Collaborating for Digital Health and Care in Europe

On 21 March 2025, a COMFORTage webinar focused on an analysis of patient and carer/caregiver needs. The webinar offered the COMFORTage project a lot of potential material for further challenges and issues to be pursued during a series of upcoming project webinars.

Overview

In the European Union (EU), the prevalence of dementia in people over 60 increased from 5.9 million in the year 2,000 to about 9.1 million in 2018. Lying behind the words “dementia” and “frailty”, however, are some very different clinical conditions. People's experiences of dementia also differ substantially according to their personal and social environments. Hence, every person with dementia is unique and requires a personalised approach to his or her needs.

This webinar has the title “Analysing Patient and Caregiver Needs”. Its aim was to understand and address the emotional, physical, and practical support for patients with dementia or who are frail, as well as their caregivers, including any information requirements. Three speakers presented. Five panellists offered inputs. Close to 70 attendees participated at the event. They came from a wide range of European countries. Over 20 attendees stayed on until the end of the session to take the poll.

Chief outcomes from the webinar

Results from the webinar included:

• A summary of the findings from an extensive literature review.
• An expression of the views of both professionals and projects.
• Information on the experiences of patients and carers associations, illustrated through use cases.
• Reflections on the different types and phases of neurodegenerative diseases.
• An interactive discussion which highlighted the nuances among the most important "needs, desires, and fears of the people affected".
• A poll that captured the opinions and experiences of those present.

Speakers

• Kenneth Muir, Professor of Epidemiology, Division of Population Health, Health Services Research & Primary Care, University of Manchester (United Kingdom)

Kenneth told his personal story as the close relative of a person with dementia. He described what had motivated him to research the field of dementia. As a researcher, he now works to improve people’s frailty and memory loss, often with links in the community. His concern is also for (family) carers – who may share similar genetic profiles as the people for whom they care, but may also have insufficient time to look after their own health status. Kenneth is keen to see Artificial Intelligence (AI) explored as a potential solution to enhance the circumstances of people with dementia. He is eager to see improvements in strategies/approaches and collaboration among initiatives/projects. Recruitment is ongoing in a campaign based in the United Kingdom to work with 1,000 people willing to be tested to explore the onset of dementia.

• Olivia Ghysens, Neuro-psychologist, Revalidation Centre, University Hospital Saint Luc (Belgium)

Olivia described her reality in working with the Memory Clinic, a Belgian chain of 12 clinics for people with dementia. Her clinic’s rehabilitation programme encourages a diversity of health and care staff to work together and incentivise people with early stage dementia to continue to live in their own homes. Help is offered with e.g., appointment-keeping, bill-paying, and shopping as well as support for people making phone calls using smart phones. Between 25-35 one-hour long support sessions are available. Olivia outlined three case studies of people at different stages of the condition. One was of a woman who is afraid of losing her home. Another revealed the difficult balance to be struck between “encouraging independence and ensuring safety”. A third portrayed the need to avoid social isolation. Olivia reflected, “Everything can be asked. But not everything can be accomplished.”

• Ilaria Parrotta, Specialist in Geriatrics, IRCSS San Camillo (Italy)

Ilaria’s presentation portrayed a biomedical context., with a focus on neuro-rehabilitation. She drew on research by organisations such as the World Health Organization and three European projects. Having conducted a meta-analysis of the available literature, she noted how few initiatives examine exactly how digital technologies can help with primary prevention and care of people with dementia. One of Ilaria’s case studies involved a person with poor digital skills.

Discussions, panel, and poll

Resulting panel-related discussions complemented ideas presented by the speakers. They covered the needs for:

• A global awareness of the range of “care models” throughout Europe and in rural as well as urban settings. Example countries to include: Belgium, Greece, Ireland, Italy, Lithuania.
• Organisational scaling-up
  
• Prevention, diagnosis, and information-giving (especially in relation to modifiable risks).
• Specific carer/caregiver needs (including for informal carers) around e.g., training to be offered; solutions based on co-design.

The polls results indicated a number of potential directions for care models/models for caring/caregiving. There was large agreement on:

• Barriers: There are perceived behavioural barriers to timely diagnoses and interventions.
• Challenges: Overall, challenges like prediction/prognosis; geographic discrepancies; financing difficulties; and public health messaging, need to be faced.
• Technologies: Training and support on the use of digital technologies, including AI, needs to be offered. for people with dementia, their caregivers, and the support groups working on their behalf.

See a report on the poll results in the Resources section below.

Although the focus of this 21 March 2025 webinar was on people with dementia (or people who are frail), the session’s learning points may have wider implications for people with other conditions or diseases and their carers/caregivers.

Next steps

The COMFORTage Community Forum series of webinars will continue full-speed ahead throughout 2025. Two dates are already confirmed:

• June 20th: Assessing Interventions supported by Digital Health Technologies
• September 26th: Understanding the political (and financial) choices made by policymakers in supporting patients and carers affected by dementia and identifying innovative public initiatives

Further analysis of the survey results will continue throughout spring/summer 2025. Ultimately, later in 2025, a White Paper will bring together in a single document the findings expressed in all the upcoming webinars, including this one.

What’s in it for me ?

Following this series of webinars enables you to learn about:

• The latest developments in the care of people with dementia and people who are frail.
• What digital technologies, and data, have to offer people with dementia and their carers.
• What’s happening in real life and in a wide range of pilots.
• What a wide range of stakeholder types are doing about dementia and the challenges/risks they think dementia poses to people and their carers.

➡️ Get the next webinar in this series in your diary. On 20 June 2025, COMFORTage will explore  “Assessing Interventions supported by Digital Health Technologies”.