DementiaRoadmap

Helping primary care to support people with dementia

Living well

Many people are happier if they can remain independent and in their own homes as long as possible. It is important for clinicians to encourage the person with dementia to be as  independent as possible  and to continue to do the things that they enjoy.

There are some practical things that people can do to help them to live as well as possible; focusing on the things they can and want to do and trying not to become isolated, keeping busy with activities they enjoy may help them to feel more confident.

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Resources

  • Dementia core skills education and training frameworkOctober 29 2015This framework published by Skills for Health, Health Education England and Skills for Care sets out the essential skills and knowledge necessary for all staff involved in dementia care.
  • On the journey to becoming a dementia friendly organisationSeptember 3 2015This paper shares the lessons that have been learned through the Joseph Rowntree Foundation’s Dementia without Walls programme which started in June 2012 with a vision of making the UK a better place for people with dementia.
  • Dementia Atlas: Putting a focus on dementiaAugust 16 2016The Dementia Atlas is an interactive map that plots data about dementia care and support, allowing people to compare the quality of dementia care across the country.
  • World Alzheimer Report 2015: The Global Impact of DementiaAugust 25 2015The World Alzheimer Report 2015, 'The Global Impact of Dementia: An analysis of prevalence, incidence, cost and trends' makes key recommendations to provide a global framework for action on dementia.
  • Active Minds – dementia activity resourcesFebruary 15 2016Active Minds produce a suite of activity products to assist people with dementia in leading active, engaging and fulfilling lives - enjoying activities that are meaningful to them.
  • Prime Minister’s Challenge on Dementia 2020 Implementation PlanMarch 6 2016This implementation plan outlines how the 50 commitments set out in the Prime Minister’s challenge on dementia 2020 will be met, ensuring that England becomes the world-leader in dementia care, research and awareness by 2020.
  • Helping your loved one with dementia eat wellJune 2 2016This infographic published by Bupa UK offers some pointers for carers and relatives on how to help people with dementia to eat well so that they remain healthy and can continue to remain independent in their own home.
  • The Daily SparkleFebruary 8 2016The Daily Sparkle is a professionally written daily and weekly reminiscence and activity tool supported by the UK's leading care organisations such as the NHS, AgeUK and DementiaUK.
  • How living with dementia could beSeptember 2 2016This short animated video highlights how living with dementia could be through the 'well pathway for dementia'. It shows the importance of a holistic partnership approach to supporting the person with dementia, their families and carers within local community settings.
  • Cataracts and dementia factsheetJune 25 2013The information in this factsheet will help people in with both dementia and sight loss and how to help someone with dementia cope with surgery.
  • Creating a dementia friendly workplace: A practical guide for employersApril 22 2015This guide published by the Alzheimer's Society is designed to help employers provide support for staff members with dementia. It may also be a useful resource for people living with, or affested by, dementia in the workplace.
  • Support and care for people living with dementia from minority communitiesFebruary 24 2013This report outlines recommendations to improve support and care for people with dementia from minority communities in the North East.
  • Spirituality and ageing: implications for the care and support of older peopleJanuary 22 2013This briefing paper published the Institute for Research and Innovation in Social Services explores why our ageing population requires person-centred care and developmental support in order to maximise its chances of ageing well.
  • Eye examinations for people with dementia factsheetNovember 10 2014This factsheet provides information on eye examinations for people with dementia. It will be useful for people with dementia, their families, carers and professionals.
  • Duty of Candour: Information for all providersMarch 15 2015This document published by the Care Quality Commission sets out how meeting the Duty of Candour regulation will be central to both registration and inspection for NHS bodies and all other care providers regulated by the CQC.
  • Mental Health Act 1983: Code of PracticeJanuary 16 2015The revised code of practice shows professionals how to carry out their roles and responsibilities under the Mental Health Act 1983, to ensure that all patients receive high quality and safe care.
  • Peer Support for People with Dementia: A social return on investment studySeptember 16 2015This report published by the Health Innovation Network South London, the Academic Health Science Network for South London, outlines the findings of a study which demonstrated that the positive social value of peer support groups for people with dementia, their carers and volunteers can be far greater than the investment.
  • Developing a national user movement of people with dementiaSeptember 3 2015This report published by the Joseph Rowntree Foundation explores the learning from the Dementia Engagement and Empowerment Project (DEEP), a national network that engages and empowers people with dementia to influence the services and policies that affect them.
  • How can we make our cities dementia friendly?This briefing paper published by the Joseph Rowntree Foundation contributes to the emerging evidence base for Dementia friendly communities by drawing out the key messages from independent evaluations of their work programmes in Bradford and York.
