Health and Community Care Campaign Policy

1 Introduction

Health and community care policies and the ability of health and social care services to help people with dementia are central concerns for Alzheimer Scotland. The Dementia Epidemic report in 2007 set out the projected increase in number of people with dementia of 75% in less than 25 years, set against a picture of inadequate and inequitable current service provision, with serious concerns about the quality of some services.

This paper sets out Alzheimer Scotland’s policy positions on policies, structure, practice and quality in the diagnosis, treatment, health and community care of people with dementia. These policy positions are based on past consultations with our members and on our published policy reports. This paper is intended to clarify our policy by drawing together summaries of our position on a range of issues.

This paper is a companion to the ‘Rights and Legal Protection Policy’ paper published in July 2005, which covers issues of the rights and legal protection of people with dementia, and on ethical issues that affect their lives

This paper examines some of the critical problems being faced by people with dementia and their families and considers them in the context of recent Scottish Government initiatives; the planning, organisation and quality of services; other pressures on the health service and the potential for prevention. The paper concludes by setting out the policy positions that constitute this health campaign policy. When considered as a whole these policy positions will require a radical overhaul of dementia services in Scotland.

2 An initial statement of the problems

There are approximately 58-65,000 people with dementia in Scotland, 1,350 – 1,650 whom are under 65. By 2031 it is projected that there will be approximately 102,000 – 114,000 people with dementia in Scotland. Dementia is a major cause of disability in people aged over 60. It contributes 11.2% of all years lived with disability, more than stroke (9%), musculoskeletal disorders (8.9%), cardiovascular disease (5%) and all forms of cancer (2.4%).

Approximately 6,500 people should be diagnosed with the illness each year. The NHS and community care services play a critical role in the care of people with dementia as they progress through the stages of the illness from diagnosis to palliative care. People with dementia and their families face a number of difficulties with current health and community care services.

Different circumstances in different areas mean that people’s experiences differ, but difficulties can include:

1. it is still the case that stigma and lack of public understanding of dementia prevent people from seeking help;
2. a substantial number of people with dementia remain undiagnosed as having the illness - only 44% of people with dementia diagnosed in the early/mild stage (1);
3. there are hidden cases, where dementia goes unrecognised by health, community care or housing services;
4. there is poor communication/co-ordination, for example, between primary care and old age psychiatry services, resulting in delayed diagnosis and possible lack of access to drug treatment for early Alzheimer's disease;between acute care and psychiatric services, resulting in deficiencies in care for people with dementia in acute wards; and between health and social care services, resulting in delay or lack of appropriate services;
5. there is a lack of post diagnosis follow up: advice, information, support, self-management, cognitive and other rehabilitation, including specific psychological treatments;
6. people with dementia who have other conditions, eg hearing loss, are not always given access to suitable services;
7. the volume of community care services for people with dementia is limited eg day care and community opportunities, home support and respite care and eligibility criteria are tightening reducing availability further;
8. there is a lack of dedicated care management or a single point of contact for the carer and the person with dementia;
9. there is a lack of either specialist services for people with dementia or generic services where staff have been adequately trained;
10. there is a lack of sufficient support for carers including help to maintain their relationship with the person with dementia and lack of bereavement support for carers
11. people with dementia who need acute medical care do not always receive satisfactory care because their dementia is inadequately recognised or staff lack training to know how best to respond;
12. there is a lack of understanding of dementia in staff at all levels from reception staff onwards affects the service people receive;
13. models of care geared to moving people on quickly disadvantage people with dementia;
14. the low status of care work is an issue and leads to difficulties including communication difficulties between staff and service users where jobs are taken up by recent migrants with limited English;
15. the quality of long term care is variable with differences in staffing levels, training provision, physical environment and the provision of appropriate activities;
16. nutrition problems are not given proper attention;
17. there is a lack of use of a palliative care approach for people with dementia.

3 Recent initiatives

The most promising recent policy initiatives are:

• the recognition of dementia as a priority by the Scottish Government in Better Health, Better Care: Action Plan (2008) and the formation of the Dementia Forum chaired by the Minister for Public Health
• the current development of local Integrated Care Pathways (ICPs) for dementia based on the Standards for integrated care pathways for mental health (2007).

