Latest News from Innovations in Dementia

Latest News from Innovations in Dementia

Innovations in Dementia celebrates £700k National Lottery grant to help people with dementia have a say

Innovations in Dementia Community Interest Company (CIC) is today celebrating after being awarded  £700,000 in National Lottery funding to support its work with people with dementia. The UK wide not-for-profit, based in Exeter, will use the money to help more people with dementia have a say in decisions that affect their lives, through a new programme called Dementia Voices.

Innovations in Dementia has been running since 2007 and has 6 staff across the UK.  It was founded by Rachael Litherland and Nada Savitch, who wanted to inspire people to think differently about dementia. The organisation works with people with dementia on projects that show that, although dementia is life changing, it need not be life ending.

Innovations in Dementia has led groundbreaking work on rights, on dementia-friendly communities, on developing peer-group support and through many other projects. All of their work is founded on the belief that people with dementia have a right to a say in decisions that affect their lives, and a right to feel that they belong.

The new funding from The National Lottery Community Fund, which distributes money raised by National Lottery players for good causes and is the largest funder of community activity in the UK, will allow Innovations in Dementia to harness the collective potential of the DEEP network (over 120 peer groups of people with dementia around the UK); the

Dementia Diaries project (a growing resource of first-hand testimonies online); and the Dementia Enquirers project (which puts people with dementia in the driving seat of research).

It will see many more people with dementia having a say in their lives, including people with more advanced dementia. It will mean that the voices of people with dementia will be heard more loudly, more clearly, and more widely.

Steve Milton from Innovations in Dementia says: “We’re delighted that The National Lottery Community Fund has recognised our work in this way. The three projects involved have worked brilliantly, but they will be so much more effective working together. Now, thanks to National Lottery players, we will be able to support many more people with dementia to feel that they still belong, still have a voice, and still have a say in the decisions and issues that affect their lives.”

John Knights, Senior Head of UK Funding at The National Lottery Community Fund, says: “We are delighted that National Lottery funding will empower more people living with dementia to have their voices heard and put them in the lead to help shape their future. By bringing together three innovative projects, Innovations in Dementia will help more people and communities across the UK to thrive.”

Wendy Mitchell, a person with dementia, says: “Funding is always an issue for many organisations, so I’m so thrilled the National Lottery has seen fit to back this project. Innovations in Dementia have an understanding of our needs far bigger than their size. They are the only people I trust to support me, because I know they ‘get it’. They are willing to listen and learn continually. They never forget why they do what they do”.


[Steve Milton, director Innovations in Dementia 07549944795 or email:]

Pictures are available upon request.

Notes to Editors:

National Lottery Community Fund logo

About The National Lottery Community Fund

We are the largest community funder in the UK – we’re proud to award money raised by National Lottery players to communities across England, Scotland, Wales and Northern Ireland. Since June 2004, we have made over 200,000 grants and awarded over £9 billion to projects that have benefited millions of people.

We are passionate about funding great ideas that matter to communities and make a difference to people’s lives. At the heart of everything we do is the belief that when people are in the lead, communities thrive. Thanks to the support of National Lottery players, our funding is open to everyone. We’re privileged to be able to work with the smallest of local groups right up to UK-wide charities, enabling people and communities to bring their ambitions to life.


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Latest report on our work on signage

We’ve been working with people with dementia through 2018 to develop new symbols that are easier for people to understand.

At the end of the year we conducted an online survey to find out what people thought about the symbols before we went on to the next stage of development.

We also conducted research with 590 great kids from Exwick Heights Primary School.

We’ve written a brief interim report to let people know what we found out from those 2 pieces of work.

Click here to read the report

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iD and ALWAYS Group publish ‘Reflections on PPI’ article in special edition of the journal “Dementia”

For the past 4 years we have been working with a PPI group of people with dementia and carers – called the ALWAYS group (Action on Living Well: Asking You), as part of the IDEAL research programme  PPI is a term that is used a lot in research. It stands for Patient and Public Involvement.

Rachael Litherland from Innovations in Dementia, people with dementia and carers from the ALWAYs group and researchers from the IDEAL project have published an article today in a special edition of the journal “Dementia”. You can read our article  “Reflections on PPI from the ‘Action on Living Well: Asking You (ALWAYs) advisory network of people with dementia and carers as part of the IDEAL study” here

In the article we discuss some of the practicalities that can make PPI a better experience – for people with dementia and for researchers.

This edition is open access for two months – which means that anyone can read it on-line. The edition is dedicated to articles about the involvement of patients and the public in dementia research. This is a link to this special edition

Finally you may want to read a blog we have written: or even watch our film below!


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New review of the evidence for dementia friendly communities published.

In 2017 we worked with Imogen Blood Associates on a review of the evidence for dementia friendly communities.

This was part of the EU Joint Action on Dementia looking specifically at dementia friendly communities.


Our research involved a review of 82 articles and reports.

We also held three discussion groups with people with dementia, including 2 DEEP groups and the European Working Group of People with Dementia.

We conducted 20 interviews with people involved in dementia friendly countries in 10 countries, mostly in the EU but also in Australia.

The report

  • considers ‘what works best’ in developing dementia friendly communities
  • proposes a new definition of dementia friendly communities
  • sets out a new model, based on ‘what works best’
  • suggests a framework for evaluating dementia friendly communities

You can see a summary, as well as download the full report by clicking here

On the same page you can also see a video about the report, presented by Imogen to the Alzheimers Europe Conference in 2017 here.

