Choice Team Department of Health New King s Beam House 22 Upper Ground London SE1 9BW 14 January 2011 To whom it may concern Liberating the NHS: Greater Choice and Control Thank you for the opportunity to comment on the above consultation document. This response provides background information on Alzheimer s Society, dementia and the challenge it presents to health and social care services, and the policy context. It then goes on to provide comments in relation to questions in the consultation document. 1. Key points The Society believes that people with dementia and their carers as core users of health and social care services should have choice and to access to a variety of high quality dementia services. People with dementia should have choice over the services they access and they must be empowered to choose through appropriate information and support. Early diagnosis and intervention is vitally important for people with dementia and their carers, along with supporting information as it allows them to make informed choices and plan their future care. It must be acknowledged that people with impaired or fluctuating capacity, such as those with dementia, may face barriers in making choices if they are not offered adequate support to do so. Our research shows that one of the ways to break down the barriers that people with dementia and their carers face in making choices is through greater information provision, support and advocacy. Professional awareness and training in dementia for health and social care professionals (especially GPs) is crucially important in improving choice and control as professionals are often in a position to provide information and help interpret and guide people through it.
The role of carers in the decision-making process when the person with dementia lacks capacity is very important. Carers are often hindered in their caring role because they are not consulted or involved in important decisions about someone with dementia who has lost capacity. Good quality end of life care must be respectful and sensitive to the patient s needs and dignity. This is particularly critical for people with dementia, who are at high risk of inappropriate palliative interventions and treatments 2. Alzheimer s Society Alzheimer s Society is the leading care and research charity for people with Alzheimer s disease and other forms of dementia, their families and carers. The Society has expertise in providing information and education for people with dementia, carers and professionals. It provides a helpline and support for people with dementia and carers, runs quality day and home care, as well as funding medical and scientific research. It campaigns for improved health and social services and greater public understanding of all aspects of dementia. 3. Dementia and health and social care services There are 750,000 people with dementia in the UK. This is forecast to increase to over 1 million by 2025 and 1,735,087 by 2051 1. One in three people over 65 will end their lives with a form of dementia 2. Dementia is a complex condition and people living with the condition require a broad package of care from a range of agencies across health and social care. Dementia is progressive, which means people with dementia and their carers are coping with a changing pattern of abilities over time. As the disease progresses, people with dementia will need more support. Eventually, they will need help with all their daily activities. We estimate that two thirds of people with dementia live in the community either with a family or alone. One third of people live in a care home. At least two thirds of people in care homes have dementia and people with dementia over the age of 65 are using up to one in four hospital beds at any one time 34 Unpaid carers are a major resource for people with dementia. There are estimated to be 600,000 people in the UK acting as the primary carers for 1 Alzheimer s Society (2007) Dementia UK, a report to the Alzheimer s Society by King s College London and the London School of Economics. Alzheimer s Society: London. 2 Brayne C, Gao L, Dewey M & Matthews FE, Medical Research Council Cognitive Function and Ageing Study Investigators (2006) Dementia before Death in Ageing Societies The Promise of Prevention and the Reality. PIoS Med 3(10):e397.doi.1371/journal.pmed.0030397. 3 National Audit Office (2007) Improving services and support for people with dementia. The Stationery Office: London. 4 Alzheimer s Society (2009), Counting the Cost Caring for people with dementia on hospital wards,alzheimer s Society: London 2
people with dementia 5. Carers for people with dementia save the UK 6 billion per annum 6. Dementia currently costs the United Kingdom 20 billion each year 7. This is an average of 25,472 per person with late onset dementia. By 2018 dementia will cost the UK 27 billion per annum 8. The National Audit Office s report in 2007 9 found that health and social care spending on dementia was late in the condition and was often not contributing to good outcomes for people with dementia. Early, costeffective interventions were not being made widely available, resulting in spending at a later stage, on necessarily more expensive services. was late. 4. Policy context Living well with dementia: a National Dementia Strategy Living well with dementia: a National Dementia Strategy 10, published in February 2009, sets out 17 objectives designed to support people to live well with dementia. In September 2010, the Department of Health