DementiaRoadmap

Helping primary care to support people with dementia

Underpinning

This section contains details of groups and resources relevant to several topics that underpin the well pathway for dementia, such as commissioning, research and workforcce development.

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Resources
Groups

Resources

  • Integrated Care Systems: GuidanceThese guidance documents published by NHS England and the Local Government Association set out how NHS leaders and organisations will operate with their partners in Integrated Care Systems (ICSs) from April 2022.
  • Projections of Older People Living with Dementia and Costs of Dementia Care in the United Kingdom, 2019–2040This report published by the Care Policy and Evaluation Centre at the London School of Economics and Political Science provides projections of the number of older people (aged 65 and over) living with dementia in the UK and the costs of healthcare, social care and unpaid care from 2019 to 2040.
  • The Many Faces of DementiaThis online course enables you to gain a unique insight into dementia through the stories, symptoms and science behind four less common diagnoses of dementia, the people involved and the implications of these for our wider understanding.
  • Risk reduction of cognitive decline and dementiaThe World Health Organization (WHO) guidelines on risk reduction of cognitive decline and dementia provide evidence-based recommendations on lifestyle behaviours and interventions to delay or prevent cognitive decline and dementia.
  • Dementia Commissioning know how guideThis resource aims to enable Clinical Commissioning Groups to achieve and maintain dementia diagnosis rate of at least two-thirds of the estimated number of people with dementia, and improve the quality of and access to post diagnostic care for people living with dementia and their carers.
  • Dementia Care Pathway: full implementation guidanceThe Dementia Care Pathway: full implementation guidance, published by the National Collaborating Centre for Mental Health (NCCMH), sets out key commissioning and service development considerations in the delivery and quality of care and support for people living with dementia and their families and carers.
  • Dementia: assessment, management and support for people living with dementia and their carersThis NICE guideline covers diagnosing and managing dementia (including Alzheimer’s disease). It aims to improve care by making recommendations on training staff and helping carers to support people living with dementia.
  • NHS Health Check commissioning: Commissioner’s current and potential use of weighted financial remunerationThis report includes details of a literature review of commissioner’s current and potential use of weighted financial remuneration and provides recommendations for commissioners.
  • Training resources to improve the dementia component of the NHS Health CheckThese training resources can be used by NHS Health Check trainers and practitioners to improve the quality of their delivery of the dementia component of the check.
  • Turning up the volume: unheard voices of people with dementiaThis report published by the Alzheimer’s Society brings together views of more than 3,500 people with dementia, carers and the public on what it is like to live with dementia.
  • Implementation guide and resource pack for dementia careThis guide aims to set out the policy drivers and strategic context for transforming dementia care, and why it is of importance to commissioners, providers and sustainability and transformation partnerships (STPs) in supporting delivery of a number of objectives in the Department of Health’s Prime Minister’s challenge on dementia 2020, published February 2015, which complements the aims of the Five Year Forward View, published in October 2014.
  • National Audit of Dementia – third reportThe National Audit of Dementia (NAD) (care in general hospitals) measures the performance of general hospitals against criteria relating to care delivery which are known to impact upon people with dementia while in hospital. The third audit collected data between April and November 2016.
  • State of Caring 2017This survey undertaken by Carers UK paints a comprehensive picture of caring in 2017 and more than 7,000 people responded, making it the largest State of Caring Survey to date.
  • Prime Minister’s Challenge on Dementia 2020 Implementation PlanThis 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.
  • Dementia core skills education and training frameworkThis 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.
  • Prevalence of dementia in population groups by protected characteristics: a systematic review of the literatureThis literature review published by Public Health England examines evidence on how the prevalence of dementia varies with different characteristics, such as ethnicity, gender and religion.
  • Peer Support for People with Dementia: A social return on investment studyThis 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.
  • World Alzheimer Report 2015: The Global Impact of DementiaThe 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.
  • Join Dementia Research animated filmOver 850,000 people are living with dementia in the UK. This short animation explains how you can get involved with a new NHS service that matches people to dementia research studies. Anyone can take part, you just need to be over 18.
  • Women and Dementia: A global research overviewThis report published by Alzheimer’s Disease International explores the main issues affecting women in relation to dementia from an international perspective.
  • Dementia DiariesDementia Diaries is a national project that brings together people’s diverse experiences of living with dementia as a series of audio diaries.
  • Women’s experiences of dementiaThe 'Women's experiences of dementia' website contains a wealth of stories which highlight the experiences of women affected by dementia.
