Dementia Strategy and Dementia Companions in Shropshire
In Shropshire, working with people with dementia led to the introduction of a new role, the 'Dementia Companions', who help with personalised care planning.
Services needed a shared vision to enable them to prepare to meet the needs of Shropshire's population: expected to be one of the oldest populations in England by 2031, with around 45% of the population aged over 65 years (with around 5,900 people over 65 and around 410 people under the age of 65 living with dementia in Shropshire).
Co-produced Dementia Strategy Action Plan Refresh for period from April 2016: Healthwatch Shropshire led and reported work on this.
- They engaged with 18 people living with dementia, 29 carers, and17 providers of dementia services.
- Using a semi- structured survey based on the previous Shropshire Dementia Strategy Action Plan, they explored what was working well, what needed to be improved and identified gaps.
- Students from Keele University Medical School explored how the pathway for people with dementia was managed in each General Practice.
The recommendations resulting from this informed the 2017 to 2020 Dementia Strategy and included:
- raising dementia awareness of healthcare professionals
- GP practices to have a dementia navigator to support and guide the person with dementia and their family through their dementia journey.
- postponing access to statutory services
- encouraging independence in the community for as long as possible. They said it was important to continue to work towards dementia-friendly communities so people feel included.
Co-produced Dementia Strategy 2017-2020: co-produced by the Shropshire Clinical Commissioning Group and the members of the Health Economy Steering Group - including people living with dementia - who had been involved in the Healthwatch Dementia Strategy Action Plan refresh work in 2016.
- The CCG used the key areas of the NHS Well Pathway for Dementia to provide a framework around which their collaboration and engagement activity took place with people living with dementia, carers, and organisations.
- They came up with a vision to achieve by 2020
The CCG introduced a new model for supporting people with dementia (the flower image at the top of this page), with a new role of Dementia Companion at its heart.
The role is a new way to help people with dementia and their carers have a more positive experience of living with dementia, and to make the later stages of the journey less distressing
Everyone diagnosed with dementia and where possible their carer to be given the offer of help throughout their journey by a "Dementia Companion". The Dementia Companion would be most likely to be employed through a third-sector organisation such the Alzheimer’s Society.
The Dementia Companion's role includes to
- help with planning about future needs.
- help the friends and family of the person diagnosed, to be dementia aware.
- encourage social groups to involve people with dementia in activities
- have local knowledge of Dementia Friendly businesses such as taxi-firms, pubs, hair salons, cafes, shops etc. and will be able to promote their access to the person with dementia and their Carers.
- promote the importance of ensuring the personal preferences such as when admitted to hospital (for example by using 'This is Me') .
- assist carers and others working with people with dementia to develop skills such as approaches to communication, activities of daily living, skill training and activity planning.
- remain in place as a point of contact when the person with dementia is in residential care.
- be involved in discharge planning from hospital admissions.
- provide the carer of the person with dementia with a level of emotional support, and signpost on to bereavement support.
There's an increasing number of Dementia Companions. By winter 2017 Dementia Companions had been set up in Newport General Practices. By March 2018 there were two Dementia Companions, provided by Alzheimer's Society, in Ludlow and Oswestry. By March 2019 more Dementia Companions had been created in Shropshire (including Telford and Wrekin).
In late 2018 the Shropshire, Telford and Wrekin Dementia Action Alliance survey of carers and people with dementia reached out to ensure people affected by dementia were involved, not just in its steering group but more people living locally too. The survey found that priorities respondents suggested were still those that the strategy had identified, and that there was still work to do to tackle them.
The Dementia team at Shrewsbury and Telford hospital has been engaging with people with dementia and carers, learning from their experience to improve its provision, including encouraging use of 'This is Me' and making ward and hospital environments more dementia-friendly.
What changed for people with dementia:
Less than two years in to the strategy, there is still a lot not yet achieved, but the strategy is guiding change and anecdotal feedback and some quantitative measures are suggesting that people are starting to see benefits from the strategy.
- Formal evaluation of the Dementia Companion role has yet to be completed, but already clear benefits have emerged from quantitative and qualitative data. For example:
- significantly more referrals are being made, and more people being helped to live well with dementia thanks to the Dementia Companions.
- Feedback from people affected by dementia, and frontline staff caring for them, at the Shrewsbury and Telford hospital has been offered immediately and voluntarily on some of the changes they are making and is very positive.
- at a group discussion in February 2019, Dementia Companions reflections included:
- 'I feel I can help people on things that would be missed otherwise. I can help avoid problems becoming bigger, more complicated and avoid crises happening.'
- 'In the past people would often reach out for support because something bad had happened, often a crisis. Now that we keep in touch and follow their story, I find there are rarely crises.'
- 'People often tell me 'it's good to know that you are there and you will contact me, rather than me contact you'. When I first spoke with them, just after their diagnosis, they may have said they didn't need any help. When I call them again a little while later, they often tell me that actually some things have cropped up that they would like some help about.'
- 'Continuity is a bonus - the connection with the person with dementia and especially with their family. We're helping people to stay living at home together for longer, keeping people out of hospital.'
- 'We have much better, closer, relationships with other organisations - much more collaborative working.'
Key contacts to find out more
Alzheimer's Society team in Shropshire (including Telford and Wrekin) Email: [email protected].