Alzheimer’s Society Case Study: Making Equitable Process Innovations, Inside and Out
by Suhlle Ahn
Imagine you’re a small, grassroots organization in the UK. You serve a largely Black, Asian, and minority ethnic (BAME) stakeholder group. And one day you receive a letter from a large UK charity. They’re interested in having your organization work in partnership with them. The letter is issued from their legal department, and in order to initiate a contract, you’re asked to review, comply with, and submit a host of legal and procurement paperwork.
How might you react?
This exercise in perspective-taking was similar to one Paul Reynolds (he/him), Associate Director of Partnerships at Alzheimer’s Society in the UK, described when we spoke about the organisation’s efforts to expand their outreach to a more ethnically- and racially-diverse audience.
Paul and his team took part in Equity Sequence® training earlier in the year. And before long, it had them turning a mirror on themselves and looking at their outreach process through the eyes of organisations quite different from their own.
Their equity goal
Alzheimer’s Society is a UK charity committed to advocacy, conducting dementia research and serving individuals and their families affected by dementia. They have as an equity goal:
“to address health inequalities by reaching more people in more communities, and to mak[e] themselves as accessible and equitable as possible for ALL people with dementia.”
They also have a comprehensive EDI mission that looks at inclusion “in its widest sense.”* But in my conversation with Paul, it was their desire to build greater racial and ethnic inclusion in particular that took center stage.
UK stats: dementia, BAME communities, and the charitable sector
One reason has to do with the whom they serve. While dementia as a disease cuts across every identity marker besides age, not all UK demographic groups access dementia-related services to the same degree. Nor are they represented in dementia research in equal measure.
And what research there has been reveals differential diagnosis and mortality rates among groups.
An eleven-year study, for instance, found that, after controlling for factors like age, sex, and socioeconomic status, Black people in the UK “had a 22% higher incidence of dementia recorded than white people” and die 2.7 years younger on average than white people.
While the (recorded) incidence of dementia among the South Asian population was 17% below the average for white people, the research found UK dementia patients of South Asian origin dying “3 years younger on average than white people studied.”
As Alzheimer’s Society themselves point out, “research suggests BAME communities often face delays in dementia diagnosis,” as well as barriers in accessing services.
And as the UK population continues to change, the number of people with dementia from BAME communities is expected to double by 2026. So outreach and collaborative partnerships are critical toward building “a more inclusive support structure” and toward adapting policies and approaches.
*
A second why for the focus on racial and ethnic inclusion may have to do with the demographic make-up of the UK charitable sector itself. Even compared to its public and the private sectors, the UK’s third sector has been lacking, historically, when it comes to racial diversity.**
According to a 2018 report, “Racial diversity in the charity sector” by ACEVO (Association of Chief Executives of Voluntary Organisations):
Fewer than 9% of voluntary sector employees were from Black, Asian and minority ethnic groups (BAME)—a lower proportion than both the public and private sectors (both at 11%), and a lower proportion than the UK as a whole (14%).
The report also contained these stats:
Of the 500 largest UK charities by income, only 5.3% of senior leadership teams were from an ethnic minority background—with BAME women representing only 2.25% of leaders
Chinese and other Asian ethno-cultural backgrounds were virtually non-existent, making up only 0.3% of charity leaders in the largest 100 charities by income
Only 3% of charity CEOs were BAME, and 92% of all charity trustees were white
In fact, Paul used the term “white UK” as shorthand to describe a certain stereotype about UK charities:
that they’re led mostly by middle- and upper-middle class white women with an abundance of time on their hands
that their current service base is largely white and middle-class
The George Floyd protests
As with so many organisations, the summer of 2020 and George Floyd protests were galvanizing events for Alzheimer’s Society.
It can be easy to forget how truly GLOBAL in scope those protests were—how they took place “in over 60 countries and on all seven continents.” Outside the U.S., the largest number of protests took place in the UK.
