Dementia Action Plan for Wales 2018-2022 - Taking Wales Forward - GOV.WALES
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2 Contents 7 Chapter 1 Risk reduction and delaying onset 9 Chapter 2 Raising awareness and understanding 12 Chapter 3 Recognition and identification 15 Chapter 4 Assessment and diagnosis 18 Chapter 5 Living as well as possible, for as long as possible with dementia 23 Chapter 6 The need for increased support 28 Chapter 7 Supporting the implementation 31 Annex 1 Meeting the needs of specific groups 33 Annex 2 Detailed action Plan 43 Annex 3 How we will know – High Level Performance Measures © Crown copyright 2018 WG31821 DIGITAL ISBN: 978-1-78903-626-8
3 Ministerial Foreword Vaughan Gething Cabinet Secretary for Health and Social Services We have a clear vision 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. We want to create a society without This plan positively responds to this stigma – where people living with challenge; setting out the range of dementia continue to go about their day stakeholders who can support this agenda to day life with the wider public who are and the actions required to make a real understanding and know how to provide change. It has been developed with those support. who know most about what needs to be done to improve truly person-centred This is not something that health and dementia services – those with lived social services can do alone. experience of dementia, their families and Achieving a dementia friendly nation carers and service providers. requires a cross-Government, multi- As a signatory to the Glasgow Declaration1 agency and society wide response. the Welsh Government has previously Our national strategy, Prosperity for All, committed to promote the rights, dignity challenges us to work differently, not just and autonomy of people living with across portfolios within Government, but dementia. Through our engagement also with our partners and stakeholders. with stakeholders we heard about the We recognise that dementia is a significant positive work of Dementia Action Alliance health and social care issue which in developing a series of statements with impacts not only on those living with people living with dementia and their dementia, but on their families, friends and carers2. carers too. We also recognise that whilst dementia is more common in older people, we also need to support those with young onset dementia. 1 http://www.alzheimer-europe.org/Policy-in-Practice2/Glasgow-Declaration-2014 2 Further information can be found at: https://www.dementiaaction.org.uk/nationaldementiadeclaration
4 These are: • We have the right to be recognised people with dementia. We have also as who we are, to make choices supported closer working between about our lives including taking primary care and residential homes risks, and to contribute to society. through our link nurses. In response Our diagnosis should not define us, to the most recent evidence we have nor should we be ashamed of it. shifted a focus to risk reduction to raise awareness of the steps a person • We have the right to continue with can take to reduce the risk, or delay day-to-day and family life, without onset, of certain dementias. discrimination or unfair cost, to be accepted and included in our This document responds to what we communities and not live in isolation have been told through the extensive or loneliness. engagement and consultation process and emphasises the right of people • We have the right to an early and living with dementia to person- accurate diagnosis, and to receive centred, coordinated and quality care. evidence based, appropriate, From this engagement we know that compassionate and properly funded services need to be adaptable to meet care and treatment, from trained the individual needs of people with people who understand us and how dementia – for instance those with dementia affects us. This must meet young onset dementia and those with our needs, wherever we live. other conditions where dementia is • We have the right to be respected, more common. The quotes embedded and recognised as partners in care, throughout the document are taken provided with education, support, directly from our consultation and services, and training which enables represent the expectations of those us to plan and make decisions affected by dementia. about the future. Our service and community response • We have the right to know about needs to be equitable – whether you and decide if we want to be live in a rural or remote area or in a involved in research that looks at town, and it needs to meet diverse cause cure and care for dementia needs, for instance people with and be supported to take part. protected characteristics who may be living with dementia and people We have adopted the principles of who may be able to understand only these dementia statements which not their first language as their condition only underpin our plan, but will be progresses. These principles of considered in the implementation of all equitable access will underpin each of its actions. the actions set out in the plan. Please see further information in We have a strong platform to build annex 1. on. In the last few years we have provided additional funding to support As a result of views expressed in improvements in dementia care. This our consultation and engagement includes the introduction of dementia processes we have structured support workers, occupational therapy this action plan around outcomes support in older people mental health which follow a pathway approach to units, and teams working within dementia care. our district hospitals to support
5 These outcomes are: • Individuals will understand the steps To support the delivery of our vision we they can take to reduce their risk, or are investing an additional delay the onset, of dementia. £10 million a year from 2018/19 to support the delivery of key actions in • The wider population understands this document, which include the challenges faced by people : living with dementia and are aware • Developing ‘teams around the of the actions they can take to individual’ to provide additional support them. support for people with dementia • People are aware of the early signs and their families/carers. of dementia; the importance of a • Reviewing and standardising the timely diagnosis; and know where role of dementia support workers to go to get help. – increasing their numbers as • More people are diagnosed earlier, required. enabling them to plan for the future • Development of an All Wales and access early support and care Dementia Allied Health Practitioner if needed. Consultant post which will give • Those diagnosed with dementia advice and support to health boards and their carers and families are and local authorities to drive forward able to receive person-centred care service improvements. and support which is flexible. • Increasing the rate and timeliness of • Research is supported to help us dementia diagnosis. better understand the causes and • Strengthening collaborative working management of dementia and between social care and housing to enables people living with dementia, enable people to stay in their homes including families and carers, to be longer. co-researchers. • The roll out of the ‘Good work • Staff have the skills to help them – Dementia Learning and identify people with dementia and Development Framework’ to to feel confident and competent in enable people who work with supporting individual’s needs post- those living with dementia to have diagnosis. the skills to recognise symptoms earlier and help them feel confident and competent in caring for and supporting those living with dementia. • Introducing the principles of ‘John’s Campaign’ across all health boards and trusts.
