1. What does your organisation do and who do you work with? What is your role?
Sarah Swift (She/Her) I am a Local Services Manager for Alzheimer’s Society, supporting to deliver dementia services across Berkshire and Oxfordshire.
At Alzheimer’s Society we’re working towards a world where dementia no longer devastates lives. We do this by giving help to those living with dementia today, and providing hope for the future. As a Society, we are made up of people with dementia, carers, trusted experts, campaigners, researchers and clinicians. We are the UK’s largest collective force of people with unparalleled knowledge and over 40 years of experience addressing the biggest challenges facing people living with dementia.
Alzheimer’s Society supports people living with dementia and people with memory concerns. We support carers and people with a diagnosis across BOB and nationally.
2. Why is Co-Production a priority in your work?
We want people affected by dementia to be at the heart of everything we do Involving people affected by dementia in each stage of the design process is vital to achieve maximum impact.
3. What is in place to make your services more accessible?
We provide services in a variety of formats, face to face, over the phone, conference calls and in writing. This can include translated materials, audio, BSL and large print if required.
Nationally, when new publications are produced, we ask people living with dementia for their feedback and this includes feedback on how accessible they are. The ‘help sheet’ and Easy Read versions of publications are designed to be more accessible too.
4. How do you currently involve users to create and develop services?
Dementia Voice
We have a Dementia Voice group in Reading, this is an empowerment group made up of people living with dementia. The group share their views on a variety of topics and are consulted on national and local pieces of work.
The Reading Dementia Voice group have also fed onto the Royal Berkshire Hospital’s (RBH) Dementia Strategy. They questioned, shared positives and suggested improvements to ensure that a strategy made for them genuinely meets their needs. The Dementia lead at the NHS RBH provided feedback on the direct questions and comments raised by the group when they considered the strategy.
Locally the group shared feedback on the South-Central Ambulance Service picture window providing the valuable insight for what someone with dementia may find comforting when experiencing the stress and anxiety of being in an ambulance.
My team run 3 dementia voice groups across Berkshire and I am proud of the impact they have. People with dementia are the experts and to really make a difference we need to be led by their experience. Something I am passionate about with the local Dementia Voice groups is that we make actionable difference. Rather than trying to fix everything (although our participants could tell us where to start) we find current projects where feedback is not just listened to but can be acted upon.
Alongside this we listen to the topics the group raise and look for methods to influence these, finding relevant local and national projects which can be shaped by their experience. It is important to share the ‘what happened’ as a result of their feedback too. The groups give people a voice, attendees feel valued I am encouraged when they leave knowing that their involvement has made a difference.
The Reading group are keen to feed into library refurbishment plans as well as visit local GP surgeries to give pointers to make the space more dementia friendly.
National Level
An example on a national level is sharing feedback on the updated ‘This is me’ publication. ‘This is me’ is a simple leaflet for anyone receiving professional care who is living with dementia or experiencing delirium or other communication difficulties. (more about this is me)
On a National level Alzheimer’s Society’s Involvement Team lead on the work we do to involve people living with dementia in our work. A recent example of Co-Production is the July Edition of the Dementia Together Magazine which was co-produced: co-production-panel. In Essex there is a service for people with Young onset Dementia which is co-created and co-delivered.
5. What changes have been made as a result of Co-Production?
We have learned that co-production needs to be planned and given additional time – this has led to the creation of guidance documents to support finding the right people, ethical considerations, practical considerations and feedback information.
6. What organisational benefits have you had from Co-Production?
Alzheimer’s Society support people living with dementia, and in order to do that we need to listen to people living with dementia – their feedback shapes our brand, strategy and focus as an organisation. It also makes the work more effective and increases impact. Involving people living with dementia in our work increased trust and integrity of our services and position.
Members of the public are more likely to trust us and feel heard as a result.
7. What top tips would you share with an organisation that wants to involve users in shaping their services?
Alzheimer’s Society have produced the ‘Dementia Experience Toolkit’ to support organisations and individuals involve people living with dementia in their work:
dementia-friendly-co-production
8. Lessons learned around Co-Production – Things that went well or not so well
At the local involvement groups one of the key learnings is around being clear with people on where they can influence and to support this, we use the idea of ‘car-parking’ where topics are raised which are important to the group, but there is still work to do to build an inroad/pathway to give feedback on that area. We have learnt that communication is important around the group – the group is not formed to solve the problems, but instead a group to be consulted on and where there are particular topics that are important to the group, we need to find tangible ways to provide input in these areas.
It is also important to go back to the group with the lessons learnt and the result of their feedback so that we can move from engagement into something more.
Watch video about Dementia Voices.
