DementiaRoadmap Wales

Promoting living well with dementia across Wales

Planning for the future

When someone is diagnosed with dementia, they should be encouraged to remain as independent as possible, and to continue to enjoy their usual activities and occupations. It is important to encourage the person with dementia to make arrangements for the future including future care options. They may wish to prepare for a time when another person may need to help with their affairs.

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  • 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.
  • 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.
  • Loss and bereavement in people with dementiaFebruary 26 2016This 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.
  • Spirituality and ageing: implications for the care and support of older peopleJanuary 22 2013This briefing paper published the Institute for Research and Innovation in Social Services explores why our ageing population requires person-centred care and developmental support in order to maximise its chances of ageing well.
  • Mental Capacity Act Code of PracticeNovember 21 2014This guidance published by the Office of the Public Guardian explains to people working with or caring for adults who lack capacity to make decisions for themselves the legal responsibilities that must be considered under the Mental Capacity Act 2005.
  • 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.
  • Duty of Candour: Information for all providersMarch 15 2015This document published by the Care Quality Commission sets out how meeting the Duty of Candour regulation will be central to both registration and inspection for NHS bodies and all other care providers regulated by the CQC.
  • Mental Health Act 1983: Code of PracticeJanuary 16 2015The revised code of practice shows professionals how to carry out their roles and responsibilities under the Mental Health Act 1983, to ensure that all patients receive high quality and safe care.
  • Making decisions: who decides when you can’t?April 20 2009This guidance published by the Office of the Public Guardian explains how the Mental Capacity Act 2005 affects anyone who is unable to make some or all decisions for themselves. It provides advice to help people to plan ahead in case they are unable to make and understand decisions in the future.
  • Planning for your future careSeptember 16 2014This guidance published by the National Council for Palliative Care explains advance care planning to the public. It outlines the different options available to people when planning for their end of life care.
  • Making decisions: a guide for people who work in health and social careApril 1 2009This guidance published by the Office of the Public Guardian explains to health and social care workers how the Mental Capacity Act 2005 affects anyone who is unable to make some or all decisions for themselves.
  • Pain in People with Dementia: A Silent TragedyJanuary 7 2015This report, published by Napp Pharmaceuticals, draws on a survey of interviews with experts, major providers of care, and on desk research. It quantifies the problem and sets out the issues in recognising, assessing and managing pain in people with dementia.
  • 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 dementia guideFebruary 22 2014This guide produced by the Alzheimer's Society is for anyone who has recently been told they have dementia.
  • Marie Curie End of Life Care AtlasJuly 4 2014The Marie Curie End of Life Care Atlas is an information portal that gives people who plan and commission end of life care new insight into care provision in their local areas.
  • 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.
  • Commissioning End of Life Care: Act & EarlyJuly 4 2011This 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.
  • Gold Standard Framework Prognostic Indicator GuidanceOctober 4 2011This guidance aims to help GPs, clinicians and other professionals in earlier identification of those adult patients nearing the end of their life who may need additional support.
  • Advance care planning toolkitOctober 19 2012This toolkit developed by the National End of Life Care Programme (NEoLCP) aims to help care providers approach the advance care planning process with confidence and knowledge.
  • RCGP Commissioning Guidance in End of Life CareMarch 4 2013This 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.
  • Deprivation of Liberty Safeguards (DoLS)March 5 2014This factsheet published by the Alzheimer's Society explains the Deprivation of Liberty Safeguards (DoLS), which are part of the Mental Capacity Act 2005. It also outlines the process for getting authorisation for a deprivation of liberty and how to get it reviewed.
  • NICE quality standard QS13: End of life care for adultsNovember 17 2011This quality standard published by the National Clinical Institute for Health and Clinical Excellence (NICE) defines clinical best practice in provding end of life care for adults.
  • 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.
  • Treatment and care towards the end of life: good practice in decision makingNovember 4 2010This guidance provides a framework for good practice aimed at doctors when providing treatment and care for patients who are reaching the end of their lives.
