Dementia - agencies and networks

You can find here details of key agencies and networks across the UK which provide information about dementia and dementia care. See also Supporting carers for further organisations which offer information and support to people with dementia and their carers.

In other sections of this website you can also:

The agencies and networks are arranged by country.

UK wide

Dementia UK
Dementia UK is a national charity, committed to improving quality of life for all people affected by dementia. A key part of their work is the promotion and development of Admiral Nursing. Admiral nurses help support the needs of family carers and people with dementia. The charity has also established ‘Uniting Carers’ a national network of carers, family members and friends of people with dementia.

Frontotemporal Dementia Support Group (FTDSG) 
This group (formerly the Pick's Disease Support Group) is particularly directed towards carers who are coping with behavioural changes in a partner, family member or friend as a result of frontotemporal dementia. The group aims to provide information and support to carers. It meets several times a year in the United Kingdom and has an annual seminar open to professionals and carers.

National Association for Providers of Activities for Older People (NAPA)
This charity is dedicated to increasing the profile and understanding of the activity needs for older people, and equipping staff with the skills to enable older people to enjoy a range of activity whilst living in care setting.

National Council for Palliative Care
This is the umbrella organisation for all those who are involved in providing, commissioning and using palliative care and hospice services in England, Wales & Northern Ireland.

England

All-Party Parliamentary Group for Dementia (APPG)
This is a cross party group made up of MPs and Peers with an interest in dementia. Its aim is to raise awareness of dementia amongst parliamentarians and to influence legislation and policy making in order to improve the lives of people with dementia and their carers. The Group meets several times a year and uses each meeting to focus on specific issues affecting people with dementia.  It also conducts an annual inquiry on a specific topic.

Alzheimer’s Society
The Alzheimer’s Society is the leading care and research charity for people with Alzheimer’s disease and other forms of dementia, their families and carers. The Society has expertise in information and education, and produces fact sheets and other publications. They also have branches which run local services.

Dementia Action Alliance
This Alliance is made up of over 40 organisations who have signed up to the National Dementia Declaration and are committed to transforming the quality of life of people living with dementia in the UK and the millions of people who care for them. Each signatory has provided an action plan. The Royal College of Nursing is one of the signatories. For more information about the alliance see: Dementia Action Alliance work.

Dementia Services Development Centre (DSDC) London office
The Centre provides dementia education and training, consultancy and research services. It is based in Stirling and also has a London office. The specialist Library and Information Service at the Centre has one of the largest UK collections of dementia material. Services include an online catalogue with dynamic links to current library holdings on a range of topics, a blog which has answers to recent enquiries as well as loan and document supply services.  

Dementia Services Development Centre South East (DSDCse)
This centre serves the counties of Kent, Sussex and Surrey and is a partnership between Canterbury Christ Church University, Avante Partnership and Dementia UK, serving the counties of Kent, Sussex and Surrey. The aim of the Centre is to support dementia services to plan, deliver, or improve the quality of services for older people with dementia, curriculum design and development, teaching and training.

Dementia UK West Midlands
Dementia UK is working in the West Midlands, supporting existing Admiral Nursing services and negotiating with health and social care commissioners and providers with the aim of expanding provision across the region. It  continues to carry on its Dementia Services Development Centre traditions and contributes to the work of the DSDC network.

Dementia web
This web portal is an all-age dementia information resource for the UK. It aims to help people with dementia, their carers and health professionals find empowering information about dementia and the support and care services available to them in the UK.

Lewy Body Society
This charity's mission is to raise awareness of Dementia with Lewy bodies (DLB) for the general public and educate those in the medical profession and decision making positions about all aspects of the disease and to support research into the disease.

Trent Dementia Services Development Centre
This centre operates mainly in the East Midlands and is a not-for-profit organisation working to help the statutory, voluntary and independent sectors to improve the care they provide for people with dementia.

Northern Ireland

Dementia Services Development Centre Northern Ireland office
The Centre, based in Stirling, provides a comprehensive range of dementia education, training, consultancy, information and research services and has an office in Northern Ireland. The specialist Library and Information Service at the Centre in Scotland has one of the largest UK collections of dementia material and the catalogue is available online. The Belfast office library carries a stock of core texts on many aspects of dementia care.

Reminiscence Network Northern Ireland
This network aims to assist people with dementia to remember their past as a way of promoting communication and building relationships in the present. It also aims to advance the education and training of people in reminiscence work, life review and related activities and to promote the development of reminiscence work throughout Northern Ireland.

Scotland

Alzheimer Scotland
Alzheimer Scotland is the leading dementia organisation in Scotland. They campaign for the rights of people with dementia and their families and provide an extensive range of innovative and personalised support services. This includes a 24 hour Dementia helpline.

Dementia Services Development Centre DSDC)
This Centre, based at the University of Stirling, provides dementia education and training, consultancy and research services. It includes the purpose-built Iris Murdoch Building which models dementia friendly design. The specialist Library and Information Service at the Centre has one of the largest UK collections of dementia material. Services include an online catalogue, dynamic links to current library holdings on a range of topics, a blog which has answers to recent enquiries as well as loan and document supply services. 

NHS Tayside Centre for Managed Clinical/Care Networks: Managed Care Network for Dementia
Managed Clinical / Care Networks (MCNs) “are groups of professionals from health, local authority and voluntary groups and patient representatives who work together to agree the best ways to care for patients across several health care services. They aim to make sure that patients receive the same high standard of care wherever they may live”.  This page provides contact details and background to the Tayside Managed Care Network for Dementia and describe the priorities identified. An introduction to MCNs and what they are is at NHS Tayside Centre for MCNs. See also the nationwide page for NHSScotland Managed Clinical Networks.

Scottish Dementia Working Group
This is an independent group run by people with dementia and membership is open to people with dementia. The Working Group campaigns to improve services for people with dementia and to improve attitudes towards people with dementia.
A paper exploring the formation, development, challenges and benefits of nearly ten years of the Group through the views and experiences of people living with dementia is published as part of Joseph Rowntree Foundation programme 'A Better Life'. The programme aims to increase understanding of what can help people with high support needs now and in the future, and here listens to perspectives of some of the more marginalised groups - see Perspectives on ageing with dementia.

Wales

All Wales Mental Health Promotion Network
This network provides information on public mental health, the Network (an initiative to help improve the mental health of the population), useful links, quarterly newsletters and events information. Information on Public Health Wales Good Practice Scheme and the downloadable resources database is also available.

Dementia Services Development Centre Wales
This centre is a partnership between Bangor University and the Service Development Team (EMI) in Cardiff. As part of the DSDC Network, DSDC Wales ensures that initiatives and good practice in Wales are disseminated to the rest of the UK and vice versa.

International

Dementia Advocacy and Support Network International (DASNI)
This is a worldwide organisation run by and for those diagnosed with dementia. DASNI activities currently include an internet-based support group for people with various dementias and those involved with their well-being, and an email community with twice-daily web chats in a chat room to help ease the isolation of dementia and educate participants about living with their diseases.