The Long Goodbye: the Alzheimers Society Campaign

This is (perhaps with not enough detail/granularity) included in the annual report.

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AS's ratio of almost 30% of its income going on fundraising is (IME) on the slightly high side of average for large charities. But in the language of these annual report, "we spend 30p of each pound on raising the next pound..."

I did. And I saw something from the perspective of those who've lost someone.

It looks to me like Alzheimer's Society raises enough money to support doctors to provide care as well as funding PhD studentships.

@chalfie they certainly do yes, but I don't think this in itself should prevent @moorhen and others from questioning - in good faith - whether a particular fundraising campaign may have misjudged the balance between eliciting sympathy and attracting cash from potential donors and sending a message that alienates and upsets their service users (viz: people affected directly and indirectly by dementia)

Have you conducted a properly weighted survey to capture the views of Alzheimer's Society service users? Or find out what drove this campaign? Because that might be something worth investigating. Rather than looking at what they spend and thinking "ooh that's a bit much".

Maybe people in the majority do feel like their loved ones die multiple times before death.

Those service users who are upset need to have their views heard. And then this needs to be explained back to the campaigners why it's not very sensitive.

Have you conducted a properly weighted survey to capture the views of Alzheimer's Society service users?

Not sure who this was aimed at but yes, I've been one participant on this sort of research project in the past, including at AS. As I said above, there will have been a basic risk/benefit analysis applied, so it certainly won't have needed a majority of service users to endorse the message in any survey/consultation, just for enough of them to do so to make the overall calculus favourable.

In my experience, spending on paperclips was, in the overall picture, negligible for all charities (with the exception of the PAS or Paperclip Appreciation Society, who spent a frankly obscene amount on them)

Nice paperclip-related edit!

I figured it was a bit snippy.

I'm just not sure how much of a problem this is?
As in, if we're supposed to respect everyone then that's fine.
And make an adjustment to the messaging now it's out and upsetting people. But it might be true lots of people do feel like this and it resonates with them.
So the bit of work is making it clear
people with A&D don't like the thought of them dying multiple times even though they're alive
people who have people with A&D do feel like they're dying multiple times.

Both things can be true.

Picking at AS about this seems like shouting at the wrong thing to the detriment of funding actual work and research that makes lives better.

Don't get me wrong, despite my knee-jerk contrariansim, I'm also ultimately a pragmatist and so I would broadly come down on the side of "fundraisers gonna fundraise".

A lot of this boils down to 'don't ask how the sausage is made'. If you believe in a cause, give money to the biggest charity in that space - they'll have the most influence and hopefully pretty reasonable efficiencies too. But they'll likely pay their CEO more than the Prime Minister, spend money on their staff's wellbeing etc etc. In full transparency, give if you want, don't if you don't.

And remember that ultimately most charities would genuinely like to work to put themselves out of existence, either by eliminating their raison d'etre or by pressuring the government of the time to take the issue on which they focus more seriously (this latter particularly relevant to homelessness charities, of which I've worked for three)

If you believe in a cause, give money to the biggest charity in that space

I would think that It's the biggest charities that spend the most on fundraising, (how much to some pay to get a bank to suggest a donation at an Atm?), and are in peoples consciousness enough for them to run marathons for these big names.

It's often the smaller charities that have more effect at a grassroots level offering more person centred interventions.

Which you both happen to be involved in?

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.

There's lots you're saying here and it's all really interesting. I don't disagree with the view people are being manipulated by a message which resonates with lots of people affected by dementia. I don't disagree with you : if people with A&D say it's offensive it needs to be fed back and needs to stop being used.
I also say: people think this is what happens. It's a thing. People have talked about. It might be offensive, but people do think their loved one dies multiple times else they wouldn't talk about it being a thing.

You say that AS have shut down lots of services they used to provide, I'm guessing that's because of finances? Maybe they took the decision that funding academic research, medical positions etc, is the way to go? Perhaps they thought "if we can get a medication out that will be amazing and also bankroll everything". What have they taken away?

There are not enough service providers around. For anything. Pick a disease, pick a condition. I can guarantee you there's not enough being done for any of them. Local government is strapped and has to provide everything to everyone on a budget of pennies.

What is the thing you want here?
More petitions signing, more people not donating to AS, people complaining to AS? People to donate time or money to your charity?
More awareness?
A boycott of AS and donation to?

Great post @Chalfie. It deserves a considered answer, but later!

https://youtu.be/82cLVZaoskI

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.

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

For a short time I worked in the marketing department of a cerebral palsy charity, I didn't stay long because I was so shocked at the disconnect between organisation and the people we were there to highlight and support. I came away feeling that the org was simply there to perpetuate itself and not to support people living with CP.

That is sad to hear. Personally I think the bigger a charity becomes, the more this happens. I guess everyone needs a job ...

Unfortunately, the m.o. in a lot (not all) of charities is to always try to increase people's victim status to make them feel they really need the charity, which provides nice jobs for nice middle-class people. That video is a case in point. Without putting too fine a point on it, it's total shit.

My line manager at the CP place was a woman who'd just moved to Brisbane from Sydney, used to be in finance, sick of corporate culture, wanted to give something back, etc. Total fucking fake, was shit around people living with disabilities and had no fucking idea. She did her best to make me feel like I was working at a fucking bank. My whole department was full of cunts, most of them simply using a not-for-profit as a stepping stone to a job in finance/media/whatever.

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.

https://open.spotify.com/show/6dXpRh5QLpDOJHLESqebkZ

In my experience working at a few charities it really is remarkable how much the behaviours of people shape the organisation. People can get away with toxic behaviours because they can hide behind the moral values of a cause or a lack of accountability due to the pressures everyone is working under. And to balance out there are lots of dedicated staff with personal connections to the cause that are brilliant and really inspiring so the charity sector is like any other industry in that respect.

For context, I'm also a charity/for-impact sector worker and prior to doing that I had worked for a while with people with neurodegenerative disease.

I think @E11_FTW makes some excellent points. I can relate to the experience of the senior leadership of charities creating organisation-wide messaging that doesn't resonate with the coalface workers, supporters or volunteers. Those people want their contribution to be from a positive place and negative messaging makes that harder.

Ultimately though, as others have noted, a lot of this is about impact. Charities ultimately exist to create change in people's lives and that requires cash, so if the campaign works to generate funding then it succeeds on those terms. I'm going to take this opportunity to repost what I think is one of the best TED talks ever, which is partly about this topic of advertising and risk taking in charities and, more broadly, the way we think about the charity sector in general:
https://youtu.be/bfAzi6D5FpM?feature=shared

This talk also refers to scale in charities with regard to the impact they achieve and I think that's the other really important part of this discussion. Big flagship charities are absolutely necessary because only at that scale can they look into systemic solutions to the issue they're addressing. At the highest level they almost act as adjuncts to government departments, which makes sense because the impact they're seeking could often be massively outscaled by policy changes or regular government financing (the inefficiency of charities working from sporadic, uncertain and last-minute government funding is a frustration).

On the other hand, seeking systemic change through those channels is a long way removed from day-to-day work with the people whose lives the charity is trying to improve. There are really interesting models for interactions between big charities and small charities/community groups. Over the pandemic there was an explosion in local groups who have local knowledge and insight into the needs of those communities. Big charities can work with them to help those groups access services within the big charities' remit. It's a pretty painstaking process though and difficult to scale and, when the big charity is drawing on significant time and expertise from the smaller group, they should also be paying them.

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