Including people affected by dementia in user-centred design with Alzheimer’s Society

Rik Williams, User Experience Architect at Alzheimer’s Society with a particular interest in user research, information architecture and accessibility, has teamed up with People for Research to share his experience of recruiting and involving participants with dementia in user research.

Back in June, People for Research ran a workshop on user recruitment at the annual conference User Research London 2018. The workshop tasks were based on experience gained working with the Alzheimer’s Society, and a couple of other charities and government teams, through digital transformation projects.

Alzheimer’s Society is the UK’s leading dementia support and research charity. People for Research have supported Rik Williams, UX Architect, by providing user recruitment for a number of different projects, which have presented unique challenges.

We recently had a conversation with Rik about his experience of finding the participants, the different methods he uses and some of the limitations and successes he has experienced.

Tell us more about the work you are doing

Meet dementia, the UK’s biggest killer

The dementias, which include Alzheimer’s disease, are now the leading cause of death in the country. They devastate lives at scale and have higher health and social care costs than cancer, stroke and heart disease, combined.

Dementia is best thought of as fatal brain failure. It is not a normal part of the ageing process, but it does affect older people more. It is non-discriminatory, incurable and its prognosis is always terminal. These changes significantly affect people’s ability to find and access online dementia support.

Challenges for UX research and design

The mix of brain changes, oftentimes older populations, and demands of dementia care create real challenges for inclusive user experience research and design, especially if you are a ‘UX team of one’ running an agile user-centred design process.

In particular, the twin challenges of:

• Including representative service users throughout the service design process.
• Reaching both existing service users and those who, hitherto, have had no contact with the Society.

Reaching people who don’t use our services is especially important for the Society because we have a strategic ambition to “reach out to everyone from the time of diagnosis to offer help, and deliver a universally accessible support and advice service”.

How do you engage with current service users?

Our principal support service users are people who are:

• worried about brain changes (usually changes in memory)
• waiting for a diagnosis
• newly diagnosed
• primary/secondary carers (usually immediate family)

More widely, we design for healthcare professionals, like GPs and care home workers. For research purposes, we also sub-define these group into those who have used our services before (warm users), and those who have not (cold users).

As a dementia ‘Society’ we are inherently user-centric and evidence-led. We maintain close contact with our service users, including them in panels to decide which medical research projects are funded, what dementia awareness campaigns are run and how to deliver support services in their communities.

Correspondingly, we have a number of internal teams set-up to include service users in these processes.

However, these avenues to service users have three key limitations for an agile UX team:

Time | It can take days-to-weeks to contact service users to include them in research.

Opportunity cost | Spending time on research operations (#researchOps) means forgoing user experience design, which is especially significant for a UX team of one.

Representativeness | Our internal databases only include people who have had close contact with (are ‘warm’ to) the Society.

What other tools do you use to support this?

Since pioneering UX research at the Society I have relied upon two main sources for consistent participant recruitment:

1. Ethnio and Google Tag Manager

Ethnio is an intercept service for UX research participant recruiting, scheduling, and incentive payments which can be run across a web service, or by a direct link. Ethnio enables me to reach thousands of Society online users per day and invite them to help shape the user-centred design of our digital services.

Paired with Google Tag Manager I can also effectively pre-screen and sample live service users, from across our digital domain, by targeting groups of people based on the content they access (and so their inferred user needs and persona types).

However, live intercept services, like Ethnio, have a crucial limitation. They can only reach current users of digital services. For the Society, this excludes people who:

• don’t yet know they have a dementia diagnosis
• have limited digital literacy
• do not know that the Society exists
• think we only work with Alzheimer’s disease
• are time-poor healthcare workers

Enter, People for Research…

2. People for Research

Internal participant databases and recruitment services like Ethnio, no matter how good, are only ever one part of a UX researchers recruitment toolkit. When I wish to include “cold” audiences, who are almost impossible to reach any other way, I work principally with People for Research.

I find that professional recruitment partners are especially useful when:

• recruiting hard to reach and niche users, like people with diseases, or busy roles
• running consecutive cycles of research, with tight timelines
• conducting design research concurrently with external agencies
• you don’t want to screen, coordinate and remunerate participants yourself
• budget exists!

We are currently running an exploratory project to find ways to integrate and engineer content from across our very diverse online support services so that they better meet user needs (and more often).

As part of this project, we are running three major cycles of prototyping and usability testing in different parts of the UK.

People for Research are recruiting 15 ‘cold’ services users, whilst I recruit 15 ‘warm’. Without PFR’s help (and previous experience recruiting people affected by dementia) the scale and pace of recruitment (and UX design) wouldn’t be possible for my team.

People for Research have always been great at finding people, across the UK, for my research — even at very short notice when a project has needed to run additional research to explore new, emergent, research questions.

For support setting up ongoing user recruitment with People for Research get in touch with us at info@peopleforresearch.co.uk.

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