  • Advance decisionsMarch 5 2014Advance Directives (also referred to as advance decisions to refuse treatment, ADRTs, or living wills) may be drawn up by any person with capacity to do so who is over the age of 18, to determine what treatment they might receive in the event of them losing capacity to make decisions under the Mental Capacity Act 2005.
  • Commissioning person-centred end of life careOctober 17 2012This 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.
  • End of life care for people with dementia commissioning and benchmarking toolJune 25 2010The commissioning and benchmarking tool helps you to assess local service requirements using the indicative benchmark as a starting point. With knowledge of your local population and its demographic, you can amend the benchmark to better reflect your local circumstances.
  • Mental Capacity Act 2005March 5 2014The Mental Capacity Act 2005 came into force in 2007 and affects all those working in health and social care involved in caring for people over the age of 16 who are unable to make some or all decisions for themselves.
  • End of life care for people with dementia commissioning guideJune 8 2010This commissioning guide provides support for the local implementation of NICE clinical guidelines through commissioning, and is a resource to help statutory and voluntary health and social care professionals in England to commission integrated end of life care (EOLC) services for people with dementia.
  • Matters of Life and Death: Helping people to live well until they dieAugust 4 2012This guidance aims to support practitioners to implement the End of Life Care Patient Charter, jointly produced by the Royal College of General Practitioners and the Royal College of Nursing.
  • 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.
  • 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.
  • UnforgettableApril 4 2019Unforgettable.org is a website offering advice and community as well as products to help improve the lives of people with dementia. It provides some interesting blogs of people's experiences with dementia including real stories and diaries.
  • Lasting Power of AttorneyMarch 28 2019After a diagnosis of Dementia, it is worth forward planning including setting up Lasting Power of Attorney for both health and financial affairs. 
  • Eye Tests at HomeApril 4 2019Eye care is important for people with dementia and may be provided at home or in a care home. Eye examinations are free for over 60's and for some younger people with dementia, as are home visits if it is difficult to get to a practice. Benefits may be available to help towards the cost of glasses. 
  • A Guide to Respite for People Affected by DementiaNovember 26 2018This guide gives carers and people living with dementia the information they need when considering respite, to help them to explore respite alternatives, and sets out their rights.
  • Advance Care PlanningMarch 28 2019If 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.
  • 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.
  • Preparing for a Social Services Care Needs AssessmentMarch 28 2019Tips 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  
  • Social Services Support for DementiaEven 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.
  • NHS Continuing Healthcare and NHS-funded Nursing CareNHS 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 ...
  • 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.
  • Gwent Access to AdvocacyAugust 30 2019Gwent Access to Advocacy GATA provides a single point of access for advocacy services in Gwent covering Blaenau Gwent, Caerphilly, Monmouthshire and Torfaen. (For Newport contact Dewis Centre for Independent Living (CIL))
  • 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.
  • Independent Living by MelinNovember 1 2019Melin's Independent Living team manages over 850 properties across Blaenau Gwent, Torfaen, Newport, South Powys and Monmouthshire. These are designed for single people and couples aged 55 and over, for those with continuing health care needs, or residents who need some additional support. They also have three extra care schemes designed to meet residents' changing care support needs.
  • ENABLE – Support for Independent LivingENABLE provides support for independent living through adaptations, so people can access all the key facilities in their homes. Whether you own or rent your home, the basic arrangements are the same.
  • Care & Repair – help to repair, adapt and maintain your homeOctober 23 2019Care & Repair can provide help to repair, adapt and maintain your home. For older home owners and private tenants.
  • 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."
  • Independent Living Equipment in GwentNovember 1 2019Cefndy-Medequip work with local authorities and the NHS to provide the community equipment service in Gwent. They specialise in aids and equipment for the home, mobility, bathrooms, bedrooms, kitchen and dining, living room and outdoors. Their catalogue has a section called "Dementia Friendly Collection".
  • Living with early-stage dementiaNovember 20 2019Living with early-stage dementia is a comprehensive guide published by Age UK, also known as Age Cymru in Wales.
  • Caring for someone with dementiaCaring for someone with dementia is a comprehensive booklet published by Age UK, whose network includes Age Cymru in Wales.
  • Mouth care for people living with dementiaMouth 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.
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