Better Health, Better Care continues the policy direction for the NHS, set out under the previous administration in Delivering for Health (2005). This aimed to move away from a focus on acute care in hospitals and towards:

• prevention;
• support for self care and intensive case management where needed for long term conditions;
• anticipatory care;
• more local services; and
• targeting of health inequalities.

Better Outcomes for older people – Framework for joint services (2005) promoted the development and mainstreaming of joint and integrated services as part of Joint Futures and listed assessment and care management arrangements including

• pre- and post- diagnosis support;
• day opportunities;
• home support;
• respite care and supported housing;
• terminal and palliative care as areas of opportunity for the development of joint dementia services.

The new HEAT target (2) for dementia should improve performance management of the health service as it relates to dementia.

The concordat between the Scottish Government and COSLA (2007) commits the Government to making individual outcome agreements with local authorities which prioritise improving outcomes for frail older people and family carers by investing in:

• care home quality;
• increasing free personal care payments;
• significantly extending respite care; and
• other carer support.

Although NICE Clinical Guideline 42, endorsed by NHS Quality Improvement Scotland, restricts drug treatment for Alzheimer's disease to the moderate stages, there is already a basis for a fully-comprehensive approach to treatment in Scotland. The Scottish Intercollegiate Guidelines Network (SIGN) guideline (3) is positive regarding treatment at all stages. Both the SIGN and NICE guidelines are endorsed in the Standards for Integrated Care Pathways for Mental Health which will be the basis of audit in Scotland.

4 The patient’s care pathway

The concept of the patient’s care pathway can be used to bring together the health and social care problems facing people with dementia and their carers, relevant parts of recent initiatives and areas where new initiatives are needed.

The basic requirement which applies at all stages in the care pathway is that people with dementia and carers need to know who to approach, agencies need to be connected and local services need to be good quality, specialist if required, and available.

NB The list of new initiatives is not exhaustive.

4.1 Early symptoms of dementia

The problems
Lack of public understanding of the illness, lack of recognition of the significance of memory problems, stigma, fear/ denial of the illness, uncertainty about what to do

Lack of knowledge by staff such as housing, social care and primary care staff, who may be the first to notice possible dementia

Relevant activities
New HEAT target for diagnosis; Alzheimer Scotland’s Dementia Awareness Week; public awareness campaigns; dementia-friendly communities initiatives

New initiatives needed
Larger scale public awareness campaigns, health education programmes

Accessible information from Alzheimer Scotland and NHS Health Scotland

Local protocols and training for non-specialist staff on recognition of possible dementia

Proactive programmes of memory assessment may improve detection

4.2 Diagnosis

The problems

Delayed diagnosis, poor communication/co-ordination between primary and secondary care, no follow up to diagnosis

Relevant activities

Memory Clinics and other diagnostic arrangements, Managed Care Networks (MCNs), ICP

New initiatives needed

Development of MCNs

Improved access to Memory Clinics and other diagnostic arrangements

Use of telemedicine in remote areas

4.3 Alzheimer’s drug treatments

The problems

Restriction of treatment in NICE Guideline

Relevant activities

NHS Quality Improvement Scotland/Scottish Medicines Consortium, as above for diagnosis, SIGN Guidelines

New initiatives needed

Promote access to treatments from early stages and throughout the illness in line with SIGN guidelines

Monitor access to treatments

Research into which patients respond to which treatments

4.4 Post-diagnostic support/early stage assistance

The problems

Need for support services hardly recognised

Lack of these services fundamental to lack of development of local involvement.

