Background on dementia UX and user research of the Alzheimer's Society website. By Imogen Levy, Rik Williams and Swetha Sethu-Jones

1. Inclusion through UX:
user research of the
Alzheimer’s Society
website
#WUD2017
@alzheimerssoc @systemconcepts
Rik Williams, Imogen Levy & Swetha Sethu-Jones
United Against Dementia

2. Quick intros...
Imogen
Head of Digital
Rik
UX Architect
Swetha
Principal Consultant
United Against Dementia

3. What we’ll cover
About dementia
Building a user-centred culture
The case study
Takeaways
United Against Dementia

4. Alzheimer’s disease
(severe)
United Against Dementia

5. Dementia is fatal brain
failure, a terminal
disease that physically
kills.
United Against Dementia

6. United Against Dementia
Dementia symptoms
- confusion,
- perception and vision,
- problem solving and thinking speed,
- judgment,
- processing and sequencing information,
- language and words,
- and other physical health conditions too.

7. Dementia is not a
natural part of the aging
process.
United Against Dementia

8. Dementia is non-
discriminatory,
incurable and its causes
are not fully understood
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9. Dementia is the biggest
killer in England and
Wales.
Source: Office for National Statistics: Deaths registered in England and
Wales (series DR): 2016; Statistical Bulletin, 2017. United Against Dementia

10. 1 in 3 Britons born in
2015 will develop
dementia.
Source: Lewis, F: Estimation of future cases of dementia from those born
in 2015 (July 2015); Consultation report for Alzheimer’s Research UK United Against Dementia

11. 56% of people put off
seeking a diagnosis for
up to a year or more.
Source: “Over half of people fear dementia diagnosis, 62 per cent think
it means ‘life is over’ ” study; Dementia Awareness Week 15th-21st May
2016 from the Alzheimer’s Society United Against Dementia

12. 10 minutes is the
average time spent
receiving a dementia
diagnosis.
Source: “Customer Experience Mapping: the dementia diagnosis
journey” study; Alzheimer’s Society, May 2017. United Against Dementia

13. “I’m 70 years old, but
I’m going to become a
baby. I’m going to
forget how to eat, how
to do things.”
— Person Living with Dementia
United Against Dementia

14. “It’s a 24/7 thing. I
can't sleep at night. I’ve
had 3 days off in 4
years.”
— Primary Carer, Person Affected by Dementia
United Against Dementia

15. United Against Dementia

16. Alzheimer’s Society
provides care and
support today, and
delivers research for a
cure tomorrow.
United Against Dementia

17. Our strategic ambition:
We will be available to every
person who receives a
diagnosis.
United Against Dementia

18. Our digital vision:
Harness the potential of digital to
strengthen the connections
across Alzheimer’s Society, and
between our services, our
supporters, and people affected
by dementia.
United Against Dementia

19. The story so far
● A set of digital personas
● A user centric approach
● New website in 2017 on Jadu (CMS)
● Re-wrote, re-structured and reduced content.
From 10,000 to 2,000 pages
● A new website in April 2018
● Guides, patterns, processes for #dementiaUX
United Against Dementia

20. #dementiaUX
digital design guidelines
United Against Dementia

21. Writing, words and terms
Use very clear, specific and explicit language.
United Against Dementia

22. Layout, navigation and UI
Make navigation explicit and signpost a route
back to the homepage, or the start.

23. Text and fonts
Use high contrast colour schemes to improve
readability.

24. Inclusion through UX
Visit people in context, rather than bringing
them to you.

25. The case study...
System Concepts supporting the Alzheimer’s Society in their website
user research.

26. Background for this project
The Alzheimer’s Society were planning to:
● Redesigning the site and transitioning into a new CMS
● Decided to rethink the content strategy to meet user needs
● Wanted to test the usability and accessibility of the site

27. Research questions
● Can users navigate using the site?
● Are the content and instructions understood and useful?
● Is the language and labelling clear?
● Is the website accessible?
● Are there any difficulties when using the site?

28. Our approach
A bit about what we did...

29. 1-to-1 user sessions & expert audit

30. Collaborating
Live note taking during sessions, followed by analysis
workshop

32. Recruiting participants
A range of user groups, to get feedback on usability, accessibility and
content:
• 5 x Carers (professional or family carers)
• 3 x People affected by dementia
• 2 x People with visual impairment (screen reader user, screen magnification user)
• 2 x People with dyslexia
• 1 x person with upper mobility impairment

33. Participant recruitment challenges
• Core user groups were difficult to recruit.
• Carers have limited time. We did some home visits to involve them.
• Recruitment takes time for these user groups.

34. Some insights
Focussing on the mobile site experience

35. Finding information
Participants were able to find
information using the menu.
However discoverability through the
homepage and nested menu options
needs to be improved.

36. Navigating the site
The menu had multiple levels of
nesting and options, which
increased cognitive effort for
participants.

37. Were participants able to find information on the mobile
website?
“There’s a lot of information there.
The main menu has five options
but in there there’s a lot available.”
- P9 (family carer)

38. The content and layout
Some pages had lengthy content
which was hard to digest and did not
aid skimming and ease of reading.
The term “prevention” had a
negative connotation for
participants affected by dementia, as
they felt this was not possible.

39. Did participants understand the content provided?
“Certain paragraphs could have
been shorter and had more bullet
points so the information's easier
to spot and to read.”
- P4 (participant with upper limb mobility impairment)

40. Understanding of language
Good balance without being too
medical or “dumbed down”.
However, the tone of voice needs to
be more supportive of users’
personal circumstances and emotional
needs.

41. Takeaways
How can you ensure inclusion in your digital strategy and overall
culture?

42. Takeaway #1
Involve your team in the research –
inclusive design needs to be
embedded in the company culture.

43. Takeaway #2
Inclusion emphasises that
accessibility is not a separate
aspect of design, or an
afterthought.

44. Takeaway #3
Accessibility is not just about
getting the code right.
It's about observing how your
digital service is used by real
users.

45. Takeaway #4
It’s not just pure user research and
design, it’s a cultural process.
Consider the business,
technology and team needs
when planning your digital
strategy.

46. Takeaway #5
Inclusion of target users with
different abilities in research and
design, also uncovers general
usability issues.

47. United Against Dementia