published its revised, outcomes focused implementation plan for the Strategy 11. The key purposes of the revised plan include setting out for health and social care localities and their delivery partners: the Strategy s fit with the new vision for the future of health and social care as set out in the White Paper Equity and Excellence; Liberating the NHS 12 the fit with the consultation document Liberating the NHS: Transparency in outcomes a framework for the NHS 13 This revised implementation plan includes, in its priority objectives: Good-quality early diagnosis and intervention for all Improved quality of care in general hospitals Reducing significantly the use of anti-psychotic drugs Improving GP education and training to include dementia awareness 5 Alzheimer s Society (2007) Dementia UK, a report to the Alzheimer s Society by King s College London and the London School of Economics. Alzheimer s Society: London 6 Ibid 7 Alzheimer s Society (2007) Dementia UK, a report to the Alzheimer s Society by King s College London and the London School of Economics. Alzheimer s Society: London. 8 King s Fund (2008) Paying the Price: The Cost of Mental Health Care in England to 2026. King s Fund: London; and Alzheimer s Society (2007) Dementia UK, a report to the Alzheimer s Society by King s College London and the London School of Economics. Alzheimer s Society: London. 9 National Audit Office (2007) Improving services and support for people with dementia. The Stationery Office: London. 10 Department of Health (2009) Living well with dementia: A National Dementia Strategy. Department of Health: Leeds. 11 Department of Health (2010) Quality outcomes for people with dementia: building on the work of the National Dementia Strategy. Department of Health: Leeds. 12 Department of Health (2010) Equity and Excellence: Liberating the NHS. The Stationery Office: London. 13 Department of Health (2010) Liberating the NHS: Transparency in outcomes a framework for the NHS A consultation on proposals. Department of Health: London. 3
It also states that The improvement of community personal support services is integral to all the plan s priorities. Raising the quality of care for people with dementia and their carers is a major priority under the new Coalition Government reflecting public comments made by Ministers and the coalition agreement commitment to dementia research The Government is committed to ensuring there is greater focus on accelerating the pace of improvement in dementia care, through local delivery of quality outcomes and local accountability for achieving them Local organisations are expected to publish how they are delivering quality outcomes so that local people can hold them to account. The new NHS Operating Framework 14 2011/12 published in December 2010 also reflects on this and includes dementia services as one of its new key commitments. These policy developments clearly show that dementia will be a major priority for the NHS and social care in the future and consequently the choice architecture underpinning these them must reflect this pressing need. 5. How we consulted in preparation for this response In order to gather views to feed into this response, we visited a number of Alzheimer s Society support groups for people with dementia and their carers. 6. Response to the specific consultation questions Making choices 1 How should people have greater choice and control over their care? How can we make this as personalised as possible? 1.1. People with dementia and their carers have consistently said that they want greater choice, control and to be the experts in their own care. However, helping people choose can sometimes be difficult if they have a cognitive impairment. Therefore to enable them to make choices that are informed and meaningful it is essential that people empowered and given appropriate information and support to understand the full range of health and care services on offer and what those services could provide. Currently people with dementia still face barriers in making choices. In order to achieve greater choice and control for people with dementia there needs to be: Earlier diagnosis Professional awareness and better staff training Better utilization of the Mental Capacity Act and advanced care planning Advanced Care Planning Better sign posting to information that can aid choice 14 Department of Health (2010) Revision to The Operating Framework for the NHS in England 2010/11. Department of Health: London. 4
1.2 Earlier diagnosis One way of improving the choices that people with dementia and their carers are able to make and making this process as personalized as possible is through improving the earlier diagnosis of dementia. This is crucial because it gives people with dementia increased scope for expressing preferences and making choices for the future while they still have capacity, late diagnosis means that people have fewer choices. The National Audit Office report Improving services and support for people with dementia 15 found that only a third to half of people with dementia ever receive a formal diagnosis. People can wait up to three years before reporting symptoms of dementia to their doctor 16. 