Paul, who is gay, understands being a member of a marginalized group himself, and he recounted his own personal progress—from someone well-aware of, and long bothered by, racism—to someone eager to take the “next step” toward doing something to more actively address systemic racial injustice.
Alzheimer's Society made a similar commitment. And yet, as Paul put it,
“We can't just assume that because we're here, when we want to be more diverse, that that's just magically going to happen; that people are going to go, “Great. We've just been waiting for you to be more diverse and equitable in your approach!!”
Outreach to other organisations that can help them carry out their service mission is part and parcel of the work done at Alzheimer’s Society.
At the same time, as one of the UK’s largest registered charities, they are, as Paul explained,
“primarily set up for partnerships with organisations that mirror us.”
In concrete terms, this means organisations of similar size and legal structure—i.e., comparably large, registered charities.
Less palpably, it means organisations used to a certain way of communicating—a certain style of language, tone, and approach. (To use Paul’s tongue-in-cheek translation: clinical, contractual, and quite corporate in character).
So when they found they weren't getting the types of partnerships they were seeking toward their diversity goals, they turned to their Equity Sequence® learnings and applied the 5-question framework to elements of their outreach process. This prompted them to think about—and take steps toward—making changes to those elements.
As one step, they sought out organisations they’d been keen to work with in the past, but who had found Alzheimer’s Society difficult to partner with.
They pointedly asked for feedback on why. What kinds of barriers might they inadvertently be creating or failing to take down?
One answer?
Their processes and paperwork could be seen as “onerous” and “unfriendly.”
It led, in Paul’s words, to this ‘aha’ realization:
“Designing a partnership process without including these groups [e.g., grassroots organisations, social enterprises, and/or community interest companies, who may be legally set up or structured in a different way] limits the experience for the very groups and organisations we want to work with."
A process they’ve been used to…
By default, when Alzheimer's Society seek to make contact and establish a relationship with an outside organisation, they send a letter from their legal team. For them, as Paul explained, it’s just a long-standing process they’re accustomed to.
“We’re used to organisations that just say, “Yep, yeah, this looks good,”” Paul said. “It’s a contractual arrangement. You deliver this; we’ll deliver that.”
But to a much smaller, grassroots organisation, he added, “a legal approach like this can actually be an alarming one.”
“It’s fair to say people can be quite distrusting of a larger organisation like ours,” he said. “Being asked for all kinds of documentation or information they've not been used to giving could be off-putting.”
And it was something they simply hadn’t stopped to consider—accessibility for their desired audience, in terms of language, tone, and approach.
So, once again, in thinking about how they might modify their process to make it less onerous, they “took the questions from the Equity Sequence® back to everything.”
Question: “Who was missing from the conversation when this very strict, legal approach was put together?”
Answer, according to Paul: “Probably 90% of the voices we’re trying to reach!”
“Now, I'm not gonna lie,” Paul admitted. “It’s not easy, internally, to just change our processes. Because we still have governance and laws.”
But it's how they talk to other organizations—their communications channels, engagement methods, and literal word choices—that they’ve realized they can modify, to make these as accessible and equitable for other organisations as possible.
Another step they’ve taken toward more equitable outreach?
Engaging in activities with organisations they’re interested in that might not, for instance, yield an immediate outcome. They’ve realized the importance of building relationships, and they’ve recognized the need to put time and effort into building these.
“It's kind of humbling,” Paul acknowledged. “You realize people have things to teach us, you know? And we shouldn't be arrogant enough to forget that.”
“And it’s an ongoing process,” he added, “because what works for one organization might not work for another. And that's another lesson for us. We can't necessarily have one rigid, uniform approach. We have to think about what works.”
*
Our conversation took a turn from external to internal—from audience and partner outreach to employee recruitment.
Recently, Paul had the opportunity to expand his team, and he wanted to take whatever steps he could toward building a more racially- or ethnically-diverse one. Once again, by applying the nudge of Equity Sequence® questioning to their interview process, he and his team arrived at a more expansive, equitable, and innovative approach.
