Reshaping Dementia Services - Involving and enabling people with dementia

03 July 2015

Katherine Bishop, Learning and Development Officer for Research in Practice for AdultsHow do we involve people with dementia in service planning and enable them to have a strong collective voice? Katherine Bishop, Learning and Development Officer for Research in Practice for Adults, brings together findings from our Involving People with Dementia workshop showcasing innovative projects from across the country.

How do we involve people with dementia?

During May I was able to hear challenges, solutions and innovative practices to answer this question at the second of Research in Practice for Adults (RiPfA) Involving People with Dementia workshops in London. The Care Act provides social care with a huge opportunity to get involvement right. From the changes in the way services are commissioned, to the shift from needs-led to outcomes-focused practice that puts wellbeing at the heart of social care.

Led by Rachael Litherland of the Dementia Engagement and Empowerment Project (DEEP), a fantastic programme which connects dementia support groups across the country to strengthen their collective voice, and co-facilitated by The Forget me Nots (FmN), a Kent based group of people living with dementia, who campaign on dementia issues and bring huge insight into what it’s like to live (and live well) with dementia and what good dementia services should look like, the workshop brought together fundamental messages on how we can involve those with dementia.

What happened at the workshop?

The aim of the workshop was to connect frontline practitioners and service commissioners in adult social care with those living with dementia to discuss, debate and challenge how best to involve people with dementia to design and deliver effective services. We certainly achieved that!

Participants discussed with the Forget me Nots how they could involve people with dementia more effectively to re-design dementia services. Together they came up with some clear ideas:

  • Get to know the people living with dementia in your area and listen to their needs. How do they wish to live their lives and what would improve their wellbeing (be outcomes focused)? Do this through group discussion and observation, and always ask clear questions – for example what would your perfect day look like?
  • Think carefully about how you will consult with people – afternoon tea in a café rather than a meeting room? Also think about the location, a museum can provide lots of stimulus and inspiration for starting a discussion. What about a group without a building – using multi-media (e.g. Skype or an online forum)? There are a growing number of examples from the DEEP network of groups using these methods to communicate with other groups across the country and a range of guides such as writing dementia friendly information and choosing a dementia-friendly meeting space.
  • Don’t forget to engage with existing service users at different stages of dementia. Talking Mats can be used as a communication aid, which can be helpful for people in the middle/later stages of dementia and are also available in a digital format. The Joseph Rowntree Foundation has also published a review of the use of talking mats, which is an interesting read.Also don’t forget to engage with potential service users, for example those in the very early stages of the disease.

DEEP messages from the day:

When Dementia Engagement and Empowerment Project (DEEP) began three years ago 12 groups were identified, this has now grown to 38 groups across the country, with a strong collective voice. People with dementia are talking more and more about disability rights, with groups beginning to use IT to connect with each other to share ideas (for example using Skype to connect with each other and hold meetings).

Their growth has stimulated another national project, which seeks to strengthen the voice of people with dementia: On Our Radar, a national project that brings together peoples’ diverse experiences of living with dementia through a series of audio diaries. With the aim of prompting a richer dialogue about the varied forms of the condition, the diaries are themed around areas: public perception; care and support; policies and service provision.

Forget me Nots messages from the day

Dementia can be a world of loss: loss of memory; loss of partner/spouse; loss of friends; loss of social life and possible loss of jobs for those younger people diagnosed.

The Forget me Nots (FmN) highlight that dementia is not just an ‘old person’s disease’. Many group members are under 60 and the way in which we work with people with dementia needs to reflect this. When doing reminiscence work for example, many peoples’ frame of reference is now 1960s, not the 1940s. We need to lose the stigma around dementia (as there was with cancer 10-20 years ago), with the message being – you can live well with dementia.

The FmN main motivations as a group are to be connected with the world, to have a voice and feel they are making a difference; to try and make the world a better place; to work constructively with professionals who are trying to help them and to contribute to the learning of the students who support their project. The FmN group are supported by Psychology students from Canterbury University, who arrange the meetings and take minutes. Ellie, a student who accompanies the FmN spoke of the main qualities someone needs to support the group:

  • Open mindedness to understand the complexities of dementia.
  • That the people supported are not always logical and all experience different symptoms and cope in different ways with their diagnosis.
  • They need to be good listeners and patience is key, don’t put anyone under-pressure or panic them.

