DementiaRoadmap

Helping primary care to support people with dementia

Caring well

GPs and the primary care team can provide carers with invaluable support, advice and information. For example, they can provide information and advice on medical conditions of and treatments for the person being cared for to help the carer feel more confident in their caring role.

Primary care provision includes many services that can support carers in their caring role and in looking after their own health including, occupational therapists, physiotherapists, continence advisors and dieticians. The primary care team may also be able to provide supporting letters and information to enable carers and the person being cared for to access benefits such as Attendance Allowance or for the local housing department or blue badge scheme.

It is important for GPs to record that someone is a carer on their medical records. Knowing that someone is a carer and likely to be under pressure at times, can help the primary care team to offer the advice and support carers need. For example, carrying out home visits to the carer or the person being cared for if the caring responsibilities make it difficult to attend appointments at the surgery. The primary care team may also be able to arrange appointments for both the carer and the person being cared for at the same time to avoid having to visit the surgery twice.

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Resources

  • Useful tips on the COVID-19 vaccine for people with dementiaThis briefing developed by the Royal College of Psychiatrists, working with Dementia UK, includes useful tips for giving the COVID-19 vaccine without causing distress and how to explain the vaccination to someone who is living with dementia.
  • Dementia wellbeing in the COVID-19 pandemicThis resource is primarily for clinicians working with people with dementia, but can also be used by carers and people with dementia. This document takes the Dementia Well Pathway and sets out the adjustments and amendments needed to respond to the COVID-19 pandemic. It highlights key priorities and actions for each step in the pathway.
  • A Whole Systems Approach to understanding psychological symptoms in delirium and dementiaThis Yorkshire and the Humber Dementia and Older Peooples Mental Health Clinkcal Network event chaired by Dr Rod Kersh provided attendees with an opportunity to hear from local and national innovators and carers to better understand psychological symptoms in delirium and dementia.
  • 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.
  • 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.
  • John’s CampaignJohn’s Campaign is about the right of people who care for someone living with dementia to be able to stay with them – and the right of people with dementia to be able to have a family carer stay with them. It applies to all ...
  • 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.
  • Integrated approach to identifying and assessing Carer health and wellbeingThis toolkit published by NHS England clarifies the new duties on NHS organisations under the Care Act 2014 and the Children and Families Act 2014, provides a template Memorandum of Understanding (MOU) to support joined up working locally, and includes examples of positive practice of work that have proven successful in supporting carers and their families.
  • The experiences, needs and outcomes for carers of people with dementiaThis comprehensive literature review undertaken by the the Association of Dementia Studies at the University of Worcester, examines the experiences and needs of carers of people with dementia and the evidence of outcomes produced from a wide range of interventions. Download The experiences, needs and outcomes ...
  • 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.
  • Tailored resource for carers and care providers on supporting people to live well with dementiaThis resource published by the National Institute for Health and Care Excellence (NICE) highlights the key messages from 10 quality statements which form the quality standard for supporting people to live well with dementia and shows what they mean for carers and care providers.
  • 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.
  • The Sound Doctor: Getting the best out of life with dementiaA series of films providing information to families living with dementia through the entertaining medium of TV/Film.
  • 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.
  • Caring for CarersThe Caring for Carers Hub developed by the Royal College of General Practitioners is a web based tool that can help primary care staff to more effectively support carers and the people they care for.
  • 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.
  • Carers AssessmentThis factsheet published by Carers UK outlines the Carers Assessment, a legal entitlement which explores how being a carer affects someone, how much caring they can realistically do, and any help they may need.
  • 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.
  • Carers Evidence Summits ebookNHS Improving Quality has produced an ebook to share the Commitment to Carers achievements over the last year. It includes the findings from the regional Carers Evidence Summits and links to over 50 case studies.
  • Grief, loss and bereavementThis factsheet published by the Alzheimers Society looks at some of the feelings carers may experience in caring for someone living with dementia and suggests ways to cope. It also looks at supporting a person with dementia to cope with grief and bereavement.
  • Listen, talk, connect: Communicating with people living with dementiaThis handbook published by Care UK is a guide to support carers relatives and friends who want to communicate effectively with someone living with dementia.
  • Dementia CarerDementia Carer is a website that provides access to a wide range of video clips featuring carers discussing what helps them cope with issues they encounter in caring for someone with dementia.
  • Carer’s health checkA Carer's health check should be offered to any newly-registered carers according to local guidelines or the terms of any Local Enhanced Service.
  • The dementia guideThis guide produced by the Alzheimer's Society is for anyone who has recently been told they have dementia.
  • The Care Bill: factsheetsThese 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.
  • 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.
  • Carers services guide – Setting up support services for carersThis guide published by Help the Hospices provides a framework for organisations planning to set up support services for carers of people with life-limiting and terminal illnesses.
  • The Triangle of Care – carers included: A guide to best practice for dementia careThe Triangle of Care is a model for dementia care that supports a partnership approach between the person with dementia, the staff member and carer. It is designed to ensure that carers are appropriately included and involved in the care of people with dementia, particularly in hospital settings.
  • A road less rocky – supporting people with dementiaThis report published by the Carers Trust highlights that carers of people with dementia are not getting the support and advice they often desperately need.
  • 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.
  • QS30: Supporting people to live well with dementiaThis quality standard, published by the National Institute for Health and Care Excellence (NICE), covers the care and support of people with dementia.
  • Committed to carers: Supporting carers of people at the end of lifeThis report published by the Marie Curie Cancer Care draws on the direct experiences of people caring for someone at the end of life and on Marie Curie Cancer Care’s years of expertise of caring for carers.
  • NICE Clinical guideline CG42 Dementia: supporting people with dementia and their carers in health and social careThis guideline, published by the National Institute for Health and Clinical Excellence (NICE), makes specific recommendations on Alzheimer's disease, dementia with Lewy bodies (DLB), fronto temporal dementia, vascular dementia and mixed dementias, as well as recommendations that apply to all types of dementia.
  • Loss and bereavement in people with dementiaThis leaflet published by Alzheimer Scotland addresses the lack of help and information available for formal and informal carers of people with dementia who are bereaved.
  • Recognised, valued and supported: Next steps for the Carers StrategyThis strategy identifies the actions that the Government will take between 2011-15 to support its priorities to ensure the best possible outcomes for carers and those they support.
  • What about me? Remembering the needs of carersThis short leaflet published by Marie Curie Cancer Care is a good starting point for anyone working in health, social care or other setting who is likely to come into contact with people approaching the end of life and their carers.
  • Commissioning domiciliary care for people with dementia and their carersThe purpose of this paper is to assist commissioners in ensuring that homecare for people with dementia is appropriate to their needs and/or the needs of their carers.
  • 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.
  • Caregiver Strain IndexThe Caregiver Strain Index (CSI) is a tool that can be used to quickly identify families with potential caregiving concerns.
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