6 Alongside this document we will also How will we measure publish a compendium of notable practice to assist service planners and progress? commissioners in the implementation of this plan. Progress against delivery of the plan will be overseen by a Dementia Delivery We will also ensure that we have Assurance and Implementation Group mechanisms in place to continue to (DDAIG). Membership of this group engage and listen to the experts by will include people living with dementia experience. and their carers and families. Progress The action plan, a result of working against this plan will also be a key vehicle with and listening to a wide range of for demonstrating achievements and stakeholders, is ambitious and areas for improvement outlined within the person-centred. This co-productive Health and Care Standards for Wales. approach will continue throughout its The actions in this plan are summarised implementation and will involve people in Annex 2 to assist with monitoring living with dementia, their families progress. These will be formally and carers being equal partners. reviewed after three years to ensure they remain ambitious and relevant. It is also recognised that through the implementation of any plan things do change and in certain areas we have detailed that further work is needed. This will be reflected in the work of the DDAIG.
7 Risk reduction and delaying onset There is increasing evidence that there in recognition of the importance of are steps people can take to reduce their improving awareness that simple risk of developing certain dementias changes to lifestyle can reduce the risk of or to delay their onset3,4 In 2014 we dementia. signed up to the Blackfriars Consensus5 ‘I can make informed choices about my lifestyle...’ 3 http://medicine.cf.ac.uk/news/benefit-healthy-lifestyle/ 4 https://www.scie.org.uk/dementia/symptoms/diagnosis/risk-factors.asp 5 http://nhfshare.heartforum.org.uk/RMAssets/Reports/Blackfriars%20consensus%20%20_V18.pdf
8 Since then we have published guidance on dementia risk reduction and we have We will: launched national campaigns to increase • Ensure that risk reduction messages awareness that it is never too early or too are included in relevant public health late to make changes to your lifestyle, policies and programmes. by following six simple steps. • Promote action across the six These are: steps to support people to change behaviours and reduce their risk of dementia. 1 Be physically active • Ensure that people living with dementia receive advice about the 2 Maintain a healthy weight changes they could be supported to make to increase their general health and wellbeing. 3 Be socially active 4 Avoid drinking too much What will be different: alcohol People understand the steps they can take to reduce their risk, or delay the 5 Stop Smoking onset of certain dementias. 6 Commit to review your health Nothing about us Healthy lifestyle choices remain beneficial without ALL of us – how following a diagnosis and can help can we feel valued if we people to feel better, improve wellbeing are not included from and help maintain mobility. the very beginning We shall continue to respond to the emerging research to ensure that people can access evidenced based advice and information to lower their risk of dementia. We will need to make this information available across all the different groups in Wales.
9 Raising awareness and understanding Our consultation has told us that stigma We have also been told that a diagnosis and discrimination can result in a fear of dementia can make people feel and reluctance to seek help and advice excluded and less welcome in everyday when the early signs of dementia arise. activities they used to enjoy, leading to feelings of loneliness and isolation. ‘I feel included and valued in my community…’
10 Some people also reported a lack of We need to make sure that all sections understanding from family members, and of our population have the same among health professionals, including opportunities. their GPs. Overcoming these issues will require continued public education initiatives We will: and awareness training so that more individuals, communities, businesses • Work with the third sector and and public authorities have a better people with lived experience to understanding of dementia. increase the number of people in Wales who are able to recognise This will enable people to understand dementia through expanding the challenges faced by those living with initiatives such as dementia dementia and how they can make small friends and dementia supportive changes that could help. communities / organisations. Those that are involved in the planning • Local authorities and health boards and designing of public spaces such as to work with local communities shops, parks and transport systems, and third sector organisations to will be encouraged to have processes encourage them to open their in place to consider and involve people services so that people with living with dementia in their design and dementia, their families and carers audit processes in order to understand can participate. their needs. • Publicise and actively encourage Wales should be a place educational settings to use the where people with “Creating a Dementia Friendly Generation” resources developed dementia feel understood, by the Alzheimer’s Society to build engaged, included and inter-generational understanding valued and awareness. • Ensure NHS-employed staff who come into contact with the public (including porters, receptionists and medical / support staff) receive an appropriate level of dementia care training (as specified in – ‘Good work – Dementia Learning and Development Framework’6). Lower levels of awareness about dementia and the existence of stigma within some minority ethnic communities in Wales can also result in these groups being under-represented in dementia services7. 6 https://socialcare.wales/resources/good-work-dementia-learning-and-development-framework?record-language-choice=en-cy 7 https://www.scie.org.uk/publications/briefings/briefing35/
11 We will: • Work with local authorities, local to improve access to passenger health boards and Public Health transport information, enabling Wales so the needs of people living people to plan and undertake with dementia are considered as journeys on the public transport part of planning processes. network. • Ensure that transport planners • Develop and undertake training / operators consider the needs designed to raise awareness of people living with dementia in amongst transport workers of the the development of their services barriers that are encountered by including major contracts such as those with dementia when using the ‘metro’ and the rail franchise, public transport. What will be different: People understand the challenges faced by people living with dementia and are aware of the actions they can take to support them.
