Not Forgotten

Report by Multi-Professional Group for Better Services for People with Dementia

This document has been compiled by a multi-professional group led by the Association of Directors of Social Services, with the Royal College of Psychiatry, the Royal College of Nursing and from the National Network of Dementia Services. It has been shared and discussed with the Alzheimer’s Society and the Audit Commission.

The purpose of this document is to take forward a national position on the care of people with dementia that was triggered off by the Audit Commission’s study "Forget Me Not". It is the intention of the document to promote further discussions on how services for people with dementia can be improved and developed over the next five years. The focus of this work is people with dementia and not old people with mental health problems .It is considered that people with dementia and their carers experience particular vulnerabilities not necessarily similar to that of other conditions. The document reflects and comments upon policy positions seen in the Audit Commission’s study, in the NHS Plan and the National Older People’s Programme.

1.	Introduction
1.1	The Association of Directors of Social Services Older People’s Committee commissioned work to look at the development of services for people with dementia in the light of concerns about the specific vulnerability of this group of older people and their carers. In undertaking this work a multi-professional group was called together as it was realised that there were common concerns and interests across the professions. This group had several meetings with the Audit Commission to clarify the issues emerging from its work. The paper addresses issues regarding the needs of people suffering from dementia. Whilst it is recognised that the majority of these are elderly, the paper includes the needs of people with dementia under 65 years and people with more than one diagnosis. The members of group were:
	Glenys Jones	Chairperson, ADSS Older People and Corporate Director of Social Services Middlesbrough
	Roderick Knight	ADSS Older Person’s Committee and Assistant Director Dorset Social Services
	Christobel Shawcross	ADSS Older Peoples’ Committee and Head of Community Care, Social Services Barnet
	Claudette Webster	ADSS Older Peoples’ Committee and Principal Manager, Community Care, Social Services, Manchester
	Jan Dewing	Royal College of Nursing
	Andrew Fairburn	Royal College of Psychiatry, Newcastle University
	Kevin Millar	Director of Social Services Wirral
	Professor Jane Gilliard	Director Dementia Voice, Chair of the National Network of Dementia Services Development Centres, University of Bristol
	Advisors:
	Jane Bell	Deputy Chief Executive Alzheimer‘s Society
	David Browning	Audit Commission
	Peter Scurfield
2.	Commonalties Agreed across the Professionals The professions working across the Health and Social Services have agreed that there are common values, principles and approaches that they hold, and that these influence joint positions highlighted in this document. These include the following.
2(i)	Agreed Core Principles People with dementia should not be subject to discrimination. People with dementia should not experience ageism. People with dementia should have equality of access to all services. People with dementia are entitled to all Human Rights.
2(ii)	Agreed Philosophical Approach We support a person centred approach in our work with people with dementia. We believe it is important to listen and respond to the needs of users and carers. We support a care pathways approach where they are age and condition sensitive in responding to needs. We agree that a whole system approach is essential in planning to meet the needs of people with dementia. We recognise the importance of providing flexible local community based services.
2(iii)	Agreed Organisational Approach We are committed to the value of partnership working across our organisations. We are committed to expanding joint working. We value multi-skilled working. We are committed to people with dementia having access to qualified and registered professional care for assessment, care giving and evaluation. We believe in the importance of a shared information base across dementia care services.
2(iv)	Agreed Commissioning Issues Joint commissioning can help address the needs of users and their services when it works alongside joint working of professionals throughout the system. Joint Commissioning plans should identify the number of people who require services and a joint investment plan. Commissioning proposals must address the differing needs of various groups of people who have dementia and should demonstrate how the needs of marginalised groups with dementia will be met. Specific proposals should be developed for younger people with dementia, ethnic minority groups and people with a dual diagnosis particularly people with learning disabilities. Plans must cover the whole span of dementia from screening to end of life care.
