DementiaRoadmap

Helping primary care to support people with dementia

Carer support

Carer support groups offer support and information for people looking after someone with dementia. At some support groups an on-site service with activities is provided for people with dementia to enable the carer to attend.

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Resources
Groups

Resources

  • Dementia: assessment, management and support for people living with dementia and their carersJune 20 2018This 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.
  • 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.
  • 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.
  • 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.
  • 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.
  • 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.
  • 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.
  • 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 dementia guideFebruary 22 2014This guide produced by the Alzheimer's Society is for anyone who has recently been told they have 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.
  • 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.
  • Caregiver Strain IndexJuly 3 1983The Caregiver Strain Index (CSI) is a tool that can be used to quickly identify families with potential caregiving concerns.
  • 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.
  • 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.
  • 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.
  • 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.
  • 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.
  • The Triangle of Care – carers included: A guide to best practice for dementia careSeptember 4 2013The 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.
  • 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.
  • 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.
  • Turning up the volume: unheard voices of people with dementiaJanuary 18 2018This 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 CampaignJanuary 15 2018John’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 ...
  • State of Caring 2017July 11 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.
  • National Audit of Dementia – third reportJuly 13 2017The 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.
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Groups

  • Guildford Carers Support GroupThe peer support group gives people the opportunity to meet with others who understand some of what they are going through. Run by a facilitator the sessions offer a chance to ask questions get information and share experiences in a safe and supportive environment.83 Portsmouth Road, Guildford, GU2 4BS01932 855582http://www.alzheimers.org.uk/
  • Banstead Carers Support GroupThe peer support group gives people the opportunity to meet with others who understand some of what they are going through. Run by a facilitator the sessions offer a chance to ask questions get information and share experiences in a safe and supportive environment.Banstead Civic Centre, The Horseshoe, Banstead, SM7 2BQ01932 855582http://www.alzheimers.org.uk
  • Frimley Carers Support GroupThe peer support group gives people the opportunity to meet with others who understand some of what they are going through. Run by a facilitator the sessions offer a chance to ask questions get information and share experiences in a safe and supportive environment.The Ridgewood Centre, Old Bisley Road, Frimley, Camberley, GU16 9QE01932 855582http://www.alzheimers.org.uk/
  • Woking Carers support groupThe peer support group gives people the opportunity to meet with others who understand some of what they are going through. Run by a facilitator the sessions offer a chance to ask questions get information and share experiences in a safe and supportive environment.Bradbury Centre Smiles Place, Lavender Road, Woking, GU22 8BJ01932 855582http://www.alzheimers.org.uk
  • Egham Carers Support GroupThe peer support group gives people the opportunity to meet with others who understand some of what they are going through. Run by a facilitator the sessions offer a chance to ask questions get information and share experiences in a safe and supportive environment.Runnymede Wellbeing Centre, Manor Farm Lane, Egham, TW20 9HR01932 855582
  • Carers of EpsomCarers of Epsom provides services to carers who support a relative or friend with an illness or disability. The Old Town Hall, The Parade, Epsom, KT18 5AG01372 722269http://www.carersofepsom.co.uk
  • Runnymede Wellbeing CentreThis is a free deep relaxation class for carers which works by releasing tension with gentle floor based therapy. There is no fee and is suitable for all ages and abilities. This a small friendly group with no need to book.Manor Farm Centre, Manor Farm Lane, Egham, TW20 9HR01784 444214http://new.surreycc.gov.uk/social-care-and-health/care-and-support-for-adults/health-and-wellbeing/mental-health/wellbeing-centres#runnymede
