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Innovative projects - people with dementia and their communities

Innovations in Dementia believes people with dementia can have an active role to play in the communities in which they live: that includes people living in their own homes and those living in residential care.

On this page:


Dementia friendly communities

For a long time we have been interested in what local communities do or don’t do to support people with dementia to stay connected and involved.

Creating a dementia-friendly York

The York Dementia Without Walls project looked into what's needed to make York a good place to live for people with dementia and their carers. Dementia-friendly communities can better support people in the early stages of their illness, maintaining confidence and boosting their ability to manage everyday life. The research team investigated how local resources can be harnessed to this end, provided there is enough awareness.

As part of our involvement in this project we supported people with dementia to create an accessible report for this project. It was important that there should be a report that was written for people with dementia, by people with dementia. Nada worked with four people with dementia who had been involved in the project in York. She and Claire, the publishing manager at the Joseph Rowntree Foundation, met people with dementia in small groups or individually. We talked about:

  • what the most important findings were for people with dementia themselves
  • how the information should be displayed
  • the language that is used in the report.

It was important that the report was relevant and understandable to people with dementia who had not been involved in the project. So Nada took the draft report to members of the EDUCATE group in Stockport. They kindly made more suggestions that were included in the final report.

Both reports can be viewed and downloaded from the JRF website
Go to: www.jrf.org.uk/publications/creating-dementia-friendly-york

October 2012

Dementia Friendly Communities: Guidance for Councils

Innovations in Dementia worked through the Ageing Well programme with two areas, Hampshire and Sheffield, to support their work to create dementia friendly communities.

Original guidance to councils was published in partnership with the Local Government Association in 2012.

This guidance, and the tools which came with it have been widely used and adapted across the UK and overseas, including in the United States, New Zealand and Australia.

Much has happened in the field of dementia friendly communities since then, and many of the tools contained within it have been superseded by developments and the production of further resources arising not least from the Prime Ministers Dementia Challenge.

In 2015 we updated the guidance including a lot of new information reflecting best practice, as well as a renewed and refreshed set of ideas and guidelines for councils who want to make their communities better places in which to live with dementia.

A copy of the guidelines can be downloaded here: http://www.local.gov.uk/web/guest/publications/-/journal_content/56/10180/7415470/PUBLICATION

How to do an access audit

The environmental checklist from the original 'toolkit' has now been updated and improved into a more comprehensive guide to making buildings easier for people with dementia.

Download a PDF of our guide: How to do an Audit

Please contact Steve if you have any questions about the tools, or would like to know more about our work in this area.

Email: steve@innovationsindementia.org.uk
Telephone: 01392 420076

August 2015

What makes a dementia friendly community?

In January 2011, the Department of Health ask us to talked to people with dementia and their supporters about their communities.

We wanted to find out what makes a good community for people with dementia to live in, and what can be done to make this happen.

Here is what people with dementia and their supporters told us:

Things that make the most difference in a community are:

  • The physical environment
  • Local facilities
  • Support services
  • Social networks
  • Local groups

People said that things could be made better by:

  • Increasing people's awareness of dementia
  • Having more local groups for people with dementia and carers
  • Providing more information, and more accessible information about local services and facilities
  • Making local facilities more accessible for people with dementia.

Based on what people told us, we recommended that:

  • Service providers should be made aware that many people with dementia are considered “disabled” under The Equality Act 2010
  • People with dementia and their supporters should be made aware of their potential rights under the Equality Act 2010, and supported to press for their rights if necessary.
  • We build on the potential for people with dementia in advising on access issues, raising awareness and training.
  • We consider the potential for further development of “buddy” schemes to support people with dementia in the community.
  • Consideration be given to the applicability of “circles of support” to people with dementia.
  • The continued support and development of local support groups for both people with dementia and carers must be prioritised.
  • Organisations responsible for providing support and information to people with dementia and their supporters should ensure that the information they provide is informed by a social as well as a medical model of dementia.
  • We maintain and support awareness campaigns nationally and locally.
  • Guidance is produced to enable service providers to produce information which is accessible people with dementia.
  • Future consultations consider the need to allow the voice of a wider range of people with dementia, including those with more advanced dementia.