2(v)	Agreed Quality Issues We consider that the skill base for staff providing dementia care is too low across both the public and independent care sectors. We consider that a national framework for elder care training should be established across health and social care. We need to ensure a joint training agenda is developed. We consider further work is needed to clarify common skills that cross over the professions and enhance the specialist skills required in working with people with dementia. We agree further work is required to consider how training is integrated into practice and how the organisational culture is changed.
2(vi)	Agreed Research Focus We consider there needs to be greater dialogue between practice and research. We agree there is a need for early indicator research to give speedy feedback on critical areas of dementia services, such as, the impact of drugs, the impact of technology, therapeutic interventions and comparisons of different living options. We believe it is important to recognise and promote good quality practice demonstration sites, such as teaching nursing homes, and supported housing options. Health and Social Care research should be jointly commissioned to provide a stronger evidence base for dementia work. Innovative service designs should be evaluated to create a stronger evidence base
3.	Responses to National Policy Positions The joint group has considered the following policy documents and what follows are observations and some areas in which we would wish further clarification in respect to services for people with dementia.
3.1	Audit Commission - "Forget Me Not" We wish to ask the Department of Health how it is intended that the recommendations arising from the Audit Commission study are intended to be developed and promoted. Introduction We welcome and support this study and recognise the importance of the three key areas of work identified in the report namely: Tier One - the role of Primary Care Tier Two - the role of Specialist Services Tier Three - the role of Commissioning We further consider that dementia services are best built on a framework of good quality services for older people. These should be demonstrated in Community Care Plans and Health Improvement Plans and incorporate prevention plans, carer’s plans, and housing plans. We have considered the 17 key recommendations from "Forget Me Not" and considered policy practice issues arising.
KEY RECOMMENDATIONS To improve the help given to Older People with Mental Health Problems. TIER ONE - Primary Care and its role in assessing Older People and the early recognition of Dementia
1.	General Practitioners and other primary care staff should provide information, support and competent advice. Comment: Group agreement with this. Evidence shows that early recognition is important for support to carers and preparation for coping with the condition. Evidence shows that General Practitioners with social care support felt more confident in early assessment. The challenge is to develop a variety of acceptable models of support to General Practitioners.
2.	Information about the services available locally, presented in a way that can be understood easily by local people, should be distributed to General Practitioners surgeries and other public places. Comment: The group is in full agreement. A multi-agency information strategy and funding for information needs to be a critical element of a joint commissioning plan and joint investment plan. The role of Health Direct and Care Direct are important contributors in sign-posting access to services.
3.	Local mental health professionals should provide training and support for General Practitioners and primary care teams, making particular efforts to contact those who refer few people. Comment: In agreement with this whilst recognising this needs to be a rolling programme. Good practice towards the health care of older people and vulnerable groups should be the baseline which highlights the particular needs of people with dementia.
TIER 2 - The role and contribution of the specialist Health and Social Services
4.	Assessment by members of a community mental health team (CMHT), where possible, at home on at least one occasion. Comment: In agreement with this. However we recognise that there is no clear policy guidance on the creation of health and social care CMHT and a wide variety of national practices. In some areas there may be joint community psychiatric nurses and social work mental health teams, in others joint CPN/SW teams for the Elderly Mentally Infirm, in others no joint teams but different models of attachment to general practices, in others just a service that responds to a referral. Greater clarity is required to ensure a more consistent approach to focus upon the needs of people with dementia.
5.	Provision that is balanced in favour of home based services. Comment: In full agreement with this. We recognise that this requires access to local 24 hour health and social care provision. This is rarely available and should be developed as part of joint planning and joint investment with a focus on people with dementia with continuing health and social care needs.
6.	There should be a range of specialist community based staff ideally with specialist home care workers. Service Managers should consider training home care staff who express an interest in developing skills in this area. Comment: We have concerns about the low level of training and skill base of staff working with elderly people and much of this care is provided in the private sector. This low baseline causes real concern about the capacity to ensure specialist skills for staff working with people with dementia. It is suggested that this whole area of staff training and development requires a new joint training initiative as a matter of priority.
