Improving dementia care: ask those who have lived with the illness

Improving dementia care: ask those who have lived with the illness.

Personal experiences are often ignored by the social care system, but professionals can learn a lot from patients and their families.

 

An understanding of what dementia is really like both for the individual and their family is often missed in care training.

Dementia care training is a competitive marketplace, populated mostly by people from academic and scientific backgrounds. They can tell you the statistics, what the latest research has discovered, and the widely recognised methods we should all be following when we provide care to a person with dementia.

What is often missed is the understanding about what dementia is really like – both for the individual and their family.

I'm not an academic. University wasn't an option for me; my dad needed me and there was nowhere else I was going to be other than by his side. He lived with vascular dementia for 19 years, going 10 years without a diagnosis and then spending nine years in three different care homes. Dad's dementia began when I was just 12 years old, and went on to dominate my teens and twenties. He passed away in 2012 aged 85.

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Listen to an interview with Richard White, Stanfield Nursing Home's owner, about music therapy and dementia

Dementia map is a 'step in the right direction'

A proposed map showing the quality of dementia care around the country could help drive up standards, according to the Alzheimer's Society.

Its director of external affairs, Alison Cook, told BBC Radio 4's Today programme:

This map is a step in the right direction, because naming those areas of the country who aren't doing very well and pointing in the direction of areas which are doing very well means that they can copy best practice and just get on with making people have access to a diagnosis.

– Alison Cook, Alzheimer's Society

She said that just being diagnosed can help patients by providing access to advice, social care and by enabling them to plan for their future.

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