Dementia patients have a right to views

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A leading evidence-based researcher has called for people with dementia “to be listened to” in order to “revolutionise” services.

Professor Mike Fisher, who was speaking in his inaugural lecture as a professor at the University of Bedfordshire, questioned whether people directly affected by dementia were asked for their views on the services provided.

Professor Fisher’s thoughts come after a systematic review conducted by the University’s Tilda Goldberg Centre (which specialises in social work research) identifying the experiences of people living with dementia and the services they receive.

“The research has found that people in their late 50’s and early 60’s, who are diagnosed with dementia, will now tell you what they want,” said Professor Fisher, who joined Bedfordshire in 2012.

“Personal user input will revolutionise dementia services, but they (people with dementia) need to be listened to.”

He added: “If we are assessing the quality of scientific research that underpins policy, we have to question whether the people who use the services are included in that research, and their definition of what counts as an outcome.

“I don’t see how scientific researchers can be in a position to say they have investigated the outcome of a community mental health service, for example, and not ask the people who are receiving the service, whether the outcomes were the ones they wanted.

“If that is happening then we are simply saying that what professionals and service providers want as outcomes are the only outcomes that matter – which is simply not true.”

Professor Fisher has enjoyed a distinguished 30-year career in research and development in social work, including a five-year stint as Director of Research at the National Institute for Social Work.