12 Recognition and identification We understand that people may be We also want professionals to know what reluctant to go to the doctor when they options are available for treatment and are worried that they may have dementia. support if they refer people for a formal We need to ensure people are aware of diagnosis. the benefits of a timely diagnosis. ‘I am aware of the signs and symptoms of dementia and I know where to go to seek help if I am worried...’
13 Many people are worried about dementia as they grow older, but some We will: symptoms similar to those of dementia • Ensure workforce plans are in can occur for other reasons, such as line with the principles of ‘Good depression, infections, or as side effects Work9’ to enable key front line staff of medication. An early assessment is to recognise the early signs of important to identify other conditions dementia. which may be treatable. • Ensure training for staff who work with people who have a higher risk We will: of developing dementia (such those • Encourage GPs to take up the working in learning disabilities, dementia component in the mental substance misuse, ambulance and health Directed Enhanced Service prison services). (DES) introduced in 2017. • Review and update, as needed, the A consistent pathway will be developed dementia awareness DVD for GPs. to enable people to get a timely diagnosis and care and support. This will include • Ensure that primary care practices closer relationships with GPs and other are able to evidence that they are health professionals working in the dementia supportive8. community to promote case finding and • Work with stakeholders to deliver appropriate assessment (for example the most effective ways to increase reviewing medication and identification awareness of dementia to ensure of other conditions) before referral to timely diagnosis. memory services. The pathway will also focus on those outcomes which matter to the individual, People have the right to a timely and cover the steps needed to ensure diagnosis and our consultation told us that people with dementia are able to that more needs to be done to ensure see the right professional with the right this happens. To enable people to skills and at the right time – this includes seek help earlier, more non-specialist access to advice on issues such as professionals across the statutory and finance and employment. third / independent sectors need to be trained to identify those who might Those who are diagnosed with a have the early signs and symptoms of cognitive impairment other than dementia, and have clear information dementia, as well as those diagnosed about where and how to refer on with dementia, must be offered an appropriately. The roll out of the explanation of the difficulties they may ‘Good Work’ framework will be an experience and be provided with health integral part of dementia learning and information and advice on memory training programmes. strategies. A person with dementia may also have The stronger the web of other symptoms such as sensory loss, support we weave, the perception or communication difficulties – less likely people will fall therefore a variety of strategies will need to be considered and offered. through 8 http://www.olderpeoplewales.com/Libraries/Uploads/Dementia_Supportive_A_Checklist_of_Actions_for_Public_Services.sflb.ashx 9 https://socialcare.wales/resources/good-work-dementia-learning-and-development-framework – more information on Good Work is available in the ‘learning and development’ section.
14 We will: • Develop a consistent clearly • Agree a common approach understood diagnosis, care and to cognitive impairment (other support pathway which incorporates than dementia) assessment and standards of care and outcome intervention, with support offered to measures. primary care by specialist memory assessment services where required. What will be different: People are aware of the early signs of dementia; the importance of a timely diagnosis; and know where to go to get help.
15 Assessment and diagnosis We know that a timely diagnosis of and emotional support at an early dementia allows those affected to take stage can have a significant impact on the right steps to plan ahead and access the way someone is able to manage information, care and support. We also their condition over time and live know that accessing practical independently. ‘I have a timely diagnosis which enables me to make decisions about my care and support...’
