Founded in 2016, this special interest group covers the UK. Its members all have a strong interest in influencing policy and rights issues at a national level (the group does not make policy for DEEP). The group currently meets in London.
Alzheimer's Society - involving people with dementia
Alzheimer’s Society involves people with dementia sharing their experiences and knowledge, and raising awareness of dementia at local and national levels through a wide range of activities including giving presentations, media work, influencing the Society’s work and national policy.
If you are interested in finding out how you can get involved contact Laura in the Engagement and Participation Team.
(Previously known as Friends of African/Caribbean Carers and Sufferers of Dementia (FACCSD)) Culture Dementia UK was founded in February 1998 and was set up to support carers and people living with of dementia among the African/Caribbean community.
The Camden Minds are a dementia Involvement Group based in the London Borough of Camden. Camden Minds members describe themselves as a “friendly bunch”. The group meet on a monthly basis in the Belsize Park area.
The aims of the Camden Minds are to:
Reduce the stigma of dementia
Have a say in services and policies relevant to us
Get peer support
The Camden Minds are currently supported by DEEP, Camden Carers Centre and Age UK Camden.
The Variety Group, West London
The Variety Group, based in West London, is a peer support and influencing group which aims to highlight the views of people who have a dementia to influence service-level and organizational planning.
The group meet on a quarterly basis to enable peer support and to discuss how national and local initiatives, such as dementia-friendly communities, can affect the day-to-day experience of living with a dementia.
The Variety Group is keen to work closely with other organisations and groups, such as the Peer Support Workers, to raise awareness and contribute to policy developments.
Healthy Living Club, Stockwell
The Healthy Living Club, based in Southeast London, is a self-directed community group promoting the wellbeing of its members —people with a dementia, their carers and friends. All members contribute to the functioning of the Club to the extent that they are able. The group meets weekly to engage in activities chosen to alleviate the symptoms of dementia and/or to help arrest or reverse cognitive decline. However, all members, including members who would be defined as volunteers at other settings, take part in all activities and enjoy them as much as everybody else.
The Healthy Living Club is currently supported by a two year grant from Guy’s and St Thomas’ Charity which is due to run out at the end of October. However, since achieving charitable status last autumn, the group secured several small grants that will cover the cost of some of the activities at the Club (exercise, music and art and crafts) for up to 12 months, and more applications are in the pipeline.
We meet once a week on Fridays (10 – 11.30 Cabin Lane Community Church). We chat, do quizzes, crafts and painting, drink tea and coffee, play games. We never do child activities…our members are treated as adults.
Shrewsbury DEEP Group
Dementia Voice, Worcestershire
Dementia Voice is a monthly group for younger people living with dementia (those diagnosed before the age of 65).
There is an opportunity to meet others, to share ideas on coping and to work together to consider small changes which may help others living with dementia at a younger age. We also have lots of fun and laughter.
To find out more please contact Rachael Hodgetts: email@example.com or call 01562 828894. Please click on the link below for more information:
Redditch and Bromsgrove ‘Friends Together’ are a proactive group of individuals who have a diagnosis of dementia who meet to support each other and find ways to improve their communities.
The ‘Friends Together’ group are interested in finding ways to improve services and attitudes, to make a better, fairer community for everyone living with a dementia in their local communities.
To achieve this aim, the Redditch and Bromsgrove ‘Freinds Together’ work together with MPs, local authorities, police, places of education, transport, businesses, groups and organisations…the whole community.
The group also feeds into the Redditch and Bromsgrove Dementia Action Alliance; some group members attend local alliance meetings which has had a big impact on what happens locally. The main purpose of the Redditch and Bromsgrove ‘Friends Together’ group is to build Redditch and Bromsgrove into a dementia friendly community.
To find out more about the ‘Friends Together’ group, please contact Janet Little on 01905 621 887 or 07833146207.
You can also contact Sam Wood on 01905 621 887 or 07850 722 622.
Dementia Action Forum
The Dementia Action Forum is a community voluntary group made up of people in Derby and South Derbyshire who are living with dementia (including family carers). The group believes that the person with dementia and their carer are a team and should be considered together. What affects one directly affects the well-being of the other.
The Forum gives people with dementia a unified and more effective voice. The group is keen to forge strong links with existing organisations and influential people in social and health care services within Derby, who recognize and acknowledge the benefits of an improved focus on dementia.
