Living with dementia and the quest to discover its cause

What is it really like to live with dementia and how are scientists progressing in their work on the causes of Alzheimer’s disease and how to treat it?

Researchers and postgraduate students came together with people living with Alzheimer’s and their carers to discuss latest developments at a unique event ‘Living with Dementia’ at the University of Southampton with Alzheimer’s Research UK (ARUK). Former city GP Dr Jennifer Bute spoke honestly and movingly of her experiences of living with the disease and leading scientists explained their latest research findings.

“Bringing together laboratory researchers with people affected by dementia is invaluable,” says Dr Amrit Mudher from Southampton, who co-organised the event with Dr Tracey Newman. “This is an opportunity for patients and carers to talk directly to scientists and find out more about discoveries that have not yet been published. Our students also benefit greatly by meeting individuals living with Alzheimer’s, it brings home to them the relevance and importance of their contribution to our research projects.”

For many in the 100-strong audience, the highlight of the day was listening to Dr Jennifer Bute who retired early from her busy GP practice after being diagnosed with Alzheimer’s and now lives in a dementia-friendly village. She described how and why coping with everyday situations can be difficult or impossible. “Hospitals, motorways, shops are horrendous, all doors and archways look the same, trying to find one’s way out is almost impossible unless someone is there to help,” she explains. “Don’t ask if there’s anything you can do to help, we’re past that. Don’t overwhelm us with words and instructions, settle us into a familiar routine, be calm in dealing with us and we will be calm as well.”

Despite the challenges, the former doctor does her best to live a full life, supporting others with the disease and stimulating their brains with memory games, alongside giving talks,and media interviews on the realities of living with dementia to the wider community. Jennifer also has a website packed with insightful videos and useful resources at www.gloriousopportunity.org

Dr Emma O’Brien from ARUK , the country’s leading charity carrying out biomedical research into Alzheimer’s, described the scale of the problem. “In the UK alone, 850,000 people have dementia and the condition costs the country £24billion a year, more than heart disease and cancer combined. We are doing all we can to find a cure and develop effective treatments in partnership with some of the best scientists in the country.”

The University of Southampton links with the Universities of Portsmouth, Bournemouth and Sussex in an ARUK research network, one of 15 centres of excellence, carrying out cutting edge research from the lab bench to the patient’s bedside. In Southampton alone, eight projects are underway to investigate the cause of Alzheimer’s and search for new treatments.

During Living with Dementia day, scientists Professor Ole Paulsen, Dr Amy Pooler and Professor Michel Goedert spoke about their research into how Alzheimer’s progresses. Professor Jackie Bridges from the University of Southampton explained how general hospital services could be improved to benefit patients with dementia. There were also eight Scientific Café presentations on active research themes, topics included retinal degeneration, interactions with Parkinson’s disease and how patients’ home can be adapted to support them.