We reported our findings at a meeting on the 16 Feb hosted by the Department for Health – looking at dementia and the “Big Society”

Download:

If you have trouble downloading these files - please contact us as we can supply documents in different formats

February 2011



“Shared Lives”

Shared Lives is a type of living arrangement that organises permanent or short stays in the home of a local family. The person is welcomed as a member of the family. The family is checked and approved, trained and monitored by a Shared Lives scheme.

Shared Lives has traditionally been a service for people with learning disabilities. We think that Shared Lives could be a good arrangement for some people with dementia who need extra support.

We are half way through a three-year project, funded by the Esmee Fairbairn Foundation to look at developing “Shared Lives” opportunities for people with dementia.

The project is a joint project between Innovations in Dementia and Shared Lives South West
For more information about SWAP visit their website - www.sharedlivessw.org.uk

Shared Lives services aim to:

  • Enable people to live life to the full within a safe and enabling family and community setting
  • Offer people support and encouragement in all aspects of their life
  • Promote and develop people’s independence and daily living skills
  • Help people with their every day care and health needs
  • Help people realise their ambitions and potential.

Shared Lives is perceived by people with dementia and their carers as a really positive alternative to more traditional types of care:

  • “It allows me to indulge my passion for photography. It relieves boredom and I see things I would not get to see. It allows my wife to have a social life too.” (person with dementia)
  • “Because for me, relating to mum rather than the dementia was very important – so being with a family rather than a carer reinforced normality.” (family carer)

The project islooking at the best ways of developing and supporting this kind of arrangement. We will be training and mentoring Shared Lives schemes in different parts of the country. We will also be looking at what people with dementia think about Shared Lives arrangements.

The project will produce a wealth of information that will hopefully mean that a Shared Lives dementia service could be a possibility in every area.

We also know that there is a high incidence of dementia among people with Downs Syndrome, and will be pulling together peoples experiences around this as part of the project.

Spreading the word

Image of DVD cover As part of this project we have worked with Biggerhouse Film to make a short film about the experiences of all the people involved in one Shared Lives service.

The film features Pat and her husband Roger, who has dementia. Roger has regular breaks through Shared Lives South West with Kay, a Shared Lives carer who lives in the beautiful area of Dartmoor. The film shows how the service works for Pat, Roger and Kay and each of them explain what Shared Lives means to them.

The film are available to watch and purchase from the Shared Lives website
Go to www.sharedlivessw.org.uk

January 2012

Getting creative

As part of the project we run “Good practice days” for Shared Lives schemes. There are approximately 150 Shared Lives schemes across the country. Some of the schemes are already working with people with dementia, whilst others are interested in developing their work.

Our first good practice scheme was on “Dementia and learning disability”. Many people who currently use Shared Lives have a learning disability. As this group of people get older, they are statistically more likely to develop dementia, and at an earlier age. Dr Karen Dodd, an eminent psychologist, who has done a lot of work around the issues facing people with learning disabilities who develop dementia, was our guest speaker.

Our next good practice day will look at how families who provide Shared Lives can use creative methods to help them to support a person with dementia. We are joining forces with an organisation called Ladder to the Moon (www.laddertothemoon.co.uk).

Ladder to the Moon is a training and theatre charity, using staff coaching and interactive theatre to improve quality of life for older people living in care, particularly people with dementia.

They use a technique called Relationship Theatre®. This uses professional actors and coaches, who work with care staff within the day-to-day life of the care home setting to enable people with dementia to get enjoyment out of whatever they are doing.

Characters (played by professional actors) treat the care setting as if it was somewhere different (eg a Hollywood Studio) and everyone participates in whatever way they wish to in the dramatic world that is created by the characters.

A professional coach works with staff across the setting to develop three key attitudes (confidence, awareness, and responsibility) and three key skills (communication, initiation, and improvisation), enabling them to create richer and more connected relationships with their residents, patients, or clients.

We are keen to find out if any of these approaches can be adapted for use within a family environment. We also want to inspire people to think more creatively about how care for people with dementia can be provided.

