One of the most influential projects we funded in 2015-16 was a booklet produced by a person with dementia called Agnes Houston, in collaboration with other people with dementia, on Sensory Challenges.
Agnes was frustrated when professionals did not recognise that dementia is more than memory loss and that misconnections in the brain can also lead to misinterpretation of data going into the brain. For example, some people with dementia find their sense of taste completely changes and so reject certain types of food.
This is often interpreted as a refusal to eat or 'being awkward' whereas, in reality, they no longer like that meal. If not recognised, this can lead to significant weight loss or illness.
The Sensory Challenges booklet has made carers, professionals and others sit up and take note of what people with dementia are saying. It has influenced the re-writing of training and guidance for professionals in a number of organisations.
A very conservative estimate would say that the booklet has been read by at least 33,000 people in Scotland alone. To date it has been translated into Czech, Welsh, Chinese, French and Japanese (in those countries). It has also been distributed in Australia, Canada, Jersey, Guernsey, Hungary, Belgium, Spain and Slovenia. This is a concrete example of empowerment.
Download the booklet here