The National Audit Office (NAO) examined health and social care services in England for people with dementia and their carers. It asked whether services were providing effective and good quality support for people with dementia and their carers, against a background of rising demand and an increasing incidence of the condition. While the primary focus was on services for older people, the NAO acknowledged that many services are relevant to the circumstances of the 12,000 or so younger people with dementia.
The NAO looked at several recent reports about care services for people with dementia, and also described current services.
These include community mental health teams (492 of them, half of which were integrated health and social services teams) and memory assessment services (131). It found that the differences between CMHTs in different areas could be profound.
CMHTs caseloads vary from 5 to 1,500 for people with dementia. About a quarter of CMHTs have no social workers (the Faculty of Old Age Psychiatry recommends one social worker per team) and about half do not make use of the single assessment practice to help co-ordinate health and social care provision.
Most teams lack formal outreach services for care homes, but they do have informal arrangements with them. Co-ordination with social services was reported as good by nearly 70% of CMHTs, and excellent by about 15% of CMHTs, comparing well with their links with other sectors.
CMHTs that responded to the NAO census reported significant variations in the availability of community services for people with dementia. They felt confident that meals on wheels would be available if needed (82%), that day care may be available (74%), that respite care could be provided (66%) and that specialist home care from a dedicated team working with people with dementia could be provided (44%).
But GPs were far less confident about services and many (41%) said there was no support group for carers in their area.
The NAO also conducted a census of CMHTs to establish if they felt well equipped to give advice and information on dementia. Many reported that they did not have policies on giving people with dementia advice and information, with more than half (56%) saying they always followed their policy on providing people with a contact for help, and almost half telling people how to get a review of their care package (45%).
But little over a third were able to say that staff followed policy on telling people about free NHS continuing care (37%). A third said they understood support networks and financial or benefits entitlements, and less than a third understood community care services (30%) and the likely progression of the disease (24%).
This may help to explain why people with dementia and their carers consulted by the NAO reported that they obtained information and support from the voluntary sector.
The NAO also found that stigma and lack of public awareness of dementia meant people delayed approaching their doctor and even then GPs sometimes failed to suspect dementia so that diagnosis was delayed. Even if a diagnosis was suggested, it might not have been communicated well enough and advice and information not offered. If people were unaware of services, they might have carried on until a crisis occurred. Lack of provision in areas such as short-break care may have meant that more restrictive options were the only ones available such as residential care. Lastly, if a hospital stay was warranted, even in this setting staff may not have been aware of dementia or known how to manage the symptoms. All these barriers hindered timely and suitable support.
A key part of the NAO research was to see if a whole system approach at local level could provide data that would help commissioning of health and social care services. It did this by conducting information in Lincolnshire. On the day of the survey, there were several alternatives to acute hospital for people with dementia that might have been more suitable, and saved money.
More than two-thirds of patients with dementia in acute hospitals were found to no longer need acute hospital care. Alternatives could be developed, not simply general social and primary health care services, important as they are, but specialist therapy beds, to help with rehabilitation so that a person with dementia might return home after a stay in hospital. These seemed to be lacking. Likewise, the NAO found few continuing care placements for people with dementia in care homes.
The NAO criticised the low number of care home beds that were registered as specialist dementia care beds. It said that this contributed to people with dementia going undiagnosed and that their condition had a low profile in residential care. In turn, this meant that other needs were obscured such as more dementia care training for care home staff.
One million people in the UK have dementia and there is a growth industry of guidelines. Guidance includes Everybody’s Business and the dementia guidelines issued by National Institute for Health and Clinical Excellence and the Social Care Institute for Excellence. All of these cite best practice or at least aspirations. But it is hard for practitioners to know what to encourage when commissioning at local level and commissioners are not always able to purchase specialist and high quality services. The NAO report will be a useful “handy” guide to NHS thinking and will confirm what is already known in social care, namely that the NHS is far from uniform or predictable.
The report is heavily weighted to health, exploring social services to a much smaller extent. For example, it notes that medical and nurse training includes little or nothing on dementia, but fails to comment on the social work curriculum.
The report could have spoken to social care practitioners, care managers, care home managers and staff about caseloads, services and links with primary care and older people’s mental health services. Home care workers would also have had something to say about working with people with dementia and how they manage to deliver practical and emotional support. This is not simply in relation to adult services in local councils it applies to wider social care services such as day care, equipment services and occupational therapists, and also housing, leisure and culture.
The NAO report comes at an important time for dementia services and of course at a time of change in adult services. It reveals the enormous variation in health services, such as CMHTs, and the NHS’s often limited knowledge of social care and the voluntary sector. The greater personalisation of care services may be appreciated by people with dementia and their carers, many of whom are already putting together tailor-made packages of support, especially given the lack of knowledge among professionals of what is available. One of the results of the earlier recognition of dementia is that people with dementia and their carers may take on more of their own care or case management.
There is much collusion around hiding dementia, especially in residential care. Greater numbers and increased costs when combined with early recognition may mean public expectations rise while social care services become more restricted.
Big benefits for people with dementia can flow from the type of work and knowledge that social workers possess, such as listening to people with dementia about their concerns, listening to carers and providing both with information, contacts and psychosocial support. Offers of support have a positive effect on carers’ mood and their quality of life, even if they are not taken up at the time or at all. The NAO report summarises information that could usefully be supplemented by parallel social care perspectives.
Jill Manthorpe is professor of social work and director of the social care workforce research unit at King’s College London
● Department of Health, Everybody’s Business, HMSO, London 2005
● NICE/SCIE Clinical Practice Guidelines no 42, Supporting People with Dementia and their Carers in Health and Social Care, NICE, London 2006
Response of services
Early diagnosis is likely to result in requests for early intervention. How will adult services respond? If the answer is that they will refer people to other organisations, what does this mean? If the answer is that they will offer psychosocial support then how does this fit with care management roles?
Education for people with dementia and for their families or supporters is likely to be offered by many sources. Out of all the information available, what is relevant at local level, to reflect the variations in resources and different providers of support?
Mapping existing services
Mapping the many elements of services for people with dementia and their carers in a locality will be one way of developing knowledge of what exists, patterns of use and possible under-provision. This knowledge needs to be pooled and its accuracy tested against the experiences of people with dementia and their carers. It should inform local area agreements.
Training and developing the workforce
Education for social workers about dementia and skills development may be assisted by documents such as the NAO report that summarise recent findings in the area. Time with front-line social care workers to discuss their implications might provide a valuable opportunity to think, assist in local problem-solving or bolster social care managers’ contributions to shared commissioning.
This article appeared in the 30 August issue under the headline “Poor care for people with dementia”