  • Evaluation of the York Dementia Friendly Communities ProgrammeThis report published by the Joseph Rowntree Foundation identifies the distinctive features of the York Dementia Friendly Communities programme, which promotes a range of innovative projects. It looks at how people with dementia have been involved in shaping the programme.
  • Evaluation of the Bradford Dementia Friendly Communities ProgrammeSeptember 16 2015This report published by the Joseph Rowntree Foundation identifies the distinctive features of the Bradford Dementia Friendly Communities programme, and examines how people with dementia can influence what a Dementia Friendly Bradford should be like.
  • Assistive technology – devices to help with everyday livingAugust 12 2013This factsheet published by the Alzheimer's Society explores technological developments that can help make life easier for people with dementia and their carers in certain situations.
  • Women and Dementia: A global research overviewJune 5 2015This report published by Alzheimer’s Disease International explores the main issues affecting women in relation to dementia from an international perspective.
  • The dementia profileMarch 1 2016The dementia profile developed by the Dementia Intelligence Network collects new and existing data on dementia at both Clinical Commissioning Group and local authority level. This will assist the local planning of services and support areas to make sustainable improvements from an easily accessible online platform.
  • Dementia DiariesJune 4 2015Dementia Diaries is a national project that brings together people’s diverse experiences of living with dementia as a series of audio diaries.
  • No Secrets: guidance on protecting vulnerable adults in careJanuary 22 2015This guidance document published by the Department of Health sets out a code of practice for the protection of vulnerable adults in care.
  • Prime Minister’s challenge on dementia 2020February 21 2015The Prime Minister recently launched the government’s five year vision for the future of dementia care, support and research, which follows on from the existing Prime Minister’s Challenge on Dementia, launched in March 2012.
  • CMG48: Support for commissioning of dementia careApril 3 2013This guidance produced by the National Institute for Health and Clinical Excellence (NICE) summarises the key commissioning issues and the resource impact that will arise from implementing improvements in the quality of care for people with dementia, in line with the statements and measures that comprise the NICE quality standards for dementia.
  • New models of care for dementiaApril 9 2012This report proposes a new understanding of the dementia journey and a revised model of care for dementia, aimed at improving experiences and outcomes, and informing service redesign and commissioning.
  • Building dementia-friendly communities: A priority for everyoneSeptember 3 2013This report, published by the Alzheimer's Society, explores evidence from people with dementia about their experiences of living in their community and the ten key things they would like to see in a dementia-friendly community.
  • Dementia FriendsFebruary 21 2013Dementia Friends is an Alzheimer’s Society initiative that aims to give a million people a better understanding of dementia by 2015.
  • A vision of care fit for the twenty-first centurySeptember 3 2014This report published by the Commission on Residential Care offers a vision of housing with care fit for the twenty-first century, not bound by existing definitions but based on the outcomes that people want and value.
  • Dementia Peer Support Resource PackApril 24 2015This resource pack, published by the Health Innovation Network, the Academic Health Science Network for South London, aims to promote and encourage more peer support opportunities for people with dementia.
  • Good to go: A guide to dementia-friendly days outApril 28 2015This handbook published by Care UK aims to support carers relatives and friends who want to enjoy a variety of outings and trips with someone living with dementia.
  • Women’s experiences of dementiaJune 1 2015The 'Women's experiences of dementia' website contains a wealth of stories which highlight the experiences of women affected by dementia.
  • Dementia: A state of the nation report on dementia care and support in EnglandNovember 29 2013This report, published by the Department of Health, sets out what is known about dementia care, support and research. It highlights where improvements are being made and where improvements are needed.
  • The Care Bill: factsheetsJanuary 10 2014These factsheets will help practitioners to better support patients and carers to get the care and support they need, following the changes introduced by the Care Bill, published in 2013.
  • Blackfriars Consensus on promoting brain healthMay 3 2014The Blackfriars Consensus, published by the UK Health Forum and Public Health England, explores the potential for incorporation of dementia risk reduction into current approaches for non-communicable diseases.
  • Putting dementia on the mapNovember 29 2013Putting dementia on the map published by the Department of Health draws on data and information about dementia health and care, dementia friendly communities and research.
  • The dementia guideFebruary 22 2014This guide produced by the Alzheimer's Society is for anyone who has recently been told they have dementia.
  • Making involvement countOctober 7 2011The Making involvement count resource pack is made up 18 cards each aimed at giving specific information, advice and top tips to support people with dementia to get involved in activities whilst recognising their current abilities.
