Alistair Burns, NHS England’s National Clinical Director for Dementia, explains the importance of support for people once they have been diagnosed:
The need to support people with dementia, their families and carers is the next step following a diagnosis.
The aim of high quality support is to ensure that people can live well with dementia and the importance of high quality support is recognised in the National Dementia Strategy (NDS) and the Prime Minister’s Dementia Challenge.
The NHS England ambition is that two thirds of the estimated number of people with dementia should have a diagnosis and post diagnostic support.
There are a variety of models which exist for that support which should be high quality, responsive and person centred. As a result of the NDS, the Department of Health funded 40 demonstrator sites to assess the effectiveness of Dementia Advisers and Peer Support Networks in providing good quality post-diagnostic care, the (narrative) evaluation of which has just been published.
The evaluation provides positive evidence on the value of these services. It shows that dementia advisers and peer support networks have benefits to the wellbeing and quality of life of people with dementia and their carers.
Commentaries were both very positive about the benefits of having a Dementia Advisor to provide them with guidance, and of peer support networks in linking them to people sharing the same experience.
Both the dementia advisors and peer support had resource saving implications for the local health and social care economy. In addition, they played a key role in raising awareness of dementia and tackling stigma. There are a number of models of dementia advisor – attached to primary care, memory clinics or the local Alzheimer’s Society.
There are other sources of advice and post diagnostic support such as the Admiral nurses who have been shown to be valued by local services.
Information about dementia and local services is so important and the ways of assessing this can be a challenge. The Dementia Action Alliance and the Guideposts Trust are producing an Information Prescription which will be available to everyone and are exploring the opportunities for further support. The Alzheimer’s Society and the NHS have produced a dementia guide to be given (a bit like a Bounty Pack) to every person following their diagnosis and there are many examples of local information packs that are available such as the Sheffield Information Pack.
In terms of what works for carers, a recent meta-analysis of the literature found that six or more sessions of bespoke behavioural management therapy concentrating on the person with dementia’s behaviour was very effective in reducing psychological symptoms in the carer, an effect which lasted up to nearly three years.
Advice on coping strategies worked also, individually or (less effectively) in a group, again the effect lasting for several months. General education about dementia by itself, group behavioural therapy and generic supportive therapy were not effective.
One example of a successful UK-based research project in this field is the START study (STrAtegies for RelaTives), an National Institute of Health Research, Health Technology Assessment funded clinical and cost effectiveness randomised controlled trial of a manual based coping strategy programme for anxiety and depressive symptoms in family carers of people with dementia.
Uniquely, this was delivered by graduate psychologists supervised by a clinical psychologist. The study, led by Professor Gill Livingstone from UCL, adapted “Coping with Caregiving” a manualised 13 session group therapy to become START, an eight session manual for individuals.
It was devised based on the group’s previous research, and the results of three systematic reviews, which found that family carers style of coping with caring difficulties, affected whether they became depressed or anxious. About 40% of family carers of people with dementia have clinically significant depression or anxiety. Therapies for family carers and found that not all treatments were equal. Overall, therapies of at least six sessions individualised to the carer with active carer participation were effective for depression. There was no firm evidence for anxiety but preliminary indications that relaxation may be useful.
Not all strategies were effective, so for example, education about dementia by itself, group behavioural therapy and supportive therapy were not effective. A later study found that a befriending programme delivered by ex-carers did not reduce family carers’ anxiety or depression.
In terms of assessing the impact of post diagnostic support, this is more of a challenge than the diagnostic rates as measuring the success of post diagnostic support a mixture of some process measures (such as the numbers of carers given information as part of the National Dementia CQUIN and the National Dementia Audit) and direct surveys of patient and carer experience, perhaps like the Family and Friends Test. NHS England are working with Public Health England to develop these assessments further.
NHS England is committed to raising the numbers of people with a formal diagnosis of dementia and to encourage commissioners and others to make sure that there is an appropriate level of high quality post diagnostic support available.