People receiving drug treatment receive better follow-up than those not receiving it

Relevant activities

Memory clinic link workers, Early stage services, Carer Education, Advocacy, welfare benefits assistance

New initiatives needed

Scottish Government, NHS Scotland and local authority recognition of the need for services for this stage of the illness and funding

Stepwise response offering level of one-to-one and group support appropriate to individuals; much of this could be delivered more cost-effectively by voluntary sector rather than NHS staff - important not to medicalise post diagnostic support more than necessary

Better support for advance planning eg powers of attorney and advance directives
Single point of contact for every person with dementia – eg GP, care manager, CPN or ‘dementia visitors’ – similar to health visitors with responsibility for elderly care

Self-management courses for people with dementia and carers

Provision of appropriate specific psychological therapies

Better support for involvement groups

Regular follow-up and assessment for all

Provision of advocacy services and pilot of advocacy worker involvement at 15 month GP reviews

4.5 Community care

The problems

Limited volume of community care services for people with dementia and carers eg day care and day opportunities, home support and respite care

Lack of either specialist services for people with dementia or trained staff in generic services

Inappropriate services

Refusal of services which are unsuitable or do not fit needs and wishes

Relevant activities

Single care plan standard in ICPs; Joint Future services; intensive care management; Care Commission and inspection against national care standards, use of self-directed care payments to give service users increased choice and control, National Outcomes for Community Care

New initiatives needed

Dementia perspective in national care standards

Improved access for people with dementia to self-directed care payments

Ensuring that people with dementia have the same access to health and community care services as the rest of the population

Dementia training for care staff

Greater use of assistive technology

Ensure provision of range of services, to allow personalised responses to care needs

4.6 Admission to and discharge from hospital care

The problems

Services not able to manage the ‘dementia’ as well as the reason for admission, lack of training in dementia care, lack of access to specialist advice,
insufficient staff to give sufficient attention to the person with dementia, discharge may be delayed if insufficient attention is given to the patient’s dementia symptoms

Relevant activities

Older People in Acute Care Standards

Alzheimer Scotland Specialist Dementia Nurses supporting staff in hospitals

Liaison psychiatry

New initiatives needed

More active liaison between old age psychiatry and other specialities and acute hospital care

More dementia specialist advisory nurses

Train joint discharge/rapid response teams in rehabilitation techniques for people with dementia

4.7 Long term care

The problems

Variable quality, quantity

Many residents have undiagnosed dementia, lack specialist interventions

Location unsuitable

Staff lack dementia training

Communication difficulties with staff

Relevant activities

Care Commission and inspection against national standards

NHS Quality Standards

Outreach by link nurses eg Falkirk

New initiatives needed

Technical assistance, joint working where appropriate and support from health and social care services to assist residents in care homes whose behaviour is particularly challenging or who require palliative care Dementia perspective in national care standards

4.8 Palliative care

The problems

Lack of palliative care approach for people with dementia

Relevant activities

Hospice movement

National Clinical Standards for Palliative Care

Alzheimer Scotland Beyond Barriers palliative care training project

Advance care planning standard in ICP framework

New initiatives needed

As above for long term care

National roll-out of dementia palliative care training after Beyond Barriers

5 Planning, organisation and quality

The patient’s journey approach focuses attention on the failures of service delivery as perceived by people with dementia and their carers. These failures are not only in the delivery of services but also in planning, organisation and quality of delivery.

The planning which might be expected to have an impact on dementia care is not to be found in a single plan. Community care plans, community health partnership plans, mental health frameworks, joint plans for older people’s services and Joint Performance Information and Assessment Framework (JPIAF) plans all contain some, if not all, of the services needed by people with dementia. The plans have been characterised by their variability and most lack attention to the detail of dementia care.

Performance management is beginning to take account of dementia and to provide potential measurement of impact. Through the Quality Outcomes Framework (QOF), GPs have been incentivised to operate registers of patients with dementia and to review their care every 15 months. Building upon this, from 2008, the HEAT target for dementia for the health service means that each NHS board must achieve agreed improvements in the early diagnosis and management of patients with a dementia. They will be expected to achieve a 33% increase in the number of patients with dementia registered on QOF by March 2011. Other HEAT targets relevant to people with dementia include reducing emergency hospital admissions of people over 65, reducing readmissions to psychiatric hospitals and increasing the level of older people with complex care needs receiving care at home.

