Dementia: new guidelines from NICE and SCIE. By Jill Manthorpe and Steve Iliffe

The article identifies reasons why social workers working with older people and their carers should be aware of new guidelines on dementia. These joint Nice/Scie guidelines are an invaluable source of evidence and advice, but will also be used by inspectors, service auditors, stakeholders, voluntary groups and individuals to assess the quality of care given by social workers.

New guidelines on dementia combine the best insights of health and social care for front-line social workers, say Jill Manthorpe and Steve Iliffe

The publication of the joint National Institute for Health and Clinical Excellence (Nice) and Social Care Institute for Excellence (Scie) guidelines(1) on dementia in November 2006 may seem puzzling to front line social workers in adult services.

Scie does not generally produce guidelines, and the clinical aspects of dementia care are outside the remit of social care. “Guidance” has a particular meaning in social care, often seen as authoritative, detailed expectations with the force of regulations and policy documents. “Guidelines”, like those produced by Nice, are much more ambiguous, containing elements that are obligatory (for example, eligibility criteria for medication) and others that are aspirations, like “person-centredness” in dementia services.

However, these new guidelines are an important publication for social workers in England, partly because support of people with dementia is central to adult services, and partly because they are a genuine attempt to combine health and social care provision.

What works with dementia
The salience of dementia for social care is not just a “size matters” issue, even though the numbers of people with dementia are growing, but also a matter of what works. The limited ability of social work to reduce the distress of dementia and to improve quality of life for all concerned remains a challenge. Putting into practice value statements about person-centred or relationship-centred care has been difficult, with growing gaps in many areas between the type of support we want to provide and the resources that are available.

The Nice/Scie dementia guidelines do not solve this resource problem but they do go some way to promote better use of existing skills and services. This is because they are the product of joined-up thinking, between Nice and Scie, and between social work, healthcare professionals, and people with dementia and carers.

It is rare, in our experience, for debates about responsibilities and roles, resources and evidence to be examined from each perspective and then resolved, but this occurred in the guideline development process.

Those on the guidelines development group with experience of social care learned much, and medical, nursing and psychology members also derived insights into the pressures on social care. It was noticeable, for example, that many outside social care (apart from the “lay” members) seemed unaware of the very high eligibility criteria for social care services.

Body of knowledge
The Nice/Scie dementia guidelines distil the body of knowledge into practical proposals to inform services and practitioners. They are comprehensive but succinct, and will be seen as authoritative because of their scope, their relevance to systems of care and treatment, and their capacity to provide benchmarks for auditors and inspectors.

This was relatively easy where there was a large body of knowledge, but where it was ambiguous or contradictory there was much debate, and where there was very little evidence, this was noted. Evidence about social care generally fell into the latter category.

There are three main recommendations directly relevant to social work. First applies to the recommendation that all staff (in social care, health and voluntary sectors) have access to dementia care training. Educational programmes should of course be tailored to each professional group, but could include “clinical” knowledge about the early signs and symptoms, and the evolution of the disease process, as well as its impact on the person with dementia and their social networks.

There is much to learn about communication skills needed when talking with people whose abilities to think and respond are changing. Behaviour that challenges is core to demands for social care, and training to anticipate such behaviour is urged by the guidelines.

Similarly, issues about engaging with wider systems of support, from housing departments through adult protection to palliative care services, need discussion. The guidelines recommend that care managers and care co-ordinators should ensure that reviews of care plans take place regularly. Both the rationale for this and the goals of the review process need to be understood. Training, or rather skill development – with time for supervision and reflection – is central to acquiring this understanding.

Second, the guidelines’ exhortations to integrate working between health and social care are not new. Better knowledge and deeper appreciation of the work of different professions, disciplines, sectors and specialisms will be required to achieve and sustain such collaboration, and this is best done through joint working. The limited opportunities in social work training to develop skills in dementia care may need to be challenged. Specialist social work practitioners in dementia care do exist but lack the critical mass to alter training and practice. Changing practice will be a matter of agreeing policies and procedures in localities, but also producing agreed care plans at the individual service user level.

Early diagnosis
Finally there is the guidelines’ emphasis on early diagnosis of dementia. This may have consequences for social care, since early diagnosis can give rise to expectations of psychosocial and practical support, and social care may be expected to supply this.

Local agreements will be needed about the role of adult services in relation to earlier diagnosis and the likely expansion of memory clinics. The issues are important, because some people with dementia may find it very difficult to adjust to their diagnosis, and become withdrawn, depressed or avoid help.

Family relationships can be strained by this transition in the life of a partner, parent or grandparent, and anticipate having to deal with huge burdens on their own.

Public perceptions of dementia can be biased towards the image of the last stages of the disease process, in which people have lost the ability to communicate and care for themselves, but this is in part an incomplete picture which does not fit the actual experience of the illness.

These are important and difficult issues for social work, not made any easier by resource constraints in both social and health care, and there is much to learn and do. Any significant change recommended by the guidelines will require extra resources, and there are few if any opportunities to save money by better management of services and systems.

Social workers should not be naive about the ambiguous status of these guidelines, and should not be taken by surprise when inspectors, service users and carers use them as a measure of social work performance.

Jill Manthorpe is professor of social work at the Social Care Workforce Research Unit, King’s College London. She has written extensively on the needs of older people, and has a research interest in dementia care.

Steve Iliffe is reader in general practice at University College London and a practising general practitioner in inner London. He is associate director of the national Dementia and Neurodegenerative Diseases research network (DeNDRoN), and has a research interest in mental health in later life.

Both authors were members of the Nice/Scie dementia guidelines development group 2004-6, but are writing in their personal capacities.

Training and learning
The author has provided questions about this article to guide discussion in teams. These can be viewed at and individuals’ learning from the discussion can be registered on a free, password-protected training log held on the site. This is a service from Community Care for all GSCC-registered professionals.

1) Nice/Scie, Dementia: Supporting People with Dementia and their Carers in Health and Social Care, 2006

This article appeared in the 25 January issue, under the headline “Two Bodies, One Voice”

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