Useful links for dementia

There is now so much interest in supporting people to live well with dementia and the list of reports, reviews, guides, toolkits and checklists that relate to dementia care grows daily. Keeping up can be difficult. Look here for up-to-date lists of ‘Useful links’ on a wide range of key topics in dementia care. Almost all the resources listed are available to view online or download for free.

Signs of dementia

After diagnosis of dementia

Living with dementia

Supporting people with dementia

Carers of people with dementia

Advanced Dementia and end of life

Policy

Signs of dementia

Early signs and diagnosis

View the early signs and diagnosis section of the Dementia Gateway or visit these useful links.

Alzheimer’s Society
The Alzheimer’s Society produces over 80 factsheets on all sorts of topics related to dementia, including many that relate to early signs and diagnosis, including Risk factors for dementia (450), Assessment and diagnosis (426), After a diagnosis (471), and The progression of Alzheimer’s disease and other dementias (458).

Dementia Diaries 
The Dementia Diaries project involves people living with dementia keeping an audio record of their daily life with dementia. Contributions cover a number of themes, including diagnosis. The project is the work of the non-profit communications organisation On Our Radar working with DEEP.

healthtalk
The healthtalk website contains stories from 31 carers of people with dementia, some presented in videos, some in audio recordings. The stories cover a wide range early signs of dementiaand getting the diagnosis.

NHS Choices
NHS Choices describes itself as the ‘online front door to the NHS’. It is the UK’s biggest health website and includes an A–Z of health conditions, including dementia, as well as explaining about treatments and how the health system works. The Dementia Guide on this site includes a section on Getting a dementia diagnosis, Benefits of early dementia diagnosis, and What to do if you’ve just been diagnosed with dementia.

Unlocking diagnosis: The key to improving the lives of people with dementia.
This All-Party Parliamentary Group of Dementia publication reports on the APPG’s 2012 inquiry into differing diagnosis rates – and the barriers for lifting these – around the UK.

Young onset dementia

View the young onset dementia section of the Dementia Gateway or visit these useful links.

Alzheimer’s Society
The Alzheimer’s Society produces over 80 factsheets on all sorts of topics related to dementia, including What is young-onset dementia (440), Explaining dementia to children and young people (515) and Rarer causes of dementia (442). It has also published a position statement on What is young-onset dementia?, maintains a database of services for younger people with dementia, and has a forum within its online community, Talking Point (for people with dementia and their carers), specifically for younger people with dementia.

Rare Dementia Support
Rare Dementia Support is a specialist support service for people living with or affected by one of five rare dementia diagnoses: familial Alzheimer’s disease, frontotemporal dementia, familial frontotemporal dementia, posterior cortical atrophy (PCA) and primary progressive aphasia (PPA). The service offers support group meetings, telephone contact networks, websites and access to information and advice and is based at the Dementia Research Centre at UCL’s Institute of Neurology. It was previously known as the Fronto-temporal Dementia Support Group.

FTD talk
The aim of this website from scientists at University College London is to make frontotemporal dementia (FTD) easy to understand for anyone with an interest in FTD. The site includes a dozen factsheets related to various aspects of FTD, available to download for free.

YoungDementia UK
This Oxford-based service offers care and support for younger people with dementia and their families. It was begun by Helen Beaumont whose husband Clive had young onset dementia. The YoungDementia UK website has information on young onset dementia.

Younger people with dementia: living well with your diagnosis
This substantial 2013 resource from NHS Health Scotland was developed in partnership with younger people with dementia and carers and covers a range of key information areas (such as home, health, independence, work and money) and includes links for finding out further information.

Sensory loss and dementia

View the sensory loss and dementia section of the Dementia Gateway or visit these useful links.

Dementia and deafness: What you need to know
This 2005 booklet from Deaf Action in Scotland is based on an exploratory study into the experience of being Deaf with dementia conducted by Deaf Action and the University of Stirling’s Dementia Services Development Centre.

Dementia and sight loss
The RNIB website has an extensive section on dementia and sight loss, including a leaflet on ‘Dementia and sight loss’, frequently asked questions, and a factsheet on ‘Cataracts and dementia’.

Good practice in the design of homes and living spaces for people with dementia and sight loss
These 2014 guidelines from Thomas Pocklington Trust and Stirling University present practical steps to improve the independence of people with dementia and sight loss, whether they are living in their own home or a care home. The resource is available in audio format as well as in written text.

Joining up
This 2013 report from Action on Hearing Loss and the Deafness Cognition and Language Research Centre (UCL) argues that a joined-up approach is needed to the assessment, diagnosis and management of both hearing loss and dementia.

The Dementia and Sight Loss Interest Group
This is an interest group within VISION 2020, and brings together a range of organisations working in this area. In 2016, VISION 2020 UK and the Royal College of Ophthalmologists launched a quality standard to help ophthalmology departments adapt and design their services to meet the needs of people with dementia..

Find out more about dementia

View the about dementia section of the Dementia Gateway or visit these useful links.

Age UK
The website for Age UK, England's largest organisation working with and for older people, has specific pages on dementia, which cover topics such as ‘What is dementia?’, ‘Could you be at risk?’, ‘Diagnosis and treatment’, and ‘Help and support’.

