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Residents of care homes are among the most vulnerable in our society.
Yet they often have poor access to health care and have a high mortality – the life expectancy of a person with dementia in a care home is similar to that of metastatic breast cancer.
We know that around 70% of people in care homes have dementia and the secular increase in illness and dependency is well recognised. We have written previously about the benefits of a diagnosis of dementia for the residents in care home and the key role of GPs (Don’t let care home residents slip through the dementia net and GPs have a vital care home dementia role) in facilitating that diagnosis as a vehicle to deliver high quality post diagnostic support.
The NHS Vanguard projects include six in care homes and they have a number of aspirations and drives to innovation in practice to improve the care of people with dementia, but not exclusively so.
They are each trialling different models of care; they are all implementing innovative initiatives in dementia care. For example, Nottingham City CCG have commissioned an Dementia Outreach Team to use personalised skilled training from a specialist dementia team, alongside family history and input, to change and personalise the care approach to a resident with dementia. Sutton CCG is implementing DeAR-GP in their care homes, and the Alzheimer’s Society has endorsed the tool. DeAR-GP was developed by the Health Innovation Network in south London.
Care home dementia provision has been highlighted by a recent report from the Alzheimer’s Society – as part of their “Fix Dementia” campaign – showing that some people may be being charged inappropriately for care, that there are examples of long waiting times and lack of local services for people with dementia.
Recommendations from the Report include an end to charging for a standard primary care service, ensuring that people with dementia living in care homes have equal access to secondary and mental health services and improved healthcare support for care homes.
There is good evidence from abroad to suggest that many of the health needs of care home residents can be managed in their own environment without resort to hospital admission, with no adverse effect upon mortality and with greater satisfaction for both patients and carers.
Old age psychiatrists will be familiar with the experience of people with dementia admitted to an unwittingly hostile clinical environment in their dying hours and days. Well-intentioned but often futile intervention is common and profoundly distressing for residents, their families and carers, who rarely have the benefit of previous discussion about health, prognosis and treatment preferences.
One example which Gill Garden has lead, was funded by a grant from the Bromhead Medical Charity to set up a service for people with dementia living in care homes in Boston, Lincolnshire. The service comprised of two registered general nurses, experienced in the care of older people, supported by a consultant psychiatrist.
The cornerstones of the service were the training of care home staff in the recognition and management of the prevention of delirium – a frequent cause of admission – together with assessment of residents with reference to the Gold Standards Framework prognostic indicator guidance, and advanced care planning either with the resident, or, if they lack capacity, on a best interests basis with their family.
The service was evaluated using admission data from the preceding 12 months and collected monthly after commencement of the service. Carer satisfaction was measured using an anonymous questionnaire and staff confidence and knowledge assessed before and after training sessions. Additional training was developed on end of life care issues associated with dementia looking particularly at eating and drinking and dysphagia, all too common reasons for admission to hospital.
Admissions to the acute hospital fell by 37% in the first year of service and by 55% in the second and third years. Staff confidence in recognition management and prevention of delirium and end of life issues increased significantly together with more modest improvements in knowledge.
Most importantly, all but one of the residents with a care plan died in their preferred place of care and carers expressed great satisfaction with the service. The service cost £100, 000 per annum, but the net reduction in admission costs over a two year period were calculated to be between £240,000 and £470,000.
While the fall in admissions may have reflected a number of factors of which the service was one, the results lead to the local Clinical Commissioning Group funding the service recurrently, which has expanded the number of care homes it serves and has broadened its remit to cover people with frailty too. A report on this service has been published recently.
There is no doubt the care of people with dementia in care homes can be improved, and advanced care conversations are an essential part of improving care. Increasing the diagnosis rate has been achieved nationally and although there maybe clinical issues about making a diagnosis of dementia towards the end of life, respecting an advanced care plan is a key component of person centred care.
There are many examples of innovative work with care homes and the one described here is but one of them. Recognition of the importance of innovative services and their wider implementation will be an important opportunity for success in the future.
- Alistair Burns is NHS England’s National Clinical Director for Dementia and Gill Garden is the Consultant for Older People’s Services at United Lincolnshire Hospitals Trust.