  • Creating a dementia friendly workplace: A practical guide for employersThis 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.
  • Award in Understanding DementiaThe Alzheimer's Society and the Royal Society for Public Health have joined forces to create a new qualification to help people understand more about dementia.
  • Women and dementia: A marginalised majorityThis 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.
  • Join Dementia ResearchJoin Dementia Research aims to accelerate the pace of dementia research by allowing people with and without dementia to register their interest in studies, helping researchers find the right participants at the right time.
  • Prime Minister’s challenge on dementia 2020The 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.
  • Commissioning for Carers PrinciplesThis practical tool is part of a suite of products that will help commissioners to deliver what carers say is important to them in ways that have been shown to work effectively and efficiently in practice.
  • Focus on dementia researchThe National Institute for Health Research (NIHR) website Focus on Dementia showcases some of the cutting-edge clinical research that could bring new hope to dementia patients and their families.
  • Blackfriars Consensus on promoting brain healthThe 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.
  • 10 key steps to improving timely diagnosis: A resource pack for Commissioners and General PracticesThis resource pack sets out key steps for Commissioners, and key steps for General Practices to improve the diagnosis of dementia, and the diagnosis pathway.
  • Putting dementia on the mapPutting 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.
  • Dementia: A state of the nation report on dementia care and support in EnglandThis 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.
  • Journey of Caring: An analysis of long-term care for dementiaThis report published by Alzheimer’s Disease International highlights the importance of helping people with dementia to remain independent and living in their own homes as part of the local community for as long as possible.
  • Participation in dementia researchThis short film aims to encourage more patients and carers to take part in ground-breaking research into dementia and other neurodegenerative diseases.
  • Dementia 2013: The hidden voice of lonelinessThis 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.
  • CMG48: Support for commissioning of dementia careThis 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.
  • RCGP Commissioning Guidance in End of Life CareThis guidance offers a logical six-step framework and overview to support GP commissioners to deliver practical improvements in end of life care, aligned with national policy and quality standards.
  • Low expectations: attitudes on choice, care and community for people with dementia in care homesThis 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.
  • Delivering major improvements in dementia care and research by 2015: A report of progressThis report by the three Champion Groups leading the Prime Minister's challenge on dementia provides an update on progress since the launch of the Challenge in March 2012.
  • Commissioning person-centred end of life careThis toolkit published by the National End of Life Care Programme identifies the main elements involved in the commissioning process, explains the commissioning cycle in practical terms and offers a four-stage approach across all sectors.
  • Dementia commissioning for quality and innovationDementia commissioning for quality and innovation (CQUIN) aims to help identify patients with dementia and other causes of cognitive impairment, alongside their other medical conditions and to prompt appropriate referral and follow up after they leave hospital.
  • Care of people with dementia in primary careThis factsheet published by the Royal College of General Practitioners provides GPs with guidance on the care of people with dementia in primary care.
  • Caring, compassionate, skilled – transforming the dementia workforceThis guidance will support commissioners to better understand workforce planning and development issues that may impact staff working with people with dementia and their carers and families.
  • Commissioning End of Life Care: Act & EarlyThis guidance published by the National Council for Palliative Care aims to help healthcare commissioners to prioritise early action on end of life care to ensure people’s choices are met and to avoid unnecessary emergency hospital admissions.
  • Support, Stay, Save: care and support of people with dementia in their own homesThis report provides evidence from over 2,000 carers, people with dementia and home care workers on the aspirations, experiences and outcomes of providing dementia care in the community in England, Wales and Northern Ireland.
  • A Misspent Opportunity? Inquiry into the funding of the National Dementia StrategyThis report published by the All-Party Parliamentary Group on Dementia (APPG) examines initial progress made by Primary Care Trusts in England towards implementing the National Dementia Strategy for England.
  • Prepared to care – Challenging the dementia skills gapThis report published by the All-Party Parliamentary Group on Dementia (APPG) explores the scale of the challenge in training the caring professions in dementia, and how it may be met.
  • Improving services and support for people with dementiaThis report published by the National Audit Office presents findings from a study into the health and social care services available for people with dementia and their unpaid carers in England and whether they are providing effective and good quality support; and the scope for better use of resources against a background of rising demand.
  • Dementia UKThis report into the prevalence and cost of dementia shows that as the UK's population ages the number of people with dementia will grow substantially. It also shows that dementia costs the UK £17 billion a year.
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