April 2011


Our House

The 'Our House' project aims to answer the following questions:

  • How can we best engage residents with dementia in the life of their care home?
  • Is it possible for residents to feel a sense of ownership in the running of their care home?
  • What kind of methods and approaches can help care home staff to involve residents?

The project will run for two years in two care homes for people with dementia: Charnwood House in Coventry (run by Methodist Homes Association) and Lennox House in London (run by Care UK).

Charnwood House Lennox House

For more information about Care UK visit their website - www.careuk.com/dementia

April 2011

The benefits of “having your say”

Researchers at the University of Exeter have found that when care home residents are more involved in decisions, this improves their memory, attention and satisfaction with life. In a recent project, some residents were involved in redecorating a communal lounge. These residents reported improved wellbeing, and made more use of the communal space. Moreover the staff found the residents to be more engaged with their environment and the people around them, to be generally happier and to have better health. These patterns were observed one month after the move and remained four months later.

We will be working with Charnwood House and Lennox House to see what kind of outcomes there are when residents with dementia have more of a say in what happens in the care home.

Progress report

Project ambassadors for the Our House project organised a pamper day for residents.
The purpose of the day was to find a way of engaging with residents who do not usually take part in activities.

A pamper session was about 45 minutes in length. Some people enjoyed a foot, hand or face massage, others had their nails painted or their feet soaked in bubbles. Some residents enjoyed all of these (including men!)

What residents said about the pamper day

  • “They won’t recognise me when I go back!” (male resident)
  • “There’s nothing wrong with my feet. It’s not raining!” (This comment made other residents chuckle!)
  • “You can relax and enjoy yourself. It’s something a bit different.”
  • “Thank you. This is something I’ve never done before.”
  • “It’s a long time since I’ve done anything like this.”
  • “I think I’m alright with you.” (said to a carer)

What staff said about the pamper day

  • “We don’t often get the time to do this sort of thing. Because they were so relaxed we could connect with them more.”
  • “It was nice that we were all working together.”
  • “It gave us some time to go over people’s pressure points, which we have to morning and night anyway.”
  • “I didn’t think she would enjoy it. But she really did!”
  • “It made me really relaxed as well!”

November 2011


Circles of support for people with dementia

When people develop dementia they often find their personal networks of support get smaller. Families and friends may be reluctant to help, frightened by the condition or unable to see how they could contribute.
As a result many people with dementia miss out on opportunities for support and advice and can become isolated, depressed and vulnerable to other health issues. People with dementia and their families tend to manage alone.

Circles of support is an established model of enabling older and disabled people to lead the lives they want to lead. This project is about seeing how it will work with people with dementia.

The person with dementia will be in the driving seat of key decisions about their support. Circles of support build upon people’s natural networks in their local communities including family members, neighbours, friends and volunteers, as well as paid staff. The aim is to provide shared support to help people carry on living in their local communities.

This project will work with local groups in four different areas to adapt and test the idea of circles of support for people living with dementia. Circles will be developed for 40 people living with dementia over three years. ‘Circles’ will improve awareness, understanding and confidence in enabling people to live well with dementia.

The project is funded by the Department of Health’s Innovation, Excellence and Service Development Fund and will be run by the National Development Team for Inclusion.
Go to the National Development Team for Inclusion website - www.ndti.org.uk

May 2011

Circles of Support for People with dementia logo Photo of June, Adriani and Jennie at the meeting

The first advisory group for this project was held in Salisbury on 27 July 2011.

The advisory group is made up of Rachael and Nada from Innovations in Dementia and staff from the National Development Team for Inclusion (NDTi), along with representatives from organisations who work in the four areas where the project will run: Devon, Dorset, Portsmouth and West London. But the most important people on the advisory group are people with dementia.

The group talked about lots of things, including:

  • Things that are important to us in our lives.
  • What Circles of Support are and projects that people at the NDTi had been involved in before.
  • How the advisory group will work.
  • What things help people with dementia to live a good life.
  • Who helps people with dementia to live a good life
  • Things that people with dementia would like to do, or wishes they have.
  • The next steps for the project in all four areas.

August 2011


Innovations in Dementia CIC, PO Box 616, Exeter, EX1 9JB
Telephone 01392 420076

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