Dementia Gateway: Useful links

Click on a heading to view the resources.

• Assistive technology and dementiaOpen

  AT Dementia

  This website brings together information about assistive technology that has the potential to support the independence and leisure opportunities of people with dementia. The site includes a searchable database of products and advice on how to obtain assistive technologies and telecare.

  Main website link

  At home with AT (Assistive Technology): an evaluation of the practical and ethical implications of assistive technology and devices to support people with dementia and their carers

  This 2004 project by Dementia Voice explored the potential of existing low-key devices that can be used to support people with dementia and their carers in their own homes. All aspects of choosing, installing, using and maintaining equipment that is currently available are investigated.

  Download the PDF

  Disability Living Foundation

  This is the largest charity providing free and independent advice about aids and assistive technology for people with disabilities, including people with dementia. The DLF produces information sheets, runs a telephone helpline, and maintains a website which includes a searchable database of products with descriptions and advice about how to obtain the item.

  Main website link

  Telecare and dementia

  This 2010 report from the Dementia Services Development Centre at the University of Stirling explores how telecare can contribute to the support, protection and quality of life of people with dementia and how it can support carers. The book is aimed at care and support staff and their managers, telecare service managers and development staff.

  Purchase the book

  Telecare LIN

  One of the Department of Health's national Care Networks, the Telecare Learning and Improvement Network (LIN), supports the introduction of telecare and telehealth to housing, health and social care services for older and vulnerable people, including people with dementia. The network produces a regular newsletter, hosts events and also oversees the Telecare LIN website, which contains information about telecare, a service directory of telecare providers, case studies, performance information and reports.

  The Telecare LIN published Dementia and telecare in 2008:a briefing addressing a range of issues including barriers, ethical and consent issues, and workforce issues for telecare and dementia.

  Main website link

• DiagnosisOpen

  Alzheimers Society

  Useful resources from the Alzheimers Society on diagnosis.

  Main resource link

• Ethnicity and dementia

  Open

  Assessment guide on dementia

  This is a 2004 publication from the Policy Research Institute on Ageing and Ethnicity, which also conducted the CNEOPSA project (Care Needs of Ethnic Older People Suffering from Alzheimer's) in the late 1990s.

  Main website link

  Bringing dementia out of the shadows for BME elders

  This 2009 publication reports on the work of the Ethnic Minorities Dementia Advocacy Project (EMDAP), run by Westminster Advocacy Service for Senior Residents and the Dementia Advocacy Network to raise awareness of dementia among ethnic minority communities, and to support the development of advocacy services for people with dementia from ethnic minority groups.

  Download publication

  Dementia, ethnicity and culture

  This is a briefing on the findings of a seminar held by the Mental Health Foundation in 2003 to explore the research and service development challenges relating to ethnic minority elders with dementia.

  Download the PDF

  Dementia UK

  This report produced for the Alzheimer's Society in 2007 provides the most up-to-date evaluation of the numbers of people with dementia in the UK, both current and projected, including numbers of people with dementia from black and ethnic minority communities.

  Main website link

  My name is not dementia

  In this 2010 report, the Alzheimer's Society and Mental Health Foundation joined forces to capture the views of people with dementia on quality of life, including indicators of what it looks like, and how to measure and promote it. A particular focus of the research was on the views of people with dementia from black and minority ethnic communities.

  Main website link

  Serving the needs of marginalised groups in dementia care: younger people and minority ethnic groups

  This 2002 research project involved the University of the West of England, Bristol and Dementia Voice, the Dementia Services Development Centre for South West England. The project's report highlights the needs of marginalised groups in dementia care and recommends ways of responding to their needs appropriately and effectively.

  Download the PDF

  The Mental Capacity Act: some implications for black and minority ethnic elders

  This article addresses the implications of the Mental Capacity Act for older people from black and minority ethnic communities and first appeared in Age and Ageing in 2008 (vol 37, pp 242–243). You can view it online.

  Download the PDF

  Psychiatric services for Black and minority ethnic older people

  This 2009 report from the Royal College of Psychiatrists says that the process of developing and improving psychiatric services for black and minority ethnic older people has been slow, with only a few examples of good practice since the RCP previously reported on this in 2001. The report includes figures on prevalence and reports on studies into dementia awareness among black and minority ethnic communities.