  • State of Care 2013/14October 16 2014This report published by the Care Quality Commission (CQC) reveals wide variation in the quality and safety of care for conditions such as dementia in England.
  • Dementia Revealed: What primary care needs to knowOctober 30 2014This toolkit written by Dr Elizabeth Barrett is intended as an educational resource for use by GPs and practice nurses to expand their knowledge and confidence.
  • The Sound Doctor: Getting the best out of life with dementiaMarch 23 2015A series of films providing information to families living with dementia through the entertaining medium of TV/Film.
  • Dementia does not discriminate – The experiences of black, Asian and minority ethnic communitiesJuly 2 2013This report, produced by the All Party Parliamentary Group (APPG) on Dementia, looks at the experiences of black, Asian and minority ethnic (BAME) communities in dealing with the condition.
  • Dementia Friendly Communities: New domains and global examplesMarch 20 2015This report, published by Alzheimer’s Disease International, highlights the emerging trend to create dementia-friendly communities as a global response against stigma in an effort to form more inclusive societies for people living with dementia.
  • Reading well books on prescription for dementiaFebruary 4 2015The Reading well books on prescription for dementia scheme is available in public libraries as part of a national library strategy to support the development of dementia-friendly communities and build understanding and awareness of the condition.
  • Building on the National Dementia Strategy: Change, progress and prioritiesJuly 27 2014This report published by the All Party Parliamentary Party Group on Dementia (APPG) calls for a new long term strategy for dementia to be a worthy successor to the National Dementia Strategy for Dementia in England and the Prime Minister's challenge on dementia.
  • Peer support networks and dementia advisers: evaluationOctober 9 2013This report, published by the Department of Health, provides the findings of the Healthbridge evaluation into the role that dementia advisers and peer support networks can provide in post diagnostic support for people with dementia and their carers.
  • QS30: Supporting people to live well with dementiaApril 3 2013This quality standard, published by the National Institute for Health and Care Excellence (NICE), covers the care and support of people with dementia.
  • The £20 Billion Question – An inquiry into improving lives through cost-effective dementia servicesJuly 4 2011This report published by the All-Party Parliamentary Group on Dementia (APPG) explores the the evidence for cost effective models of dementia care. It makes recommendations to focus on early intervention and prevention to reduce early entry to residential care and reduce unnecessary hospital admissions.
  • Driving and dementiaMay 21 2014This Alzheimer's Society factsheet explains the legal situation around driving and dementia, and gives some tips on stopping driving.
  • AT DementiaMarch 13 2014AT Dementia is web-based information resource on assistive technologies (including telecare) for people with dementia.
  • A practical guide to healthy ageingOctober 1 2015This guide published by NHS England and Age UK contains advice to help improve the health and general fitness of people of any age, but it is particularly relevant for people who are about 70 years or older.
  • Supporting a person with dementiaOctober 16 2014This Easy Read factsheet published by the the Alzheimer's Society provides advice for someone with learning disabilities who may have a friend or relative with dementia.
  • Dementia 2013: The hidden voice of lonelinessApril 9 2013This report, published Alzheimer’s Society, reveals that nearly two thirds (62%) of more than 250,000 people with dementia who live on their own are lonely. This compares to just 24 per cent of over 55 year olds.
  • Befriending works: building resilience in local communitiesNovember 12 2010This report published by the Mentoring and Befriending Foundation provides an overview of how befriending can contribute to improving the health and well-being outcomes of vulnerable people at risk of social isolation or exclusion from mainstream society.
  • Care and Support Jargon BusterMay 14 2014The Care and Support Jargon Buster published by Think Local Act Personal is a plain English guide to the most commonly used social care words and phrases and what they mean.
  • Collaborative Care and Support Planning: an introductionJanuary 19 2015This animation, commissioned by the Royal College of General Practitioners, sets out the collaborative care and support planning process in a short, easy to understand way.
  • Five Year Forward ViewOctober 23 2014The Five Year Forward View published by NHS England sets out why the NHS needs to change and various models of care which could be provided in the future to deliver transformed care for patients.
  • Low expectations: attitudes on choice, care and community for people with dementia in care homesFebruary 26 2013This report published by the Alzheimer’s Society stresses the need to lift expectations and to strengthen existing minimum standards to boost quality of life for people with dementia in care homes.
  • Case for change – Communities for people living with dementiaNovember 28 2011This document explains the evidence that has been used in designing the service to support people with dementia, whether living at home or in care homes, as well as dementia-specific elements of other Communities.