Alzheimer’s Research UK (ARUK)
The UK’s largest research charity for dementia. Its website provides information About dementia for the general public and professionals, for example on causes, symptoms, different types of dementia and the treatments available. The site includes the section, Dementia explained, which is aimed at children and young people.

Alzheimer’s Society
The 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.

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.

NHS Choices
NHS Choices describes itself as the ‘online front door to the NHS’. It is the UK’s biggest health website and includes an A-Z of health conditions, including a substantial Dementia Guide section, which covers About dementia, Symptoms of dementia, Living well with dementia, Help and support for people with dementia, and also includes an option to search for dementia services in your locality.

Who’s doing research on dementia?

Alzheimer’s Research UK (ARUK)
The UK’s largest research charity for dementia. It funds studies to find ways to treat, cure or prevent the range of dementias. ARUK brings together a network of 15 UK dementia research centres to share results and findings.

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 its Research 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.

Association for Dementia Studies
The Association for Dementia Studies at the University of Worcester is led by Professor Dawn Brooker. The ADS has a substantial research portfolio with both UK-based and international research into person-centred care and support.

Dementia Services Development Centre (University of Stirling)
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.

DeNDRoN
The Dementias and Neurodegenerative Diseases Research Network (DeNDRoN) is part of the National Institute for Health Research (NIHR) Clinical Research Network. DeNDRoN’s job is to support the development, set up and delivery of quality research into dementia and other neurodegenerative diseases.

School of Dementia Studies, Bradford University
The School of Dementia Services at the University of Bradford has been a leader in dementia research for over 20 years.

After diagnosis of dementia

Support after diagnosis

View the support after diagnosis section of the Dementia Gateway or visit these useful links.

Alzheimer’s Society
The Alzheimer’s Society produces a range of resources, including the 2013 publication The dementia guide (available online and in hard copy) aimed at people with dementia and their carers immediately following diagnosis. The Society also publishes over 80 factsheets including After a diagnosis (471), Coping with memory loss (526), Staying healthy (522) and Staying involved and active (505).

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

Living well with dementia: practical tips and advice
In this NHS Scotland film a number of people with dementia share practical tips for managing day-to-day living with dementia, such as putting up signs and instructions in the kitchen for safer meal preparation.

Dementia Diaries
The Dementia Diaries project involves people living with dementia keeping an audio record of their daily life with dementia. Contributions cover a number of themes: care and support, public perceptions, family and friends, living well with dementia, daily challenges, and policies and service provision. The project is the work of the non-profit communications organisation On Our Radar working with DEEP.

Memory café
An NHS Choices film about memory cafes and how they offer people with dementia and their carers the chance to socialise and share information. Here, one group talks about what the experience means to them and how the specific activities offered at the café benefit them.

Still going strong
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 covers ‘Is it dementia?’ ‘Living with dementia’, and ‘Planning for the future’ and includes a section on strategies that people with dementia have found useful.

Getting to know the person with dementia

View the getting to know the person with dementia section of the Dementia Gateway or visit these useful links.

And still the music plays
Professor Graham Stokes’ 2008 book shares the stories of 22 people with dementia and in doing so conveys that it is critical to think deeply about each person individually in order to respond well to their unique needs. Published by Hawker Publications.

Dancing with dementia: My story of living positively with dementia
Christine Bryden writes powerfully in this book about her experience of living with dementia, and argues for greater empowerment and respect for people with dementia as individuals. This 2005 book is published by Jessica Kingsley Publishers.

Dementia Diaries
The Dementia Diaries project involves people living with dementia keeping an audio record of their daily life with dementia. Contributions cover a number of themes: care and support, public perceptions, family and friends, living well with dementia, daily challenges, and policies and service provision. The project is the work of the non-profit communications organisation On Our Radar working with DEEP.

Dementia: Lesley’s story
This Alzheimer’s Society film features Lesley, who lives with dementia, talking about her life working with children, the work she continues to do and her many hobbies. This film is part of the Society’s ‘Remember the person’ campaign, which asks people to think about the individuals living with dementia and not just the diagnosis.

The Life Story Network
This organisation promotes the value of using life stories to improve the quality of life and wellbeing of people and communities, including people with dementia. Its website includes information about workshops and events, sharing practice online, and links to key resources.

Communicating well

View the communicating well section of the Dementia Gateway or visit these useful links.

Alzheimer’s Society
The Alzheimer’s Society produces over 80 factsheets on all sorts of topics related to dementia, including many that relate to communicating well with people with dementia: ‘Communicating’ (500) ‘Understanding and supporting a person with dementia’ (524),‘Dementia and the brain’ (456), ‘Changes in behaviour’ (525) and ‘Top tips’.

Communicating with people with dementia
This short video posted on Youtube features Bupa’s dementia specialist, Dr Graham Stokes, talking about communication with people with dementia.

Dementia care: how to deal with the challenges of communication
This 2012 publication was written by Jennifer Roberts, previously the Dementia Lead for the UKHCA.

DemTalk
DemTalk is a free online toolkit giving guidance on communication with people living with dementia. Different versions of the toolkit have been developed for family carers and health and care staff.

