Making the journey brighter: early diagnosis and support services for people with dementia and the

Executive summary

Introduction

1.1 This report is intended to encourage the rapid development of early intervention services for people with dementia.
1.2 Improved diagnosis and treatment and increased awareness of dementia mean that many people are now being given a diagnosis of dementia at an early stage.
1.3 Their needs for information, emotional support and therapeutic intervention including drug treatments, rehabilitative assistance and other therapies, and their families’ needs for information and support, are not yet being properly met.
1.4 In Scotland, about 18,300 people have early stage dementia.
1.5 People with early stage dementia and their families have a range of needs, including diagnosis, assessment and treatment, information, and practical, emotional, social and financial support; and these needs must be met in order for them to maintain a good quality of life.
1.6 The specific needs of individuals will depend on their circumstances and the interaction of key factors including the wishes and views of the person with dementia and carers, their individual characteristics and situation.
1.7 People in the early stages of dementia may not at first need to be cared for, and family members are unlikely to consider themselves in the role of ‘carer’. Their role at first may be more that of a ‘supporter’. Early support can help to reduce the risk of carer stress at later stages.
1.8 There is evidence that early medical and psychosocial interventions not only improve the well-being of the person with dementia and his or her carer and family during the early stages of the illness, but, by supporting the carer and reducing carer stress and burden may also postpone the need for long-stay care later in the illness.
1.9 Early interventions needed include:

• accurate and timely diagnosis and assessment
• appropriate medical interventions, both for cognitive symptoms and for other conditions
• accurate information in a form that is helpful, including the name and nature of the illness, its possible symptoms and other effects and how to cope, treatment options, legal issues and making arrangements for the future, services and financial issues
• counselling and other forms of emotional support for both the person with dementia and his or her family and carers
• support groups for people with dementia
• carer support groups and carer education
• rehabilitative approaches such as memory training and compensatory memory strategies and aids
• advocacy to assist people with early dementia speaking up for themselves and support them in decision-making
• one-to-one support by paid staff or befrienders
• aids and adaptations to help to maintain independence.

2 How can early intervention services be provided?

2.1 Groupwork
2.1.1 Rutherglen Dementia Support Group is a community-based project providing a six-week structured educational programme, leading on to a continuing fortnightly support and social group for people with early dementia.
2.1.2 The Memory Remediation Group at Newcastle Memory Clinic takes a structured rehabilitative approach to providing coping strategies for dealing with memory problems, maximising people’s capabilities for dealing with the challenges of their illness.
2.1.3 The Early Stage Dementia Support and Respite Project in Australia is a nationally-funded programme of early stage dementia support groups, which provides guidelines and standards for a 6-8 week education course followed by ongoing monthly discussion and support groups for people with dementia, and concurrent carer support groups.
2.2 Support to maintain involvement and independence
2.2.1 The Side by Side Befriending Scheme in Nottingham uses volunteers to provide people with dementia with befrienders matched for interests and location.
2.2.2 Diff’rently the Same in Glasgow provides six hours of regular weekly one-to-one support by paid staff.
2.2.3 Memory Works in Tennessee provides a day centre where, as well as social and leisure activities, users have the option of choosing to participate in supported paid work.
2.3 Information and support services
2.3.1 The Memory Clinic Link Workers in Dumfries and Galloway are core members of community mental health teams and are key workers for individuals with early dementia, providing information and support until the person’s care needs become complex and another team member takes on the key worker rôle.
2.3.2 Fife Memory Clinic/Early Stage Service provides information and support through a worker who is part of the multidisciplinary team at the memory clinic, and the early stage service is integrated with Alzheimer Scotland’s other specialist dementia services in Fife for support throughout the course of the illness.
2.3.3 The WISDOM Project in South Ayrshire operates independently of multidisciplinary teams, and aims to remove the dividing line between dementia and other mental health problems of older people in offering them information and support.
2.3.4 The First Hand Project in Glasgow operated as an independent free-standing project, supporting people with dementia referred from a range of sources.
2.3.5 The Dementia Advice and Support Service Project (DASS) was an initiative to develop advice and support services for people with early dementia. Experience from the six pilot sites raised a wide range of issues from the challenge of getting referrals and interagency working to management issues, the difficulty of supporting people who had not been told their diagnosis, and the pros and cons of working with volunteers.
2.4 Self help
2.4.1 Dementia Advocacy and Support Network International, a web-based network of people diagnosed with dementia, shows the potential for people with early dementia to support themselves.

3 The policy context for improving early stage dementia services

3.1 Improving services for people with early dementia has to be part of the reforms taking place in Scotland’s health service and local authorities.
3.2 There will need to be integrated dementia strategies at both health board and community health partnership levels that ensure that services are provided throughout the patient’s journey and that services which need to be planned at a higher level than the community health partnerships are not neglected.
3.3 Creation of national clinical standards that will help drive the redesign process needs to be high on the priorities for NHS Quality Improvement Scotland.
3.4 People with early dementia must be involved and consulted, not only in planning how to meet their personal support needs and the decisions that affect their lives, but also in the development of services.
3.5 There needs to be a balance between cost and quality. Very expensive services would benefit only a small number of Scotland’s 10-12,000 people diagnosed with dementia each year. Services that are of too low a quality may be money wasted because of under-use.
3.6 Equal opportunities must be central to early stage services.
3.7 Best value should be uppermost in the minds of planners and commissioners of service for people in the early stages of dementia.
3.8 Community planning has the potential to ensure that the services that people in the early stages of dementia require are not lost in the gaps between different areas of responsibility, for example with the use of ‘Supporting People’ funding to help people in the early stages of dementia maintain and manage their accommodation.
3.9 Two fears are that community planning will be too complex to understand easily and that the services that are modest in scale will be overlooked or overwhelmed by mainstream services.

4 Conclusions and recommendations

4.1 The lessons from research and the recent increases in understanding of the impact of the illness in its early stages both point unequivocally to the need for a complex array of services.
4.2 Although national health service and local authority policies have the potential to provide a supportive framework for the development of new early stage dementia services, these policies will be insufficient unless there is a strong commitment at all levels of government to ensure that the needs of people with dementia are translated into the creation of services.
Recommendations
4.3 All health boards and local authorities should have clearly identifiable 'dementia strategies' that are incorporated into their operational plans and management.
4.4 'Dementia strategies' need to recognise that the different stages of dementia require different service responses.
4.5 Early stage dementia services should be seen as integral parts of the care pathway for people with dementia and the proposed managed clinical and care networks for people with dementia that are being considered in some parts of Scotland.
4.6 Early stage dementia services need to be given equal priority to community-based services supporting people in the middle to later stages at home and to high quality long term care for those who can no longer live at home.
4.7 The development of new services for people in the early stages of dementia should take into account the full range of services required - diagnosis, assessment, drug treatment, information, counselling and emotional support, support groups, carer education, rehabilitation, advocacy, befriending, one-to-one support, aids and adaptations - and the need for them to work together effectively.
4.8 There must be more rigorous evaluation of the developing early stage services in order to strengthen the available evidence.
4.9 There is a need to continue to raise public awareness and understanding of dementia if people with the symptoms of possible dementia and their families are to know when and how to seek a diagnosis.

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