Supporting people affected by dementia to live independently at home

On the 14th of May the Centre for Applied Dementia Studies organised a public engagement event at Kala Sangam Arts Centre in Bradford. More than 80 people attended the event and engaged in a rich debate.

For around an hour, a panel of experts discussed the topics: How can we promote the independence of people living dementia? Does having a diagnosis with dementia necessarily means having to leave our own home? Six experts shared lessons from their personal and/or professional lives. They all helped us to understand how people affected by dementia can be better supported to live independently.

 

Prof. Gail Mountain, head of the Centre for Applied Dementia studies chaired the panel and welcomed the guests.

 

Richard Fortinsky, professor of Geriatrics and Gerontology at the University of Connecticut and international advisor for the Bradford Doctoral Training Centre in Dementia Care, was the first to speak. Richard presented the most recent studies carried out by his institution and other organisations in Connecticut around interventions for people living with dementia at home. He discussed the key findings and listed the problems research still needs to address. The presentation can be found here and an audio podcast of his speech can be downloaded here.

After Prof Fortinsky presentation, Clare Mason lead of the Experts by Experience Group of the University of Bradford, interviewed Michael Andrews about his personal experience of living independently. Michael who was diagnosed with Posterior Cortical Atrophy – a type of dementia – lives alone at home. Michael brought with him some of the devices he finds most useful to maintain his independence.  A pair a magnifying glasses and the timer in his tablet, he said, help him to follow the steps of recipes when he cooks his own meals. His smart watch, connected to his phone and tablet, reminds him of his appointments and keeps him connected to family and friends. Devices alone, he added, are not enough though. Michael shared his feelings when he was diagnosed with dementia and how difficult it was to cope with the idea of not being able to work anymore. If initially he opted to not talk to anyone about his diagnosis, this has changed over time. By telling people he had dementia and asking for help really made a difference in his life. By doing this he has been able to get help from family, friends, and professionals (e.g occupational therapists). You can listen to Michael’s account here

 

 

 

From left to right: Vicky Connells, Michael Andrews and Clare Mason.

 

Immediately after Michael, Vicki Connells, his occupational therapist (OT), gave practical examples of the kind of support she provides to people affected by dementia. It all starts with knowing the person and their struggles. Vicky stressed out that individuals are all different; the OT job is to look at what people want and need to do, and how they can be helped to do them. While for Michael technology seems to be helpful and work well, another person may struggle and find technology a challenge. To be effective, technology needs to be tailored to the person’s needs, strengths and preferences. Vicki mentioned the importance of knowing each person well. At the moment, she is working with Michael to put together a story life document, which includes detailed information about his preferences, e.g. the music he likes to listen to or the food he loves to cook. This document will let others know and support Michael a bit better. Vicki’s video can be watched here.

Before questions and discussion, Prof Murna Downs presented the NIDUS project – Alzheimer’s society funded project led by University College of London in cooperation with the Universities of Bradford, Reading and Exeter, which aims to understand how to help both family and professional carers to care for a person with dementia at home.

 

Overall, the feedback from attendees was very positive – combining research with practical information and real-life stories was particularly valued.

“People with dementia still have a life to live”  (feedback to the question: “What’s the key message from today’s event?”).

 

Here in the Centre we will keep working to support people to live well with dementia!

 

 

 

Giorgia Previdoli,

Centre for Applied Dementia Studies