  Main website link

• Financial and legalOpen

  Alzheimers Society

  Information about legal and financial affairs, benefits and council tax and how this relates to dementia.

  Main resource link

• Find out more about dementiaOpen

  Age UK

  Age UK, the name for the newly joined Age Concern and Help the Aged, is England's largest organisation working with and for older people. It provides information and advice on a vast range of topics, some of which relate to dementia, including care and support, end of life care, benefits and health. The telephone information helpline is open seven days a week, and you can download a range of information guides and factsheets for free, including for example: 1. How to find a care home and 2. Care home checklist.

  Main website link

  Alzheimer's Research Trust

  The Alzheimer's Research Trust (ART) is the UK's largest research charity for dementia. ART's website also provides information on dementia for the general public and professionals, for example information on causes, symptoms, and the treatments available.

  Main website link

  Alzheimer's Society

  Alzheimer's Society is the leading care and research charity campaigning for people with dementia and those who care for them. In addition to its network of local branches, the society also runs an information helpline, produces a wide range of publications (including over 80 free factsheets on all aspects of dementia), and hosts a range of web-based forums. The London headquarters of the Alzheimer's Society hosts the Dementia Knowledge Centre, a library and information service for professionals and others with an interest in dementia care and research. Visitors are welcome by appointment.

  Main website link

  Dementia UK

  As well as producing web-based information and factsheets, the charity Dementia UK runs a telephone and email helpline for anyone affected by dementia, including professionals, known as Admiral Nursing Direct. The helpline is staffed by specialist mental health nurses, known as Admiral Nurses, who work to support the families and carers of people with dementia. The service offers information, practical advice and emotional support. You can contact the helpline by telephone or email. Dementia UK also runs an extensive training programme for those who work with people with dementia.

  Main website link

  Mental Health Foundation

  The Mental Health Foundation (MHF) is a major UK charity that provides information, carries out research and campaigns and works to improve services for anyone affected by mental health problems. The website has a section, Mental Health A-Z, which includes information and a range of resources on dementia.

  In 2005, the MHF published a booklet, The milk's in the oven, which explains dementia to children and young people, and has exercises that are suitable for use in a classroom situation.

  Main website link

  Mind

  Mind, a leading mental health charity in England and Wales, offers a range of services at a local and national level, including information and advice. Its guide, Understanding dementia was reissued in 2008 and includes information about what dementia is, what treatments are available, diagnosis and what help people with dementia need, useful organisations and further reading.

  Main website link

  NHS Choices

  This NHS website provides information on dementia, knowing the symptoms, being diagnosed, getting treatment and living with dementia. The site also has an option to search for services related to memory problems and dementia in your locality.

  Main website link

  Royal College of Psychiatrists (RCP)

  The RCP has produced a collection of online leaflets for the general public that cover a range of topics related to older people's mental health, including some dementia-specific resources: ‘Memory and dementia', ‘Alzheimer's disease and dementia', and ‘Drug treatments for Alzheimer's disease'.

  Main website link

• Getting helpOpen

  Alzheimers Society

  A useful section of the Alzheimer's Society website where users can ask for advice, share information, join in discussions and - most of all - feel supported.

  Main resource link

  DemenShare

  If you live or work in central and east Cheshire this site provides support, information and advice about dementia. You can ask questions and join in discussions about different topics.

  Main resource link

Housing and dementiaOpen

Extra care housing and dementia checklist

The Department of Health National Dementia Strategy Implementation Group has published this checklist, which is aimed at commissioners wishing to develop extra care housing for people with dementia and their carers. The checklist can be downloaded via the Dementia Information.

Main website link

Housing LIN

The Housing LIN web-pages on Housing and Dementia have been developed to serve as a gateway to all matters relating to housing and dementia. They bring together information on all aspects of meeting the needs of people with dementia and their carers in housing settings – particularly, but not exclusively, extra care housing.  These pages will be of interest to staff within health, social care, support and housing sectors.