The Dementia Action Forum seeks to:
Gather views on issues and needs across the community of people living with dementia in Derby.
Identify examples of good practice and areas which need improvement .
Discussing and representing the Forum’s position with commissioners and outside agencies.
Providing a position on issues raised in the group to best represent people in the community who are living with dementia.
The group is also a Reference Group for the Clinical Commissioning Group (CCG) in Derby and was involved with preparing key documents including the Dementia Strategy and Carers’ Strategy. The Forum has influenced key developments, such as the Dementia Friendly Communities initiative and the Books on Prescription project and other reminiscence items.
The Beth Johnson Foundation Group, Stoke-on-Trent
The Beth Johnson Foundation Group ensures that the voices of people who have a diagnosis of dementia are actively heard in order to influence all aspects of dementia-related work. The group, based in Stoke-on-Trent, aims to influence professionals from a grassroots perspective by raising further awareness about living positively with a dementia.
Beth Johnson Foundation Group members support each other through sharing experiences of how they are living with dementia in a meaningful manner. At present, the group is made up of four members–Mac, Sue, Doreen and Michael, who meet on a bi-monthly basis to talk about the issues they have come across since living with dementia. The group previously had two additional members whose dementia has now advanced so that they felt unable to continue attending the meetings.
The Beth Johnson Foundation Group hopes to be able to continue meeting and are inviting new members who are living with a dementia to join.
The LINK Group, Worcester
The LINK Group contributes to the work of the Association of Dementia Studies (ADS) at the University of Worcester. The group influences the work of the ADS by:
Assisting in the design and development of new courses and teaching materials.
Contributing to the delivery of teaching and training and the University of Worcester and across the range of education the ADS provides.
Contributing to the development, design and delivery of research programmes.
Contributing to the design and delivery of other initiatives that are relevant to the group’s mission statement. For example, influencing conferences and recruitment of staff and students.
The LINK Group meet on a quarterly basis but it’s work progresses all year round.
Our Voice Matters, Hartlepool
Our Voice Matters currently has 6 members, all of whom are living with dementia, and meets the second Monday of the month 2-3.30 at The Bridge, Gemini Centre, Villiers Street, Hartlepool TS24 7SA (The Bridge 01429 868587).
The group has been involved in initiatives such as:
Planning dementia awareness week 2016
Memory Walk 2015
Working towards being a Dementia Friendly Hartlepool
Advising local supermarkets regarding being dementia friendly
Advising local council on website information
Planning, participating in and recording a DVD promoting the ‘My Future Wellbeing’ tool.
Dementia Voices Stockton
Dementia Voices Stockton is an advocacy project for people with dementia and their carers. We have an advisory group, coffee mornings, advocacy drop ins, volunteer groups and many other exciting opportunities. The main aim is to support those with dementia and their carers by listening and hearing them and in turn influencing service provision and initiating improvements.
Salford Dementia Champions Group
The Salford Dementia Champions Group formed in January 2013 to help Salford City Council and the Clinical Commissioning Group improve the delivery of dementia services and support in Salford for those with dementia and their carers.
They meet every second Tuesday 10 – 12.30 at Humphrey Booth Resource Centre, Swinton.
Fabulous Forgetful Friends, Manchester
Fabulous Forgetful Friends is a new Manchester based group for people with dementia and their carers.
The Liverpool Service User Reference Forum (SURF)
SURF is a group of people who represent the views of people living with dementia, their carers & families across the City of Liverpool.
Our vision is to improve the quality of life for people living with dementia, their carers and families and also to make Liverpool a dementia friendly city.
Chinese Wellbeing on behalf of Liverpool DAA Diversity Sub Group
Chinese Wellbeing are a small charity working mainly with the Chinese community in Liverpool.
Weekend Day Centre for Dementia Care (Stockport)
The Weekend Day Centre for Dementia Care is open every weekend and bank holiday throughout the year (except Christmas Day). The Centre provides day care for up to 40 clients each day; carers are welcome to attend, or to have a break at home for the day.
The Weekend Day Centre offers a wide range of activities to suit all tastes and abilities for people who live with a dementia. Activities include crafts, quizzes, bingo, games and gardening. The Centre provides external entertainment every afternoon from singers and dancers to pantomimes. The Centre celebrates all personal, national and important events including birthdays, anniversaries, mothers’ day and Valentine’s day.