  • Women and dementia: A marginalised majorityMarch 8 2015This report published by Alzheimer's Research UK reveals that dementia has become the leading cause of death among British women and that women are far more likely to end up as carers of those with dementia than men, suffering physical and emotional stress and job losses in the process.
  • Wearing glasses with dementia factsheetNovember 10 2014This factsheet is about the issues people with dementia who need to wear glasses may face. It will be useful for people with dementia, their families, carers and professionals.
  • Better planning for car ownership and well-being in old ageMay 31 2016This briefing paper published by the Housing Learning and Improvement Network seeks to connect the body of knowledge around the significance of car ownership in achieving well-being for older people to those making decisions that may impact on car ownership among older people.
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Groups

  • Dementia AdventureDementia Adventure is a charity dedicated to bringing the benefits of nature based activities and adventures into the lives of more people living with dementia. Unit 11, Old Park Farm, Main Road, Ford End, Essex, CM3 1LN01245 237548
  • The ExtraCare Charitable TrustThe ExtraCare Charitable Trust is a not for profit developer and operator of ExtraCare Villages and Housing schemes which has retirement villages and housing schemes across the Midlands and North. ExtraCare's award-winning Enriched Opportunities Programme® (EOP) supports residents with dementia and dementia-related conditions.7 Harry Weston Road, Binley Business Park, Coventry, CV3 2SN024 7650 6011
  • Health Education EnglandHealth Education England (HEE) works across England to deliver high quality education and training for a better health and healthcare workforce.1st Floor, Blenheim House, Duncombe Street, Leeds, LS1 4PL
  • HealthwatchHealthwatch England is the national consumer champion in health and care. We have significant statutory powers to ensure the voice of the consumer is strengthened and heard by those who commission, deliver and regulate health and care services.Skipton House, 80 London Road, London, SE1 6LH03000 683 000
  • RevitaliseRevitalise is a national charity providing short breaks and holidays (respite care) for disabled people and carers. We also offer inspirational opportunities for volunteers through one of the largest, most diverse volunteer programmes in the UK.212 Business Design Centre, 52 Upper Street, London, N1 0QH0303 303 0147
  • ThriveThrive is the leading charity in the UK using gardening to change the lives of disabled people. Thrive run structured programmes of activities for people with dementia which focus on positive reminiscence, re-connecting with others including friends and family and gentle appropriate exercise and cognitive stimulationThe Geoffrey Udall Centre, Beech Hill, Reading, Berkshire, RG7 2AT0118 988 5688
  • House of MemoriesHouse of Memories is an award-winning training programme, run by the Museum of Liverpool, which targets the carers of people living with dementia. It provides participants with information about dementia and equips them with the practical skills and knowledge to facilitate a positive quality of life experience for people living with dementia.Museum of Liverpool, Pier Head, Liverpool Waterfront, Liverpool, L3 1DG0151 478 4545
  • Engage & CreateEngage & Create is a not-for-profit organisation that uses creativity and conversation to improve the quality of life for people with dementia and those that care for them.Brighton, UK
  • The Imperial Memory UnitThe Imperial Memory Unit within Charing Cross Hospital offers patients access to the latest treatments for memory disorders through participation in clinical trials and research.Department of Neurosciences Level 10 West, Charing Cross Hospital, Fulham Palace Road, London, W6 8RF020 3313 5515 / 020 3311 5228
  • Admiral Nursing DIRECTAdmiral Nursing DIRECT is a telephone and email helpline run by experienced Admiral Nurses for family and professional carers, people with dementia and those worried about their memory. 2nd Floor, Resource for London, 356 Holloway Road, London, N7 6PA0845 257 9406
  • All-Party Parliamentary Group on Dementia (APPG)The All-Party Parliamentary Group on Dementia (APPG) is a cross party group made up of MPs and Peers with an interest in dementia.House of Commons, London, SW1A 0AA
  • Innovations in DementiaInnovations in Dementia is a community interest company that works nationally with people with dementia, partner organisations and professionals to develop and test projects that will enhance the lives of people with dementia.PO Box 616, Exeter, EX1 9JB01392 420076
  • Dementia Engagement and Empowerment Project (DEEP)The Dementia Engagement and Empowerment Project (DEEP) brings together groups of people with dementia from across the UK. DEEP supports these groups to try to change services and policies that affect the lives of people with dementia.PO Box 616, Exeter, EX1 9JB01392 420076
  • Alzheimer’s SocietyAlzheimer's Society is a membership organisation, which works to improve the quality of life of people affected by dementia in England, Wales and Northern Ireland.Devon House, 58 St Katharine's Way, London, E1W 1LB020 7423 3500
