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That's a very interesting Ted talk and I agree with you 100%. We need big charities to influence government, and we need dementia and disability to be better understood in society. Small social enterprises play their part but only on their patch. Food for thought for me in running a small organisation, thankyou.
But it still feels unethical to broadcast a campaign like this. I am not aware of any large charity that has taken a stance to terrify those it exists to support. Those who may be worried they have dementia, (and there is a whole lot of clinical experience and research around living with the risk of an inherited dementia which involves dealing with the existential fear of getting what their parent, sister, brother has endured). It is powerful marketing, but very damaging when so much progress has been made in tackling the stigma attached to dementia. To my knowledge cancer has never been portrayed in this way? And the stigma of cancer is now far less with advances in treatment and nutritional advice. The guy says people need fun, love, and a safe place
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Dementia UK is a fantastic organisation. Their new podcasts sharing the multiple views of people affected by dementia, enabled by Admiral Nurses who are specialists in working with carers of relatives with dementia.
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That is sad to hear. Personally I think the bigger a charity becomes, the more this happens. I guess everyone needs a job ...
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I was part of a global meeting discussing this, so tge subject will never be dropped. Awareness of what it is to experience and live with the daily challenges of dementia in all it's forms is so important, and to gradually chip away at the stereotype that is commonplace. Community spaces, public buildings, hotels etc all need to be far more disability aware in their design, as do much of the general public. Dementia has a beginning, a middle and an end, can continue for decades and throughout the person affected and their families must manage. The search for a cure is seen as the answer, but we already know that nutrition and lifestyle play a big part in its development. More attention to prevention might save the crumbling NHS. IMO. But I do understand I too live in my own bubble, as does the AS, so it is interesting to hear everyone's views as although cycling connects us, LFGSS is a very diverse community
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This from the Scottish government is more helpful I think. See the article here: https://www.gov.scot/news/new-rethink-dementia-campaign/
I don't deny that loss is bereavement, and that living bereavement is a thing. But, as a clinician, and I believe you are a doctor? it feels to me irresponsible. In this day and age I would like to think we have moved on, and wouldn't describe a human being as dead, and will continue to die again and again. Terrifying to see all over the TV and social media, a happy place for people living with dementia.
I get everyone wants to do their job well, and fundraisers are fundraisers, and they have met their goal for the AS. And yes they are more focused on raising awareness and funding research projects, so important, but they still use people with dementia to sell their brand. Many will no longer do it. And Maxine Linell who has Alzheimers started a petition which thousands of people signed. The advisory board of families for the AS were only consulted on the finished product and asked them not to release it.
Are you aware of all the people with dementia conducting research, and speaking at conferences, and engaged in peer support .. The DEEP network?
https://www.dementiavoices.org.uk/
My organisation enables people with dementia to cycle, and connects people with activities to promote brain health. Neuroplasticity is a thing too, alongside medication for those who can tolerate it. -
Great post @Chalfie. It deserves a considered answer, but later!
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This is true, but the only thing that makes a difference to people with dementia now is being treated like a human being and have opportunities to experience wellbeing. The AS says in the same ad they will be there for you again and again and again. Not only have they shut down all grassroots services, except the ones taken on by local councils , but those services cannot deliver enough support or discharge people when they get difficult. Active things like cycling help. Losing people can make families angry, but mostly very sad. Broadcasting this has angered carers too. Dementia is different for everyone, because it might affect any part of the brain, and illness in the family has different effects both between and within different families. Research is important, advances in medication help, but quality of life is important and there needs to be so much more focus on living with dementia, providing opportunity to promote neuroplastity (yes people with dementia can learn new things). The stigma and stereotyping of what it is to have dementia is rife, expressed in everyday language. Big charities do good work but also pay huge salaries and deliver very little on the ground work. I have worked for 35 years with people with dementia, from age 15 years (yes teenagers) in the NHS. The voluntary sector and I now run For Brian CIC to address gaps in support due to postcode, deliver and support access to activities that are fun, even adventurous. This campaign is cruel and won't change anything for the people it is hurting. There has been a petition of complaint, signed by a record number of people. As took it down but have re released again recently and aren't bombarding prime time TV. So at least young kids with parents with dementia won't have to watch it. Not sure anyone has yet convinced me it's not corporate abuse of ordinary people's pain.
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I hope that is not the general strategy. Do look at http://Www.forbrian.co resources, and/or DM me to discuss what would help
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Do dm me and i can perhaps help?
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I think this campaign represents a change in focus, and raises money for a lot people in offices apparently employed to harass people looking for information to donate to the charity a lot of people with dementia are now refusing to have anything to do with
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I am sorry to hear this. What support do you and your family have?
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Relevance I do not deny, an ethical way for a charity to behave quite another.
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@Chalfie did you watch the video campaign? The ethical issue of conveying people with dementia as dying again and again and again is the question. It was released without the rubber stamp of their ambassadors with dementia.
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I am sure you are right. But what big league charities produce a campaign that has greatly disturbed the people they are supposed to support? The experience of every person with dementia is different, and the grief in families is expressed in very different ways. With a broad clinical experience I have not found this to be the norm, and how will someone worried about dementia be encouraged to see a doctor by portraying their future in this way?
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Gosh so you woukd have been involved in the production of campaigns like this? What do you think of it? If you woukd prefer to keep it private, do message me directly. It was withdrawn and now re released. The AS staff on the ground that I were shocked but have been trained in the party line ...
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https://youtu.be/m06RTgI3Oqk
There has been a lot of controversy about this campaign, and a record number of people with dementia making complaints about being portrayed as dead. My work is about living life to the full (http://www.forbrian.co) and Positive Spin (https://www.lfgss.com/conversations/270933/?offset=25#comment14521667) was conceived with @skydancer to deliver amazing opportunities for wellbeing in the moment, experiences of independence and leaving what our patron Peter Berry (who rides a penny farthing) "my dementia monster at home".I would love to hear people's thoughts about this video, from people who have experienced dementia in their lives, but also those who have been fortunate not to.
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