Dementia patients co-develop Dutch Alzheimer’s app for enhanced interaction

The Alzheimer’s Society in the Netherlands has created an app that promotes social interaction between people with dementia and their families and carers.

As the ageing population in the Netherlands increases, so does the number of people with dementia. The disease leads to loss of quality of life as social contact with people with dementia is not always easy.

Marco Blom, deputy director of Alzheimer Nederland, has a background in psycho gerontology and has worked with the foundation for over 23 years. He said the need for something that makes interaction with people with dementia easier has existed for a long time. “There are countless possibilities to have your life story drawn on paper, but there was no digital application available.”

In nursing homes, life albums of clients are not uncommon, but carers often lack the time to browse through them. “Moreover, it is difficult to build on such documents. The app we have now built, which is called “Dat ben ik” (This is me), offers much more flexibility.”

Robin van Otterdijk is the user experience designer at IT service provider Proxcellence. His grandfather suffers from dementia and is in a nursing home. Van Otterdijk experienced first hand that it is difficult to have conversations with someone who has dementia.

“His grandfather was once an Olympic champion, but nobody knew that anymore,” said Blom. “When you have achieved something in your life, it is incredibly nice when people keep talking about it. That gives people a strong identity.”

Van Otterdijk came up with the idea of a digital life album and could count on the enthusiasm of Alzheimer Nederland. “We saw the latent need for this among people,” said Blom. “Together with Proxcellence, we were able to develop the idea at the Mobile Innovation Lab at SAP, so we seized the opportunity with both hands.”

Combining tech and expertise

Without particularly concrete expectations, the three parties entered the discussion, and a proof of concept was soon available.

“That combination of people with substantive experience and knowledge of people with dementia and their needs, and technicians and digital experts, pushed us towards a beautiful end product,” said Blom.

The proof of concept arrived sooner than the team had hoped, and the employees and members of Alzheimer Nederland responded enthusiastically. “At that time we realised this was the time to move forward. But that was easier said than done, because we needed time, money and the SAP platform. and had to think carefully about security and privacy.”

Alzheimer Nederland worked closely with Proxcellence for the design and construction of the app. SAP provided the platform on which the app runs and is responsible for the underlying technology to ensure that user information is secure and accessible. “Without this triangle, the realisation of this app would not have been possible.”

Users co-develop

In addition, the parties very much wanted to develop the app from a user perspective. “We explained a lot, and sometimes had to go back to the drawing board because the text we used did not match the target group. We really tailored the app to the user,” said Blom. “The reactions are only positive.

“We sometimes get questions about the use of the app, because of course the target group is not always digitally proficient,” he said. “That’s why Alzheimer Nederland set up a helpdesk. “But that’s really the only complaint we get. We notice that family members, case managers and employees like to use the app. For us, that’s proof that it meets a need.”

The app can be used in different ways. It is a conversation starter because it contains a number of standard events with images. For example, there is a newsreel about school football in 1950, but also images of the hot summer in 1975 and the typically Dutch ice skating event “Elfstedentocht” (Eleven Cities Tour) in 1954.

“This provides a nice conversation guide. Experience shows that people have a lot to tell when asked about these events.” But the app can also be filled with personal stories, preferences and background. “In this way, a grandchild, for example, can catch up more quickly on things he didn’t know before. As a visitor, you can choose which topics appeal to you to talk about and see what those conversations evoke in dementia patients. It enriches communication,” said Blom.

New information can be added quickly and easily in the app and shared with anyone who has access to the information about that dementia patient.

“That’s up to family members to decide and arrange,” he said. “If a nephew comes to visit, you can grant him access to the app. When this is the only time he visits, you can withdraw the access afterwards. Sometimes it’s nice to give the care workers access as well. Certainly when few people are able to visit, for example, due to the pandemic, it feels better for family members to leave someone in the hands of care workers with a little more knowledge about the person and their past.”

Even when someone is receiving home care for the first time or goes to day care, the app can provide valuable information about a patient to the healthcare professional. “You are transferring someone in care, including his or her identity and personal story,” said Blom. 

International ambition

The app was initially built for people with dementia in the Netherlands, but Blom’s gaze reaches further. “There may also be other illnesses and situations in which the app can play a role,” he said. “But we also have ambitions internationally. We showed the app at a European congress last year and it aroused a lot of curiosity among organisations in other countries. The Netherlands leads the way when it comes to technological innovation and eHealth, so we can take a pioneering role in Europe.”

This summer, Blom, together with partners Proxcellence and SAP, will focus on the broad deployment of the app in the Dutch market. The organisation already has an online platform with more than one million visitors. In addition, 250 Alzheimer Cafés are being organised in the Netherlands where people with dementia and their carers come together to exchange experiences.

“In addition, we continue to regularly check whether things can be done differently or better,” said Blom. “The app is never completely finished, we want to keep improving it in consultation with the users.”

He is also on the board of Alzheimer Europe. “I really think that our task in the Netherlands is to take the rest of the world with us in digitisation and the opportunities it offers,” said Blom. “I see that we are ahead of other countries in that area, and our app can be the driving force behind digitisation in the countries around us, particularly in the Balkans and southern states. That’s where we can really play a role.”

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