  • Ashtead Carers Support GroupThe peer support group gives people the opportunity to meet with others who understand some of what they are going through. Run by a facilitator the sessions offer a chance to ask questions get information and share experiences in a safe and supportive environment.St.Georges Christian Centre, Barnett Wood Lane, Ashtead, KT21 2DA01932 855582
  • Haslemere Carers Support GroupThe peer support group gives people the opportunity to meet with others who understand some of what they are going through. Run by a facilitator the sessions offer a chance to ask questions get information and share experiences in a safe and supportive environment.Haslemere District Hospital, Church Lane, Haslemere, GU27 2BJ01932 855582http://www.alzheimers.org.uk/
  • Crossroads Care Surrey West SurreyCrossroads Care Surrey is a leading registered Charity that provides vital respite breaks to unpaid Carers in Surrey. 1st Floor Suite, Park Barn Centre, Park Barn Drive, Guildford, GU2 8EN01483 447771http://www.crossroadscaresurrey.org.uk
  • Epsom and Ewell Carers Support GroupThe peer support group gives people the opportunity to meet with others who understand some of what they are going through. Run by a facilitator the sessions offer a chance to ask questions get information and share experiences in a safe and supportive environment.Longmead Day Centre, Sefton Road, Epsom, KT19 9HG01932 855582http://www.alzheimers.org.uk
  • Claygate Carers Support GroupThe peer support group gives people the opportunity to meet with others who understand some of what they are going through. Claygate Community Centre, Elm Road, Claygate, KT10 0EJ01932 855582http://www.alzheimers.org.uk/MidSurrey
  • Spelthorne Carers Support GroupThe peer support group gives people the opportunity to meet with others who understand some of what they are going through. Run by a facilitator the sessions offer a chance to ask questions get information and share experiences in a safe and supportive environment.Greeno Centre, Glebeland Gardens, Shepperton, TW17 9DH01932 855582http://www.alzheimers.org.uk/
  • Runnymede Carers Information programmeThe Carer Information and Support Programme 2 is for carers family members and friends of people who have been living with dementia for some time. Topics covered include: understanding how dementia progresses and living well with dementia.The Orchard Day Centre, Staines Lane, Chertsey, KT16 8PS01932 855582
  • Guildford Carers Information programmeThe Carer Information and Support Programme 1 is a series of sessions for carers family and friends of people recently diagnosed with dementia. Topics include: understanding dementia legal and money matters support and care and coping with dementia day to day.83 Portsmouth Road, Guildford, GU2 4BS01932 855582http://www.alzheimers.org.uk/
  • Crossroads Care Surrey North SurreyCrossroads Care Surrey is a leading registered Charity that provides vital respite breaks to unpaid Carers in Surrey. Room 255, Community Links, Spelthorne Borough Council, Knowle Green, Staines-upon-Thames, TW18 1XB01372 469 942http://www.crossroadscaresurrey.org.uk
  • Mid Surrey Moving and Handling ServiceFree practical moving and handling support for carers. Home visiting to assess the carers needs short term loan of equipment training around the use of moving and handling equipment i.e. hoists, wheelchairs etc. The Old Town Hall, The Parade, Epsom, KT18 5AG01372 729947http://www.carersofepsom.co.uk
  • Admiral Nurse Dementia HelplineThe Admiral Nurse Dementia Helpline is for anyone with a question or concern about dementia. From looking out for the first symptoms of Alzheimer’s, to understanding the challenges of living with someone with vascular dementia, Admiral Nurses have the knowledge and experience to understand the situation and suggest answers that might be hard to find elsewhere.2nd Floor, Resource for London, 356 Holloway Road, London, N7 6PA0845 257 9406https://www.dementiauk.org/information-support/admiral-nursing-direct/
  • Dementia Action AllianceThe Dementia Action Alliance brings together organisations across England committed to transforming the lives of people with dementia and their carers.Devon House, 58 St Katharine's Way, London, E1W 1LBhttp://www.dementiaaction.org.uk
  • 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 4160https://www.dementiauk.org
  • 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 3500http://www.alzheimers.org.uk/
  • 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 1053http://www.nhs.uk/CarersDirect/carerslives/updates/Pages/CarersDirecthelpline.aspx
  • 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 7777http://www.carersuk.org/
  • 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 4361http://www.carers.org
  • 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 4956http://www.employersforcarers.org/
  • 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 1492https://www.arts4dementia.org.uk/
  • 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 259http://www.shortbreaksnetwork.org.uk/
  • Carersmart: Making life a little easier for carers Offers, benefits and discounts available exclusively for carers and people with care needshttps://www.carersmart.org/
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