For this Ideas Generation Event, CelebrAGE brought together researchers, clinicians and innovators working in the fields of healthcare technologies, healthy ageing and neurodegenerative diseases.
The aim of this cross-disciplinary event was to explore which factors influence the ability of older adults living with mild to moderate cognitive impairment to lead an independent life and how technological innovations could offer them support.
The key focus of the event was an exploration of effective knowledge exchange dynamics in virtual space during a time when it is not possible to meet in physical space due to the Covid-19 pandemic. In this blog post we have reflected on both the structure as the content of this first CelebrAGE Ideas Generation Event. In addition, CelebrAGE will work towards the formulation of a Grand Challenge area and the development of a cross-disciplinary research project that will build on the experiences and ideas shared during the event.
When we started planning this event with the CelebrAGE team, we decided on the video conferencing platform Teams, as this is the preferred platform of UCL, the host university. We had to estimate what would be an optimal number of participants to bring diverse perspectives to the discussions, while simultaneously ensuring everyone would have the opportunity to join the conversation and be heard. We settled on a number of 10 participants, who we selected from our collective professional networks based on their relevant work experience in relation to the chosen theme of our first Ideas Generation Event: ‘Innovative technology to support older adults living with cognitive impairment’.
The event was held on the 25th of November 2020, from 13:00-14:30.
Attendees CelebrAGE first Ideas Generation Event
- Dr Mine Orlu (CelebrAGE Founder)
- Dr Janneke van Leeuwen (CelebrAGE Co-Lead)
- Neel Desai (CelebrAGE Co-Lead)
- Dr Francesca Boem (Lecturer, UCL Electronic & Electrical Engineering, Safety and Security of Interconnected Systems, Cyber-physical Security, Optimisation and Machine Learning)
- Dr Rachael Frost (Senior Research Fellow, HomeHealth Trial Manager, UCL Research Department of Primary Care and Population Health)
- Dr Dexter Penn (Clinical Research Fellow, UCL Dementia Research Centre, CEO Kalgera)
- Dr Deborah Bertfield (Consultant Physician and Geriatrician, Royal Free London NHS Foundation Trust)
- Dr Aida Suarez Gonzalez (Clinical Neuropsychologist, Senior Research Associate, UCL Dementia Research Centre, ReadClear)
- Rita Goncalves De Pinho (Policy Adviser, UCL Department of Science, Technology, Engineering and Public Policy)
To give structure to our Ideas Generation Event, we had formulated two guiding questions:
1. Which factors influence the ability of older adults living with mild to moderate cognitive impairment to lead an independent life?
2. How could technological innovations offer support?
These two questions were introduced in the Teams calendar invite that was sent out to all participants. The event was chaired by Dr Janneke van Leeuwen who explained to the participants at the start of the session -after a brief introduction round- what the aim and structure of the event would be.
To kickstart the discussions CelebrAGE had asked Dr Dexter Penn in advance to give a short talk about how his enterprise Kalgera came about, a financial service designed to protect vulnerable people from financial exploitation, which he developed in response to a number of poignant cases he came across in his role as a Clinical Research Fellow at the UCL Dementia Research Centre.
It transpired that a number of older people under his care had been so extensively scammed that they could not afford their care anymore or return home as their house had been sold fraudulently. Despite having no experience in financial services, this injustice motivated Dr Penn to look for a technological solution that could safeguard vulnerable people’s finances and protect them from falling prey to scammers. The growing success of Kalgera, which even saw Dr Penn receiving an invitation from Number 10 Downing Street, demonstrates how astute clinical observations can be translated into technological innovations that can offer structural support on a larger scale.
Dr Aida Suarez Gonzalez had been a mentor for Dr Penn and she shared her personal experience of translating a clinical observation into a technological solution, through her work on the ReadClear app; a reading aid designed for people living with Posterior Cortical Atrophy, which is a form of dementia that initially affects predominantly visual perception, with reading often becoming increasingly difficult for people early on the disease.
In the ensuing group discussion, other participants also shared their perspectives on the two guiding questions of the event, both through comments in the chat window and face to face conversations, which worked well. CelebrAGE Co-Lead Neel Desai took comprehensive notes of all the ideas and experiences that were shared and these notes have been summarised in bullet points under each guiding question below.
Question 1 - Which factors influence the ability of older adults living with mild to moderate cognitive impairment to lead an independent life?
- Older people often function very well in their own environment, but unfortunately in secondary care, confusion plays a massive part resulting in decline - more risk averse, especially when considering coping strategies at home - might underestimate abilities in supporting environment and therefore more cautious when living independently.
