World Alzheimer’s Month: the invaluable expertise of people who have lived experience

Involving people with lived experience of dementia is essential to ensuring that our research meets the most pressing needs of people affected, and that interventions for dementia are as accessible, usable, and effective as possible. In this article, we showcase some of the amazing work people who have lived experience have done at the UK DRI, and the impact it has made.

The Lived Experience Group: changing how dementia research is done

Soon after becoming established, the UK DRI formed a Lived Experience Group. Its members include people living with various forms of dementia, as well as others who care for people affected by the condition. The Lived Experience Group engages in many areas of UK DRI research and outreach - including sharing the UK DRI’s work with wider networks, providing input on events and communications materials, and giving researchers feedback on the solutions they’re developing.

Earlier this year, members of the group got involved in a project to develop an exciting new piece of technology. Created by researcher Dr Nir Grossman, the tech, in the form of a headset, aims to provide non-invasive deep brain stimulation that could be used to treat people with dementia and other cognitive conditions. While the headset was still in early stages of development, people with lived experience took part in a series of workshops to ensure that the end product would be as suitable and impactful as possible for its intended users.

During the workshop series, members of the Lived Experience Group gave their input and feedback on how the headset could be improved. They examined early-stage prototypes of the headset, and discussed the implications of, and recommendations for, its translation into real life, at-home settings. Their feedback was then integrated into a set of design recommendations for how the technology should continue being developed. In fact, this process led to a revelation that the technology should be built for use in people’s homes, rather than in a clinical setting – something that the team would never have anticipated without input from people with lived experience.

"There was a true sense of patient involvement,” said Caroll Siu, a member the Lived Experience Group who has Parkinson’s. “People with Parkinson’s, MS and carers of people with Alzheimer’s were there with other stakeholders like researchers, clinicians and representatives from charitable organisations, in round table discussions as part of the collaborative process of co-creation in research."

Shaping the future of dementia care: how people with lived experience are contributing to the development of novel technologies to support at-home care

The UK DRI Care Research & Technology Centre brings together a diverse team of doctors, engineers and scientists who together are working together to create new technologies that will deliver the highest quality dementia care in the home. The Centre sees people with lived experience of dementia as a critical part of their team, to ensure innovations are designed to be accessible, acceptable and desirable to use.

The “smart home” system at the heart of the Centre’s research, is a digital platform called Minder. Minder is furthering our understanding of dementia by learning from the daily lives of people at home, by collecting long-term, real-world and real-time data. Participants are supported by a monitoring team and clinicians, who respond to health alerts arising from the data coming out of each home.

People with lived experience have, and continue to, shape a vast amount of the research and product development being carried out in the Centre by sharing their experiences, brainstorming ideas, and evaluating products and prototypes through their development.

Currently, the UK DRI is running the Minder study, where over 80 people with dementia or mild cognitive impairment and their carers are trying out the technology in their homes, and giving recommendations on how they should be improved through sharing their experiences.

“I’m glad to see that there is a depth of appreciation for the end user,” said Trevor Truman, who was a carer for his late wife with dementia and a former participant in the Minder study. “That is increasing, and it pleases me.”

Friends of Care Research and Technology: A new way to get involved

To improve lived experience involvement even further, Sophie Horrocks, a designer at the UK DRI Care Research and Technology Centre and Imperial’s Helix Centre, is creating a new initiative - the Friends of Care Research and Technology group (or Friends of CR&T for short). The initiative was developed to make research more accessible to people with lived experience, through a format tailored to fit around how and when they can get involved. It also aims to make involvement a more long-term, ongoing process – rather than just a one-off event.

Although the UK DRI has always involved people with lived experiences in its research, Friends of CR&T intends to take things a step further by promoting stronger partnerships between researchers, clinicians, and people with lived experience, creating a community where all can learn from one another. The group aims to get those with lived experience involved in all stages of the research process - from considering what kind of research should be done to interpreting research findings.

Friends of CR&T will be kicking off with a launch event for people interested in joining. Attendees will have the chance to hear about the research the UK DRI is doing, and how they could get involved. They’ll also have the opportunity to meet others with lived experience who also want to shape research, and learn more about community organisations working to support people affected by dementia. For more details and to register, see below.

This World Alzheimer’s Month, the UK DRI is highlighting the amazing people who make Alzheimer’s research possible - and how they’re contributing to filling the dementia knowledge gap. To learn more and join in the conversation, follow our campaign on social media using the hashtag #FillingTheGaps.

Interested in getting involved?

Come along to our Friends of CR&T event on 11 October, 4-7pm, at the Works Cafe in Imperial College London’s Sir Michael Uren Hub. Travel expenses will be reimbursed, and food and drink will be served.

Links

- Register for the Friends of CR&T Launch Event

- Sign up to be part of the Friends of CR&T

- Join the Lived Experience Group

- Sign up to participate in a clinical trial

Article published: 25 September 2023
Images: Copyright UK DRI Ltd