Main website link

Learning disabilities and dementiaOpen

Best practice in learning disability and dementia

This 2006 publication by the Edinburgh Centre for Research on Families and Relationships reports on a three-year research project that explored best practice for people with a learning disability who develop dementia. It also looked at what enables people to remain in their own homes and communities.

Download the PDF

British Institute of Learning Disabilities

This national charity produces a range of publications on learning disabilities and dementia including ‘Down's syndrome and dementia' (for professionals), ‘About dementia' (for people with learning disabilities) and ‘About my friend' (for friends of people with Downs's syndrome and dementia).

Main website link

Do you recognise pain in someone with a learning difficulty and dementia?

This is a set of resources produced by the Joseph Rowntree Foundation in 2008 to help care staff, GPs and carers to recognise and treat pain in people who have a learning difficulty and dementia.

Main website link

Home for good? Support for people with learning difficulties in residential settings who develop dementia

This 2004 report by the Joseph Rowntree Foundation explores the findings of a study that looked at the key issues relating to people with learning difficulties with dementia living in care home settings. The report includes some examples of best practice in care home provision.

Download the PDF

Learning disabilities and dementia

This Alzheimer's Society factsheet explains why people with learning disabilities are at risk of developing dementia and suggests tips for working with people with learning disabilities and dementia.

Main website link

Supporting people with learning disability and dementia: a training resource pack for managers, team leaders and trainers

This 2009 pack, developed by the Dementia Services Development Centre and the Scottish Consortium for Learning Disabilities, contains a range of resources for managers and teams to work through to improve their knowledge of learning disabilities and dementia.

Resource link

Local dementia informationOpen

Alzheimers Society

Information about services and support groups in each area of England, Wales and Northern Ireland.

Main resource link

Key dementia reports and policiesOpen

Alzheimer's Disease International

Alzheimer's Disease International (ADI) is the umbrella organisation of Alzheimer associations around the world. It aims to help establish and strengthen Alzheimer associations throughout the world, and to raise global awareness about Alzheimer's disease and all other causes of dementia. The ADI World Alzheimer Report 2010 provides the most comprehensive global picture of the economic and social costs of dementia to date.

Main website link

Download the World Alzheimer Report

Counting the cost: caring for people with dementia on hospital wards

In this 2009 report, the Alzheimer's Society produce research showing that people with dementia experience poor outcomes from hospital stays, and calls for nurses to be given training in dementia care.

Link to report

Dementia 2010

Here the Alzheimer's Research Trust examines the numbers of people with dementia in the UK and calculates the economic cost of dementia to the UK economy. It argues that not enough is being spent on dementia research compared with conditions such as cancer and heart disease.

Link to website

Dementia: supporting people with dementia and their carers in health and social care

This 2006 jointly published guideline by the National Institute for Health and Clinical Excellence (NICE) and the Social Care Institute for Excellence (SCIE) offers comprehensive best-practice advice on the care of people with dementia and on support for their carers.

Main website link

Dementia UK

This 2007 report by the Alzheimer's Society provides the most up-to-date evaluation of the numbers of people with dementia in the UK, both current and projected.

Main website Link

Home from home: a report highlighting opportunities for improving standards of dementia in care homes

This 2007 report by the Alzheimer's Society examined carers' perceptions of the quality of dementia care provided in residential and nursing home facilities. It found problems with the provision of activities, a failure to treat residents with dementia with dignity and respect, poor relationships between care homes and relatives/friends, and variations in support available from external specialist services.

Download the PDF

Improving dementia services in England: an interim report

This 2010 report from the National Audit Office (NAO) concludes that people with dementia are still not getting value for money with the services available to them, and that not enough is being done to ensure robust implementation of the National Dementia Strategy.

Link to report

Improving services and support for people with dementia

This 2007 National Audit Office report reviewed services available for people with dementia. It criticised the quality and availability of care for people with dementia and their families.

Main website link

Living well with dementia: a national dementia strategy

The Department of Health's 2009 National Dementia Strategy for England is a landmark document which sets out the strategic framework within which local services can deliver quality improvements to dementia services in England. The strategy was developed in consultation with people with dementia and carers, as well as professionals, and sets out guidance for commissioning and implementing the strategy's 17 recommendations.