Dementia groups can bring about tangible change. With regard to the Mental Capacity Act, the FmNs successfully lobbied the House of Lords to change the way their consultation practice with members of the select committee traveling to Kent to consult with the FmNs on the impact of the Act on their lives.

Concluding thoughts

There are some clear messages from people living with dementia. It is clear that a diagnosis of dementia can bring fear – fear about losing your job if diagnosed young; about loss of memory; about losing touch with the world around and what the future will hold and how other family members will cope. Post-diagnosis support has also been heavily criticised by many people living with dementia, with horror stories about people being told of their diagnosis and sent away with a leaflet. Those with dementia and their carers want personalised support to navigate their way through the times ahead, with timely and supportive diagnosis as well as a network of support.

But the Forget me Nots and others in the DEEP network also bring a message of urgency.

‘Demography is getting ahead of us as our population is aging – dementia is going to affect many of us and we need to get ahead of it.’ FmN, May 2015.

This is borne out by the prediction that by 2050 2 million people in the UK will be living with dementia (Alzheimer’s Society 2014)

There is hope that the Care Act will support a more enabling and person-centred approach to dementia care, and that co-production and building community capacity of services will be key to this success. The FmNs and other groups in the DEEP network work hard to try and change perceptions and to show that although fear may never go away, a diagnosis of dementia is just the start of a journey. It is possible to live well with dementia and to have your voice heard.

Related resources:

Dementia publications

Strategic Briefing: Maximising independence for people with dementiaStrategic Briefing: Maximising independence for people with dementia

Dementia is a key topic in health and social care and this briefing provides an overview of key policy drivers, practice examples and underpinning research to support you in developing services for people living with dementia. It’s of particular use for Directors, Lead Members, managers, commissioners and practitioners.

What is the Mental Capacity Act 2005?: Customer Guide (2013)What is the Mental Capacity Act 2005?: Customer Guide (2013)

This guide provides a jargon-free introduction to the Mental Capacity Act 2005. Sometimes people who have, for example, dementia, a learning disability, mental illness or a brain injury are unable to make decisions.


Key Issue: Effective co-productionKey Issue: Effective co-production

Co-production is potentially a radical idea: that services are designed and delivered equally by professionals and those who use them. This publication brings together the knowledge on the topic, defining the issues and explaining key concepts. It also looks at the implications – and the challenges – for commissioners, service providers, practitioners and people who use services.

Building Community Capacity: Key issue (2012)Building Community Capacity: Key issue (2012)

This Key Issue explores the meaning of social capital and its potential to utilise untapped resources – particularly relevant in times of budget cuts.

Dementia blogs

Creating a dementia friendly community: Learning from Yorkshire and beyondCreating a dementia friendly community: Learning from Yorkshire and beyond

Philly Hare, Programme Manager (Ageing Society Team) of the Joseph Rowntree Foundation, and speaker at our upcoming Leaders’ Forum: Changing the conversation – building community resilience and social capital, discusses their work in creating dementia friendly communities.

Dementia Awareness Week: The importance of starting to talkDementia Awareness Week: The importance of starting to talk

Lisa Smith, Research & Development Manager, writes about the importance of starting to talk, for Dementia Awareness week. A personal viewpoint, Lisa shares the at-times confusing feelings provoked by our experience of Dementia.

Involving and listening to people with dementiaInvolving and listening to people with dementia

Rachael Litherland writes about how we can work together to involve people living with dementia in the development and delivery of care services. As a director of Innovations in Dementia, a national community interest company, Rachael’s work is focused on supporting people with dementia to have their voices heard and acted upon at the highest levels, at the moment particularly through the Dementia Engagement and Empowerment Programme (DEEP).

Katherine Bishop, Learning and Development Officer for Research in Practice for AdultsKatherine joined Research in Practice for Adults in 2011. Prior to this, she worked for Research in Practice as Learning and Development Officer.  Previously she has worked in the Civil Service and NHS within a library and information management role. Katherine is currently RiPfA Account Manager for partner agencies in the North West, East Midlands and Yorkshire and Humber. 

More posts from Katherine Bishop:


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