Supporting dementia patients at home with digital tech…

For most people, the thought of a dementia diagnosis and the fear of losing their ability to recall treasured memories is devastating. Our research which used an iPad to help people living with dementia to reminisce showed how powerful memories can be and how important it is for people living with dementia to focus on the memories that they still have, rather than thinking about what is lost.

Dementia is now a major public health concern with estimated annual costs of 26 billion in the UK, higher than the combined costs in the UK for cancer, stroke and heart disease. Figures from the Alzheimer’s Society show that nearly 850,000 people live with dementia across the UK with 20,000 in Northern Ireland.

Anyone who has loved or cared for someone with dementia will remember the beautiful moments of clarity during a period of reminiscence, using prompts or memory triggers such as photographs, music or film to stimulate the discussion and recall past activities and experiences.

Reminiscence has been widely used to support people living with dementia as it works on the understanding that longer-term memories can be accessed in the early to moderate stages of the condition. Reminiscence, therefore, draws on a person’s strengths and abilities, rather than emphasising their losses or difficulties.

In July 2018, a team of researchers from Ulster University led by Professor Ryan, published a study which investigated the outcomes of a home-based, individual specific reminiscence intervention using an iPad app for people living with dementia and their family carers. The study was jointly funded by the Public Health Agency, R&D Division and The Atlantic Philanthropies.

The study had three phases, the first of which worked with six people living with dementia and their family carers to co-design and test a reminiscence app. The new app was then used at home by 60 people living with dementia for three months. Questionnaires which examined the impact of reminiscence on wellbeing, quality of life and quality of the relationship between people living with dementia and their family carers were collected at the beginning, middle and end of the study. In the third phase, we interviewed 32 participants to explore their experience of using the app to reminisce.

What did we find?

We found that people living with dementia used the app independently and more frequently that their carers. They spoke about how the iPad app became “part of their lives”. In describing their experiences, they talked about how using the app to reminisce “helped me find myself again” and reminded both themselves and their families that “there is still so much inside”. At the end of the study, people living with dementia reported an improvement in their quality of life and in their relationship with their family carer. They found using the app a positive experience which focused on gains rather than losses in the context of memory retention and learning new skills.

The study concluded that personalised reminiscence supported by an iPad app can have a positive impact on people living with dementia and their carers at an individual and relationship level and that people living with mild to moderate dementia can be supported to engage with digital technology. The findings of the study also informed ‘The Songbirds’, a play that celebrates lives and memories and the multitude of ways that people living with dementia navigate their journey. Feedback from the play, which to date has been seen by over 1000 people, indicated that it has increased public awareness and understanding of reminiscence and dementia

“The play was very relevant to struggles families face today with this illness. …… The message was that people who suffer from dementia are still the same person. Very good show!

“It really opened my eyes to Alzheimer’s and dementia. I never knew how much it can impact on a family/relationship. This really moved me”.

Alarmingly, the number of people living with dementia in the UK is expected to grow rapidly over the next decades and according to the Alzheimer’s Society 1 in 3 babies born in the UK this year will develop dementia in their lifetime.

Having established the benefits of using an app to support reminiscence, we are keen to build on this and have recently been commissioned by the Public Health Agency to further develop the app and make it available to greater numbers of families living with dementia. We are currently working with a local company to take this work forward and to make the app available through the Public health Agency’s Apps Library for people living with dementia and their carers.

Relevant op-eds

Professor Assumpta Ryan is Professor of Ageing and Health and Ulster University. You can follow her on Twitter.

There will be a free live event on this topic on Tuesday the 5th of November 2019. It is part of the ESRC Festival of Social Science in Northern Ireland 2019. Get your free tickets here…

Photo by geralt is licensed under CC BY-NC-SA

13 November 2019 Edit: The figure of 200,000 in NI with Dementia was wrong, it is 20,000. The post has been correct.

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