DementiaRoadmap Wales

Promoting living well with dementia across Wales

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

  • Accessible Information StandardJuly 28 2015The Accessible Information Standard tells organisations how they should ensure that disabled patients receive information in formats that they can understand and they receive appropriate support to help them to communicate.
  • Fulfilled Lives, Supportive Communities: A Strategy for Social Services in Wales over the next decadeFebruary 21 2007This strategy describes how modern accessible and responsive social services, delivered flexibly, consistently and sustainably across organisational boundaries will contribute to a better Wales and to improving the lives of its citizens.
  • Grief, loss and bereavementFebruary 22 2016This 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 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.
  • 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.
  • John’s CampaignJanuary 15 2018John’s Campaign is about making carers of people with dementia welcome on hospital wards and reflects a positive attitude towards the importance of carers and sensitivity to their needs.
  • Newport Citizens AdviceNovember 1 2019The Citizens Advice Bureau (CAB) service offers free, confidential, impartial and independent advice. Their Newport city centre office is at 8 Corn Street, Newport NP20 1DJ. 
  • Disabled Persons Bus PassFebruary 28 2019If you have to surrender your driver's license due to being unfit to drive on medical grounds, you can apply for a free Disabled person’s travel pass from your local council.
  • Dementia ConnectApril 26 2018Dementia Connect is Alzheimer's Society's comprehensive services directory for people affected by dementia in England, Wales and Northern Ireland.
  • 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.
  • 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.
  • City of Newport Campus, Coleg GwentFebruary 28 2019City of Newport Campus of Coleg Gwent is the first educational establishment in Wales to have a "Dementia Friendly" campus. 
  • The dementia guideFebruary 22 2014This guide produced by the Alzheimer's Society is for anyone who has recently been told they have dementia.
  • Caring for someone with dementiaNovember 20 2019Caring for someone with dementia is a comprehensive booklet published by Age UK, whose network includes Age Cymru in Wales.
  • 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.
  • Grass RoutesFebruary 28 2019Grass Routes provides community transport for people in Newport area unable to use local bus services.
  • 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 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.
  • Direct PaymentsMarch 7 2019A Direct Payment is a payment made to an individual or their Carer by Social Services to buy the support they have been assessed as needing.
  • CEA Cinema CardThe CEA Card is a national card scheme developed for UK cinemas by the UK Cinema Association (UKCA). The Card enables a disabled cinema guest to receive a complimentary ticket for someone to go with them when they visit a participating cinema.  
  • 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.
  • 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.
  • Dewis CymruApril 27 2018Dewis Cymru is a website that provides information and advice about well-being. In addition to health information, Dewis Cymru provides information about people and services in your area that can help you with the things that matter to you.
  • 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.
  • The Herbert Protocol for Missing People with DementiaJanuary 22 2020The Herbert Protocol asks carers, family members and friends of people with Dementia, to complete a form, recording all vital details about their loved one. This information can then be shared quickly with the relevant agencies should their loved one be reported missing.
  • 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.
  • The Attic ProjectNovember 1 2019The Attic Project provides support to older people in Cardiff, The Vale of Glamorgan and Newport who need to make space in their homes by decluttering, sorting and clearing possessions. They can help you record your precious memories of treasured items to share and pass on to your family, friends and the community.Your memories can be linked to old letters, books, clothes or other much loved items.
  • Information about Lewy Body DementiaApril 27 2015This handbook published by the Lewy Body Society aims to help people with Lewy body dementia (LBD), their families and health care professionals learn more about the disease and find ways and resources to help them cope with it.
  • 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.
  • 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.
  • 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.
  • 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.
  • Caregiver Strain IndexJuly 3 1983The Caregiver Strain Index (CSI) is a tool that can be used to quickly identify families with potential caregiving concerns.
  • 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.
  • Priority Services RegisterOctober 11 2019Did you know that every gas, water and electricity supplier – the companies you pay your bills to, and your electricity distribution network, has what’s called a Priority Services Register (PSR)? The Priority Services Register (PSR) is a free service offered throughout the energy industry available to domestic customers across England, Wales and Scotland. Through the PSR, eligible customers can receive additional services in relation to their communication, access and safety needs.
  • 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.
  • How would I know? What can I do?December 6 2012This guide, developed by the National Council for Palliative Care (NCPC), provides advice for carers and those who work with people with dementia on how to help with pain and distress in people with the condition.
  • 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.
  • 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.
  • 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.
  • Social Services Support for DementiaMarch 28 2019Even if you feel you don't need support now, it's a good idea to know what's available and plan ahead. The adult social services department of your local council can help with your personal care and day-to-day activities. The first step is to arrange a needs assessment.
  • Turning up the volume: unheard voices of people with dementiaJanuary 23 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. It provides an insight into the gap between the things that people living with dementia need to live well and their day-to-day reality.
  • Guidelines for Helping the Confused Older PersonMay 16 2019These guidelines are designed to help someone be able to provide assistance to an older person experiencing confusion or the cognitive changes associated with dementia although may prove useful for any age group with dementia.
  • 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.
  • NHS Continuing Healthcare and NHS-funded Nursing CareMarch 28 2019NHS Continuing Healthcare  If you have complex health and care needs, the NHS may cover the cost of all your care at home or in a care home, including the services you receive from the local council. This is called continuing healthcare and is funded ...
  • Dementia Action Plan for Wales 2018 – 2022November 20 2019The Welsh government have adopted the Dementia Action Plan for Wales 2018 - 2022, with Vaughan Gething, Cabinet Secretary for Health and Social Services, stating that,  "Our vision is for Wales to be a dementia friendly nation that recognises the rights of people with dementia to feel valued and to live as independently as possible in their communities."
  • State of Caring 2017August 25 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.
  • Disabled Person’s RailcardMarch 28 2019The Disabled Persons Railcard is for people with a disability that makes travelling by train difficult. It entitles you to qualify for 1/3 off rail fares for you and a companion travelling with you.
  • Advance Care PlanningIf you were to lose the capacity to make decisions about your life today, what are the important things you would like those caring for you to know about you and what you would want to happen? One way of making people aware of your wishes is by a process that is called advance care planning.
  • Preparing for a Social Services Care Needs AssessmentTips for people with Dementia on preparing for a social services care needs assessment can be found on the Alzheimers UK website, link below.  http://www.alzheimers.org.uk/get-support/legal-financial/dementia-care-needs-assessment  
  • The Royal British Legion – Admiral Nurse ServiceApril 24 2019The Royal British Legion Admiral Nurses offers specialist support, information and advice to the carers of people with dementia. It is available to anyone who has served in the British Armed Forces their family and carers.
  • Benefits for people affected by dementiaApril 11 2019The Alzheimer's Society website provides information about a number of benefits that may be available to you. This includes details on what and how you can claim.
  • Useful Apps for Dementia Patients & CarersApril 25 2019There are many apps available that can be downloaded to a smartphone or tablet  that could be beneficial to people with dementia. Apps are available for daily aid, memory training, relaxation, care giver information and games.
  • Carers WalesNovember 1 2019Carers Wales wants a society that respects, values and supports carers. To do this they: give expert advice, information and support. connect carers so no-one has to care alone. campaign together for lasting change. innovate to find new ways to reach and support carers. Check ...
  • Mouth care for people living with dementiaNovember 20 2019Mouth care for people living with dementia is a leaflet published by Aneurin Bevan Community Dental Service to provide information for carers. Information includes: mouth care, diet, brushing teeth and gums, denture care, and visiting the dentist.
  • Dementia wellbeing in the COVID-19 pandemicSeptember 28 2020This 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.
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