2007/08 is a transition between JPIAF and the new national outcome-based performance frameworks being introduced by the Scottish Government from April 2008, including the Single Outcome Agreement with local authorities. The new Community Care Outcomes Framework focuses on qualitative outcomes for users and carers. It comprises four high level outcomes, 16 measures and, for 2007-8, 5 existing targets and is currently being further developed and reviewed for 2008-8 in the context of the wider National Outcomes Framework. It is not yet clear whether any more detailed information specific to dementia will be available; the documents talk about being able to drill down, but it is important to ensure that the right data is collected to allow this. Current data understates service use because of the difficulties local authorities have in labelling people with dementia. We need to try to find conventions of how to record dementia, for example when a service user has multiple conditions, and to ensure that it is recorded.

Until now, local improvement targets (LITS) have formed part of JPIAFs and have been monitored by the Scottish Government. The SG sees these as remaining an integral part of local performance reporting, but they will no longer be reported or evaluated nationally

Effective joint working between health and social care remains a theme. The main solutions which have been pursued have been the joint planning and management of services for older people, the mental health framework, community health partnerships and JPIAF. The merit of these approaches is that they avoid the disruption that structural change would cause if there was to be a more formal amalgamation of health and social care. It is also possible to argue that this is just a stage in the move to some form of amalgamation which will happen sooner or later.

Nevertheless, there is recognition that more needs to be done to effectively integrate services and this should not be restricted to health and social care. A longer term and more radical perspective would be looking at the balance of professional skills within an integrated service/workforce and possibly integrating primary and secondary care.

Other developments relevant to the way dementia services are Managed Care Networks (MCNs) and collaboratives. MCNs are seen as cross cutting structures that will develop standards for services along the care pathway and integrate the different services that a patient requires. Collaboratives are time-limited improvement programmes focussing on specific topics. The approach supports participating improvement teams in understanding care delivery processes and systems and then in testing and implementing changes.

The dementia MCN in Tayside brings together:

• health
• social work
• the voluntary sector
• service users; and
• carers

• early diagnosis;
• education;
• involvement; and
• an Integrated Care Pathway for dementia.

However, this remains the only dementia MCN in Scotland. There are overlaps between the concepts of MCNs, ICPs and the processes and structure needed to produce them and collaboratives. Although there is an obligation to develop ICPs, MCNs may add value in some areas.

The Dementia Services Development Centre has run a one-year dementia collaborative project in Forth Valley due to report in early 2008-9. Two further three-year collaboratives are beginning, supported by the Scottish Government, which are relevant to dementia - the Mental Health Conditions Collaborative programme, in partnership with NHS Greater Glasgow and Clyde and the Long Term Conditions Collaborative Programme, in partnership with NHS Tayside.

It is of little use to people with dementia and their carers if the services they receive are of poor quality. The Care Commission inspects most of the community based services used by people with dementia but the standards which they inspect against are not dementia specific. Following the Crerar Report on audit, inspection and regulation of public services there is a move towards multi-agency inspections, for example involving the Care Commission, Mental Welfare Commission and the Social Work Inspection Agency (SWIA). More work needs to be done to create a ‘dementia perspective’ which could be added to generic standards.

6 Other pressures on the health service and local authorities

Not only does the health service face the challenge of the problems listed in this paper but there is the political pressure to do better on problems such as waiting lists and delayed discharge. Even though increased funding has been provided to the health service and some directed at these problems, the impression, in part generated by the media, is that the health service is in crisis and unable to change. This may well be an exaggeration but it points to the problem that the health service has in living up to expectations held for it. Some commentators have pointed to the overload of initiatives and the subsequent impact on staff morale and turnover. Critical problems such as IT support for single shared assessments and the ability to recruit suitable qualified staff, from specialists in old age psychiatry to care assistants, have a major impact.

Meanwhile, local authorities face the twin pressures of restricted budgets and the growth in the older population. Eligibility criteria seem to be tightening and the perception is that people need to be at crisis point in order to be offered a service. This runs counter to the ideal of anticipatory care and must have a negative impact on health service targets.