Link to strategy

Mental Capacity Act 2005

This legislation was implemented in England and Wales in two stages in April 2007 and October 2007. The Act and its associated Code of Practice have major implications for people with dementia, as do the Deprivation of Liberty Safeguards, a later amendment to the Act implemented in April 2009.

Summary and Core training set

My name is not dementia

In this 2010 report, the Alzheimer's Society and Mental Health Foundation joined forces to capture the views of people with dementia on quality of life, including indicators of what it looks like, and how to measure and promote it.

Visit the website

National Dementia Declaration

This Declaration was launched publicly in October 2010 by the Dementia Action Alliance, a group of over 40 organisations working to transform quality of life for people living with dementia and their carers. The Declaration includes seven outcomes that people with dementia and carers would like to see. Participating organisations will develop their own action plans to work towards these outcomes by 2014.

Read the Declaration

NICE Quality Standard for dementia

In 2010 the National Institute for Health and Clinical Excellence produced a quality standard for dementia, which includes ten statements covering a range of key issues including dementia training for staff, diagnosis, support for carers and end of life care. The quality standard describes what a high-quality dementia service should look like and can be used for benchmarking.

Visit the website

Quality outcomes for people with dementia: building on the work of the National Dementia Strategy

This 2010 report is a revised implementation plan for the National Dementia Strategy, based on the new government's vision for the NHS. It calls for a shift to a more outcomes-focused approach and a focus on four priority areas: early diagnosis, improving care in hospitals and in care homes, and reduced use of antipsychotics.

Download the PDF

See me, not just the dementia: understanding people's experiences of living in a care home

This 2008 publication by the Commission for Social Care Inspection (now the Care Quality Commission) reports on 100 inspections carried out in care homes across England using a new tool for inspecting: the Short Observation Framework for Inspection (SOFI). SOFI was developed in partnership with the University of Bradford and looks beyond the surface of routine care practice to understand the emotional wellbeing of people with dementia and how staff relate to them.

Download the PDF

The use of antipsychotic medication for people with dementia: time for action

The Department of Health's 2009 report suggests that at least two-thirds of the 180,000 people with dementia on antipsychotic medication do not need to be taking this medication, and in many cases it is actively harmful.

Link to Report

Resources for carers

Open

Alzheimer's Society's Lesbian, Gay, Bisexual and Transgender (LGBT) Support group

This telephone support service is for anyone who is lesbian, gay, bisexual or transgender and is affected by any form of dementia, either by having dementia or as carer of, or a former carer of, someone with dementia. Trained and skilled volunteers offer a listening ear to callers.

Resource link

Carers Direct

This NHS website offers information, advice and support for carers, including directing users to a national telephone helpline for carers, a search directory for carers' services in your area, and a range of features on topics relevant to carers, for example, ‘Your wellbeing' and ‘Work and study'.

Main website link

Carers UK

Carers UK is the lead campaigning organisation for carers in the UK. This website has national and local information about services and support available to carers, and issues related to caring.

Main website link

Dementia Centre

The charity PSS based in Liverpool runs a website – known as Dementia Centre – with a range of features that may be of interest to people with dementia and family carers: information, an online forum (known as a Dementia Café), essays written by people with dementia, memory games, and information about PSS's telephone support line for people with dementia and carers.

Main website link

Dementia UK

The charity Dementia UK promotes and develops Admiral Nursing nationally. Admiral Nurses are specialist community nurses who focus on the needs of carers and families of people with dementia, but they are currently only available in limited parts of the UK (see Dementia UK's website to find out where). The charity runs a national telephone and email helpline, Admiral Nursing DIRECT, staffed by Admiral Nurses and available for anyone affected by dementia, including professionals.

Main website link

Healthtalkonline

This website contains stories from 31 carers of people with dementia. Users can watch video, listen to audio recordings or read transcripts. The stories cover a wide range of areas including getting a diagnosis, becoming a carer and identifying signs of dementia. The stories were recorded as part of research into patient experiences led by experts at the University of Oxford.

Main website link

Horsesmouth

Horsesmouth, the free informal mentoring website, hosts a website that brings together people who live with dementia, or carers, or dementia care professionals. The aim of the website is to encourage people with real lived experiences to be able to offer advice and give support to others who may be facing similar challenges.