Listen, talk, connect: communicating with people living with dementia
This 2014 Care UK guide is aimed at family carers, relatives and friends and covers topics such as ‘Starting a conversation’, ‘Having a conversation’, ‘Making the most of your visit’, ‘The unspoken word’, and ‘Coping with difficult conversations’. The guide includes top tips and practical suggestions from a range of Care UK staff.

Tips for better communication with a person living with dementia
This new factsheet from Dementia UK explains the challenges faced by people with dementia when communicating, sets out helpful suggestions on good communication skills, and describes some common communication dilemmas.

Living with dementia

Keeping active and occupied

View the keeping active and occupied section of the Dementia Gateway or visit these useful links.

Alzheimer’s Society
The Alzheimer’s Society produces over 80 factsheets on all sorts of topics related to dementia, including Staying involved and active (505), Exercise and physical activity (529), and Mobility strategies. The Society’s website also includes Dementia Connect, a webpage for searching for information about local services and support groups for people with dementia and carers.

Arts 4 Dementia
This charity works with arts organisations around the UK to develop opportunities for people with dementia and their carers to participate in a wide range of arts activities. Arts 4 Dementia offers training for arts facilitators, advice, online resources and seminars.

As easy as ABC: Care UK’s top 100 hints and tips for activity-based care
Care UK’s activity teams share what they have found to be helpful when supporting people with dementia in everyday activities, arts and crafts, maintaining independence, special occasions, health and wellbeing, and reminiscence.

Living well through activity in care homes
This free online resource from the College of Occupational Therapists sets out a wide range of practical ideas on how to support care home residents to continue day-to-day activities that are important to them. The resource includes free training materials and audit tools to review and evidence aspects of care such as personalisation and choice.

Using ICT in activities for people with dementia
This 2012 SCIE guide covers a wide range of practical issues, such as ‘Getting the right kit’, ‘Introducing ICTs to people with dementia’, ‘ICTs in reminiscence and life story activities’, and ‘ICTs in creative and entertainment activities’.

Eating well for people with dementia

View the eating well for people with dementia section of the Dementia Gateway or visit these useful links.

Alzheimer’s Society
The Alzheimer’s Society website has a section entitled Eating, which covers a wide range of issues to do with helping people with dementia to eat well: difficulties with eating and drinking, preparing meals, the eating environment and finger foods. The Society also produces a factsheet on Eating and drinking (511).

Eating and drinking well: supporting people living with dementia
A team from Bournemouth University has developed a 26-minute training film aimed at nurses and care home staff, based on findings from a major study in this area. A workbook to accompany the film is also available from the research team.

Eating well for older people and older people with dementia: Practical guide
This 2011 guide from the Caroline Walker Trust explains why eating good food matters for older people with dementia, suggests types and amounts of food that might be appropriate to meet nutritional needs, and includes sample menus.

Eating well for people with dementia: a guide for carers
This 24-page booklet has been produced by the Northern Health and Social Care Trust in Northern Ireland. It covers topics such as ‘Encouraging eating’, ‘Common problems with eating and drinking’, ‘Dealing with diabetes’, as well as explaining the role of occupational therapists and speech therapists in this area, and the importance of mouth and dental care.

Nutrition and dementia
This 2014 report from Alzheimer’s Disease International investigates the links between diet and dementia and looks in detail at a range of ways in which nutrition can be improved for people who live with dementia.

Prevention and early intervention of malnutrition in later life: best practice principles and implementation guide
The Malnutrition Task Force have produced a range of guides, each bearing this main title and then focusing on a particular area (such as hospitals, care homes or community). The guides each include detailed attention to the particular needs of people with dementia.

Behavioural challenges

View the behavioural challenges section of the Dementia Gateway or visit these useful links.

Alternatives to antipsychotic medication: psychological approaches in managing psychological and behavioural distress in people with dementia
This 2013 British Psychological Society briefing paper sets out guidance for practitioners on how to respond to distress in people with dementia by following a ‘staged approach’: a series of steps involving identifying, understanding and implementing individualised interventions.

Alzheimer’s Society
The Alzheimer’s Society produces over 80 factsheets on all sorts of topics related to dementia, including many that relate to difficult situations in supporting a person living with dementia: Dementia and aggressive behaviour (509), Sight, perceptions and hallucinations in dementia (520), Managing toilet problems and incontinence (502), Walking about (501), and Sex and intimate relationships (514).

Dementia: Supporting people with dementia and their carers in health and social care
This 2006 guideline jointly published 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 carers.

Positive and proactive care: reducing the need for restrictive interventions
The Department of Health’s 2014 guidance on restraint is aimed at all health and social care staff working with adults in England.

Learning disabilities and dementia

View the learning disabilities and dementia section of the Dementia Gateway or visit these useful links.

Alzheimer’s Society
The Alzheimer’s Society produces over 80 factsheets on all sorts of topics related to dementia, including this one on Learning disabilities and dementia (430) and two easy-read factsheets aimed at people with learning disabilities on What is dementia? (ER1) and Supporting a person with dementia (ER2)..

BILT: British Institute of Learning Disabilities
This national charity produces a range of publications on learning disabilities and dementia, all of which cost, 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).

Dementia and people with intellectual disabilities
This 2015 guide from the British Psychological Society and Royal College of Psychiatrists covers a wide range of issues including assessment, diagnosis, interventions and support of people with intellectual disabilities who develop dementia.

