'Better health better care' response

1. Introduction

Alzheimer Scotland is Scotland’s leading dementia charity. We work to improve the lives of everyone affected by dementia through our campaigning work nationally and locally and through facilitating the involvement of people with dementia and carers in getting their views and experiences heard. We provide specialist services such as day care, home support and carer support in over 60 locations and offer information and support through our 24 hour freephone Dementia Helpline, our website (www.alzscot.org) and our wide range of publications.

There are currently 58,000 - 65,000 people with dementia in Scotland, 1,350 – 1,650 of whom are under 65. Dementia is a long-term condition which gradually and inexorably impairs every aspect of a person’s mental function, from memory and decision-making to the activities of daily living and personal care. The complex, unpredictable and progressive nature of the condition mean that dementia has a profound psychological impact both on people with dementia and on those who care for them. The projected rise in numbers of people with dementia due to our ageing population is one of the key health and care challenges which faces Scotland.

We welcome the opportunity to contribute to the discussion on Better Health, Better Care. This response was shaped by wide consultation with people with dementia, carers, the Scottish Dementia Working Group, Alzheimer Scotland’s NHS and Community Care Committee, branches and staff members.

2. Anticipatory care and long term conditions

2.2 Incorporate the treatment of dementia within a set of national clinical priorities

We welcome the recognition of dementia as a national clinical priority. Dementia is a key health issue facing our country over the coming decades. In less than 25 years, the number of people with dementia in Scotland is predicted to increase by 75%. This challenge is imminent, with a projected rise of over 10% in the next 5 years. Dementia is the cause of 11.2% of all years lived with disability in people aged over 60, more than stroke (9%), musculoskeletal disorders (8.9%), cardiovascular disease (5%) and all forms of cancer (2.4%) – it is therefore crucial that dementia is also a national priority in wider health and social care planning.

With planning and investment now, the impending dementia epidemic can be managed better, to the benefit of people with dementia, their carers and Scotland as a whole. Strategic planning must be put in place to provide the broad range of care and support that people with dementia and their carers will require, from diagnosis to end of life care. There should be an assessment of current and future local and regional needs, with an identification of gaps in provision. The appropriate level of support must be put into place to underpin the evolving model of care outlined in the consultation document.

A HEAT target for dementia which increases the rates of diagnosis will be an important driver for the prioritising of dementia.

Significant gaps in provision for people with dementia are in the area of preventive and anticipatory care, the patient as partner and support for self-care. People with dementia need the tools to become active participants in their own health care, develop their understanding of the illness and enhance their coping and self-management skills in order to improve their chances of continuing to live in their own homes for longer. They need to be supported to maintain or recover control in their lives as much as possible at each stage of the illness. It is particularly important that this support should be provided from immediately following diagnosis at a stage when the person with dementia still has the capacity to make decisions and plan ahead. There is at present a serious lack of such post-diagnostic support for people with dementia and carers.

Prevention and self care for people with dementia requires a good level of community based support that responds to the progressive nature of the illness. The current squeeze on local authority community care budgets works against this principle. Health and social care must be considered together to ensure that policy shifts in one area are complemented by the other.

Additional funding should be made available for research into the prevention and treatment of dementia.

There should be a high profile campaign to increase understanding of dementia as an illness and to combat the stigma that people with dementia and their carers face. This is essential in order to achieve early diagnosis, and to allow people with dementia to remain active members of their communities. Early diagnosis is vital if people with dementia and their carers are to be supported to manage the condition, avoid crises and plan for the future, so that they can remain as independent as possible for as long as possible and reduce the need for more expensive care services.

Drug treatments for Alzheimer's disease should be made available on the NHS for people in the early stages of the illness. Whilst these treatments do not work for everyone, they do help some people to regain or maintain many of their normal abilities. This is in keeping with the Government's policy of promoting self management of long term conditions.

Better dementia training is needed. Health care staff throughout the NHS need greater knowledge and understanding of dementia to aid positive approaches to communication and care. People with dementia can enter the health care system at any point and it is important that everyone, from reception staff to health care professionals, has an understanding of dementia. Every service used by people with dementia should have at least one member of staff appropriately trained in dementia care. This should apply equally to non-NHS and social care services which deal with people with dementia.

Staffing levels in acute care must be appropriate to provide the care that people with dementia will require. Basics are often lacking such as helping people eat, drink, go to the toilet and clean themselves. People with dementia are often routinely catheterised, leaving hospital incontinent, when they arrive continent. They can also leave underweight, constipated and dehydrated.