Main website link

Living Life with Dementia, Age UK

Age UK provide a range of resources for older people and their carers. This document, part of their expert series, supports the implementation of the National Dementia Strategy. It provides commissioners with clear and simple ideas for support and services, presents a range of services for people living with dementia and their carers that Age UK and Age Concerns provide and quotes older people living with dementia and their carers who use these services.

Resource link

Pick's Disease Support Group

This UK-based support group provides information and support to carers. It meets several times a year, has an annual seminar and produces a newsletter. The group's website contains resources including factsheets on Pick's disease, frontal lobe degeneration, dementia with Lewy bodies, Alzheimer's disease, primary progressive aphasia and other aspects of dementia such as unusual dementias.

Main website link

Talking mats

Talking Mats is a communication tool developed at the University of Stirling. It involves using a mat and picture symbols to communicate with people who have communication difficulties, including people with dementia. Talking Mats provides a framework for involving people with dementia in decision making about issues that affect them, and has been used as part of extensive consultation processes involving people with dementia.

Main website link

Talking point

Talking Point is an online community for people with dementia and their carers, family and friends to discuss all aspects of the condition. It is hosted by the Alzheimer's Society and supported by a group of volunteer moderators. It includes a forum for people under the age of 65 who have dementia, and their carers, and a forum for gay and lesbian carers.

Main website link

Uniting Carers, Dementia UK

This national network run by the charity Dementia UK has more than 800 family carers, former carers, family members and friends. Uniting Carers works to give carers a voice in improving services for people with dementia by supporting carers to contribute to the training and education of professionals, taking part in research projects, campaigning for and being involved in consultations on service provision, speaking to the media, writing about experiences and fundraising.

Main website link

Who cares? Information and support for the carers of people with dementia

This Department of Health publication (2007) is directed at carers of people with dementia and includes information about dementia, caring for someone with dementia and help available to carers.

Main website link

Resources for people with dementia

Open

Alzheimer's Society's Lesbian, Gay, Bisexual and Transgender (LGBT) support group

This telephone support service is for anyone who is lesbian, gay, bisexual or transgender and is affected by any form of dementia, either by having dementia or as carer of, or a former carer of, someone with dementia. Trained and skilled volunteers offer a listening ear to callers.

Resource link

DASNI

DASN International is an internet-based support network established to provide a forum for people with dementia to exchange information and offer support and information to one another. DASNI members (a third of whom have dementia) are encouraged to participate in their own care and treatment, including making presentations at conferences, publishing books, giving interviews and writing articles on living with dementia.

Main website link:

Dementia Centre

The charity PSS based in Liverpool runs a website – known as Dementia Centre – with a range of features that may be of interest to people with dementia and family carers: information, an online forum (known as a Dementia Café), essays written by people with dementia, memory games, and information about PSS's telephone support line for people with dementia and carers.

Main website link

Facing dementia

A Health Scotland 2008 publication written for people newly diagnosed with dementia. It covers topics such as ‘Staying well', ‘Practical support' and ‘Planning for the future'.

Main website link

Horsesmouth

Horsesmouth, the free informal mentoring website, hosts a website that brings together people who live with dementia, or carers, or dementia care professionals. The aim of the website is to encourage people with real lived experiences to be able to offer advice and give support to others who may be facing similar challenges.

Main website link

Living with Dementia Working Group

The Alzheimer's Society coordinate the work of a Living with Dementia Working group, a group of people with dementia who are involved in many aspects of the Alzheimer's Society's work, including responding to consultations, making conference presentations and evaluating the effectiveness of information resources.

Main website link

Scottish Dementia Working Group

The Scottish Dementia Working Group (SDWG) is an independent group run by people with dementia, and open to all people with dementia. The purpose of the SDWG is to campaign to improve services for, and attitudes towards, people with dementia.

Main website link

Still going strong: a guide to dementia

This online booklet by the Mental Health Foundation is for people who want to find out more about living with dementia. It is particularly useful if you have recently been told you have dementia and want to know more about what this might mean. The material is presented as a series of ‘frequently asked questions', and covers living with dementia, planning for the future and a section on strategies that people with dementia have found useful.

