The horse’s mouth

The horse’s mouth

Sensory Booklet Cover

If you Google ‘dementia’ or ‘Alzheimer’s’ you will find literally thousands of sources of advice and information – some helpful and some less so. But one of the big changes in recent times is that people with dementia themselves are starting to write and publish their own advice and guidelines. And of course this makes a huge difference! Firstly it means that they choose the topic or topics they are most interested in or knowledgeable about (and others might not have identified these as priorities). Secondly they can give their perspective and their experiences freely, without being guided or edited by those who think they might know better. Thirdly, what they write connects directly with others affected by dementia without the ‘mediation’ of ‘professionals’. And lastly, it increases the confidence of the authors themselves

A great example of this is the booklet ‘Dementia and Sensory Challenges’ This was the brain child of Agnes Houston, whose vision has been affected for many years by her dementia. It was put together by Agnes, her daughter/supporter Donna, and over 20 other people affected by dementia from the UK, Germany, Ireland, the Czech Republic and Jersey. The booklet is written in a very accessible style, and it is full of quotes and practical tips. It raises an issue which until now has had very little exposure.

Other examples of course can be found on the DEEP website Currently there are 17 practical guides on this website, all written with and by people with dementia. So if you want to know more about travelling with dementia, using sound recordings, creating dementia friendly websites or collecting people’s views, these guides will give you loads of tips based on the lived experience.

You can’t beat hearing it from the horse’s mouth.

Philly Hare
Philly Hare is Programme Manager at JRF for Dementia without Walls. Throughout 2016 she will be on secondment to Innovations in Dementia. Philly is also currently an Exchange Fellow at the University of Edinburgh and Advisor to the Life Changes Trust.

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