Good practice example: Alzheimer Scotland’s Dementia Nurse

Alzheimer Scotland funds a Clinical Nurse Specialist in Dementia Care at the Royal Alexandra Hospital in Paisley. A high proportion of older people with dementia will have other health problems that can lead to hospitalisation. It is estimated that there is at least one person with dementia at any time in each acute ward. Hospital staff often lack training to deal with the complex issues that arise. As the number of hospital beds decreases and the use of agency nurses increases, the needs of the most vulnerable are often misunderstood or ignored. This reduces the quality of care for patients with dementia, and contributes to bed blocking. It is vital that patients with dementia, whether it has been diagnosed or is suspected, who are admitted to an acute ward are assessed and cared for by professionals who understand and can meet their specific needs.

The Alzheimer Scotland Dementia Nurse plays a lead role in the development and delivery of an individually focused service to people with dementia in hospital, providing independent expert nursing advice, training, support to nurses and planning for discharge at the earliest opportunity.

2.2 Provide intensive case management based on individualised care plans which coordinate services

Intensive case management should start with early diagnosis of dementia and provision of post-diagnostic support. At the time of diagnosis support should be available to assist each person and their family with forward planning, and to establish continuing support which can give early warning of increased need, and avoid crises and delays in service provision.

Because no single service or agency will be responsible for all service-providing agencies, effective joint working between health and social care is essential. The appropriate level and quality of services must be available.
Care should be based on a continuing good knowledge of the individual and care plans should be kept up to date. There should be proper monitoring and review of the level and quality of care to ensure that the services provided are still meeting the needs of the person with dementia and address any need for additional care.
People with dementia and their carers need to be listened to and included as full partners in their care planning - it should not be assumed that the professional knows best.

2.3 Develop and introduce a self care strategy

We welcome the introduction of a self care strategy for long term conditions; as stated above, insufficient attention has hitherto been paid to supporting people with early dementia to manage their condition. The strategy should recognise and support the role of carers in conditions such as dementia where an individual’s own capacity to self-manage is impaired by the nature of their illness. Short ‘Living with Memory Loss’ training programmes for people with dementia and their carers have the potential to help start self care for people with dementia.

2.4 Ensure Carer Information Strategies in every area

There should be a national standard for information about dementia and services for both carers and people with dementia. NHS and care partners should give people with dementia and their carers appropriate general and local information at the time of diagnosis and throughout the illness, including information about available support from the voluntary sector, and about advance planning.

Good practice example: Dementia Information Guidelines

There is clear evidence that people with dementia and carers are not being provided with sufficient information at key points in the journey of care. A joint Information Guidelines Working Group has been established, including representatives of Alzheimer Scotland, the Royal College of Psychiatrists, the Scottish Dementia Working Group, NHS Quality Improvement Scotland and NHS Health Scotland, to develop new guidelines on the process and content of information provision at and after diagnosis. This will help to ensure that people with dementia and their carers have relevant, accessible and timely information, helping them to maximise their mental health and well-being by coping better with the impact of the diagnosis and its effect on their lives.

The forthcoming Integrated Care Pathway for Dementia will set standards for the provision of information. The new guidelines will form part of the NHS QIS toolkit to support the ICP by setting out what information should be provided.

Coping with dementia is a difficult path for people with dementia and their carers to negotiate alone and it can be hard to find out about services that are available. There should be a single point of contact for each person with dementia and their carer: someone who can help them to navigate their way through.

There must be acknowledgement that the carer needs support. Often the carers of people with dementia will be elderly and may themselves have poor health. In addition the strain of caring for a person with dementia often has a negative impact on the carer’s health. If the care becomes unwell or is hospitalised the care for the person with dementia can easily break down. The person with dementia is likely to be put into some form of emergency respite care, which can increase confusion and have a detrimental impact on the progression of the illness. Preventative support is as important for the carer as it is for the person with dementia. Carers should also be trained and informed about the illness in recognition of its complexity and the challenges they will face.

2.5 Ensure that ideas and initiatives from the voluntary sector are mainstreamed effectively

Voluntary organisations provide a wide range of services which often struggle because of the difficulty in achieving full cost recovery. Mainstreaming voluntary sector innovations should mean ensuring sustainability within the voluntary sector of innovative services which have proved their worth.
Flexible and imaginative voluntary sector services should be used as a model for dementia care – specialist, person-centred care that responds to the needs of the individual. The specialist knowledge of dementia that exists in the voluntary sector would be of great value to increasing knowledge and understanding in health and social care if utilised. For example, a dementia champion training programme is running in Dumfries and Galloway as a partnership between carers and Hamilton Campus, University of Paisley.

