Editor’s note: This article was written before Sir Stuart Etherington published his review of self-regulation last week with proposals for a ‘Fundraising Preference Service’.
We need to talk about Dementia. And yes, that is meant to be Dementia with a capital D. Not ‘generally just getting old’. Not ‘lonely old person’. Not ‘losing your marbles a bit’. But Dementia. My knowledge is not that of an expert, but I’ve got some, thanks to a couple of fantastic years working for a small brain research charity. It’s a brain disease. A disease with causes, symptoms and treatments, just like any other.
My old dear is the wrong side of 65, but if you tried to convince her that she was a vulnerable old person, she’d smack you in the teeth.
Why is this important? Because it’s important to draw a line around it and isolate it as an issue within marketing, so that articles like this one – and the article in the Daily Mail last month that described how a retired army office with Dementia had been scammed after charities sold his personal data – don’t descend into rampant sector-bashing, but instead prompt us to solve issues.
Don’t get me wrong, the issue of treating supporters empathetically and sensitively is an important one, however old our supporters are. But I feel that it’s important not to get mixed up between ‘protecting people that are vulnerable because they have dementia’ and ‘protecting people that are vulnerable because they’re old’, for a few reasons.
Old and vulnerable are not necessarily the same thing
First, the two groups are not interchangeable. My old dear is the wrong side of 65, but if you tried to convince her that she was a vulnerable old person, she’d smack you in the teeth. In an age of increasing interconnectivity and better medicine, older people are living longer, more active lives. They’re using the internet and using their voices. They can speak for themselves.
In fact, the Institute of Fundraising said this month – in response to recommendations made by the FRSB in its report into Olive Cooke’s death – that it would be “discriminatory” to treat people differently solely because of their age: “The age of an individual does not, in itself, mean that person if vulnerable,” IoF says (s3.2).
Charities should not isolate older people
Second, we have to question the responsibility of charities to ensure that older people are not isolated, which can lead to vulnerability. That’s a bigger issue than any charity – it involves fundamental societal change in both a micro and a macro level in the way we view, and treat, older people. In terms of ‘taking advantage’ of isolated older people – how is this the case when older people continue to respond, financially and non-financially, to charity appeals?
I remember the broad range of touching messages I received after a Christmas Appeal last year, from people that felt a real connection to the charities they were giving to. Let’s be logical about this – if I’m an old person who is lonely, my only correspondence may be from the charities I give to. That puts responsibility on charities to provide a fantastic donor experience so that donors feel good about giving. It doesn’t put responsibility on fundraisers to move away from what they’re there to do (raising money for their cause) or to solve the issue of isolation of older people.
Guilt is not an issue confined to older people
Third, a lot of column inches are given to stories of stereotypical vulnerable older people feeling guilty at saying no, so give beyond their means. But giving out of guilt is an issue across the charity sector, for donors young and old – and yet we feel that we need to isolate ‘guilty older people’ as a separate issue. This again belittles the capacity of older people, without dementia, to make decisions with the same degree of logic (and emotion) as anyone of any age.
I’m not saying we shouldn’t talk about and explore the ‘guilty donor’ issue, but I am saying that we shouldn’t confuse this with the issue of vulnerable people with dementia. Isolation in the older generation, ‘guilty donor’ syndrome, and dementia are vastly complicated but entirely different issues – they need to be dealt with individually, not in some tabloid panic.
So what do we do about Dementia?
Hopefully we’re all agreed that yes, people with dementia (despite being impossible to categorise as every case is totally different) can be vulnerable. But what I haven’t seen from the sector as a whole is an acknowledgement that we need to do more to protect people with Dementia.
I genuinely think this fear comes from mixing the two issues above – charities rely so much on people that are 50+ or older that they don’t want to deter them from giving. It’s also an issue that I’ve seen very little cross-sector working on. I would argue that individual charities are doing their bit – when they find out someone has dementia, either via inference on the phone, or via contact from a relative, they stop contacting them. But that’s just not enough.
A conversation I had with a telemarketing agency (I won’t say which one), regarding Olive Cooke, confirmed exactly this. This agency alone had contacted Olive six times. Sounds worthy of the Daily Mail (especially when you think that other telemarketing agencies may also have contacted her – if two other agencies contacted her, that takes it to a conservative estimate of 18 contacts). However, did the agency do anything wrong?
Isolation in the older generation, ‘guilty donor’ syndrome, and dementia are vastly different issues – they need to be dealt with individually, not in some tabloid panic.
Six times, they contacted Olive – all, crucially, for different charities. Six times, the caller correctly identified that Olive was vulnerable, and ended the call politely, without an ask, and sent the record back to the charity marked ‘do not contact’. Not a penny was taken from Olive by these callers. And yet, they contacted her six times. Why? Because they had no internal process to share the information that calling Olive wasn’t a great idea.
Some agencies have taken steps internally to rectify this, producing internal ‘do not call’ house files to make sure that the do not repeat call the same donors. But this only solves the problem on a small scale, providing a ‘donor experience USP’ for an individual agency to use in pitches. It doesn’t solve the overall issue – which could only be done be sharing data sector wide.
People get a bit squiffy about the idea of sharing data like this, and I’m sure there are all sorts of ethical and medical considerations to be taken into account. But according to the Daily Mail’s article, lists contact details containing people with Dementia are already being created and used – the problem is they’re being used by scammers: “so-called ‘suckers’ lists’ of people likely to respond”. So, it feels like the only way to combat this is to fight fire with fire.
How do we protect genuinely vulnerable people?
There’s a really straightforward process here to protect vulnerable people and make their lives, and their families lives, easier:
- A neutral body sets up a ‘Vulnerable’ list of people we absolutely should not call on absolute pain of death and big, big fines. Only charities with direct marketing programmes can access it. There are precedents for this. Last year, Police Scotland announced it was establishing the Vulnerable Person Database (see p15). And some councils also run similar databases.
- Every campaign we run, direct mail, phone or any other direct marketing, we screen against this list, in the same way you’d use something like Mortascreen. Screw it, make it compulsory.
- Every campaign we run, if it uncovers more vulnerable people, you share this info with the neutral body to add to this list – maybe seeking the help of an organisation like this one to write guidelines as to how to add people to the list.
Simple! If you wanted more medical certainty, the neutral body could also set up a welcome calling programme (‘thank you for your support of *insert charity* – and then a list of questions designed to recognise Dementia/other vulnerability).
Of course, the first person to read this article on my behalf rightly pointed out that this is a massive data protection issue – as they put it, “You can’t add someone to a database without their permission…suppose the caller misidentified someone as vulnerable and added them in error?” But I think this is a key point to the issue – where does the responsibility of society end, and the responsibility of the individual (or their carer) begin? If we had a truly joined up ‘Big Society’, what would stop GPs offering to add people to a list like this at the very point they deliver a dementia diagnosis?
Of course there are logistical limitations, but data protection legislation in itself exists to protect people, especially vulnerable people. If scammers can so easily bypass DP legislation on their way to creating ‘suckers’ lists, then maybe we need more flexibility to combat them.
The trouble right now is that confidence in the charity sector is so low that we wouldn’t be trusted to just be making our own ‘suckers’ list – people would genuinely think that. But it seems a relatively simple move that would show the charity sector proactively protecting vulnerable people.
- Christian Dapp is director of fundraising at Childreach International and a member of Rogare’s advisory panel.
Treating Donors Fairly – Institute of Fundraising’s guidance on dealing with vulnerable people.