1.3 Staff training Staff can play an important part in enabling patients to make choices about their healthcare. Providing support and information to involve patients in decisions about their healthcare are not only good practice, they are also captured in the Law, such as the Mental Capacity Act 2005. It is also vital that the expectations of professionals are raised around the extent to which people with dementia and carers can be involved in the agenda of involvement, choice and control. Specific work will be needed to embed this culture throughout, including ensuring that all professionals have training in dementia care. This is supported by research, which shows that frontline staff and first-line manager training and supervision is vital for the implementation of aspects of greater choice and control like personal budgets (particularly where people receive a direct payment) and to challenge perceptions about risk and capacity for certain groups, particularly older people and people with mental health problems or severe learning disabilities. 17 1.4 Using the Mental Capacity Act It is important to recognise that a diagnosis of dementia does not necessarily mean that individuals can no longer make decisions for themselves. People with dementia lose capacity over time and the rate at which a person's condition deteriorates varies from individual to individual. With earlier diagnosis and new treatments, people are retaining capacity for longer. The Mental Capacity Act 2005 stipulates that everyone must be presumed to have capacity until proven otherwise; that the issue of capacity relates to each decision to be made (the person may have capacity to make one decision but not another); that everything possible must be done to enable the person to make their own decision; and that any decision made on their behalf must be in their best interests and take into account their previously stated views and 15 National Audit Office (2007), Improving services and support for people with dementia, National Audit Office, London. 16 Alzheimer's Society, (2002), Feeling the pulse, Alzheimer s Society, London. 17 Carr, S and Robbins, D (2009) Research briefing 20: The implementation of individual budget schemes in adult social care, London: Social Care Institute for Excellence Department of Health (2009) Local authority circular 1, London: 5
preferences. In research carried out by the Society in 2008 about how people deal with being diagnosed one person commented: 18 I need to make those decisions while I have enough mental capacity to be able to do that and to understand the implications of it before I get too far down the line. So it has given me the time to think about that. That is important (person with dementia). In some cases where reduced capacity is an issue in making choices people with dementia may benefit from the use of advocates. However access to independent advocacy is currently limited. The Society would like to see access to advocacy services for people with dementia greatly increased and information about using advocates made available to individuals using NHS or social care services. 1.5 Advanced Care Planning The use of advance care planning can also enable people with dementia and their carers to have greater choice and control over their care provided the person with dementia feels this is appropriate. Advanced care planning ensures that a person s treatment and care wishes are taken into account. It also helps to open up a dialogue with doctors and nurses to stimulate conversation with family and close friends. This can relieve them of the burden of decision-making at a distressing time and at the same time protects an individual s right to personal autonomy and choice and brings some reassurance to a person worried about their future care and allows them to put their financial affairs in order. 1.6 Sign-posting In our response to the consultation on the Information Strategy we have outlined the importance of signposting in supporting choice for people with dementia in making choices. 2. Are these the right choices for users of mental health services, and if not why not? The Society believes that these are the right choices for users of mental health services and people with dementia and carers. We support the emphasis on personalized care planning and ensuring that people have the means to express their preferences and wishes about their future care and treatment. However they must be fully supported to make these choices and have guidance and information to empower them to understand and access the system. Evidence shows that information with support is far more effective than just information alone as has been demonstrated by the Dementia Advisers service.. 3. Would you like the opportunity to choose your healthcare provider and named consultant led team after you have been diagnosed with an illness or other condition? 18 Alzheimer s Society (2008), Dementia: Out of the Shadows, Alzheimer s Society: London. 6
We know from speaking to people with dementia and their carers that some would like the opportunity to choose their healthcare providers and consultantled team after they had been diagnosed but they felt would need help and support from health professionals to do this. Equally there are many people with dementia and their carers where the option of choice is an extra burden at what is often a very distressing time. This is why it is crucial that healthcare staff have training in dementia awareness and their role under the Mental Capacity Act 2005 so they are able to provide advice about what options would best suit the person with dementia and their carer. 