  • Dementia Services Development CentreThe Dementia Services Development Centre is an international centre of knowledge and expertise dedicated to improving the lives of people with dementia.Iris Murdoch Building, University of Stirling, Stirling, FK9 4LA, Scotland01786 467740
  • Disabled Living FoundationThe Disabled Living Foundation (DLF) is a national charity providing impartial advice, information and training on independent living.Landmark House, Hammersmith Bridge Road, London, W6 9EJ0300 999 0004
  • Carers DirectCarers Direct offer a helpline for carers that need help with their caring role and want to talk to someone about what options are available to them. PO Box 27079, Glasgow, G3 9EJ0300 123 1053
  • Sporting Memories NetworkThe Sporting Memories Network, also known as Replay, is a national charity which promotes the use of sporting memories to improve the wellbeing of older people and to tackle dementia, depression and social isolation.Orchard House, Long Street, Topcliffe. North Yorkshire, YO7 3RL
  • Faculty for the Psychology of Older PeopleThe Faculty for the Psychology of Older People (FPoP), formely known as PSIGE, is part of the British Psychological Society's Division of Clinical Psychology. It works to encourage the exchange of information, ideas and expertise about psychological approaches with older people.St Andrews House, 48 Princess Road East, Leicester, LE1 7DR0116 252 9515
  • Bradford Dementia GroupBradford Dementia Group is a multi-disciplinary, multi-professional group committed to making a difference to policy and practice in dementia care, through excellence in research, education and training.School of Health Studies, Horton A Building, University of Bradford, Richmond Road, Bradford, BD7 1DP01274 233996
  • Dementia Research CentreThe Dementia Research Centre, based at the National Hospital for Neurology and Neurosurgery, is one of the UK's leading centres for clinical research into dementia.8-11 Queen Square, London, WC1N 3AR020 3448 4773
  • The Reading AgencyThe Reading Agency is a charity working to inspire more people to read more, encourage them to share their enjoyment of reading and celebrate the difference that reading makes to all our lives. Free Word Centre, 60 Farringdon Road, London, EC1R 3GA0207 324 2544
  • Dementia Action AllianceThe Dementia Action Alliance brings together organisations across England committed to transforming the lives of people with dementia and their carers.
  • YoungDementia UKYoungDementia UK is a charity based in Oxfordshire that aims to help people whose lives are affected by young onset dementia.PO Box 315, Witney, Oxfordshire, OX28 1ZN01993 776295
  • Ladder to the MoonLadder to the Moon provides workforce and service development that enables health and care organisations to develop active, creative, vibrant care services. It uses approaches that incorporate creativity and the arts, and involve staff, older people living with dementia and other long-term conditions, and the wider community.Studio 522, Highgate Studios, 53-79 Highgate Road, London, NW5 1TL0203 784 9649
  • The Disabled Parents NetworkThe Disabled Parents Network is a National network of Disabled Parents, helping each other and bringing about change for disabled people who are parents or who hope to become parents, their families, friends and supporters.Poynters House, Poynters Road, Dunstable, Bedfordshire, LU5 4TP07817 300 103
  • Dementia PathfindersDementia Pathfinders CIC is a social enterprise delivering therapeutic care and support for people with dementia and their families, and programmes of education and learning for people working in the dementia care field.Bushbury Triangle Resource Centre, 74 Stanley Road, Wolverhampton, WV10 9EL01902 556630
  • The National Valuing Families ForumThe National Valuing Families Forum brings together a network of regional family carer organisations to consult and feed into government policy and legislation affecting those with learning disabilities and their families.32-36 Loman Street, London, SE1 0EH
  • The Reader OrganisationThe Reader Organisation is a charitable social enterprise working to connect people with literature through shared reading. The older people and dementia work programme uses shared reading to improve quality of life and care for people living with dementia and their carers.Calderstones Mansion House, Calderstones Park, Liverpool, L18 3JB0151 729 2200
  • Arts 4 DementiaArts 4 Dementia helps develop activities at arts venues to re-energise and inspire people in the early stages of dementia and their carers. The Music Base, King's Place, 90 York Way, London, N1 9AG020 7520 1492
  • Race Against DementiaRace Against Dementia is an alliance of groups currently providing information and support to people from Black, Asian and minority ethnic communities in the UK.Stamford Hill, London, N16 5TJ
  • Playlist for LifeBeing able to respond to music is the one thing dementia cannot destroy. Playlist for Life encourages families and caregivers to create a playlist of personally meaningful music on an iPod for people with dementia. 3 Castle Court, Carnegie Campus, Dunfermline, Fife, Scotland, KY11 8PB
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