2.6 Work with local government and the voluntary sector to personalise community care services and deliver them increasingly at home or in homely settings

People with dementia need to be treated as individuals and their care should be person-centred, rather than people having to fit in with the services available.
Services should be person-focussed rather than task-focussed. Many carers report that home care services involve a succession of workers coming into the house to carry out tasks for as little as ten minutes at a time. This leads to increased confusion for the person with dementia, and tends to deny them the skilled support and time they need to do tasks for themselves to help to maintain their independence. For people with dementia, continuity and familiarity with staff is especially important. In addition, unfamiliar workers may carry out personal and intimate care tasks, which for someone with dementia who has difficulty understanding what is going on can be the cause of extreme distress.
The need for specialist dementia services provided by trained staff must be recognised. Many people with dementia have multiple and complex psychological and physical needs which cannot be adequately addressed by a ‘generic’ approach to care, or within generic services. In addition specialist services can provide much-needed advice and support to generic services who continue to provide help for many people with dementia who have less complex needs.
There should be a consistent standard of community care services, so that people with dementia and their carers know what to expect. Too often the care and support given to people with dementia is dependent on where they live.
There must be acknowledgement that current community care services for people with dementia and their carers are not of the level and quality required. The increasing restriction of eligibility for services to those at greatest risk runs contrary to the policy direction of preventative care.
The crucial role that the voluntary sector plays in dementia care should be recognised, valued and supported. Current funding regimes and uncertainty are often detrimental to voluntary sector services for people with dementia and their carers. It is often the voluntary sector that feels the pinch first when local authorities tighten budgets; this undermines the overall aims of preventative care and of maintaining people with dementia in the community for as long as possible. There should be core funding of services that have proved their value. Funding reductions in acute care must be followed through by redistribution of resources to high quality community care.

2.7 Make the Gold Standards Framework the norm for people nearing the end of their life

There must be a fundamental shift to acknowledge dementia as a terminal illness that requires palliative care and recognition that currently end of life care is not good enough for people with dementia and their carers. Choice of where end of life care is given is important; it should not be assumed that all people with dementia will end their life in some form of institutional care. Medical and emotional support must be put in place to support the carer if the person they care for remains at home.

We would welcome the adoption of the Gold Standards Framework for end of life care for people with dementia. Whilst the standards provide a strong basis of support for both the person with dementia and the carer living in the community it is important that there is a consistent high standard of palliative care in all other care settings. Important issues to be aware of in palliative care for people with dementia are maintaining important relationships, communication, the control of pain and discomfort, feeding and nutritional problems including swallowing, the management of infections and the maintenance of personal integrity and dignity.

Good practice example: Beyond barriers - developing a palliative care approach to care for people with dementia in care homes

Beyond Barriers is two-year project funded by the Scottish Government. It is a partnership between Alzheimer Scotland and the Care Commission and will be evaluated by the Dementia Services Development Centre.

The project aims to develop current care practice by supporting staff and relatives to meet the palliative care needs of people with dementia. The project is developing and implementing an education programme for care home staff and relatives of residents with dementia, linked to Scottish Vocational Qualifications (SVQs). This has been piloted in three care homes in Dumfries and Galloway and will be rolled out nationally through a network of care home champions.

2.8 Develop greater capacity for cognitive and other psychological therapies

The emotional support needs of people with dementia and carers must be recognised. These may be met by a range of interventions, depending on the needs of the individual; for example, by using the Dementia Helpline, peer support though groups, support from a trained voluntary sector worker, formal counselling or access to a clinical psychologist or involvement in a range of therapies.
Cognitive and other psychological therapies should be more widely available to people with dementia and their carers when they are needed. They can be important for many reasons including dealing with the psychological impact of the illness, maintaining skills, prolonging independence, stimulation, helping with communication and managing behavioural changes.
Depression is commonly experienced by people with dementia and can occur at any stage of the illness. The symptoms of depression can exacerbate the effects of dementia and cause additional distress for both the person with dementia and their carers. It is therefore important that depression in dementia is diagnosed and treated.
Carers of people with dementia are also more susceptible to stress and depression, particularly when the person with dementia experiences psychiatric symptoms or behavioural disturbances. They also need access to appropriate support.

Therapies should be person-centred and based on individual assessments; one size does not fit all. Appropriate cognitive and psychological therapies for people with dementia include (but are not limited to):

• Memory training
• Reminiscence work including life story work
• Speech and language therapy
• Recreational and occupational activities
• Creative therapy
• Training and rehabilitation in activities of daily living
• Counselling for the person with dementia and the carer.

2.9 Secure the full engagement of the Public Health community
There is now good evidence to suggest that lifestyle changes from middle age onwards, including health eating, physical activity, mental stimulation and maintaining good social networks can decrease the risk of developing dementia in later life or delay its onset. If we are to have any impact on the projected increase in the number of people with dementia in the future, it is vital that these messages are widely disseminated to the public.