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.

Younger people with dementia: living well with your diagnosis
This substantial 2013 resource from NHS Health Scotland was developed in partnership with younger people with dementia and carers and covers a range of key information areas (such as home, health, independence, work and money) and includes a section on ‘Caring for someone with a learning disability and dementia’.

Diversity and dementia

Alzheimer’s Society
The Alzheimer’s Society produces over 80 factsheets on all sorts of topics related to dementia, including Supporting lesbian, gay and bisexual people with dementia (480) and Moving into a care home: advice for lesbian, gay and bisexual people (482).

Black and minority ethnic communities and dementia: where are we now?
This 2013 briefing from the Race Equality Foundation says that not enough has been done since publication of the English National Dementia Strategy in 2009 to address the needs of people in black and minority ethnic communities. It was launched at a one-day learning event, reported on in full in this related resource, Dementia in black and minority ethnic communities: Meeting the challenge.

Black and minority ethnic people with dementia and their access to support and services
This SCIE research briefing (2011) found that the evidence base on supporting BME people with dementia is very limited.

Dementia does not discriminate: The experiences of black, Asian and minority ethnic communities
This 2013 publication reports the findings of the All-Party Parliamentary Group inquiry into this area. The APPG report sets out a higher estimate for the number of people with dementia from black, Asian and minority ethnic groups – and says care providers are not prepared to respond well to this increase.

Dementia doesn’t discriminate: Information for LGB&T people and their friends, partners and families
Equity Partnership, the Alzheimer’s Society and the MBC in Bradford have produced this eight-page leaflet as part of Bradford Council’s commitment to make the city more dementia friendly.

Race Against Dementia
This alliance of groups has come together in 2016 and issued a call to action to meet the challenge of dementia among Black, Asian and minority ethnic communities in the UK. It has also published Good practice guidance on this topic.

Women and dementia: a marginalised majority
This 2015 report from Alzheimer’s Research UK says that dementia hits women hardest: more women than men live with dementia, more women than men are carers of people with dementia, and more women experience difficulties continuing with employment as a result of their caring responsibilities. A related report, also titled Women and dementia, published by Alzheimer’s Disease International reports on these issues from an international perspective.

People living with dementia

View the living with dementia section of the Dementia Gateway or visit these useful links.

A guide to psychosocial interventions in early stages of dementia
The British Psychological Society worked with people living with dementia to produce this resource aimed at people newly diagnosed with dementia. The 2014 guide reviews a wide range of interventions (such as reminiscence, music therapy and assistive technology) and explains what each one involves, who it is aimed at, how to access it and what the evidence is for its efficacy.

Alzheimer’s Society Campaigners’ Network
The Alzheimer’s Society has a Campaigners’ Network, made of people with a range of interests in dementia, including people living with dementia and carers. This group is 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.

DASNI
Dementia Advocacy and Support Network International (DASNI) 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.

Dementia Connect
This directory of over 3,500 dementia support services is run by the Alzheimer’s Society and is aimed at anyone affected by dementia in England, Wales and Northern Ireland. The directory search function asks for a postcode and then lists basic information about nearby voluntary, statutory and private services.

Dementia Alliance International
The Dementia Alliance International is the peak global group that represents, supports and educates people living with dementia. Membership is free and is only open to people living with dementia. DAI offers a range of services including online support groups, webinars and newsletters. In 2016 DAI published The human rights of people living with dementia: from rhetoric to reality. This guidebook is aimed at people diagnosed with dementia and explains the significance of human-rights based approaches in all campaigning and advocacy efforts for people with dementia.

Dementia Diaries
The Dementia Diaries project involves people living with dementia keeping an audio record of their daily life with dementia. Contributions cover a number of themes: care and support, public perceptions, family and friends, living well with dementia, daily challenges, and policies and service provision. The project is the work of the non-profit communications organisation On Our Radar working with DEEP.

Dementia Engagement and Empowerment Project
This project aims to identify and support groups and projects that are led by or actively involve people with dementia across the UK and that are influencing services and policies relating to dementia. The project is a collaboration between the Mental Health Foundation, Innovations in Dementia with funding from the Joseph Rowntree Foundation. A 2015 report from DEEP entitled Developing a national user movement of people with dementia describes the growth of DEEP since 2012. DEEP has also produced a series of 15 short guides to support more active involvement of people with dementia.

Dementia guide
The Alzheimer’s Society Dementia guide (2013) is for anyone diagnosed with any type of dementia and their friends and family. The guide covers ‘About dementia’ and ‘Treatments’, and also ‘Planning ahead’, ‘Research’, ‘Services for people with dementia’, and ‘Support for carers’. The guide is available online or to order as a hard copy for free.

Dementia Peer Support Resource Pack
This pack includes a wide range of resources to  support the development of peer support groups for people living with dementia. It includes films, case studies, policy and research related to the benefits of peer support for people with dementia, as well as information on funding, staff training and evaluation of groups.

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.

Still going strong
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 covers ‘Is it dementia?’ ‘Living with dementia’, and ‘Planning for the future’ and includes a section on strategies that people with dementia have found useful.

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.