16 I want to have access to We will: a doctor to check if I have • Continue to implement the dementia recommendations from the memory assessment service national audit However, despite small increases in and set targets for health boards to recent years, currently only around 53%10 increase diagnosis rates by at least of individuals in Wales with dementia 3% a year. have a diagnosis. It is vital therefore that we take action to improve the rate of • Work with stakeholders to identify increase in diagnosis rates. and utilise the most robust clinically validated dementia assessment Our consultation has told us that people tool(s) for use in the Welsh want the diagnosis process to be language and commission research handled in an empathic manner, and as necessary. one which leads to the provision of an appropriate level of support in the right • Scope access to, and provision of, place at the right time. They also want memory assessment services to the process to be consistent and timely, those with learning disabilities. accessed close to home and responsive • Ensure compliance with the Welsh to the needs of their carers and families. Government’s All–Wales Standards We recognise that dementia is not a for Accessible Communication and single condition and receiving a diagnosis Information for People with Sensory can be complicated, for instance by Loss. cultural and language interpretations, or • Scope a programme of work that other complexities such as sensory loss will capture, record, share and or a learning disability. We need to work flag the communication needs of with our partners and stakeholders to service users with sensory loss. remove these barriers to support and care. As a first step we need to ensure that Dementia is life changing – health professionals are well supported not life ending to ensure that they have the right knowledge and skills to make an The consultation also told us that people appropriate diagnosis. They also need to with a diagnosis and their families and be made aware of the help and support carers want someone to talk to about it, that is available post diagnosis so they and what it means to them. They want can be more confident that a diagnosis help to adjust to the diagnosis, plan for will lead to an individual and their family the future and to be pointed to the right feeling better supported. information and support. In response, we will review and promote our dementia Furthermore, diagnostic tools must be helpline11. available in a variety of languages, which are culturally appropriate, and in various As part of this review we will ensure that formats to ensure that health boards can we are able to sign post to the relevant meet the needs of their population. services whether statutory, third sector or peer support. 10 http://gov.wales/statistics-and-research/general-medical-services-contract 11 Helpline offers information, support and agency signposting for anyone living with dementia or their supporters. They can be contacted on Freephone 0808 808 2235 or text ‘help’ on 81066
17 We will also review the role of dementia support workers alongside the We will: development of the ‘teams around the • Review and promote the all-Wales individual’ (please see page 15 and 16 for dementia helpline as a key source more information) to ensure that a person of information. living with dementia has a key point of contact to provide appropriate tailored • Review the capacity and role of information and support as well as dementia support workers to sign-posting. ensure all individuals with dementia living in the community have a This should include making sure that dedicated support worker working people are connected to local support to agreed occupational standards. networks that are available, including peer support options and enabling • Ensure every diagnosed person access to other financial and practical with dementia receives a tailored support. People living with dementia also information pack in an accessible need to be provided with information format including, as needed, digital on what adjustments could be made to options, and is offered access their lifestyle or environment to help them to a dementia support worker or remain as fit and healthy as possible. equivalent. This needs to be made equally accessible • Ensure that carers will be offered for those in remote, rural and urban an assessment of their own needs areas, and provided in a way that meets and, if eligible, a support plan will language and cultural needs. be developed with them to identify appropriate support (in line with Opportunities for peer support for both the Social Services and Well-being people living with dementia and their (Wales) Act 2014). carers also need to be considered as part of this work. Getting a diagnosis of dementia is usually What will be different: a process and not the result of a single More people are diagnosed earlier, test. This can take time if a person is enabling them to plan for the future referred at an early stage of the condition and to access early support and care and a ‘watch and wait’ approach may be if needed. necessary to make a confident diagnosis. A working diagnosis of dementia, subject to a final confirmation, can be helpful so that individuals can access information and support at the earliest opportunity.
18 Living as well as possible, for as long as possible with dementia We have listened carefully to the lived how individuals have different ways of experiences of those with dementia, as coping with and adjusting to the changes well as families and carers, and heard experienced. ‘My support worker helps me and my carer access a range of support for me to remain in my community…’
19 Universally we have heard that we need • Supporting people in the early stages to develop a support system that is: of dementia to ensure they have the information and opportunity to make • Available within the community to decisions about their own future care support people to remain in their and support. This should consider homes for as long as possible. lasting powers of attorney12 and • Flexible – with services able to respond advanced decisions13. For further to an individual’s needs rather than information please see section on expect people to adapt to what exists ‘capacity for decision making’. already. • Enabling access to cognitive stimulation programmes, such as • Individualised – with a focus on what teaching and practising memory can be done, rather than what can no strategies, which can improve both longer be done. cognitive function and quality of life. • Able to respond to the needs • Ensuring access to allied health of carers. professionals (such as physiotherapists • Able to respond to the language and and occupational therapists) and re- cultural needs of their population. ablement / rehabilitation services to delay loss of skills and maintenance of • Able to meet specific needs such as life roles for longer. those resulting from sensory loss, learning disabilities, or young onset • Enabling access to assistive dementia. technology and / or equipment and making adaptations to the environment This means that ‘one size will not fit all’ to maintain or improve a person’s and we need to develop an approach independence, safety and wellbeing. which builds upon the support that is provided by dementia support workers. • Provision of flexible, enabling and These should be in the form of multi- personalised respite support. disciplinary teams who are able to adapt • Ensuring access to advocacy support. what is required as a person’s needs change. The team will flex to meet individual I will be helped to live needs but their roles will include: independently for as long • Developing individual care plans as I can • Maximising physical well-being for The underpinning approach for these example advice and support to keep teams is that people have the right active, eat well or prevent falls. to individualised and person-centred • Communication support, such as care. We will continue working with key speech and language therapy. stakeholders, including people living with • Counselling support. dementia and their carers, to ensure that this happens. • Introduction to palliative care interventions. These will include the management of pain and other symptoms with a goal of achieving the best quality of life. 12 www.gov.uk/power-of-attorney 13 www.nhs.uk/Planners/end-of-life-care/Pages/advance-decision-to-refuse-treatment.aspx
