.
And we can.”
It is for this reason that she started a petition to have the ad campaign removed, which has gathered over 1500 signatures in just one month.
You can sign the petition here: /dementiahope
Maxine also wrote:
“The campaign is inaccurate. So many of us are fully alive with dementia, living full and enjoyable lives. Nobody wants to have dementia, but we can adapt, we can change, just as everyone can adapt and change when we’re supported.
This campaign is going to stop people from finding and getting help.
This ad is going to delay early diagnosis, and the Alzheimer’s Society says it believes in early diagnosis. Their website has a guide to living well after a diagnosis.
We know we’re going to die. But people are living full lives for years after a diagnosis.
Every human being is going to die. And for now we’re not dying, we’re living.”
Maxine’s words echo the sentiments of many people living with dementia. You can read the full article on her own blog here: /post/the-long-goodbye-or-not
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About DAI: Dementia Alliance International (DAI) is a non-profit group of people with dementia from around the world seeking to represent, support, and educate others living with the disease that it is possible to live more positively than advised with dementia. It is an organization that promotes a unified voice of strength, advocacy and support in the fight for individual autonomy, improved quality of life, and for the human and legal rights of all with dementia and their families.