This is me
This is a leaflet developed by the Alzheimer’s Society for people with dementia. It was originally developed for people with dementia who were going into hospital, but it has been broadened to be suitable for any person with dementia who is receiving professional care in any setting. The leaflet can be filled in by the person with dementia or a family member, and it covers things such as preferences, likes, dislikes, interests and other information to help a person cope in an unfamiliar environment. The Scottish Government and Alzheimer Scotland have launched a similar form, Getting to know me.

Younger people with dementia: living well with your diagnosis
This substantial 2013 resource from NHS Health Scotland was developed in partnership with younger people with dementia and carers and covers a range of key information areas (such as home, health, independence, work and money) and includes links for finding out further information.

Supporting people with dementia

Assistive technology

View the assistive technology section of the Dementia Gateway or visit these useful links.

Assistive technology as a means of supporting people with dementia
This 2012 briefing from the Housing Learning and Improvement Network looks at policy initiatives that have attempted to encourage greater use of assistive technology, ethical considerations, examples of dementia care projects that have made good use of assistive technology, case examples and includes links to helpful resources.

AT Dementia
This website from the Trent Dementia Services Development Centre brings together information about assistive technology that has the potential to support the independence and leisure opportunities of people with dementia. The site includes the AT Guide: a self-help guide to how technology can help people to live well with dementia. It covers a vast range of daily living activities and gives advice and product suggestions.

Dementia-friendly technology charter
This practical guide on how technology can be used to support people living with dementia is aimed at people living with dementia and their family and friends as well as health, social care and housing professionals. It includes case studies, questions to be asked before buying technology and links to other sources of information and advice. It has been developed in 2014 by a sub-group within the dementia-friendly communities champion group, working as part of the Prime Minister’s challenge on dementia.

Getting equipped to tackle forgetfulness: Top tips for family and friends. Equipment, gadgets and technology to help people with dementia
This booklet was produced by the Foundation for Assistive Technology, Innovations in Dementia and Trent Dementia Services Development Centre in 2011 to help people with dementia and their family and friends to be able to make better use of assistive technology. It includes topics such as ‘How can equipment help’, ‘Things to think about’, ‘What equipment is out there?’, ‘Making decisions together’, ‘Things to check to get the best out of your equipment’, and ‘Sources of independent information and advice’.

Telecare LIN
The Telecare Learning and Improvement Network is a national network supporting the introduction of telecare and telehealth to housing, health and social care services for older and vulnerable people, including people with dementia. In January 2014, the Telecare LIN produced a special Telecare and dementia supplement to its regular newsletter.

Dementia-friendly communities

Dementia Action Alliance
This alliance is a group of over 4,000 organisations (as at summer 2016) which is working to transform quality of life for people living with dementia and their carers. Participating organisations come from a wide range of sectors (retail, transport, banking, and care to name a few) and have developed their own action plans to work towards the outcomes of the National Dementia Declaration.

Dementia friendly communities: global developments
This 2016 Alzheimer’s Disease International publication reports on a wide range of dementia friendly initiatives from all over the globe.

Dementia-friendly Yorkshire: first steps on the journey
This 2014 JRF publication presents 20 short case studies of projects that are taking place within Yorkshire in a range of places (for example shops, hospitals, schools and sports centres) to promote dementia-friendly organisations.

Dementia Friends 
The initial aim of this Alzheimer’s Society-led initiative was to recruit a million ‘Dementia Friends’ across England by 2015 and now, having achieved this, the new aim is to recruit 4 million Dementia Friends by 2020. Anyone is welcome to commit to being a Dementia Friend: to do so, they may either attend an information session on dementia or watch a video online, and commit to some form of practical action to improve life for people with dementia within their local community.

Dementia friendly communities: guidance for councils
This 2015 publication from the LGA and Innovations in Dementia is an updated version of the 2012 guidance developed by these same organisations. It covers important questions such as ‘What is a dementia friendly community?’ and ‘Why is dementia a key issue for councils?’, as well as sharing learning around the involvement of people living with dementia, the importance of place, and resources, case studies and networks to support work in this area.

Dementia without walls
The Joseph Rowntree Foundation ‘Dementia without walls’ work programme has been hugely significant in supporting progress on dementia friendly communities. This part of the JRF website presents a long list of links on the topic of dementia friendly communities – including all of the JRF’s own resources on this topic.

Housing

Dementia: finding housing solutions
The National Housing Federation, the Stirling University Dementia Services Development Centre, the Housing Learning and Improvement Network and Foundations grouped together to produce this 2013 report, setting out what is possible if people with dementia are supported to remain living in decent housing.

Extra Care Housing and Dementia Commissioning Checklist
The Department of Health National Dementia Strategy Implementation Group published this checklist in 2010, which is aimed at commissioners wishing to develop extra care housing for people with dementia and their carers.

Home truths
The Alzheimer’s Society’s 2012 report reviews the evidence on the housing issues facing people with dementia. It makes four recommendations and overall argues for greater integration between housing and health and social care.

Housing Learning and Improvement Network (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.

Making a start: Dementia – skilling the general needs housing workforce
This 2014 report by the Dementia and Housing Working Group (part of the National Housing Federation) argues that the housing workforce needs to be skilled in working with people living with dementia. It comes with a resource pack that includes a suggested training framework for different categories of staff, examples of what some housing providers are already doing, details of organisations that offer dementia awareness and training, and a list of useful resources.