The Weekend Day Centre for Dementia Care are continuously fundraising throughout the year to be able to provide the services and entertainment to clients. The Centre raises awareness at networking evenings and meetings at other groups and carers’ fairs with other organisations. The Centre use badges, key rings and brochures to promote the service for people living with a dementia.
The Weekend Day Centre for Dementia Care is a registered charity: 0126520
Oldham Dementia Carers Group: Springboard
Springboard’s group objectives are to provide a safe, welcoming peer group to support people and their families, friends and carers who are suffering from all types of dementia and its effects within the Metropolitan Borough of Oldham and it’s surrounding areas (the area of benefit).
Springboard provide emotional and practical support, advice, education and try to raise public awareness of memory problems. Group members aim to deliver facilities and social activities to fill the recreation and leisure time of people suffering from all types of dementia and their families, friends and carers in the interests of social welfare and with the object of improving their quality of life. The group also aims to give a voice to people with a diagnosis of dementia.
Charity No. 1156480
Lancashire Dementia Voices
Lancashire Dementia Voices have been running for 2 years and have made great strides in influencing dementia services across Lancashire. Its primary aim was to campaign for post diagnostic support following formal diagnosis, and to hold to account services across the county responsible for providing that support.
It meets monthly at a new central location in Preston (details on its website) and hopes to run a new “Dementia Hub” informal drop in sessions in 2016 bringing together as many appropriate service providers in to one place and offer visitors one to one informal discussions with members who have dementia or their carers (see latest news).
It doesn’t have any paid employees or offices, but runs its entire operation via its website.
The group is independent and relies on donations and some funding/grants resource to run its group.
Is has many partnerships with NHS service providers and Strategic Clinical Networks in order to influence directly.
Open Doors Project, Salford
The Open Doors Project employs a person with dementia and leads on the development of a range ofinitiatives across Salford, including a dementia cafe providing post-diagnostic education and support (in conjunction with memory services), a friendship and support network for individuals newly diagnosed, participates in steering groups in relation to key service redesign, provides education to professionals in relation to dementia, and supports and disseminates research and development in dementia in conjunction with Manchester University.
EDUCATE (Early Dementia Users Co-operative Aiming To Educate)
EDUCATE looks to give people living in the Stockport area with dementia a voice through involvement in training, or speaking to others about their experiences of having dementia.
They have a website at: www.educatestockport.org.uk
Abbeyfield is a care home group of people with dementia.
The group meet weekly and are looking to give a voice to people with dementia.
The SUNshiners group is a service user network group for people living with dementia from Dover, Deal and Shepway. They come together once a month to discuss local and national issues about dementia. The meeting follows a business style with an agenda and a tea break in the middle allowing members to socialise. The group is run by people with dementia and supported by clinical psychologists and psychology students.
The main aims of the group are to:
Improve attitudes to dementia within the local and national community
Increase our network’s influences by linking with other dementia networks
De-Active is a group of eight couples living in and around Horsham, in West Sussex. All of the men have dementia (Alzheimer’s, FTD, Lewy Bodies), with ages ranging from 57 to 70. De-Active’s activities have included days out, theatre trips, weekend breaks, walks, badminton, table tennis, archery, bowls and much more. The group believe it is possible to have good times whilst living with dementia by having good friends who are in the same position to support one another.
A sports club, called Sporting Moments, has evolved from De-Active’s badminton sessions. Sporting Moments takes place once a week at a local leisure centre. The Sporting Moments club is funded by West Sussex County Council and Know Dementia and is open to anyone living with dementia in the local community, and their supporters, to come along and have some fun.
De-Active have also been involved in a range of influencing activities, including:
Meeting with two of the commissioners from West Sussex Community Care to discuss the new 5-year dementia strategy. De-Active highlighted what could be done to increase services for younger people with dementia and how to support carers more.
Two of De-Active’s members have taken part in workshops in the 2014 Dementia Showcase in Brighton.
The women from De-Active will soon be meeting with a local Police Community Support Officer to raise awareness of dementia.
