Case study: “She’s a pioneer!” Eastern woman with dementia’s life changed by NHS research

A woman with dementia has seen a significant reduction in symptoms of agitation after taking part in clinical research at the care home where she lives.

Beryl, from Norwich, had moved to a residential care home after she was diagnosed with dementia some years ago. Since then, her family had noticed Beryl was becoming increasingly agitated as her condition progressed. Among other symptoms, agitation is a relatively common, extremely distressing symptom experienced by people with dementia.

Julie, Beryl’s daughter, said, “Mum has never been the sort of person to get aggravated and, yet, here was this really gentle woman, hitting people, kicking the door, behaviour that you would never have seen before from her. It was so distressing, seeing mum the way that she was, and we just couldn’t do anything to help her.”

The care home team were visited by Claire Rischmiller, a research nurse from the Norfolk and Suffolk NHS Foundation Trust, who told them about a medication being tested to see if it can help people with dementia who are experiencing agitation. After discussing it with Beryl, her family and the care home team agreed to take part in the trial, which is funded by the NIHR.

The trial tests Mirtazapine, a commonly used anti-depressant, to see if it could also help people with dementia. Participants in the trial do not know if they are receiving the drug or a placebo (sugar pill) and results will be withheld until the full results have been published. However, some patients, like Beryl, already feel they have benefitted.

Julie says, “She’s a pioneer! It’s just been the best thing that has happened to us. We feel like we’ve been thrown a lifeline. Mum’s life has been transformed and other people’s lives can be transformed.

“I would recommend anyone to give it a go. We owe it to all the people in Mum’s condition and all the people coming along in Mum’s position. We really, really must do this.

Beryl herself also noticed the difference since taking part in the research. She said, “I didn’t know what the matter was with me, but thank god it’s over.”

Helen Macdonald, Chief Operating Officer for the NIHR’s Clinical Research Network for the Eastern region, said, “Although researchers are working tirelessly to find cures for conditions such as dementia, we also need to find ways to improve the quality of life experienced by people like Beryl.

“Crucially, it’s only with the involvement of Beryl, Julie and her carers, and those like them that we can ever hope to find the evidence to support these care pathways and for that we are incredibly grateful.”

The trial is led nationally by the University of Sussex, with local leadership from Professor Chris Fox at the University of East Anglia in conjunction with the research team at the Norfolk and Suffolk NHS Foundation Trust.

For more information on research happening near you visit the NIHR’s website at www.bepartofresearch.uk.