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Patient story: Dementia carer is passionate about research after getting involved

Patient story: Frank Arrojo

For Frank Arrojo, taking part in dementia research helped him better understand the condition. He was once a carer for his late mother, who lived with dementia for many years.

Learning more about dementia has been bittersweet for Frank. He now better understands how carers can help but wishes he had this knowledge sooner. “I always think about what if only then, when I was caring for my mum, I knew what I know now”, says Frank.

Noticing the first signs of dementia in a loved one can be upsetting. Frank found it difficult when his mum’s behaviour started to change. He said, “When I was growing up, mum was a fun loving, love life, personality. But there came a point in her later life where she sort of flipped her personality to become a much more serious person.”

Frank also noticed his mum often repeating questions and not always remembering basic details about their routine. “When that started happening, I thought, ‘well, that's what happens to you when you get older.’ Now I know that's not a normal part of ageing”, he said.

"If we don't have hope, where will we be?"

Using his experiences to help others, Frank gets involved with dementia research in North West London. He is passionate about improving the lives of those impacted by the condition. He has taken part in many survey studies, proving valuable insight into dementia from a carer’s perspective.

He is an active member of the Alzheimer’s Society and TIDE (Together in Dementia Everyday). He has also set up three carer support groups in Brent. He is in regular contact with 50 carers and promotes the benefits of taking part in research. Frank said, “The main reason that I got drawn into being involved in all the work I do is because I had a tough time caring for my late mum. Life wasn't easy.”

A lot of work has been done to raise awareness of dementia. But Frank admits there is still a lack of understanding among the wider population. “In terms of society’s attitudes, I would say there’s been a slight improvement. But I don't think it's major”, he said.

Frank recognises that taking part in research will help improve people’s lives. He said: “If we don't get involved, how are we going to make any progress with dementia, whether it's treatments, whether it's improving care, whether it's society understanding more about dementia?”

He added, “Without your help, without people with dementia, without carers help, how can we make any progress?”

Frank’s dedication to dementia research has been inspired by his own experience as a carer. He wants to help others in similar situations. He is hopeful that research will continue to improve the lives of those impacted. He said, “If we don't have hope, where will we be?”