Good practice example: Alzheimer Scotland’s ‘Good for you, good for your brain’ campaign
Partly funded by the Scottish Government and backed by a consortium of charities and other organisations, Alzheimer Scotland’s two-year dementia risk reduction campaign aimed to raise awareness of the lifestyle changes which can help reduce risk. The campaign materials were ‘Highly Commended’ in the British Medical Association Patient Information Award for Printed Materials.

Promoting the physical and mental health of people who have dementia is also important; a diagnosis of dementia may make it more difficult for people to eat healthily, or to be active physically, socially or mentally. Support should be provided at all stages of the illness, including in long stay care, to help people live as healthily as possible.

It is also important to tackle the stigma and lack of public understanding of dementia which impacts on the quality of life of both people with dementia and their carers. At present dementia is under-diagnosed, in part because people are unwilling to go to their doctors because of stigma and misconceptions about the illness or what treatment or support may or may not be available. Dementia needs to be “normalised” as an illness, much in the way that the position of cancer has changed over the past few decades.

2.10 Implement Delivering Care, Enabling Health, to support health professionals to support self management

We agree that it is important that health professionals place support for self management at the core of their practice. We would also point out the potential for extending the role of the voluntary sector in the delivery of self management programmes and support of self management.

3 Additional points

We have focussed the majority of our response on the framework for discussion on anticipatory care and long term conditions. However, we have some additional points to make on other issues.

3.1 Involvement

We strongly support the principle of involving people as patients, service users and carers in the design and delivery of local services, as well as in national policy making. If it is to be more than token involvement of a few articulate individuals, however, involvement work needs to be resourced.

Good practice example: Scottish Dementia Working Group

The Scottish Dementia Working Group (SDWG) is a self-run national group of people with dementia funded by Comic Relief and Alzheimer Scotland. The Working Group campaigns to improve services for people with dementia and to improve attitudes towards people with dementia. Despite having only one member of staff, it has been highly active, facilitating people with dementia’s contribution to policy initiatives, campaigning, for example for access to Alzheimer's disease drugs, meeting politicians and speaking at conference across Scotland and internationally.

3.2 Information provision

The issue of information for patients and carers, and its consistency and accessibility, arises at a number of points in the discussion document. This is an area where the voluntary sector can, and does, contribute, and we would like to see a more strategic approach to utilizing and resourcing their expertise. At present, NHS patient information provision is often piecemeal and of variable quality, and NHSScotland staff sometimes duplicate effort by producing their own materials where resources already exist. In addition, our own experience is that there is often no budget for information materials. Two examples of this are:

• NHS Health Scotland publishes an important handbook for carers of people with dementia, Coping with dementia, but old age psychiatry services in some areas are unable to provide it to carers because they have no budget to buy it from health promotion departments.
• Alzheimer Scotland has to charge for supply of its publications to the NHS in order to pay for their production; but we find that often NHS departments are unable to pay, and therefore people with dementia and carers are denied information which could help them.

3.3 Working beyond the NHS

We strongly agree that it is vital for NHSScotland to work more effectively with delivery partners in local communities, and to challenge boundaries to share premises and resources. This should include working with both local authorities and the voluntary sector to ensure that the right mix of services is provided in the community to maximise the health and wellbeing of people with dementia and of their carers. It is important that the health and wellbeing priorities and action plan link to priorities in social care and in particular Changing Lives – Report of the 21st century social work review.

3.4 Improve access to health services by developing the services offered in primary care

There should be a broadening of the range of services delivered in the community and by primary care. Local health centres should be more responsive to the needs of people with dementia and their carers. For example the availability of home visits is very important for people with dementia and their carers; people with dementia may be reluctant to come for professional advice, and they and their carers often find it difficult in a clinical setting to describe the realities of life at home. There should be better training to ensure improved knowledge and understanding in primary care of dementia and the need for early diagnosis and support. Some people with dementia report finding it difficult to use NHS 24 because of the number of questions asked, and would prefer a local out-of-hours service.

Conclusion

Alzheimer Scotland welcomes the continuing shift towards anticipatory, community-based care which recognises patients and carers as partners. For this approach to succeed for people with dementia and their carers, dementia must be seen as not only a clinical priority but also a care priority, and planned for at every stage from risk reduction through early diagnosis and support to end of life care.

We would like to see an action plan which is truly joined-up, and goes beyond NHSScotland to encompass community care services and the voluntary sector, in order to facilitate a whole-systems approach to dementia care.

We would be happy to provide further information, or to discuss any of the issues raised in this response.

Jim Jackson
Chief Executive
9 November 2007