7 Risk reduction

For the past two years, Alzheimer Scotland has been running ‘Good for you, good for your brain’, a campaign to raise public awareness of the lifestyle changes which could reduce the risk of dementia. There is growing evidence (4) that behaviour in the middle years influences dementia risk in later life, and the campaign focuses on four of the areas with the best evidence: diet, physical activity, mental stimulation and social stimulation.

The biennial public awareness survey carried out by Alzheimer Scotland was redesigned in 2005 to incorporate questions measuring health behaviour change and provide a baseline. The survey of December 2007 shows significant evidence of increased awareness of lifestyle factors as they relate to dementia risk and of behavioural change. Not all of this is likely to be attributable to our campaign: there is also growing media interest in this area.

However, there remains a great deal of work to do in this area to increase the reach of the message and to reinforce it.

8 Policy positions

This section of this paper brings together 42 policy positions under the headings of policies, structure, practice, quality and services and community. These are the policy positions that that Alzheimer Scotland will campaign for until this health and community care campaign policy is reviewed.

This list of policies is referenced where policies have been set out in Alzheimer Scotland public policy publications (5).

8.1 Policies

1. Dementia should remain as a national priority and should be resourced in line with demographic change and the projected increase in the number of people with dementia. (DE, Man)
2. The national dementia strategy should progressively evolve to guide the development of dementia services in line with demographic change.
3. There should be a joint health and social care dementia plan for each local authority and health board area, incorporating distinct plans for younger people with dementia and other sub-groups of people with dementia.
4. Existing drug treatments should be made available on the basis of the SIGN guideline. (DE, Man)
5. The active involvement of people with dementia and carers in influencing local and national policies and service provision should be further supported and resourced.
6. Procedures should be developed to ensure that dementia is reliably recorded on service users’ records and that data is collected in such a way that provision of services to people with dementia can be separately evaluated.
7. There should be awareness raising programmes that encourage earlier detection of symptoms, tackle stigma and enhance the capacity of communities to support people with dementia.
8. There should be investment in a major public health campaign to reduce people’s risk of developing dementia in later life, by encouraging healthy eating, physical activity, mental exercise and social stimulation. The campaign should be targeted taking into account health inequalities. (DE)
9. There should be support for research into better preventive treatments, better symptomatic treatments, causes and ways of preventing or delaying dementia, and for research that will help improve the delivery of dementia care. (Man)
10. The recommendations of the Audit Scotland report on free personal and nursing care (6) should be implemented and allowances regularly uprated in line with increases in care home fees. (DE, Man)
11. Free personal care should be extended to people with dementia under 65. (Man)

8.2 Structure

1. Core old age psychiatry should maintain its identity and be integrated with community based services. There should be recognition that diagnosis and management of uncomplicated cases of dementia may be taken on by primary care services working with other professionals including specialist nurses, occupational therapists, social work staff and voluntary sector staff, with specialist support from old age psychiatry. It should be clear in every local structure whose responsibility it is to deal with dementia issues.
2. People with dementia and carers need services which work together: there should be more structures such as MCNs which integrate the work of different agencies.
3. Community health partnerships should be required to co-operate on issues that require a response over larger population areas eg younger people with dementia, minority ethnic communities.
4. The joint management and resourcing of services for older people should be encouraged to develop further and evaluated. If this is not found to be effective, consideration should be given to putting them under a single management structure.

8.3 Practice

1. There should be effective use of information from single shared assessments by all agencies involved in the care of people with dementia, whether they are public, private or voluntary sector.
2. The Dementia Information Guidelines under development by a joint working group should be followed in all areas as soon as they become available, including the requirement that when people are given a diagnosis of dementia they and their carers should also be given information about the Dementia Helpline and local dementia services.
3. The development of local integrated care pathways for dementia should be used as an opportunity to focus on the collaborative dementia services which already exist and gaps in current provision, and to help drive improvements in dementia care, especially treatment.
4. There should be a medical assessment for every person in a care home whom staff believe may have dementia and improved access to doctors and specialist services for care home residents. (DE)
5. The importance of listening to people with dementia and carers should be recognised by all service providers, and reflected in their practice.