4. What information and/or support would help you to make your choice in this situation and are there any barriers or obstacles that would need to be overcome to make this happen? People with dementia and their carers often report that once diagnosed they had received very little clear information about the pathways of care available to them and how to access them. The GP was supportive but merely referred her to the local mental health trust, which required us to jump through a series of impossible hoops before 6 months later she was eventually seen by a psycho-geriatrician. Getting a diagnosis was really hard. People were sympathetic in regard to the symptoms being displayed but uninterested in identifying what was the cause. The NHS mental health trust was spectacularly unhelpful: in order to access their dementia service, my mother had first to undertake hospital tests e.g. scans that her dementia made impossible for her to do. Once a person has been diagnosed with dementia it is vitally important that they and their carers receive practical support when making choices about treatment and health services from trained health professionals who have an understanding of dementia as the initial diagnosis can be a distressing experience. Information should cover the most likely course of the condition (its successive stages, potential symptoms, timeline etc), potential treatments and coping strategies, practical techniques and gadgets that can help maintain a person s independence, and ways of dealing with challenging behavioural symptoms. This is where early intervention and sign-posting become crucially important. The Society has pioneered the Dementia Adviser programme that is addressing this need. The dementia adviser service is primarily for people with dementia, as well as their and carers. It provides them with a named contact throughout their journey with dementia. Referrals to the service may come from GPs, Community Mental Health Teams or other health and social care professionals, or self-referral. The main aims of the service are: Provision of a quality information and signposting service which is tailored to individual need. This will be supported by the Society s constantly evolving national and local information base. 7
Focus on the individual empowering them to access the information they need, promoting independence, self-help, well-being, choice and control. Collaboration with other health and care professionals and active development of these partnerships to maximize the outcome for the person with dementia. Accessibility seeking out those affected by dementia that we have traditionally found it hard to reach 19. 5. What else needs to happen so that personalised care planning can best help people living with long- term conditions have more choice and control over their healthcare? 5.1 People with dementia are substantial users of the health and social care system. Yet, standards of care and services for people with dementia are very often of poor quality. This is unacceptable because it delivers poor health outcomes and poor value for money. Involving people with dementia to understand what they need and want from health and social care services is crucial to changing this situation. People with dementia are the experts on what it is like to live with dementia. Their expertise must inform the health and social care services that they use. Involving people with dementia in personalised care planning operates on two distinct levels. The first is about actively involving people with dementia and carers in designing, developing and monitoring services to ensure they deliver what people need. The second is about care planning, making sure people with dementia receive care that is personal and suited to their unique needs. This involves an assessment and an ongoing personalised care plan, agreed across health and social care and that identifies a named care coordinator and addresses their individual needs 20. 5.2 However, there are a number of things that need to be in place to ensure that personalised care planning becomes a reality. The first is that the expectations of professionals need to be raised around the extent to which people with dementia and carers can be involved in the agenda of personalised care, involvement, choice and control. The second is that there needs to be better to access to a broad range of appropriate services, such as early intervention and ongoing information and support. The Society calls for priority to be given to ensuring that the following are in place in the development of greater personalised care planning: People with dementia to be involved in the health and social care system to ensure it is able to address the needs of this substantial, and growing, group of service users. Culture change and awareness raising among health and social care professionals towards involving people with dementia. 19 Alzheimer s Society (2010), What is a dementia advisor, http://www.alzheimers.org.uk/site/scripts/download_info.php?fileid=532 20 NICE (2010), Dementia Quality Standard, NICE, London. 8
