Supporting self-management: improving 'The Dementia Guide'

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The Purpose

The publications team wanted to review and improve a flagship Alzheimer's Society publication, The Dementia Guide,  to make sure the content, look and feel were what matter to people affected by dementia. 

• the Dementia Guide was to be the first publication to be changed into the new Alzheimer’s Society brand.
• the original version had been created without input from people affected by dementia.

Preparation

Before meeting service user groups: The Knowledge and Publications teams prepared a long-list of questions about the content and design of the new Dementia Guide.

In between meetings with service user groups: the teams met to reflect on the feedback and ideas they were collecting.

• This enabled them to check that they were getting answers to all of the questions as they could encourage groups to consider particular questions not so far answered by earlier groups.
• This enabled them to identify patterns from the responses, to identify which ideas and preferences were coming through from a range of people.

What happened 

Service user group members chose which questions to answer. They usually only chose to answer some questions, particularly those they said they felt they had the right skills and experiences to answer.
 

The Results

Improvements were made. The new guide launched in 2017.

• The team used the feedback about people's experiences and their ideas about improving the Dementia Guide, to create the new Dementia Guide. 
• The team updated the service user groups about what they had done, including explaining why they had not always implemented ideas group members had put forward. For example, many people had suggested the section for carers should be increased, but the Dementia Guide is for people with dementia. The team explained that they had made the section a bit larger and had included more signposting to useful documents.
• The team planned in more visits to groups - two they had already gathered feedback from, plus two groups not so far involved. This time they sought feedback from the groups on the changed content and design of the working draft Dementia Guide.

• “The Dementia Guide would never look as good or be so accessible without the input from our service users.” Gemma Jolly

• The team felt the value of getting feedback and ideas was so valuable that they have gathered feedback from more service user groups about use of memory strategies, to inform the new version of Alzheimer's Society's Memory Handbook.

 What changed for people with dementia

Lots! Changes included:

• removal of pocket inside the back cover
• making the spine of the book red so it is easier to see
• increased use of bullet points, infographics and quotes from people with dementia
• new sections: about living alone, and a foreword from a lady with dementia

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• acknowledgement of the service user groups (then collectively known as 'SURPs') as a thank you for getting involved.

 “The Dementia Guide would never look as good or be so accessible without the input from our service users.” Gemma Jolly

Learning points

People with dementia understood the importance of the activity and felt able to express their views: the team had wondered if people with dementia might be to eager to please, or worried about being too honest.  The feedback people gave was constructive. People shared their own experiences.

Plan - and adjust plans if necessary - to seeking feedback and involvement with a diverse enough sample group:

• the service user groups were often positive, but on reflection the team felt it would have been even better to seek feedback and ideas from people with dementia who were not 'volunteers' in service user groups.
• the teams felt it would have been especially good to have done more to seek feedback from people with dementia who had no prior connection to Alzheimer's Society. 

Prepare prompts to help the conversation flow, particularly with small groups.

If possible and appropriate, send preparation materials to group members in advance – one retired neuropsychiatrist had fully annotated his copy of the original Dementia Guide!

Manage expectations: Be honest about the extent to which you will be able to use the ideas given to you.

Go back if possible to give feedback in person, and show the end product - this is valued by group members.

Key contact if you would like to find out more 

Knowledge Team, Alzheimer's Society.

Useful Links

The Dementia Guide