Transforming care pathways for people with dementia
This 2015 report from the National Housing Federation and HACT sets out the role that housing associations can play in supporting people with dementia.

Environment

View the environment section of the Dementia Gateway or visit these useful links.

Dementia-friendly health and social care environments
This 2015 resource from the Department of Health presents design guidance in relation to new buildings as well as the adaption or extension of existing facilities, and includes case studies drawn from projects funded by the Dementia Capital Programme.

Design Resource Centre
The University of Stirling’s Dementia Services Development Centre (DSDC) has always been a leader in the area of dementia and design. The DSDC website includes the Design Resource Centre. This section includes links to a substantial range of publications and resources in the area of dementia-friendly design including information on the importance of lighting, colour and contrast, getting outside, and orientation and signage. The site also includes the DSDC Virtual Care Home and the DSDC Virtual Hospital. Both these resources allow users to navigate around the various areas within a care home or hospital (such as bedroom, ward, ensuite, kitchens, lounges and so on), and read advice about things to consider and ways to improve the care environment for people with dementia.

Developing supportive design for people with dementia
This is the final report of The King’s Fund’s Enhancing the Healing Environment (EHE) Programme, which ran from 2009 until 2012. The well-illustrated report includes descriptions of the 26 EHE projects completed in NHS Trusts to improvement the environment of care for people with dementia, and also includes the EHE assessment tool and overarching design principles.

Home environment and dementia
This NHS Choices web page sets out good introductory information on how to improve the environment for a person living with dementia. It covers topics such as lighting, flooring, colours, noise and outside spaces.

Making your home dementia-friendly
This 2015 Alzheimer’s Society booklet is aimed at people living at home. It covers a wide range of topics such as lighting, flooring, furniture and furnishings, knowing where things are, and enjoying the outside. 

Dementia and decision-making

View the dementia and decision-making section of the Dementia Gateway or visit these useful links.

Dementia: Making decisions
This 2012 guide from Alzheimer Scotland offers practical advice and information on decision-making for people appointed to make decisions on behalf of someone with dementia either as an attorney or guardian (in Scotland) or deputy (in England and Wales).

Making decisions: a guide for people who work in health and social care
This 60-page guide prepared by the Mental Capacity Implementation Programme in 2009 gives a broad overview of the Mental Capacity Act and is aimed at professionals who are supporting people who are unable to make some decisions for themselves.

Nothing ventured, nothing gained: risk guidance for people with dementia
This 2010 Department of Health guidance presents a risk enablement framework for assessing, enabling and managing risk collaboratively with people with dementia and their carers.

SCIE Mental Capacity Act resource
This web-based hub contains extensive information about the Mental Capacity Act, including introductory materials, training and specialist resources, audit tools, and links to research reports and short films about mental capacity.

Professionals working with people living with dementia

A guide to psychosocial interventions in early stages of dementia
The British Psychological Society worked with people living with dementia to produce this resource aimed at people newly diagnosed with dementia. The 2014 guide reviews a wide range of interventions (such as reminiscence, music therapy and assistive technology) and explains what each one involves, who it is aimed at, how to access it and what the evidence is for its efficacy.

Dementia and cognitive decline: a review of the evidence
This 2014 report from Age UK is an accessible update on what is known about dementia and mild cognitive impairment, prevalence, causes and risk factors, protective factors, interventions, and carers.

Dementia and Elderly Care News
What began as a way of keeping health staff who were involved in the New Cross Hospital Dementia Project up to date with dementia news and information has expanded into daily email alerts from this simple Wordpress website, available for free to anyone with an interest in supporting people with dementia. The librarian who maintains the site is with the Wolverhampton Medical Institute library, part of the Royal Wolverhampton NHS Trust. News alerts include a basic description and a link to the source material.

Dementia Challenge
The Department of Health’s key online presence in relation to dementia is found here, with regular news and blog updates, as well as links to other significant online content on dementia.

Dementia Connect
This directory of over 3,500 dementia support services is run by the Alzheimer’s Society and is aimed at anyone affected by dementia in England, Wales and Northern Ireland. The directory search function asks for a postcode and then lists basic information about nearby voluntary, statutory and private services.

Dementia Knowledge Centre
The Alzheimer’s Society runs an information service for health and social care professionals and others with an interest in dementia care and research, called the Dementia Knowledge Centre. The collection includes published information (print and electronic resources) on medical information, health care, social care, housing, design, therapies, novels, personal accounts and more. Interested professionals can search the centre’s database online (known as the Dementia Catalogue) or make enquiries by email, telephone or in person at the London headquarters of the Alzheimer’s Society.

Dementia Partnerships
This regularly updated website gives brief summaries and links to an extensive number of dementia-specific resources, organised into five categories: preventing well, diagnosing well, supported well, living well and dying well. The resources are mainly aimed at professionals working with people with dementia.

Dementia: supporting people with dementia and their carers in health and social care
This 2006 guideline jointly published 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 carers.

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 700 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.

NICE Pathways: Dementia overview
This online tool brings together all NICE guidance in a diagram setting out the dementia pathway, and including all relevant implementation information and tools for each stage of the pathway.