De-Active aims to continue raising awareness and knowledge of dementia among professionals and the public by campaigning for more and better services across West Sussex. De-Active members are also keen to link with other groups nationally. Above all, the De-Active group aims to continue supporting each other and to have fun!
Memorybilia, West Kent
Many organisations, including the Kent and Medway NHS and Social Care Partnership Trust and Alzheimer’s Society, are trying to improve the quality of service they offer to people with dementia.
It’s vital that the opinions of people living with a diagnosis are heard by those who make decisions. This group aims to help raise the standards of services across Kent.
Through the network we aim to:
Improve attitudes to dementia by
Helping create dementia-friendly communities
Raising public awareness
Reducing negative stereotypes of dementia
Increase our network’s influence by
Linking with other Dementia Networks nationally
Improve the NHS by
Assisting with staff training and interviews
Evaluating Memory Services
Commenting on plans for future service developments
Hope & Doodle Advocacy Group, Lewisham
The Hope & Doodle Advocacy Group, supported by Lewisham MindCare, is part of Bromley and Lewisham Mind. The group meets on a monthly basis in Ladywell and is open to anyone known to the Lewisham MindCare service.
The group has a core membership of 15 people, all in the early stages of a dementia diagnosis. Monthly meetings enable members to support one another, share experiences and access information that is important to them. The Hope & Doodle Advocacy Group are passionate about dispelling dementia myths and raising awareness.
Young Dementia UK -- Like Minds, Oxfordshire
Like Minds provide a space for people with young onset dementia who are interested in coming together, to meet each other, to make friends and to share time and ideas.
Like Minds also offers a voice to people with young onset dementia with an opportunity to comment on or put forward suggestions for services or developments or to contribute to relevant research or conferences.
Each Like Minds meet on a monthly basis in a local café or pub.
Like Minds Oxford meetings run on the 1st Wednesday of every month. Please contact Deborah on 07703 047 295.
Like Minds Banbury meet on the 3rd Monday of every month. Please contact Paula on 01608 737 796
Like Minds Abingdon meets on the 3rd Tuesday of every month. Please contact Mandy on 01235 821874
Like Minds Witney meets on the 2nd Friday of every month. Please contact Liz on 07503 198720
Inspired by the success of other dementia involvement groups, Clear Voices is a social support group in Bedford which meets to discuss issues around providing a safe environment, feelings about living with dementia and to engage in guided reminiscence groups.
Clear Voices have successfully secured funding to continue working for a further year and to expand into a second group. Recent activities include supporting a hospital’s refurbishment to be more dementia-friendly, as well as inviting a local MP to the group which raised awareness and offered education about what it means to live with a dementia.
To find out more about Clear Voices, please contact Margaret-Anne Tibbs.
It’s vital that the opinions of people living with a diagnosis are heard by those who make decisions. This group aims to help raise the standards of services across Kent. This group also functions as a network, where people can meet others with a similar diagnosis and get to know them better.
The group aims to improve attitudes to the NHS by
Helping create dementia-friendly communities
Raising public awareness
Reducing negative stereotypes of dementia
We want to increase our network’s influence by
Linking with other Dementia Networks nationally
Supporting the Service User Envoy in Kent
And improve the NHS by
Assisting with staff training and interviews
Evaluating Memory Services
Commenting on plans for future service developments
Oxfordshire Dementia Empowerment Group
The group makes it possible for people whose voices are seldom heard to contribute to shaping affairs that affect us.
We are part of the SCIE co-production network and we participate in creating solutions and services that meet our needs.
We are an overtly campaigning and influencing group attempting to build capacity to ensure that there are no decisions about us without us. The group is run by and for people living with dementia.
The group offers:
Discussion and involvement in the Dementia Awareness Campaign
An opportunity to become actively involved in shaping dementia services
A chance to become involved with the Dementia Monologues
A chance to make friends
A chance to enjoy relax, yourself and have fun
West of Berkshire Empowerment Group
Our empowerment group encourages people with dementia to speak out about issues that affect their lives. The group contribute to local consultations and invite speakers from local health and social care, local businesses and other groups with an interest in dementia. The group meets once a month.
Hope Group, Brighton
HOPE is a group of people in Brighton who are living with dementia and who aim to increase the knowledge of all staff and students in health and social care by sharing experiences of living with dementia.