Better access to appropriate services, information and support for people with dementia. A more developed market in dementia services with a diverse range of services. However this is unlikely to be stimulated just through personalisation. 6. What choices are most important to people as they approach the end of their lives? What would best help to meet these? 6.1 Good quality end of life care must be respectful and sensitive to the person s needs and dignity. Very often people with dementia have unique needs at the end of their lives. There can be severe impairment in capacity and difficulties with communication that can make choices and decisionmaking about care and treatment more challenging. Pain and other symptoms can go unrecognized and untreated. People with dementia can be in the terminal stage of their illness for several years. We very much support the need for people with dementia to spend the final part of their lives in the place of their choosing (and this can include care homes for many) greater use of the Mental Capacity Act and advance planning would help to tackle this. This is why the Society supports the work of the Dying Matters coalition and National Council for Palliative Care s dementia project. 6.2 Currently being excluded from end of life and palliative care treatments and services is a problem for dementia, as many of these interventions have been developed for cancer and shorter illnesses, and so do not cater for the unique needs of people with dementia at the end of their lives. We support more research into the end of life care that works best for dementia and greater availability of services that work for people with dementia. When we spoke to people with dementia and their carers about the choices that were most important to them at the end of life they included: Where they spend their last months/weeks/days Who looks after them (personal care) Who they spend time with (social & emotional needs) What everyday activities they are supported to do What medical treatment they receive. 6.3 They felt that the things that were needed to enable them to make these choices were: Clear support and advice for people with dementia and their carers. Involvement of carers, family and health and social care professionals to ensure they are in tune with the person s preferences when the time comes and that they act on them. Clear communication of the person s preferences to healthcare staff. Robust systems in place to ensure that healthcare prerogatives do not override prior personal planning and decision-making unless appropriate. 9
Above all dignity, comfort and reassurance for the person and their loved ones are paramount at the end of life. Unfortunately, the Society hears many reports of people receiving care that falls far short of this. 7. Carers may sometimes feel that they themselves have no choice when the person they care for chooses to die at home. How should the respective needs and wishes of patients and carers be balanced? 7.1 The effect of dementia on a patient s capacity means that family and carers are often involved in making end of life decisions, many of which involve uncertainty. Carers will have strong involvement in their care and unique insights into the person s wishes and feelings. This is why early intervention is important as it enables carers and families to plan with the person who has dementia who they are caring for. There is a delicate balance between making sure family do not feel burdened by a decision and ensuring they are included to the extent they want and need to be. In recent work talking with members of the public about difficult decisions they had faced from their experiences with dementia, one of the most common areas of distress arose from decisions around a person s care and treatment at the end of their life. 7.2 It is not uncommon for a carer or family member of a person with dementia to feel that a decision about whether to start or withdraw a potentially life extending treatment or to fulfill positive request for treatment was a burden shouldered by them alone, and that they were responsible for the outcome. This is why it is important as soon as a diagnosis has been made to give carers of people with dementia information about their role in relation to the Mental Capacity Act. We know from talking to people that many families feel a sense of guilt for years to come, even though they did nothing wrong. Other family members report feeling excluded from end of life treatment decisions. Some family members feel concerned that clinicians rely too heavily on objective opinions about quality of life... 7.3 When speaking to people with dementia and their carers they stated that if the agreed plan is for the person to die at home, then the carer needs to be part of that plan. Sufficient professional support needs to be supplied within the home to enable the person to die there in ease and comfort, without imposing on the carer insupportable stress and distress. If local services cannot, or will not, guarantee a suitable level of home care, and if the carer is not agreeable to providing the level of care that will be required, a home death will not be possible. Individual preference is hugely important, and if the person wants to die at home everything possible should be done to allow it. However, the carer is also an important person, and if they cannot be sufficiently supported to deal with the situation, then their views and feelings should not be trumped by those of the person with dementia. 8. How can we encourage more people to engage in advance care planning about their preferences for the care and support they receive for example, when they are approaching the end of their life? 8.1 The Society would like to see more people with dementia and their carers engage in advance planning about their preferences for care including that 10