Tailored resource for carers and care providers on supporting people to live well with dementia
This online resource from the NICE Collaborating Centre for Social Care sets out how carers and care providers can implement NICE’s 10 quality statements in relation to dementia care – its benchmark for good quality dementia care. It explains key messages (‘What does this mean for care providers?’) and includes links to related resources and tools.

Triangle of Care – carers included: a guide to best practice for dementia care
The Carers Trust and The Royal College of Nursing (RCN) have produced this guide for care services on involving family carers in the care of people with dementia.

Carers of people with dementia

Working in partnership with carers

View the working in partnership with carers section of the Dementia Gateway or visit these useful links.

A road less rocky: supporting carers of people with dementia
This 2013 report from the Carers Trust maps the key stress points in the caring journey for carers of people with dementia, based on a major survey, interviews and focus groups.

Alzheimer’s Society
The Alzheimer’s Society produces a range of resources aimed at carers, including the 2013 publication The dementia guide (available online and in hard copy), as well as over 80 factsheets including Carers: looking after yourself (523) and How health and social care professionals can help (454).

Dementia: workers and carers together
This guide is aimed at social care workers and sets out best practice advice on how to support carers of people with dementia. It was developed jointly by Skills for Care and Dementia UK in 2012.

healthtalk 
This website contains stories from 31 carers of people with dementia, some presented in videos, some in audio recordings. The stories cover a wide range of areas, including recognising the early signs of dementiagetting the diagnosis and becoming a carer.

Triangle of Care
The Carers Trust and The Royal College of Nursing (RCN) have produced this guide for care services on involving family carers in the care of people with dementia.

Carers of people living with dementia

View the carers of people living with dementia section of the Dementia Gateway or visit these useful links.

A guide to psychosocial interventions in early stages of dementia
The British Psychological Society worked with people living with dementia to produce this resource aimed at people newly diagnosed with dementia. The 2014 guide reviews a wide range of interventions (such as reminiscence, music therapy and assistive technology) and explains what each one involves, who it is aimed at, how to access it and what the evidence is for its efficacy.

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.

Carers’ Call to Action
The Carers’ Call to Action was launched in November 2013 as part of the work of the Dementia Action Alliance: it is calling for individuals and organisations to sign up in support of greater acknowledgement and involvement of carers of people living with dementia.

dementiacarer.net
This website was launched in 2014 and is aimed at family carers of people living with dementia. It includes around 100 short video interviews with carers talking about how they have developed ways of coping with everyday problems. The videos are grouped into four sections: 'Understanding dementia', 'Daily life', 'My relationship', and 'Looking after myself', and presented alongside other online resources on the topic.

Dementia Challengers
This website has been developed by and for carers of people with dementia as a way of highlighting online resources that may be helpful for carers of people with dementia. It includes personal stories, listings of helpful websites and explanations of where to go for help and support.

Dementia Connect
This directory of over 3,500 dementia support services is run by the Alzheimer’s Society and is aimed at anyone affected by dementia in England, Wales and Northern Ireland. The directory search function asks for a postcode and then lists basic information about nearby voluntary, statutory and private services.

Dementia UK
The charity Dementia UK promotes and develops Admiral Nursing nationally. Admiral Nurses are specialist mental health 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. Its website includes a long list of ‘Common questions we get asked’ with helpful answers, such as ‘We’ve been told dad has dementia – now what?’.

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.

This is me
This is a leaflet developed by the Alzheimer’s Society for people with dementia. It was originally developed for people with dementia who were going into hospital, but it has been broadened to be suitable for any person with dementia who is receiving professional care in any setting. The leaflet can be filled in by the person with dementia or a family member, and it covers things such as preferences, likes, dislikes, interests and other information to help a person cope in an unfamiliar environment. The Scottish Government and Alzheimer Scotland have launched a similar form, Getting to know me.

TIDE: Together in dementia everyday
This is a new national involvement network for family carers of people with dementia, which aims to involve carers in supporting other carers, influencing policy and improving local services. The network will offer a development programme designed by carers to pass on skills and confidence to other carers.

Triangle of Care – carers included: a guide to best practice for dementia care
The Carers Trust and The Royal College of Nursing (RCN) have produced this guide for care services on involving family carers in the care of people with dementia.

Advanced Dementia and end of life

Advanced dementia

View the advanced dementia section of the Dementia Gateway or visit these useful links.

Alzheimer’s Society
The Alzheimer’s Society produces over 80 factsheets on all sorts of topics related to dementia, including many that relate to supporting a person with advanced dementia, such as The later stages of dementia(417) and The progression of Alzheimer's disease and other dementias(458)

healthtalk.org
The healthtalk website contains stories from 31 carers of people with dementia, some presented in videos, some in audio recordings. The stories cover a wide range of areas, including one section on ‘Deterioration: severe dementia’, which includes six carers each describing their experience of supporting their loved one in advanced dementia.

Identifying pain in people with dementia
The pharmaceutical company NAPP ran a campaign during 2014 called ‘See Change: Think Pain’ in which it promoted awareness about the importance of identifying and responding to pain in people living with dementia. NAPP developed a range of resources to support the campaign, including 10 videos, a booklet for care staff, a booklet for family carers, a poster, and a report of a major survey of care homes on the issue of pain in people living with dementia.