The HOPE Group aims to improve the situation of people with dementia and their carers by raising awareness through training and work in partnership with professionals to promote better working relationships for the benefit of professionals and people living with dementia.
Swindon YOLO (You Only Live Once)
We are a group of people living with dementia or caring for people with dementia. Our aim is to improve the lives of people living with dementia and those who care for them by using our life skills and experience of memory problems to enhance lives and reduce stigma.
We hope to develop local environments, attitudes, information and services for people living with dementia in Swindon and make others more aware of dementia and memory loss.
Purple Angel Leadership Group
The Purple Angel Leadership Group currently has six members and includes individuals who are living with dementia, family carers and a Dementia Lead Matron from a local hospital.
The group work very closely with all dementia organisations and health organisations by way of helping them create dementia friendly documents. The Leadership group also offer advice on how people living with dementia would like to see changes in public opinion.
The Laverstock Memory Support Group, Salisbury
The Laverstock Support Group is an experiential memory support group for people living with dementia. The group is funded by Wiltshire Council and meets in Laverstock, Salisbury.
Group meetings enable members of the group to talk about their experiences and their special interests. They share ways they have found of coping with dementia. In the group, people realise that they are not alone and others do understand.
Group meetings are led by Elizabeth Bartlett, who has over 30 years of experience of working with people who have a dementia. The Laverstock Support Group meet in Elizabeth’s own home, offering a relaxed and friendly atmosphere. There is a great deal of laughter as members drink coffee and eat biscuits.
While the Laverstock Support Group is meeting, many of the family carers meet as a peer support group at the other end of the house. Carers can share experiences of looking after someone with dementia. Carers often describe the groups as a “lifeline”–as a place where they can meet others who really understand.
Cornwall and Isles of Scilly Leadership group
The Cornwall and Isles of Scilly Leadership group commenced in July 2012. It is the first User Involvement group for people living with dementia in Cornwall and Isles of Scilly. Consisting of eight members, the group’s monthly meetings provide a forum for direct communication with the commisisoners and clinicians to guide, inform and influence local service developments and the implementation of the National Dementia Strategy.
Torbay Dementia Leadership Group
This is an Empowerment Group of people with an early diagnosis of dementia which provides some peer support, discusses matters and services concerning people with dementia, and is active in influencing local services and organisations.
Forget Me Not, Swindon
Forget Me Not is a group in Swindon, made up of people with dementia under the age of 65 who come together for peer support and social activities as well as raising awareness about dementia with professionals and in their communities.
DEEP Vibes, Scarborough
Women with Dementia Club, York
The Women with Dementia Club meets monthly, usually on the third Wednesday of the month from 11am to 2pm.
Our group grew out of a study about women’s experience of dementia. Some of our members also belong to York Minds and Voices.
Minds and Voices began in September 2014 and membership has steadily increased month by month as we become more established and recognised by local services.
Our name was agreed after several months meeting and discovering what the group is all about. ‘Minds and Voices, opening minds and moving forward’ is exactly what we wanted to say.
We all feel we still have a great deal to contribute and to say and are keen to change people’s perceptions of people with dementia by our level of engagement and influence locally.
In our short existence we have gained a positive reputation amongst Health and Social services who recognise the importance of being able to get together with peers; to share experiences; and to consult locally too.
We have been involved with:
York City Council’s proposed new signage plan for visitors and tourists, ensuring that maps are much less cluttered and easier to understand for everybody.
Psychology research students and their consultant, looking into humour and living well.
A small team hoping to set up Mindfulness sessions for people with dementia locally.
Carrying out a dementia friendly audit of the building and environment of an active local Church.
Joseph Rowntree Foundation’s York Committee panel which considers funding applications for local dementia specific projects.
The evaluation of the Dementia Without Walls project here in York.
We are very much on the way to opening minds and moving forward.
Face it Together (FIT), Bradford
The Face it Together (Alzheimer’s Society) group, based in Bradford, are actively involved in informing the Dementia Friendly Community work in the Bradford area.
The group meet every month to:
Discuss the impact of dementia on their lives and support each other.
Take part in awareness-raising campaigns.
Think about campaigns that the group want to drive forward.
So far, the group have focused on making outdoor spaces dementia friendly as several group members enjoy walking. The Face it Together group have been planning a trip to St. Ives (near Bingley). The Council and Friends of St. Ives are interested in receiving feedback.