- Need to think about holistic approach - functional, social, environmental, cognitive - so much more complicated in older people due to nuances.
- Testing in clinical environments are often artificial and not representative of conditions at home.
- The ability of older people is not only affected by age but also by their frailty status. It is more important to focus on frailty than age in a clinical context.
- There is less opportunity to have regular interaction with older people at their own home setting due to pandemic, this limits how well the cognitive frailty of older people can be monitored.
- When the setting for older people with cognitive frailty changes, this may impact on their needs and responses to (novel solutions) for their treatment. Examples are being admitted to hospital, or transferring to a residential home, or nursing home. The interacting environment of frail older people is a crucial factor to be considered when designing, in particular, technological solutions (e.g. home-based apps).
- Novel approaches can be implemented as part of daily living to determine which factors are most effected at home (Kalgera & ReadClear).
- Not every interaction leads to impact - networking is of massive importance - time is also a crucial factor since if not relevant at the time there won't be any traction.
- Problems are highly interdisciplinary - need to connect with a lot of different people - public and private partners - whilst incorporating public/patients!
- Language a barrier and we need to consider the drivers from each sector, that why engagement is crucial at earlier stages so we can make sure interests align, and we are addressing the right question.
Question 2 - How could technological innovations offer support?
- People need to be informed appropriately: There is lack of knowledge in the general public - not everyone has the technical expertise. Solutions that are possible including speaking to people about technical and policy aspects through collaborations.
- Globally important issues have to be prioritised: Certain issues are becoming international problems such cybersecurity risks for instance, which necessitates the input of cybersecurity experts and technologists working with the internet of things space to ensure the robustness of person-centred solutions that aim to support older people who are cognitively frail.
- Kalgera and ReadClear both offer solutions for older people – these novel initiatives are already available.
- If broader or specific solutions are developed in accordance with the needs of end-users, and if the features of the technological solution are tailored to these needs. There are many different opportunities to help older people with cognitive impairments - mobility and getting out, psychological wellbeing and mood -, the question is whether technological solutions should focus on one or more concepts?
- If older people and carers are invited for active involvement: To generate the best designs, the involvement of older people and carers is crucial at an early stage of the idea considering they are the super experts of living with cognitive frailty.
- If evidence-based frameworks are adapted for generating solutions which are potentially implementable: There are various frameworks available to co-create solutions but the most effective strategies involve close collaborations with people with so-called ‘lived experience’, and take their opinions and ideas on board with an open mind. Many ideas don't occur to the researchers for instance- patients and families can themselves come up with the ideas to make the technological tools easier to use - then need to reflect on changes – PUT PEOPLE FIRST BEFORE DEVELOPMENT TO REDUCE TECHNICAL TIME AND COST.
- If progressive status of cognitive decline is factored in: There are various stages of cognitive decline, therefore it is important to consider the capacity of the end-users of the technological solution to help older people to stay independent.
- If inclusive approaches are adopted: Need to consider the digital/technological divide between the general population - especially those with neurological impairments - finances for resources (tablets) and digital literacy are becoming more important as novel approaches due to COVID-19 and remote studies are becoming more common.
- Some older people are completely internet averse, some more flexible/keen to use technology first? Or design for the group that doesn't want to use?
- Work with things people are already familiar with, selling it as useful, why it will benefit you and how easy it is to use.
- Give older people a specific use case to start off with - carrot on the stick - makes it really easy for them to start using technology. MOTIVATION (why should I use it?) AND ACCESSABILITY IS KEY!!
From these rich exchanges, three key takeaways became apparent, which will inspire a CelebrAGE Grand Challenge and form the point of department for the development of a cross-disciplinary research project that CelebrAGE will aim to facilitate in the future:
PERSON CENTRED DESIGN - technology can be better tailored to the needs of older/frail people if they are involved in the development, - there is a wealth of both quantitative and qualitative research available on the needs of older people and interventions that have been designed to meet those needs rather than needing to start from scratch - papers from implementation is THE GAP, despite papers from initial research being widely available.
SUSTAINABILITY AND IMPLEMENTATION - all good having the technology, but it needs to be real and available to the outside world - the transition and implementation is definitely required and another GAP. Multi-stakeholder networking to bring highly interdisciplinary perspectives is needed. The interest and involvement of business, industry and investors can help to take multiple and continuous steps to achieve sustainable ideas. Entrepreneurial thinking is also needed to implement the ideas into practice in a rapid and sustainable way.
POLICY ENGAGEMENT – Dissemination of good practice guidelines via the appropriate policy engagement channels could contribute to policy changes for the benefit of older/frail people.