‘What’s life like?’ A book of little messages from people with dementia

A group of people with dementia compiled a helpful book of little messages. These short notes hold big meanings and can make a huge difference in understanding life with dementia.

Drawing around hands in coloured pen

Drawing around our hands was the starting point for a poem created called ‘Everybody’s hands are different’.

Who created Little Messages? 

Little Messages is a free downloadable resource, created by the ‘What’s Life Like?’ involvement group from Barnsley, South Yorkshire. Over the course of the year, the group met twice a month and welcomed people living with various stages of dementia from the local community. 

The ‘What’s Life Like?’ group was facilitated and supported by staff and volunteers from Alzheimer’s Society, including Diane Hinchliffe, the Dementia Support Manager in Barnsley. Diane says: 

‘We formed the group in early 2017 with no set agenda or programme. We had no initial plans to produce this book. We simply wanted to create a space for people with dementia to come and join a discussion about what life is like for them.’ 

‘Our group quickly became an important, safe and secure place to talk and ask questions. It soon became a peer support group.’ 

Diane adds, ‘There was no embarrassment around asking questions. Our group members were comfortable to talk about topics that they may not have talked about anywhere else.’ 

An artwork entitled 'Black and White'

'Black and white'

Diane says, ‘Within our group conversations, we started using poetry, visual art and note-taking to explain life with dementia in our own words.’ 

As a group, there was the opportunity to explore ways to teach others about their personal experiences and how they could influence the way key providers treat people with dementia.’ 

‘The group’s vision was to change perceptions and change people’s responses to dementia.’ 

'We wanted to co-produce something to support all people with dementia to live well, feel valued and be at the heart of everyone’s communication.’ 

Some of the 'What's Life Like?’ group members have since gone on to do other things and enjoy getting involved in opportunities where they can use their experiences of dementia. 

An artwork entitled 'When its red things are becoming more clear'

 'When its red things are becoming more clear'

An important read for everybody 

There are different messages addressed to different groups of people. 

For people without dementia, this resource may help them better understand how people feel and think about life with dementia.

For people with dementia, these messages may provide encouragement and support along their journey.

Here is a small selection of notes from Little Messages

Dear Doctor…

Dear doctor

Dear healthworker…

Dear healthworker

Dear family and friends...

Dear family and friends

Involve me in decision making

Dear person with dementia…

Carry on doing what you know

Life is for living

Dear all…

Give me a chance to speak for myself

Get your free copy of Little Messages

We hope you will read and use these messages in your contact with all people living with dementia.

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