towards the end of life and this what there needs to be greater awareness and publicity about the benefits of advance planning. The ways in which advanced planning could be encouraged include earlier diagnosis which increases opportunities for advance planning and also training GPs, Community Practice Nurses, care home staff and others about the advance planning options available, so that they can raise them in discussions with individuals with dementia. 8.2 Advanced planning helps to ensure that a person s treatment and care wishes are taken into account and helps to open up a dialogue with doctors and nurses to stimulate conversation with family and close friends, which can relieve them of the burden of decision-making at a distressing time. At the same time advance planning protects an individual s right to personal autonomy and choice and brings some reassurance to a person worried about their future care and allows them to put their affairs in order 21. When speaking to people with dementia and their carers they felt that open discussion of the issues and options around advanced care planning and endof-life care should involve the person (where their dementia allows), significant others in their life, and health and social care professionals. 8.3 There are different types of advanced care planning that are often utilised by people with dementia and their carers. An advance decision is intended to be a binding refusal of certain kinds of treatment as specified by the person making the advance decision. An advance statement is a statement of general beliefs and aspects of life that a person values. It may reflect individual aspirations and preferences, and is sometimes called a 'personal values history'. The statement can be used to help health professionals and others, such as family members, to decide what sort of treatment the person would want if they were unable to communicate their wishes. However, an advance statement would not bind healthcare professionals to a particular course of action if it conflicted with their professional judgment. 8.4 The Society believes that advance decisions and statements should be regularly reviewed while the person still has capacity, because views and circumstances may change over time, and written following full consultation between a patient and doctor. It is also important that there is on-going assessment of need for both the person with dementia and their carer. It is important that they should deal with general, rather than specific kinds of treatment to ensure that they are as contemporary as possible. It is also important to realize that most people who make an advance directive or statement do so with great consideration and think about it very seriously, and as such, advance directives and statements offer reliable guidance. 9. How can we make sure that carers and the families of patients and service users can have a say in decisions about the healthcare of the people they support, where appropriate? 9.1 Unfortunately carers are often hindered in their caring role because they are not consulted or involved in important decisions about someone with dementia who has lost capacity despite the fact that this is required under the 21 Alzheimer s Society response Nuffield Council on Bioethics Dementia: ethical issues 11
Mental Capacity Act. Current NICE dementia guidance states that the views of people with dementia concerning who should and should not be involved with their care are important and should be respected. With the permission of the person with dementia, carers and relatives should have the opportunity to be involved in decisions about care and treatment at the earliest possible opportunity. In addition the person with dementia should have access to information about the options available to them about how to plan for their future care and advocacy services. The role of carers in the decisionmaking process when the person with dementia lacks capacity is very important because they are often experts in the person with dementia s care needs. It s vital that carers and relatives get as much information and support as they need to feel supported and a clear explanation of the implications of the Mental Capacity Act. 9.2 Healthcare professionals should recognise the carer as playing a vital role in the decision-making process, joint discussion and decision-making between the carer and professional, rather than one party being able to make a decision alone, would help to improve the quality of life for many people with dementia and help to identify their best interests. Access to independent advocacy like that provided by Independent Mental Capacity Advocates would ensure that the interests of the individual are at the forefront of decisionmaking and may help to resolve conflict between carers and health and social care professionals. 10. What information and support do carers, parents, guardians and those with powers of attorney or deputyship need to help others to make choices or to make choices on others behalf? The types of information and support that carers, parents and guardians and those with powers of attorney or deputyship for people with dementia need to help them to make choices or to make choices on other s behalf include information about progression of the illness, financial and legal information, benefits information, local services and how to access them, contact details for voluntary organizations, advice on how to care for a person with dementia and dementia medication and treatments. It is important that this kind of information is not given in isolation and that support is provided to help interpret and explain it and help the person work things through it. 11. Who would you like to go to for help with understanding information and making decisions and choices about your healthcare, or that of someone you support? Earlier this year the Society published a report on the information needs of people with dementia and their carers and where they would like to go for help with understanding information and making decisions about healthcare 22. The evidence from this showed that many people with dementia and their carers want to be able to access a range of information ideally from one-stop information shop, usually a trusted professional who knows about them and their medical history and life circumstances, and who can direct them on to relevant sources of help, such as that provided by the dementia advisor 22 Alzheimer s Society (2010) Information needs of people with dementia and their carers 12