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Dementia Enquirers – Exciting News for DEEP

Here’s a press release from the Big Lottery Fund about an exciting new development that will keep people with dementia at the heart and start of research.

Press release

People with dementia given a voice in research thanks to £700,000 National Lottery boost

People with dementia will be given a voice in research about the condition, thanks to over £700,000 of National Lottery funding, which will kick start the ground-breaking new project, Dementia Enquirers.

Working with DEEP, the UK Network of Dementia Voices, Innovations in Dementia will use the new National Lottery grant over the next three and a half years to develop a new approach to research, that is led and controlled by people experiencing dementia themselves.

DEEP is a UK-wide network of more than 100 community groups, with around 1,000 people living with dementia, who connect to support one another to get their voices heard. Innovations in Dementia will help them to undertake their own research into the condition, rather than being participants. This will enable people with dementia to explore how knowledge is acquired and applied in a way that feels relevant to their own lives.

They will be involved in identifying research priorities, and planning and undertaking their own research, with the help of small grants distributed from the new National Lottery grant. The project will also explore with people experiencing dementia the lessons that emerge from their work, and share this learning widely within the dementia field and beyond.

University researchers may be involved as advisors or have specified roles within the projects, bringing knowledge around research methods and approaches, and helping DEEP groups to create and deliver robust research projects.

People involved in DEEP will also be supported and trained to capture and share their findings in a creative way such as through film, music, poetry and photography.

This is thanks to support from the Big Lottery Fund, the largest funder of community activity in the UK, which distributes money raised by National Lottery players for good causes.

Rachael Litherland, Director of Innovations in Dementia, said: “We are so proud to have been awarded this National Lottery grant, and excited to be undertaking such ground-breaking work. We are confident that the project can influence the prevailing approaches in research – while bringing new respect for the skills, expertise and resilience of those who are living with dementia.”

Joe Ferns, UK Funding Director at the Big Lottery Fund, said: “We’re delighted to be funding this project, which puts people with experience of living with dementia at the heart of research into the condition. Thanks to National Lottery players, this important issue is being tackled in a way which helps people to feel more in control of their lives.”

Notes to editors:


For more information contact Rachael on 01392 420076 or 

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DEEP and tide launch a new report sharing the perspectives of people living with dementia and their carers

In Autumn 2017, ‘DEEP – The Dementia Engagement & Empowerment Project’ (the UK network of Dementia Voices) and ‘tide – together in dementia everyday’ (the UK network of carers of people with dementia), held a series of three workshops in North West England to stimulate conversations about end of life care with people living with dementia and carers of people living with dementia.

The aim of the workshops was to gather these perspectives and share them as part of the opening plenary for the 2017 UK Dementia Congress in Doncaster. A main theme of this conference was around end of life issues for people with dementia and carers and particularly post bereavement support. From these workshops we have produced this report, that aims to shift end of life conversations from difficult to important. Click here to download the report.

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Report on our work with the Research Institute for Disabled Consumers (RiDC)

For the last 3 years we have partnered with the Research Institute for Disabled Consumers (RiDC) in a series of consumer testing projects around the UK.


A fruitful collaboration; summary of a 3 year collaboration between Innovations in Dementia and the Research Institute for Disabled Consumers (RiDC)


For the last 3 years we have partnered with the Research Institute for Disabled Consumers (RiDC) in a series of consumer testing projects around the UK.

Over that time groups in the DEEP network were invited to think about local services, products or organisations that might want to become more accessible to consumers with a dementia.


A full report of each of the projects carried out across the country is available on a dedicated page on the RiDC website but here’s a flavour of several of the local projects.

  • DEEP group members in Rochester did some mystery shopping at the Huguenot museum in Kent, advising on clarity of audio and visual information.
  • We went to the Bingo in York (advising on pace of games, orientation and language) and the Royal Shakespeare company in Stratford, advising on signage, performance and facilities.
  • We tested out taxis in Camden, (making recommendations on awareness and identification), the ‘Next Stop Announcement’ system on the buses in Leeds (informing on the design and display of information) and tested out the accessibility in a major bus centre and rail complex in Belfast, advising on signage, information and ticket purchases.
  • And we threw ourselves into testing the process and accessibility of obtaining financial lasting powers of attorney in West Berkshire, recommending training and calling for a less stigmatised approach to the process.

As well as providing key recommendations for those organisations tested, DEEP members found the experience very positive and it gave great confidence for groups to offer further work locally, which they continue to do.


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iD Response to Enquiry into Dementia and Disability

The All-Party Parliamentary Group on Dementia is currently consulting on ‘dementia and disability’. iD have submitted our response which you can find here.

We encourage everyone to send their own response, however short – the deadline is 20 July and the link is here

Innovations in Dementia Response – Click here to view the pdf.

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IDEAL Masterclass on involving people in research

In this video Rachael and Keith discuss involving people with dementia and carers in research

In this masterclass, Rachael Litherland from Innovations in Dementia is joined by Keith Oliver, a member of the IDEAL study public and patient involvement (PPI) group ALWAYs, Dr Catherine Quinn from the University of Exeter and Dr Alex Hillman from Cardiff University to discuss PPI in research. They reflect on the value of PPI in research from the perspective of both advisory group members and the researcher. The masterclass contains recommendations for good practice when planning or using PPI in research.

To see the video – click here:

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Brain Waves

Innovations in Dementia monthly newsletter. April 2018.

In this newsletter:

Where has Brain Waves been?

What have we been doing?

What will happen with news from now on?

Click here for a pdf of the newsletter.

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