Our chat took place not long after the U.S. Supreme Court gutted affirmative action in higher education. And Paul—a professed “obsessive observer” of American politics (like his interviewer...)—didn’t shy away from bringing this up.
Although not identical, the UK’s version of affirmative action*** in the U.S. is called “positive action.” (See Chapter 12 of the Equality and Human Rights Commission’s Employer Code of Practice). And just as affirmative action in the workplace is governed by Title VII of the 1964 Civil Rights Act, positive action is defined and governed by the 2010 Equality Act. In both cases, the law makes clear that certain practices—racial quotas, in particular, or spots “reserved for” individuals with certain protected characteristics are impermissible.
So what COULD be done to promote greater racial diversity in their recruitment and hiring process?
To challenge themselves, Paul and team first sought out voices from a group they hadn’t previously consulted—namely, Alzheimer’s Society’s own Equity Network.
Through these discussions, and once again turning the mirror on their existing interview process, Paul and team began to see how they—like so many organisations—were used to using ‘tick box’ criteria as proxies for certain skills, abilities, and attributes:
a college degree
two years’ writing experience
experience writing bids
But were these proxies necessarily and inherently a reliable measure of the skills and attributes they were after?
And what skills and attributes WERE they really after?, they asked themselves.
They came up with a list. Creativity. Resourcefulness. An ability to think on one’s feet. An ability to manage one’s time and to meet a critical deadline; an ability to tell a story.
So how might they look for evidence of these in different ways?
They landed on a more creative set of requests, including these two:
“Please be able to talk about how you approach things creatively.”
“Please talk to your ideas for how you might make our approach to funders more engaging.”
And, as Paul told me, in the end, they found the interviews far much more interesting. Less cookie-cutter.
“By framing things in a way that opened it up to any background and any experience, it really helped us bring in different answers from the norm.”
Instead of “Tell us about a project you've managed from start to finish,” they arrived at, “Tell us about something you’ve created, or talk to us about how you’ve managed your time, whether at a job, at home, or on your weekend.”
One candidate spoke of their need to make ends meet while growing up; of being the oldest and having to be creative in the house; of helping to keep their siblings entertained, balancing the books, and doing the food shopping, while their mom worked two jobs.
As Paul explained, it wasn’t so much the experience itself, but the way they told it—with a skill in verbalization and persuasion that they could foresee being useful and necessary in presenting to funders or talking to partners.
It reflected a loosening of a certain rigidity. No longer a “where's your two years’ experience?” Or “where's your evidence of time management skill in the workplace?”
*
These examples of creative, equitable innovation to processes both inside and out—to internal hiring practices and external partner outreach—are exactly the kind that excite and inspire us to share.
Through changes like these, and with the help of Equity Sequence®, Alzheimer’s Society are finding ways to generate equitable progress toward their goal of reaching more people in more communities and making themselves as accessible and equitable as possible for ALL people with dementia.
Notes
* “We believe everyone should be able to make a full contribution to society in a world which celebrates diversity and values inclusion. We all have the right to be the person we are, to live without fear or prejudice regardless of race, age, gender, sexual orientation, faith and belief, or a disability, like dementia.
To drive this inclusion, we want to be a place where everyone feels confident in engaging and involving the widest range of perspectives, ideas, and opinions to make an even bigger impact for people affected by dementia.
We believe we can achieve this best through looking at inclusion in the widest sense – where new and different voices are being heard and responded to with a desire to speak up and out to make us a better place to work, support and be supported by.”
** As a point of contrast, Paul pointed out that Alzheimer’s Society in particular have done especially well with its LGBTQ+ makeup.
***The term “affirmative action” was first mentioned in Executive Order 10925 in 1961 and again in Executive Order 11246 in 1965. As of this writing, it is still permitted in the workplace, but specific practices like quotas are (and have always been) viewed as discriminatory, according to Title VII.