Two members of Face it Together attended the Leeds Dementia Friendly Communities Conference and the Dementia Friendly Awards event in London. Two group members have also been involved in interviewing new members of staff–one staff member for the Bradford Dementia Action Alliance and one for a new Dementia Lead post with the local NHS Trust.
Sheffield Dementia Involvement Group (SHINDIG)
SHINDIG is a city-wide forum that meets 4 times a year and aims to provide opportunities for people living with dementia in Sheffield (and their family carers) to share ideas, views and opinions on local services and developments. The group name emerged because of the lively, sociable and fun atmosphere that is created and the logo depicts the commonly heard term of ‘all being in the same boat’.
SHINDIG is jointly organised by Sheffield Alzheimer’s Society and Sheffield Health and Social Care NHS Foundation Trust. Membership is not fixed and the group is attended by about 18 people with dementia, 12 family carers and 10 staff from voluntary, health, social care and academic organisations in Sheffield.
Group meeting facilitate conversations about:
Experience of GP services
Experiences and tips on living with dementia
Experience of receiving a diagnosis and memory services
Ways people with dementia can influence ‘Dementia Friendly Communities’.
Having a go at using iPads and technology to connect and have fun.
Staff help facilitate and support conversations where necessary, whilst listening and committing to take back learning to their organisation. SHINDIG aims, over time, to engage people living with dementia in taking more of a role in setting the agenda and organisation.
South Yorkshire Dementia Disorders Research Advisory Group (SYDEM RAG)
The ‘South Yorkshire Dementia Disorders Research Advisory Group’ (SYDEM RAG) is a committee created to bring together people with dementia, carers and members of the public from the local area of Yorkshire. The Advisory Group meets face-to-face on a quarterly basis and also has monthly contact via email and post to review projects and documents.
The South Yorkshire Advisory Group offers assistance for all dementia researchers throughout the South Yorkshire region to ensure that the views and needs of people with dementia and carers are considered within dementia research. Members of the Advisory Group have assisted researchers with:
Promoting improved knowledge, based on lived experiences of dementia and individual contributions.
Identifying and prioritizing research topics that are relevant to people with dementia.
Offering suggestions to improve the recruitment of people with dementia in research participation, as well as identifying any barriers to involvement.
Identifying improved research measures
Feedback and comments on Patient Information Sheets
Writing lay-summaries for research proposals and Research Ethics Committees.
By ensuring that people with dementia are effectively involved in all stages of dementia research, the South Yorkshire Dementia Disorders Research Advisory Group enables people with dementia, and carers, to have a more authoritative voice. This can also contribute towards building public credibility and trust in clinical research and can improve the quality of external evaluations.
Doncaster Dementia Forum
The Doncaster Dementia Forum meets on the second Wednesday of each month.
The Forum lobbies and influences local service development and holds the local Older People’s Mental Strategy Group to account.
The Irish Dementia Working Group is a national advocacy group which has been involved in development and influencing work since February 2013. The working group is resourced and supported by the Advocacy and Public Affairs team at The Alzheimer Society of Ireland.
The purpose of the working group is to explore ways to promote and encourage the direct involvement of people with dementia in the work of the organisation and to ensure that the voice of people with dementia influences the public policy that impacts on their lives.
The main aims of the Working Group are to:
Ensure that the voice of people with dementia influences policy.
Support discussion and debate around important issues for people living with dementia.
Promote the direct involvement of people living with dementia in decisions and developments pertaining to them.
Facilitating mutual peer support, enabling group members in maintaining social circles and hobbies.
The working group has been involved in a wide range of activities and influencing work, including:
Actively influencing the development of the National Dementia Strategy in Ireland, ensuring that the voice of the person with dementia is central within policy developments.
Using various media, such as videos, radio and press to influence opinions and policy and to raise awareness.
Participation in research and consultations for a range of academic and government agencies.
Drafting guidelines for the homes of people who live with dementia, offering experiences and challenges of living with dementia, as well as how people with dementia can overcome these challenges.
The BDWG meets monthly to offer a voice for people with dementia on the issues and services that affect them in the Scottish Borders.