7.	Day provision for time limited assessment and treatment (day hospitals) as well as long term care (day centres), with an appropriate mix of staff to meet needs, and planned jointly by health and social care agencies. Comment: Day care services are vital for many and these should be planned jointly. There are many examples of excellent partnerships with the voluntary sector in providing day care. A skill mix of reablement therapy, nursing and social therapy and care is important in day settings. There is rarely an adequate skill mix and there has been an under-investment in training for staff in these settings. Access to Intermediate Care for people with dementia is unclear from the guidance.
8.	Respite care in a range of settings, including at home, with some places reserved for emergency situations. Comment: This is essential to sustain carers, it should be core to carers care plans and available as a right. The current funding and charging rules surrounding respite care are not helpful to carers providing extensive intensive care.
9.	Hospital admissions for people with psychiatric and behavioural problems that cannot be managed in any other setting, with close links to physical health care services with admissions limited by effective community services. Comment: It is acknowledged that people with dementia need access to good quality physical and mental health assessment services and have continuing health care needs. The provision of 24 hour care with medical supervision is limited for a person being cared for at home and may best be provided in residential settings.
10.	Residential and nursing homes, supported by mental health specialists, to enable them to care for highly dependent individuals, and with a strong emphasis on quality. Comment: This is a critical area. The capacity of local provision to provide quality residential care for people with dementia requires review. The distinction between residential and nursing care is not helpful for people with dementia who may be moved from one setting to another as their dementia increases. Mental health specialists in the community are scarce and consequently there is insufficient support to care homes.
11.	NHS funded continuing care for those in greatest needs, as determined jointly by health and social services agencies. Comment: We have concerns that the threshold for accessing continuing health care funding may be set in such a way to exclude the majority of people with dementia. Consequently they may be allocated social care provision and be subject to inappropriate charging regimes. It is therefore critical that the assessment process identifies the continuing health care plan for people with dementia as well as the social care plan. All people with dementia should have access to a key health worker as well as a social care manager. There should be flexibility around the boundaries between social care and health care provision for people with dementia. This should be built into registration expectations and funding formula.
12.	Good co-ordination between health and social care, with integrated teams of professionals who have ready access to a range of flexible services. Comment: In agreement with this but recognition that this will need an integrated national steer.
13.	Effective care planning for individuals, through the Care Programme Approach or a similar method. Comment: This is an area in which the Care Programme Approach and care management should be combined with health and social care management available to all people with dementia.
14.	Effective information sharing between practitioners, preferably with shared files. Comment: It is increasingly important that this occurs to support joint working. A national steer that could underpin joint care management and integrated working would be helpful.
TIER 3 - Commissioning and Planning Dementia Care
15.	Clear goals, including the intended balance between home based, day, outpatient and hospital services. Comment: It is important that local goals and targets are established and that these include the capacity in the private market and the voluntary sector. The results of the national beds inquiry should be specifically applied to services for people with dementia to ensure the balance between the community based services, hospital services and continuing health and social care services is appropriate.
16.	Good quality information to inform planning, including monitoring of service quality. Comment: Information on unmet need is limited. Consideration could be given to ensure that mental health and dementia checks were provided in the routine medical assessment provided in primary care. Information from frontline health and social care services is essential to inform planning. Integrated care management should include monitoring targets.
17.	An approach that promotes innovation and works towards jointly commissioned services by health and local authorities, as emphasised by national policy. Comment: This approach is essential and should be demonstrated in local action plans and joint investment plans for continuing health and social care.
4.	NHS Plan and Dementia Care Following an early discussion on the NHS Plan, the following key issues emerged and it was considered that these required further exploration with the Department of Health.
4.1	Intermediate Care The concept of intermediate care as developed in the plan and seen as a response to the National Bed Enquiry was felt to be an area of concern. This is because the concept, which is excellent for many conditions afflicting people in old age, is not best suited to people with degenerative conditions, including dementia. A focus on rehabilitation and recuperation is helpful, particularly to those suffering from CHD conditions. However for people with dementia a focus on reablement and skills maintenance for as long as possible is of a different order of care. Given the NHS Plan investment in intermediate care there are concerns that this could be at the cost of developing reablement skills and ensuring the provision of good quality long term care.