Main website link

Talking point

Talking Point is an online community for people with dementia and their carers, family and friends to discuss all aspects of the condition. It is hosted by the Alzheimer's Society and supported by a group of volunteer moderators. It includes a forum for people under the age of 65 who have dementia, and their carers, and a forum for gay and lesbian carers.

Main website link

Resources for professionals

Open

Bradford Dementia Group Good Practice Guides

This series of evidence-based good practice guides, published by Jessica Kingsley Publishers, is aimed at anyone involved in the care of people with dementia. The series covers topics such as ‘Enriched care planning for people with dementia', ‘Design for nature in dementia care', and ‘Drug treatments and dementia', among many others.

Main website link

Dementia Information Portal, Department of Health

This website has been developed following the implementation of the National Dementia Strategy and offers information and support to anyone with an interest in improving services for people with dementia. It includes news, case studies, discussions forums, podcasts and links to helpful resources.

Main website link

Dementia: supporting people with dementia and their carers in health and social care

This 2006 jointly published guideline by the National Institute for Health and Clinical Excellence (NICE) and the Social Care Institute for Excellence (SCIE) offers comprehensive best-practice advice on the care of people with dementia and on support for their carers.

Main website link

Dementia UK Training

Dementia UK Training specialises in the provision of high quality training courses for those who work with older people and people with dementia

Main website link

Department of Health Care Networks

The Department of Health Care Networks website includes three microsites of particular interest to dementia care professionals: the Housing Learning Improvement Network (LIN), Telecare Learning Improvement Network (LIN) (see assistive technology resources), and Dementia Network. The Housing LIN site includes dedicated pages on ‘Housing and dementia', which bring together information on all aspects of meeting the needs of people with dementia and their carers in housing settings – particularly, but not exclusively, extra care housing. The site includes information on commissioning, design, workforce and training issues, legislation and regulation, as well as featuring case studies about good practice in housing for people with dementia.

Main website link

Links to the Housing LIN Dementia pages Telecare LIN

Journal of Dementia Care

This multidisciplinary, bi-monthly journal is aimed at all professionals working with people with dementia. The subscription-only publication reports on news, research, resources and best-practice projects related to dementia care. The Journal also hosts the annual UK Dementia Congress in the autumn, an international conference bringing together over 500 people with dementia, carers and professionals, as well as approximately 10 conferences year throughout the UK for professionals on various dementia topics, such as technology and community care. The Journal is backed by Hawker Publications, which also publishes an extensive range of books on dementia.

Main website link

Key principles of person-centred dementia care

This Statement of Best Practice by the National Care Forum specifies indicators of quality in relation to person-centred dementia care services.

Download the PDF

Let's Respect toolkit

Let's Respect is an ongoing campaign led by the Department of Health to improve the care of older people with mental health problems, including dementia, in acute care settings. Let's Respect has produced a free toolkit for professionals which includes information and training resources, case studies, photographs and posters. It continues to produce a regular newsletter for the Let's Respect network.

Main website link

Signpost: Journal of Dementia and Mental Health of Older People

This is a specialist quarterly journal aimed at professionals working with and caring for people with dementia, older people with mental health problems and their carers.

Main website link

Talking mats

Talking Mats is a communication tool developed at the University of Stirling. It involves using a mat and picture symbols to communicate with people who have communication difficulties, including people with dementia. Talking Mats provides a framework for involving people with dementia in decision making about issues that affect them, and has been used as part of extensive consultation processes involving people with dementia.

Main website link

The Dementia Advocacy Network (DAN)

DAN is for people working in dementia advocacy: the network runs a forum to discuss issues and share ideas, provides training for new and experienced advocates and offers telephone support for advocates. DAN has a BME (black and minority ethnic) outreach worker who provides training to support advocacy schemes to be more inclusive and for those in the BME community on dementia advocacy.

Main website link

The Dementia Services Development Centre (DSDC)

The DSDC at the University of Stirling in Scotland was the first DSDC to be established. It works to disseminate research and good practice about care for people with any type of dementia. The website gives details of DSDC education and training services, projects, information services and publications. The DSDC publishes the free monthly e-journal Dementia Now, which contains research information, web links, news stories and resources.