Dementia Alumni, Glasgow
Arora Dementia Friendly Community Project, An Lanntair
Arora Dementia Friendly Community Project at An Lanntair, Stornoway in the Western Isles welcomes people living with dementia, their carers and professionals to join together through DEEP locally, to improve local services, connecgt and socialise with each other and to have a stronger and more powerful voice to drive forward change.
User and Carer Involvement (UCI), Dumfries
UCI is an independent charity. Our DEEP work is intended to facilitate the involvement of people living with dementia in care and clinical settings in influencing service delivery and policy.
We also work with Creating Dementia Friendly Communities.
Dementia Voices, East Dunbartonshire
Dementia Voices East Dunbartonshire is supported by Ceartas, an Independent Advocacy Project.
It believes that people with dementia should have the opportunity to have their voices heard, feel part of their community, have the opportunity to influence local/national policy and opportunities for peer support.
Highland Dementia Working Group
The Highland Dementia Working Group is a branch of the Scottish Dementia Working Group (SDWG). It is a small friendly group of people with a diagnosis of dementia who meet every six weeks in Inverness.
The group members learn from each other and share support and experiences of living with dementia. The group also works to raise awareness and improve dementia services. Each person’s experience is important in trying to influence the provision of appropriate services.
Now is a good time to be speaking out – people really do want to listen! NHS, Local Authorities, Alzheimer Scotland and others have a duty to consult with the people using their services and to hear their views. They are each looking at ways to involve people with dementia in policy development and planning of services.
Together we can try to influence:
People who plan and deliver services
Attitudes about people with dementia.
“Ensure your voice is heard directly – it is the voice of experience.”
Scottish Dementia Working Group (SDWG)
The Scottish Dementia Working Group (SDWG) is a national campaigning group, run by people with dementia. We are the independent voice of people with dementia within Alzheimer Scotland. The Working Group campaigns to improve services for people with dementia and to improve attitudes towards people with dementia. Membership is open to people with dementia.
Meetings are held in Glasgow and Dundee throughout the year and we discuss current issues for people with dementia. We participate in lots of local activities as well as Government initiatives, and Alzheimer Scotland events to ensure that the voice of people with dementia is heard where it needs to be heard.
The Positive Dementia Group, based in Aberdeen, is involved in awareness raising through giving talks to students, chaplains, socialworkers etc. They are also involved in media work (e.g. radio interviews, TV, newspaper articles& ‘Through Our Eyes’ DVD). Some members have spoken at conferences about their experience.
They have also been involved in consultation by the local authority/NHS to share their experiences and comments for influencing policies/strategies, including more recently the Scottish Dementia Strategy. Some members of the Positive Dementia Group are also involved in research.
The Memory Jar meets on a monthly basis for people living with dementia. We provide opportunities to talk together, make new friends and engage in a range of activities in a secure and pleasant environment with people who understand.
Memoria is a creative and supportive group for people living with dementia, family members and professional carers.
The group share their experience of living with dementia for audiences, theatres, conferences and community sharings.
Fuse & Muse, Swansea
The Old Brewery, Shotton
Tea & Chat, Brecon
Ty Golau, Kidwelly and Llanelli
Ty Golau (House of Light) is a health and wellbeing group for people with memory problems, Alzheimer’s/dementia type illnesses, their carers and professionals.
Ty Golau is not just a social group! A group with activities which are specifically aimed at stimulating the brain in an appropriate, non-threatening, fun way. Reminiscence therapy is a large part of our sessions.
Ty Golau meet in Kidwelly and Llanelli.
Feelgood Friday, Llandysul
Me, Myself & I, Briton Ferry
Halcyon Quest, Rhuddlan
Halcyon Quest is a social group for people with memory problems or dementia diagnosis (and their families), that meets on the last Tuesday of every month.
The Kymin Group, Cardiff (formerly NEXUS)
The Kymin Group involves those who use older people’s mental health services and their carers to have say in the way that those services are planned, run and developed.
Involvement by service users and carers means services become more suited to the needs of those who use them and, by implication, make them more successful. It also shows their views are important and are acted upon. We are also interested in what past carers have to say.
Benefits include: making a difference for yourself and others in the future, gaining an understanding of services, building confidence in speaking out, giving something back, getting a sense of ‘camaraderie’ and making new friends with other service users and carers.
The Kymin Group is here to help co-ordinate and support you to do this. Whatever you can do, big or small, can be used.