4.2	Primary Care Teams The role of the Primary Care Team needs clarifying in respect to dementia. The Primary Care Team is ideally placed to make early identification and offer preventative support. It is also the site, which could have a particular link with the specialist clinical team. However the role and contribution of the General Practitioner and the team needs national clarification.
4.3	Health Leadership The lead on dementia services needs to be clarified across the Health Trusts. This is particularly important with the development of Mental Health Trusts, the new Care Trusts and Primary care Trusts.
4.4	Training Deficit. There needs to be renewed thinking concerning the training requirements of the range of staff working with old people and particularly with people with dementia. The particular areas of concern lie in the need to strengthen core training for people working with old people in respect to the common understanding of gerontology and the ageing process .The second area of concern lies in the need for enhanced training on dual diagnosis. For health and social care staff training in both these areas is essential. In addition enhanced training is required in treatment and therapy for staff working in a variety of settings with people with dementia. We consider that a joint national training programme should be developed and a review of the existing skill base.
4.5	Health and Social Care Boundary The boundary between nursing and social care in respect to working with people with dementia remains problematic and a cause for concern. It is recognised that the skills required to provide personal care are critical to the mental health maintenance of the person with dementia. There are concerns that if the boundary of what constitutes nursing care is drawn too narrowly then the care of the person with dementia will be relegated to social and personal care tasks and consequently subject to charging. Clear guidance on this boundary which will be determined after assessment is essential and should be subject to a joint agreement.
5.	The Modernisation Programme (i) Key Themes of the Older People’s Programme Assure and improve standards of care Extend access to services Promote independence Improve fairness in funding long term care Help older people stay healthy Achieve closer integration of health and social services The group welcomes these themes which support better services for older people and have a particular resonance in supporting people with dementia. (ii) Main Projects of the Older People’s Programme National Service Framework (NSF) for older people Intermediate care Long term care funding Care Direct Helping older people stay healthy Care Trusts It is recognised that the main projects in the programme will have different impacts on the care and support for people with dementia. We would wish that the comments made earlier in this paper are considered as these projects are developed. (iii) Supporting Projects of the Older People’s Programme Modernising community equipment services Carers strategy Prevention strategy The supporting projects are particularly important for people with dementia. We are aware that both community equipment and housing adaptations with focused design and use of new technologies can create `smart houses’ to assist people with dementia remain at home. The interface with equipment, new technological developments and housing requires further consideration. The impact of existing research in this interface area requires speedy evaluation with the development of a housing-with-care planning and investment programme.   Emphasis should be given to ensuring an explicit strategy for the carers of people with dementia. This should clearly identify a helpline, information, support and respite availability in each locality. However, we recognise that many old people do not have close carers and people with dementia at home or in long term care settings may be particularly vulnerable. We would wish that consideration be given to promoting advocacy and appropriate and trained befriending services to ensure isolated people with dementia had access to a "concerned other". Consideration should be given to identifying a prevention programme for people with dementia. (iv) Underpinning Work for the Older People’s Programme Communications Planning and performance Information strategy for older people (Mike Yates Advisory Group with Social Services links) Workforce planning Research and development Analysis and modelling (v) National Service Framework Promoting health and well-being Preserving dignity Respecting independence and autonomy Recognising the role of carers Developing a co-ordinated approach to service delivery Ensuring fair access to services, based solely on need Ensuring staff have the right skills These are essential building blocks to care and these principles underpin our approach to developing better services for people with dementia.
6.	The Next Steps? We ask the Department of Health to give the lead in ensuring there is a national policy that results in a focus on the particular needs of people with dementia. As a target group their needs are unique, and this renders them vulnerable and at risk without the clarity of supporting policies and the investment in good practice. We are united across our professions in our wish to see better services for people with dementia. We wish to see a proactive approach to the provision of safe, sound and supportive services led by the Department of Health, and for a concordat for improvement in service and care to be developed in partnership with the professional interest groups and the voluntary and private sectors.