20 We will: We will: • Develop multidisciplinary ‘teams • Work with social care, health around the individual’ which provide services and housing providers and person-centred and co-ordinated involve people with dementia, their care, support and treatment as families and carers to strengthen needed. collaboration on a strategic approach to housing to enable • Develop an All Wales Dementia people to stay in their homes. Allied Health Practitioner Consultant post who will give advice and • Enable housing staff to access to support to health boards and local training to assist them to support authorities to drive forward service people with dementia. improvements. • Consider the relevant • Ensure that Regional Partnership recommendations of the “Expert Boards (as required through the Group on Housing an Ageing Social Services and Well-being Population” to inform future housing (Wales) Act 2014), prioritise ways development. to integrate services, care, and • Review the Housing Aids and support, for people with dementia. Adaptations Programmes to ensure that people are able to access appropriate and timely support Support to stay safe and (April 2019) secure in the home Housing partners and care and repair Advocacy arrangements agencies are also key to helping people with dementia live independently and in a At the heart of rights-based and person- way that provides a good quality of life. centred support and care, is ensuring that the voice of the person remains at This independence can be achieved the centre of any actions or decisions. through the provision of a range of Throughout the course of a person’s housing choices such as supported lived experience of dementia, the type of housing or extra care facilities and access support they might need to express their to physical adaptations in existing homes. views, to make decisions and to access Housing staff (including those in extra entitlements will vary. care and sheltered accommodation) It is acknowledged that the term should have access to training to enable “advocacy” can be used to mean them to support people with dementia to different things for different people. live well. For some, acting as an “advocate” can be considered to be part of a friendship or a family relationship with the person or in the course of a more general support worker role.
21 For others, part of their professional role Capacity for decision will be to advocate for the people they support. In some situations the role of making an advocate can only be taken by a person who is totally independent from The Mental Capacity Act (2005) provides the person’s personal circumstances and a statutory framework for people who any decisions or actions that need to be lack the capacity to make specific taken. This is known as an ‘independent decisions, at certain points of time, advocate’. for themselves. The Act also makes Sometimes the involvement of an provisions for when people who have advocate is required by law and there capacity want to make preparations for a are particular or specialists areas of time when they may lack capacity in the advocacy, undertaken by specialist future. It sets out who can take decisions, independent advocates. in which situations and how they should go about this. The Act is intended to be enabling and Talk to me about my life, supportive of people who lack capacity and give me the support and aims to maximise their ability to make I need to keep living the life decisions or to participate in decision- making as far as they are able to do so. I choose One of the key aims of the Social Other than when the appointment of an Services and Well-being (Wales) Act advocate is required by law, it is not the 2014 is for individuals to be at the centre intention of this plan to prescribe the type of decisions about them and to be of advocacy or provider of advocacy at supported to have choice and control different stages. over their lives. However, the potential value of the role of independent advocacy as “the voice of the citizen” should be recognised at all Safeguarding stages of a person’s lived experience of dementia, explained and actively offered It is important to recognise that people as a rights based approach to service with dementia may be at risk of abuse delivery. and neglect. The Social Services and Well-being (Wales) Act 2014 (Part 7) strengthens existing safeguarding arrangements for relevant partners (such as NHS, Police or Probation) to have a duty to report to the local authority someone suspected to be an adult at risk of abuse or neglect. This is supplemented by a new duty for the local authority to make enquiries to determine whether any action is required to safeguard adults at risk.
22 The Act includes the establishment of This information is used to develop a plan a National Independent Safeguarding to address the person’s needs, reducing Board and Regional Safeguarding behaviours that challenge, improving Boards. The national board is responsible understanding of their needs and their for reviewing the effectiveness of quality of life. This also helps the people safeguarding arrangements in Wales and around the person with dementia to know makes recommendations to the Welsh how best to respond. In line with NICE Ministers as to how those arrangements guidelines psychosocial interventions could be improved. should always be tried first. The Act also reaffirms the importance Where a person’s level of distress is of advocacy during the safeguarding extremely severe or there is an immediate process. risk of harm to themselves or others it may be appropriate to use medication such as certain major tranquillizers, or We will: ‘anti-psychotic medication’. This should be seen as a short term intervention and • Ensure that relevant will need careful audit and monitoring to recommendations received ensure that the use of such medication from the National Independent meets guidelines published by NICE and Safeguarding Board are considered is not overused. and embedded into policy development across Government and integrated into operational We will: practice. • Ensure health boards provide access to evidence-based psychosocial and pharmacological Responding to people with interventions in line with Matrics Cymru14 and other relevant dementia experiencing guidance. strong feelings • Respond to the recommendations of the Health, Social Care and Some people with dementia have times Sport Committee’s Inquiry into the when they become distressed, fearful or use of anti-psychotic medication. frustrated. These symptoms of dementia often represent attempts to communicate a need that has not been met. What will be different: An explanation for the behaviour needs to be developed from information People with dementia and their gathered about the person, taking into carers and families are able to receive consideration their physical health, person-centred care and support medication, recognising triggers of which is flexible. the behaviour and social and physical environment. 14 www.1000livesplus.wales.nhs.uk/mental-health/
23 The need for increased support Care and support in the individual’s home for increasing needs We understand the importance for dementia losing independent living skills. people with dementia to remain in their The new ‘teams around the individual’ own home for as long as possible. will need to be able to respond quickly Hospital admissions, particularly lengthy when challenges or crises occur. ones, increase the risk of a person with ‘I am reassured to know that my carer is able to access support too…’