Oxleas Advanced Dementia Service: Supporting carers and building resilience
This 2013 resource from The King’s Fund describes how health and social care services in one local area are working together to support people living with advanced dementia in the community.

Supporting people in the advanced stages of dementia
This 2013 workbook from Skills for Care is intended to guide managers in what sorts of knowledge and skills care staff need when supporting people living with advanced dementia. The resource covers a wide range of topics, such as the importance of activity, moving away from a task-based care culture, reminiscence and reflective learning, and includes case studies, top tips and links to supporting resources.

End of life care

View the end of life care section of the Dementia Gateway or visit these useful links.

Care of dying adults in the last days of life
This December 2015 guideline from NICE (NG31) covers a range of issues, including communication and shared decision-making, as well as hydration and managing common symptoms, in the last two to three days of life.

Dementia and end of life planning
This information on the NHS Choices website presents information on care at home, hospice care and palliative care for people with dementia and includes a five-minute video on palliative care at home for people with dementia.

Difficult conversations: making it easier to talk to people with dementia about the end of life
The National Council for Palliative Care (NCPC) and the Dying Matters Coalition produced this booklet to help both professionals and carers of people with dementia to open up conversations about end of life wishes, particularly early in the dementia process. The booklet is available to download from the NCPC or Dying Matters Coalition website for a small charge.

End of life care for people with dementia living in care homes
This 2012 research briefing from SCIE looked at this issue from a range of perspectives, including people with dementia, family carers and care home staff, and found that more research and support is needed in this area.

Identifying pain in people with dementia
The pharmaceutical company NAPP ran a campaign during 2014 called ‘See Change: Think Pain’ in which promoted awareness about the importance of identifying and responding to pain in people living with dementia. NAPP has developed a range of resources to support the campaign, including 10 videos, a booklet for care staff, a booklet for family carers, a poster, and a report of a major survey of care homes on the issue of pain in people living with dementia.

Living and dying with dementia in England
This 2014 joint report from Marie Curie and Alzheimer’s Society investigates the barriers to people with dementia receiving good end of life care in England.

Time to talk?
This leaflet put out by the Dying Matters Coalition looks at how to start conversations with people with dementia about end of life care, and it covers ‘What to talk about’ and ‘What happens if you don’t talk’, and ‘When to talk’.

Dementia end of life care: special interest group (SIG)
A new network run by Dementia UK and Hospice UK provides an interactive forum for practitioners with an interest in dementia end of life care. The group meets regularly and summaries from the meetings can be downloaded from the Hospice UK website.

Policy

Dementia and the health and social care system

A road less rocky: supporting carers of people with dementia
This 2013 report from the Carers Trust maps the key stress points in the caring journey for carers of people with dementia, based on a major survey, interviews and focus groups.

Cracks in the pathway
This 2014 report from the Care Quality Commission shares findings from a major review of the care of people living with dementia as they move between care homes and acute hospitals.

Dementia 2015: Aiming higher to transform lives
This is the Alzheimer’s Society’s fourth annual report looking at quality of life for people with dementia in England. It reports on the Society’s annual survey of people with dementia and their carers, and makes recommendations on how to improve dementia care and support in England over the next five years.

Dementia: a State of the Nation report on dementia care and support in England
This late 2013 report from the Department of Health reports on progress across a range of issues, including diagnosis, living with dementia, dementia education and training, dementia-friendly communities, research, and the future. It includes good practice examples and sets out a ‘Call to action’ across all the areas covered.

Dementia rarely travels alone: living with dementia and other conditions
This is the final report of the latest inquiry from the All Party Parliamentary Group on Dementia (2015/16), which investigated the significant difficulties faced by people with dementia who are living with multiple health problems. A related report, Dementia and comorbidities: ensuring parity of care, published by the International Longevity Centre (ILC-UK) in 2016 reviews the research on this same topic.

Dementia: Supporting people with dementia and their carers in health and social care
This 2006 guideline jointly published 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 carers.

Joint declaration on post-diagnostic dementia care and support
This 2016 joint declaration by 17 key stakeholders in the dementia care field sets out what good quality post-diagnostic care should look like for people with dementia and their families.

Dementia UK: second edition
This report is an update to the 2007 Dementia UK report from the Alzheimer’s Society; this edition gives updated figures on prevalence, and economic and social costs, of dementia.

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 have developed their own action plans to work towards these outcomes. As at summer 2016, over 4,000 organisations have joined the Dementia Action Alliance with the aim of delivering the National Dementia Declaration.

NICE Quality standard for dementia 
In 2010 the National Institute for Health and Clinical Excellence produced a quality standard for dementia (QS1), 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. In April 2013, the first joint health and social care quality standard – Dementia: independence and wellbeing (QS30) – was launched. It also sets out ten quality statements and it applies to all social care settings and services working with and caring for people with dementia.

Prime Minister’s Challenge on Dementia 2020
This February 2015 report is a follow-up to the 2012 ‘Prime Minister’s Challenge on dementia’ published in 2012, which focused on dementia-friendly communities, improvements in health and care, and research. The 2015 report reviews progress and sets out priorities for future efforts to transform care, support and research. In 2016, the Department of Health published an implementation plan, setting out how these commitments will be met.