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
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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.
  • The experiences, needs and outcomes for carers of people with dementiaMarch 30 2016This 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 ...
  • Integrated approach to identifying and assessing Carer health and wellbeingMay 17 2016This 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.
  • Grief, loss and bereavementSeptember 22 2014This 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.
  • Loss and bereavement in people with dementiaFebruary 22 2011This 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.
  • Carer’s health checkMay 8 2014A Carer's health check should be offered to any newly-registered carers according to local guidelines or the terms of any Local Enhanced Service.
  • Tailored resource for carers and care providers on supporting people to live well with dementiaSeptember 16 2015This 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 overviewJune 5 2015This report published by Alzheimer’s Disease International explores the main issues affecting women in relation to dementia from an international perspective.
  • What about me? Remembering the needs of carersJuly 29 2010This 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.
  • 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.
  • 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.
  • Caring for CarersMarch 3 2015The 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.
  • Award in Understanding DementiaMarch 18 2015The 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.
  • Dementia CarerJune 9 2014Dementia 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.
  • Caregiver Strain IndexJuly 3 1983The Caregiver Strain Index (CSI) is a tool that can be used to quickly identify families with potential caregiving concerns.
  • 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.
  • Carers AssessmentJanuary 13 2015This 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.
  • 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.
  • Improving services and support for people with dementiaJuly 3 2007This 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.
  • The dementia guideFebruary 22 2014This guide produced by the Alzheimer's Society is for anyone who has recently been told they have dementia.
  • NICE Clinical guideline CG42 Dementia: supporting people with dementia and their carers in health and social careMarch 1 2011This 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.
  • Carers Evidence Summits ebookDecember 5 2014NHS 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.
  • 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.
  • Commissioning for Carers PrinciplesDecember 5 2014This 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.
  • Committed to carers: Supporting carers of people at the end of lifeJuly 30 2011This 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.
  • Carers services guide – Setting up support services for carersOctober 28 2013This 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.
  • Recognised, valued and supported: Next steps for the Carers StrategyDecember 3 2010This 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.
  • A road less rocky – supporting people with dementiaSeptember 4 2013This report published by the Carers Trust highlights that carers of people with dementia are not getting the support and advice they often desperately need.
  • 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.
  • Listen, talk, connect: Communicating with people living with dementiaSeptember 5 2014This handbook published by Care UK is a guide to support carers relatives and friends who want to communicate effectively with someone living with dementia.
  • Commissioning domiciliary care for people with dementia and their carersNovember 28 2009The 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.
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Groups

  • 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
  • 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
  • Dementia UKDementia UK is a national charity, committed to improving quality of life for all people affected by dementia. The charity provides Admiral Nurses, specialist dementia nurses who provide practical and emotional support to family carers of people with dementia.2nd Floor, Resource for London, 356 Holloway Road, London, N7 6PA020 7697 4160
  • 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
  • Carers UKCarers UK is a national membership charity for carers, that is both a support network and a movement for change.20 Great Dover Street, London, SE1 4LX0808 808 7777
  • 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
  • Dementia Action AllianceThe Dementia Action Alliance brings together organisations across England committed to transforming the lives of people with dementia and their carers.
  • Short Breaks NetworkThe Short Breaks Network is the national co-ordinating body for the short break sector in the UK, providing short breaks for disabled children, young people and their families. Melbourne House, 36 Chamberlain Street, Wells, Somerset, BA5 2PJ01749 689 259
  • Carers TrustCarers Trust works to improve support, services and recognition for anyone living with the challenges of caring, unpaid, for a family member or friend who is ill, frail, disabled or has mental health or addiction problems.32-36 Loman Street, London, SE1 0EH0844 800 4361
  • Employers for CarersEmployers for Carers provides practical, ‘hands-on’, help to employers to support carers in their workforce.20 Great Dover Street, London, SE1 4LX020 7378 4956
  • 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
  • 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
  • Carersmart: Making life a little easier for carers Offers, benefits and discounts available exclusively for carers and people with care needs
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