24 This may also require specialist intensive All carers must have reasonable breaks support for a limited period of time, for from their caring role to enable them to example from social services, learning maintain their capacity to care, and to disability teams and/or community mental have a life beyond caring. We also heard health teams with training and experience that respite provision needs to be flexible in crisis resolution support and meeting as the person with dementia, their family complex needs. and carers, will all have different needs, expectations and preferences. Both the ‘teams around the individual’ and other specialist teams will need Therefore we need to ensure there are to work together to ensure support different options for respite care which complements each other. can be provided within the home or outside the home and be relevant to different age groups as well as providing We will: opportunities for people living with dementia to sustain and maintain their • Ensure health (including Wales physical, intellectual, emotional and social Ambulance Service Trust – abilities. Additional funding has been WAST) and social services have awarded to local authorities across Wales pathways in place to ensure the in order to develop new approaches responsiveness of community to respite care which are based on the assessment and ongoing needs of carers and those being cared management services. for. We will also ensure that we learn from the Older People’s Commissioner’s Rethinking Respite research following its publication in 2018. Support for families and carers including personalised respite We will: The ability of individuals with dementia • Ensure that the new ’teams around to live at home for as long as possible the individual’ enable families and is often dependent on the support carers to access respite care that is of families and carers. A very strong able to meet the needs of the carer message from our consultation was as well as those of the person living that support for the carer can help to with dementia. prevent crisis and help maintain their own • Monitor the use of funding provided physical and mental well-being as well to local authorities for respite as that of the person they are caring for. provision to identify best practice in We are firmly committed to ensuring the supporting the needs of the carer rights of all unpaid carers are enhanced and the person who is cared for and protected. and ensure this practice is shared. The Social Services and Well-being (Wales) Act, provides carers with an equal right to have a needs assessment. For carers that have eligible needs, the The carers need to be local authority has a duty to meet those looked after as well – they needs through a carers support plan. have their own needs
25 Care home settings The need for hospital admission We recognise that it will not always be possible for people to remain in their own homes, even with enhanced support. We understand that when a person Living in a care home may be as a result with dementia is accessing urgent and of personal choice or because of the risks emergency care they are often at their of harm to the individual if they remain most vulnerable. at home. Care homes may also provide It is vital that health and social care respite care to enable family and carer professionals work together and consider members to have a break. Whatever the risk as part of the care planning and circumstances, care homes need to be management of people with dementia in considered as an individual’s home as order to prevent admissions from A&E, or people have the right to ‘live well’ and be reduce length of stay when an admission treated with dignity and respect. is unavoidable. We need to further develop the links We expect health boards to ensure that between care homes and community their hospitals embed a clear rights- services and will expect the dementia based approach to ensure that people ‘teams around the individual’ to provide living with dementia are treated with specialist and regular in-reach support dignity and respect at all times. to care homes. We are also encouraging The ‘Trusted to Care’ report provides GP practices to offer a new enhanced clear recommendations on how best service for residential and nursing care in to care for people with dementia in Wales. This will ensure a comprehensive general hospitals15. The 1000i Lives team review of physical and mental health for has also developed a series of tools all residents when they move into a care to assist in providing person-centred home, including a review of medication care and dementia supportive hospital and antipsychotic prescribing. environments. We have already introduced psychiatric liaison teams in district general hospitals. We will: These teams look at the interaction of a • Further develop use of the new person’s physical health and how that directed enhanced service for can impact on someone’s mental health. residential and nursing care homes. Liaison psychiatry team members work together, using their different skills and expertise to help people. They also work closely with other doctors and healthcare workers to ensure that physical and mental health care is as joined up as possible. Additional support for a persons stay in hospital can also be provided from the newly established ‘flexible resource teams’. 15 www.nhs.uk/Planners/end-of-life-care/Pages/advance-decision-to-refuse-treatment.aspx
26 I do not want to repeat my needs over and over again We will: • Monitor the implementation of the During our consultation, we heard recommendations from the ‘Trusted a lot about how we should better to Care’ report. accommodate the needs of a person with dementia when they are in hospital. • Ensure that psychiatric liaison Family members and carers also told services are available to all general us that there should be flexibility to hospitals in Wales. allow them to support a person whilst in • Ensure that the recommendations hospital if they wish. from the Royal College of Hospitals need to consider this in the Psychiatrists’ National audit of delivery of their care, for example: dementia in general hospitals are implemented, including instructing • Flexibility around meal times. health boards and trusts to adopt • Letting people sleep and wake at their the principles of ‘John’s Campaign’. own pace. • Allowing flexible visiting times. • Offering activities which are enjoyable Inpatient care for older and support feelings of self worth. people within mental health • Facilitating families and carers to services continue to support a person with dementia whilst they are in hospital if Sometimes people will be admitted to an they wish. older person’s mental health inpatient unit to get the care that they need. As with • Adapting environments so they are any setting this needs to be delivered in more ‘dementia supportive such as a person-centred, holistic and respectful considering the layout and signage. way. A community of practice for older • Ensuring that broader physical health person’s mental health units has been care needs are considered as well as established in Wales so good practice the presenting medical problem and can be shared. symptoms of living with dementia. • Ensuring that people are screened to Access to advocacy in identify delirium, which is common in people living with dementia, so it can hospital be appropriately treated. When admitted to any hospital, Some health boards are already individuals with dementia should have responding to the need to involve family access to effective non-instructed and carers members by adopting the advocacy or an Independent Mental principles of ‘John’s Campaign’ in a Capacity Advocate (IMCA) and number of their wards. We need to Independent Mental Health Advocate ensure that all health boards adopt this (IMHA) in the most appropriate manner approach. depending on individual circumstances.
