Shropshire, Telford and Wrekin Dementia Action Alliance priorities-setting survey

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The Dementia Action Alliance brings together a wide range of organisations, people with dementia and carers to work together towards becoming a Dementia-Friendly Community. The member organisations include nursing, primary care, and other health and care services. Member organisations also include faith, housing, leisure, council, fire and rescue, legal, libraries and volunteering services. 

The Purpose

The purpose of the survey was to ensure that the voices of people with dementia and carers influence the work of the Dementia Action Alliance by informing its priorities with what matters and makes their community dementia-friendly for them. 

Preparation

People with dementia and carers worked with organisation members of the Dementia Action Alliance to agree a short survey of not more than 10 questions. They took into account how responses would be gathered and collated, leading them to choose to use a free online survey tool as well as paper versions of the survey.  

What happened

Members of the Dementia Action Alliance carried out their survey of people living with dementia, or providing unpaid care for a loved on with dementia in autumn 2018.

• They used twitter and facebook to promote and publicise the survey.

• They sent electronic and paper copies to local branches of Age UK, Alzheimer’s Society, and the Memory Service at Midlands Partnership Foundation Trust (formerly SSSFT) and asked them to invite people using their services to complete the survey.​

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The results

The areas people said most needed improvement were

• General Practice
• hospital care
• support for unpaid carers
• the need to feel active and included in the community.

The comments people made helped to show where and how to make improvements, often low cost and in line with what good practice. 

• For example, across general practice, hospital and social care
  • there was a strong theme about lack of dementia-awareness of staff which hindered effective engagement about care
    • This is Me information was being ignored
    • carers were not involved in care effectively
    • people not receiving support they need to live well with dementia.​

Despite the small number of respondents, checking the results shows they reflect areas for improvement identified in the Shropshire dementia strategy.

This is understood to be the first such survey by this Dementia Action Alliance. It provides areas for further exploration.

What changed for people with dementia

• The voices of people with dementia and carers were able to feed in clearly to the work of making their local area more dementia-friendly.

Learning points

• a quick and low cost survey has been able to provide some local insights about living well with dementia - and even with a small sample group has been able to show that people are still experiencing issues that the local dementia strategy has guided services need to be addressed.
• the small number of respondents was disappointing. On reflection the organisers would have liked to secure more commitment from local organisations about encouraging people with dementia, and carers, to complete it. This is something they want to take into account for any future surveys.

Key contact to find out more

Dementia Friendly Communities Team, West Midlands, Alzheimer's Society

Useful links

Blog: Day to Day Dementia in Shropshire and Telford: George Rook

Shropshire, Telford and Wrekin Dementia Action Alliance