Alzheimer’s Area: technology, knowledge and community to support people living with the disease

The Pasqual Maragall Foundation has developed a free digital platform providing information, training, support and resources for people and families living with Alzheimer’s disease, health and social care professionals, research centres, and organisations working in the fields of caregiving and dementia. The solution, ‘Alzheimer’s Area’, is available both as a website and a mobile app. It has received funding from the Department of Social Rights and Inclusion’s Next Generation funds and has been evaluated by the Social Area team at the TIC Salut i Social Foundation.

We spoke to Laia Ortiz, Director of the Social Area at the Pasqual Maragall Foundation, to find out more about the platform, what it offers and how it has been received so far.

How did the idea for Alzheimer’s Area come about? What need did you identify?

The idea grew out of the Foundation’s day to day work with people and families affected by Alzheimer’s. We found that reliable information, training and support were very fragmented, and that many caregiving families felt alone when facing a long and complex process.

We wanted a tool that would complement the training and guidance we already provide while also creating a free, accessible digital meeting space. A platform bringing together rigorous and personalised information, training, support and a community network, while also reaching professionals and research centres.

What are the main resources and services offered by the platform?

Alzheimer’s Area provides up to date information about Alzheimer’s and caring for someone with the condition, with content tailored to each user’s profile. The platform also supports training programmes, support activities and seminars, and includes thematic forums and communities where people can share experiences and offer mutual support.

The platform also provides opportunities to take part in the Foundation’s research studies. All of this is available free of charge and has been codesigned with caregivers and people in the early stages of Alzheimer’s.

Designing a platform such as Alzheimer’s Area has involved bringing together information, training, community and research. What have been the main challenges during its development?

One of the main challenges has been designing a platform that is simple and accessible enough for older people or those who are less familiar with technology, without compromising the breadth and richness of its content.

We have also had to coordinate very different teams across research, social care, communications and technology to ensure that scientific information is translated into clear and understandable content. Another challenge has been establishing careful community moderation to provide a safe space for discussing such sensitive issues.

Since its launch, how have users and professionals responded? Has any of the feedback particularly surprised you?

The response has been very positive. We are seeing active participation in training activities, and many caregivers tell us that the platform has helped them feel less alone. We have been particularly surprised by the level of engagement within the caregiver community. People do not simply consult the content but also share experiences and support one another.

It has also helped us reorganise and improve aspects of accessibility by learning from experience and feedback. This will be a continuously evolving tool, shaped by listening to the voices of the people who need it.

Thinking about the health and social care professionals reading this interview, in what situations would you recommend using Alzheimer’s Area as a support resource for the people they care for and their families?

We particularly recommend introducing Alzheimer’s Area at the time of diagnosis, to guide the family and the person with Alzheimer’s through the first steps and help them access reliable information. What does the disease mean? What are the symptoms? What resources are available and what decisions need to be made?

It will, of course, always be a resource people can return to for personalised services and information relevant to their needs. For example, when a caregiver is showing signs of overload and needs support or training, or when families could benefit from a community and support space to complement face to face care.

Looking back, what lessons learnt from developing Alzheimer’s Area could be useful for other digital health initiatives?

We have learnt that codesign with users, including caregivers, people affected by the disease and professionals, is essential if a digital health tool is to be genuinely useful. We have also seen the importance of considering accessibility from day one, continuously evaluating impact with the TIC Salut i Social Foundation team, and maintaining a balance between scientific rigour and accessible language.

We believe these lessons are highly transferable to other digital health initiatives. Finally, technology is advancing rapidly, so every project needs to incorporate a short-term perspective while also considering sustainability in order to continue improving and innovating, making the most of the advances available.

For example, we are already exploring how AI could help improve Alzheimer’s Area and how we might create an assistant drawing on everything we have learnt and the Pasqual Maragall Foundation’s extensive knowledge of the disease.