27 Practitioners are required16 to help people The report highlights that dementia access advocacy, when this is needed, to is often not recognised as a terminal determine their well-being outcomes and diagnosis, which can lead to poor access express their wishes and feelings. to care, inconsistent quality of care and inadequate pain management. Everyone has the right to good end We will: of life care where they are treated as • Expand the use of Dementia Care an individual, with dignity and respect, Mapping™ as an established without pain and other symptoms, in approach to achieving and familiar surroundings and with their close embedding person-centred care for family and friends. We need to ensure people with dementia and ensure that the options and access to palliative health boards implement ‘Driver care and end of life care is the same for Diagram – Mental Health Inpatient a person living with dementia as it is for Environments for people with anybody else. dementia’. • Ensure older person mental health units have agreed care pathways We will: for accessing regular physical • Ensure the ‘teams around the healthcare. individual’ discuss the importance • Ensure that access to advocacy of making advance decisions and services and support is available to ensure an agreed palliative care enable individuals to engage and pathway is in place. participate when local authorities • Identify professionals who would are exercising their statutory duties benefit from training in initiating under the Social Services and serious illness conversations, and Well-being (Wales) Act 2014. provide such training. • Review the capacity of existing bereavement services and settings End of life care in which they are delivered to ensure that the differing needs of Dementia is a long term condition and families and carers of those with in 2015 was the leading cause of death, dementia are being met. accounting for 11.6% of all deaths17. Many more people will die of another condition alongside dementia. What will be different: In 2015 the Alzheimer’s Society Wales People with dementia, their families and Marie Curie published a report and carers, receive person-centred entitled ‘Living and Dying with dementia care and support that adapts as the in Wales: Barriers to Care’18. needs of an individual increases. 16 Legislation laid down in the Social Services and Well-being (Wales) Act 2014, The Mental Health Act 1983 and the Mental Health (Wales) Measure 2010. 17 www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/bulletins/deathsregisteredinenglandandwalesseriesdr/2015 18 www.mariecurie.org.uk/globalassets/media/documents/policy/policy-publications/february-2015/living-and-dying-with-dementia-in-wales.pdf
28 Supporting the implementation Learning and development People with dementia, their families and home, which has the knowledge and carers, have the right to be supported skills to offer high quality dementia care and cared for by a workforce, whether and support. it is at a GP surgery, hospital or a care ‘I am supported by people who are both skilled and compassionate and who understand me and the impact that having dementia has on me…’
29 Families and carers should also have access to training which enables them We will: to support people with dementia to live • Ensure people with dementia, their well and which provides information and carers and families are involved in advice about looking after themselves. the development and delivery of The provision of dementia related dementia education and training. education and training across the sectors should be developed with people with • Improve access to training for lived experience, families and carers. carers and families through the implementation of the ‘Good Work’ Professionals working with people framework. who are at a higher risk of developing dementia also need to be engaged, • Ensure that the principles of ‘Good suitably trained and involved in the Work’ are embedded in the new development of pathways. This will vocational qualifications for social include professionals working across care and health. a number of areas such as cardiology, stroke services, learning disabilities • Develop learning resources for the services, prisons, substance misuse health and social care workforce, services and homelessness / housing including the third sector, based on services. ‘Good Work’. To help deliver this, Good Work: • Ensure all NHS employed staff who A Dementia Learning and Development come into contact with the public Framework for Wales19 has been receive an appropriate level of developed. The Framework aims to dementia care training (as specified support people to address their own in – ‘Good work’). specific learning and development needs • Ensure training for health and social within the context of their lives and care staff includes awareness- circumstances. raising about the role of carers and how to involve them appropriately in the care process. It’s only when you’re informed yourself can you then look after someone to What will be different: the best of your capacity Staff have the skills to help them identify people with dementia and to feel confident and competent in supporting individual’s needs post- diagnosis. 19 https://socialcare.wales/resources/good-work-dementia-learning-and-development-framework
30 Research We will: Continued research will allow us to better • Fund an independent evaluation understand the causes and management of ‘teams around the individual’ to of dementia, which will enable the inform the continued development development of new treatment and care of the approach. approaches. • Work with NHS and social care It will also help us to understand what and research teams to support matters to people living with dementia, and promote more dementia and how we can best work together to related research studies to Wales. enable people to live full and healthy lives Supporting the role of research in for as long as possible. delivering good quality care in a flexible and responsive fashion. Wales has been involved in dementia research for some years. This includes • Create more opportunities work undertaken through Health and for people with and affected Care Research Wales’ Centre for Ageing by dementia across Wales to and Dementia Research, the Dementia participate, be involved and Services Development Centre and the engaged in research activity. recently created UK Dementia Research Institute. • Encourage research that uses public health approaches to The Welsh Government remains consider ways of addressing committed to developing policy and inequalities experienced by people supporting health and social care with dementia. research in Wales. • Ensure there are regular opportunities to identify innovative I am aware that I can service models and areas of be involved in dementia evidence-based practice, to ensure research findings are implemented research and will be in services across Wales and to supported to participate inform research partners of areas if I want where further research could usefully inform practice. What will be different: People living with dementia, including families and carers have the opportunity to be involved in research that looks at cause, cure and care for dementia.