Main website link

Who's doing research on dementia?Open

Alzheimer's Research Trust

The Alzheimer's Research Trust (ART) is the UK's largest research charity for dementia. It funds studies to find ways to treat, cure or prevent the range of dementias. ART brings together a network of 15 UK dementia research centres to share results and findings. It also provides information on dementia for the general public and professionals on its website, including for example, information on causes, symptoms, and the treatments available.

Main website link

Alzheimer's Society

The Alzheimer's Society funds research into the cause, cure, care and prevention of Alzheimer's disease and other dementias conducted in leading scientific institutions across the UK. It works with people with dementia and carers to select the best dementia research projects for funding as part of the Quality Research in Dementia (QRD) network. The London headquarters of the Society also hosts the Dementia Knowledge Centre, which is a library and information service for professionals and others with an interest in dementia care and research.

Main website Link

Bradford Dementia Group

The Bradford Dementia Group (BDG) is a part of the University of Bradford and is often associated with the dementia pioneer, Tom Kitwood, who established the group in 1992. The multidisciplinary BDG conducts research in two key areas: the lived experience of dementia and quality of care (including dementia care mapping and innovative therapeutic interventions). BDG offers training and professional development courses in addition to its ongoing undergraduate and postgraduate programmes.

Main website Link

Dementia Services Development Centre

The Dementia Services Development Centre (DSDC) at the University of Stirling was the first DSDC to be established in the UK. As well as hosting events, producing publications, the DSDC also conducts research into dementia in order to improve the quality of life and services for people with dementia and their carers. One of the DSDC's main areas of research over recent years has been dementia-friendly design.

Main website Link

DeNDRoN

The Dementias and Neurodegenerative Diseases Research Network (DeNDRoN) was established in 2005 by the Department of Health. The network works to improve the quality, coordination and speed of new research, strengthen the involvement of people with dementia and their carers in research, and liaise with the healthcare industry to support the delivery of high quality trials across the UK.

Main website Link

EVIDEM

EVIDEM is the short name for ‘Evidence-based interventions in Dementia', a five-year, £2 million programme of research funded by the National Institute for Health Research. EVIDEM is made up of five research projects run by a multidisciplinary group of researchers who are developing and testing evidence-based interventions, from diagnosis to end of life. The programme is hosted by Central and North West London NHS Foundation trust with academic input from a team of researchers at University College London, led by Professor Steve Iliffe, as well as a consortium of other academic contributors.

Main website Link

Housing and Dementia Research Consortium

This consortium is led by four major housing providers for older people: Housing 21, Anchor Trust, Hanover and the MHA. It works to develop the evidence base around housing with care options (or extra sheltered housing) for older people with dementia. Housing providers, researchers and interested individuals are welcome to join the consortium.

Main website link

Younger people with dementia

Open

Alzheimer's Society

The Alzheimer's Society has produced a number of resources on the issues arising for younger people with dementia, including a factsheet, a survey of current provision for younger people with dementia (2006), a reading list (2002) and a guide to service development and provision (2001). The Society also has a forum within the online community, Talking Point (for people with dementia and their carers) specifically for younger people with dementia.

Main website link

CANDID (Counselling And Diagnosis In Dementia)

CANDID is a nurse-led information and advice service for younger people with dementia and their families. The CANDID telephone and email service is run by a consultant nurse and clinical nurse specialist and is available to patients and families registered with the NHS Specialist Cognitive Disorders clinic at the National Hospital, London, and associated healthcare professionals.

Main website link

Dementia Web

This online information resource on dementia focuses on services in Oxfordshire, but also includes a section of valuable resources on general issues arising for younger people with dementia, including available benefits, employment and how to explain dementia to children and friends.

Main website link

PSIGE: Faculty for Old Age Psychology, British Psychological Society

PSIGE is a forum for psychologists with an interest in work with older people, and its website includes a special interest area on younger people with dementia, which has information on the current state of services for younger people with dementia and links to relevant resources.

Main website link

Bookmark and share

What are these? DEJI