8.4 Quality

1. A dementia perspective should be added to the standards used in single- or multi-agency service inspections by the Care Commission, Mental Welfare Commission and SWIA, for inspections of both generic and specialist dementia services.
2. Services should recognise the differing and distinct needs of people with dementia and their carers eg younger people with dementia, people from ethnic minorities with dementia.
3. There should be better primary care input into long-term care. (DE)
4. There needs to be an old age psychiatry and community psychiatric nursing input into care homes and acute and general health care.
5. There should be better pre- and post-qualification education and training for health and social care professionals and in-service training in dementia care for staff in both generic and specialist services. (DE, Man)
6. There should be better funding for long stay care to allow improved staff ratios. (TIMH)
7. There should be greater use of assistive technology to enhance independence and quality of life.
8. More attention must be given to training and supporting care home staff in dementia care and in palliative care approaches to dementia (TIMH), with a national roll-out of dementia palliative care training after the conclusion of the Beyond Barriers project.
9. The lack of recognition and understanding of dementia among A&E and acute hospital staff should be further addressed, through initiatives such as dementia nurse specialists.
10. Joint discharge/rapid response teams should be trained in rehabilitation techniques for people with dementia.

8.5 Services and community

1. In each local authority and health board area there should be comprehensive provision of services, from diagnosis to palliative care.
2. There should be local protocols and training for non-specialist staff on recognition of possible dementia.
3. Early diagnosis should be given greater priority, with full post-diagnostic support services offering a stepped response including information, emotional support, rehabilitation services, counselling, support for advance planning and support groups, as required by each individual. (MJB, Man)
4. There should be funding for a programme of self management courses for people with dementia jointly with carers as part of a strategy of saving future costs through anticipatory care. (DE)
5. There should be support for carers of people with dementia, providing relevant information, peer support, counselling, carer education and one-to-one support in developing coping strategies, and such services should be responsive and flexible to reflect the diversity of carers and their experiences. Support should continue to be made available after the person cared for enters long stay care or dies. (STS)
6. There should be increased funding for respite services such as home care, day care and short breaks and recognition that personalised care through specialist dementia services may be more cost effective in the long term by allowing people to remain in their own home for longer. (SB, DE)
7. There should be access to allied health professionals with specific dementia training and expertise.
8. There should be improved access for people with dementia to self-directed care payments.
9. There should be a clearer distinction between planned and emergency respite and strict guidelines on categorisation of services for reporting purposes. Data on day care, planned respite and emergency respite services should be separated out so the level of service provided is known. (SB)
10. Short breaks should be made more effective by being flexible, with more variety particularly of home-based options and small, homely environments, and more planned provision. (SB)
11. People with dementia in care homes must be treated as individuals and receive effective, flexible, person-centred care. (TIMH)
12. Care home environments should be improved so that the design is dementia-friendly. (TIMH)
13. Positive community responses help people with dementia and their carers to live their lives as normally as possible for as long as possible; there should be more work to encourage ‘dementia friendly communities’.

Kate Fearnley
Health and Community Care Director
17 March 2008

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References

1. GFK Group (2006) The Dementia Carers' Survey
2. NHS targets monitored by the Scottish Government. HEAT stands for improvement, Efficiency, Access, Treatment
3. Scottish Intercollegiate Guidelines Network (2006) Guideline 86: Management of patients with dementia
4. Alzheimer Scotland (2006) Good for you, good for you brain: the evidence on risk reduction and dementia
5. DE: The Dementia Epidemic: where Scotland is now and the challenge ahead (2007)
Man: Let's make dementia a priority: the dementia manifesto (2007)
TIMH: This is my home: quality of care for people with dementia living in care homes (2005)
SB: Short break services for people with dementia and their carers in Scotland (2004)
MJB: Making the journey brighter: early diagnosis and support services for people with dementia and their carers (2003)
STS: Signposts to support: understanding the special needs of carers of people with dementia (2003)
6. Audit Scotland (2008) A review of free personal and nursing care