31 Annex 1: Meeting the needs of specific groups To ensure the different needs of our Our ‘More than just words follow on population in Wales are fully understood, framework’ expects staff in health and in recognition that ‘one size does not boards, social services and the social fit all’, the following themes and actions care sector to actively offer services have been identified as areas to be through the medium of Welsh language, considered across the pathway. rather than expect patients to have to ask for them. The ‘Active Offer’ commitment will be strengthened when the Welsh Young onset dementia Language Standards for the health sector are introduced in 2018. Younger people living with dementia often have different needs. They and their partners are more likely to: Learning disabilities and • Be in work at the time of the diagnosis dementia and to have financial commitments. People with learning disabilities have • Have caring responsibilities for children a higher risk of developing dementia and their own parents. compared to the rest of the general population. For people with Down’s • Be more active, stronger and fitter than syndrome, it is predicted that 1 in 3 much older people. people over the age of 50 will develop Services must address the specific dementia. If people already have needs of younger people with dementia difficulties in processing information and their families and ensure that they or short term memory problems this are aware of the help that is available. can make diagnosis more difficult. Employers should have access to the Symptoms affecting personality, right information in order to be able to emotion or behaviour may show before support employees. They must be able to any change in language ability or demonstrate how they are providing local memory20. Communication difficulties, age-appropriate and meaningful support, and an increased potential for sensory whether that is in a person’s home or impairment, may make it more difficult through day, respite or residential care. for a person with learning disabilities to describe their experience of symptoms. Welsh language provision For Welsh speakers living with dementia receiving care and support in their first or preferred language is a matter of clinical need. As their condition progresses, people with dementia may understand or be able to communicate in their first language only. 20 White J. Dementia and Equality, briefing paper. Edinburgh: NHS Health Scotland; 2015 – citing Sheehan et al 2014.
32 Sensory impairment and The language needs of people living with dementia may change as the dementia condition progresses, and services need to be aware of and able to respond to a A number of people with dementia will person’s language and communication have some form of sensory impairment needs. (such as sight loss, hearing loss or both).As this can create additional Services should ensure that care, difficulties with communication, service support and treatment provided is design across the pathway should allow culturally acceptable and that staff are equal access for people with a sensory appropriately trained. Steps should be impairment to all dementia related taken to ensure that a person is asked services and support. about their individual culture during contact and that equity of access is The Welsh Government introduced improved, by, for example, developing the All-Wales Standards for Accessible different information resources and/or Communication and Information for appointing outreach workers. People with Sensory Loss in December 2013. The aim of this document is to set out the standards of service delivery Lesbian, gay, bisexual or that people with sensory loss should transgender (LGBT) people expect when they access healthcare in Wales. A key part of the Standards is the with dementia requirement that every service user who requires communication support should Older LGBT people are more likely to have this need met. be single and to live on their own, and are less likely to have children or regular family support. People with dementia from Some LGBT people feel that services Black, Asian and Minority are not sensitive to their needs and Ethnic (BAME) and Gypsy, individuals can sometimes feel out of place in traditional support groups. Roma, and Traveller (GRT) Dementia UK (2007) reported that many communities: older transgender people (aged 60 and over) are concerned that they may We need to ensure that people from develop dementia and need intimate care, BAME and GRT communities can access which may result in being treated in ways appropriate services easily. There is not fitting with their gender identity21. known stigma connected with dementia and diagnosis in some cultures and Services should ensure that staff are communities that can lead to reluctance aware and appropriately trained to deliver to access services. Equally, services care and support that is sensitive and that are not designed to meet cultural acceptable to a person’s sexuality and or religious needs can unintentionally gender identity. exclude people and their families and carers from accessing support. 21 Dementia UK: the full report; Kings College London and London School of Economics, 2007.
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