service. Currently many rely on the experience and the advice of family and friends who have carried out research on the internet, contacted their local Alzheimer s Society or other groups such as Age UK and Carers UK or if offered the opportunity a community psychiatric nurse. Very few cited the use of official sources of information for choice (such as NHS Choices). 13. What information and support do voluntary sector and patient-led support groups need so that they can continue to help people to make choices about their healthcare? In the current tight fiscal climate and with the prospect of significant cuts to public services there is a strong expectation that the voluntary sector and patient led support groups will provide a greater number of services to vulnerable people with considerably less statutory funding. If they are to deliver this they will need to invest in more sophisticated information systems and social media and other forms of communications. To enable them to do this it is imperative that they receive help and support to think creatively about how to access alternative sources of support, promote their services to commissioners, but also how to demonstrate their ability to engage users in the commissioning process and to develop new models of service delivery. The Society s Dementia Adviser service is an example of this. 14. How should people be told about relevant research and how should their preferences be recorded? 14. 1 The Society believes that people with dementia should be told about relevant research and fully involved where possible. The Society is a pioneer in public involvement in dementia research. Our Research Volunteers network is a team of 180 carers, former carers and people with dementia. Network members play an integral role in the research programme. Their duties include: setting our research priorities prioritising and commenting on grant applications sitting on grant selection panels monitoring on-going projects funded by Alzheimer's Society telling others about the results of research. We believe that people with dementia and their carers make a unique and valuable contribution to our work. Their knowledge and passion ensures our research funding is allocated to projects that address the real needs and concerns of people with dementia and their carers. 14.2 For people with dementia and their carers to be fully involved there must be clear communication about ongoing care and clinical research in lay language, and signposting to opportunities for involvement in clinical trials and Patient and Public Involvement groups. It is also important that information must be realistic. Healthcare professionals also need to be provided with this 13
information. This has a double benefit not only are the people informed, but healthcare professionals (in particular GPs) are more empowered to give a diagnosis of dementia when there is a clear route for people to follow for further information and support. 14.3 There is also a need for development and implementation of evidencebased quality of life measures to enable clear evaluation of any care planning initiatives. Qualitative research indicates that the most effective and accurate measures are based on outcomes identified by the people with dementia or the carers themselves. There is a need to create better links between care and research, particularly in encouraging active involvement of care staff. This could be achieved through better signposting about specific funding opportunities, and the benefits of research into care. 15. The White Paper indicates that the Government will explore the potential for introducing a right to a personal health budget in discrete areas. Which conditions or services should be included in this right? The Society believes that the development of personal budgets in healthcare could have the potential to be of great benefit to people with dementia and we believe that dementia should be included in this right. Direct payments in social care have improved personalisation and choice but there is evidence that suggests that older people and those with impaired cogitative abilities have poorer access to these schemes. We also know that social care professionals can sometimes act as a barrier to people with dementia having access to direct payments therefore it is essential that healthcare staff have adequate training to make sure that people with dementia have access to personal healthcare budgets. I hope these comments are helpful. I would be pleased to answer any questions or offer any further advice, please contact me on 020 7423 5129 or karishma.chandaria@alzheimers.org.uk. Yours sincerely Karishma Chandaria Senior Policy Officer External Affairs Directorate Alzheimer s Society 14