Dementia care has finally started to be taken more seriously in the UK.
Elderly Asian men play Jenga during their Dementia Awareness group meeting
We are in a new era where it is no longer acceptable to deny good basic care to people with dementia.
Some may be tired of hearing about it, but there are 700,000 people with dementia in the UK, a neurodegenerative disorder which has a devastating effect on families and costs the nation £17bn annually. This enormous cost is one of the reasons why, at long last, dementia is being taken more seriously.
The Department of Health’s 2009 National Dementia Strategy marked this change in pace. It did not say much that was new - the 17 objectives cover areas such as improving diagnosis, information provision, improved community support, and better care in residential homes. But it did send a message that higher standards are expected from services for people with dementia.
Dementia care requires a multi-agency approach from the independent sector, volunteers, primary care, the local authority and others. NHS Isle of Wight, which is on the road to foundation status, is working towards just such an approach through its specialist memory service.
Have a strategy
Start with one. The long list of actions in the National Dementia Strategy is daunting, so you need a plan to guide you.
The Isle of Wight Clinical Commissioning Group made dementia a priority in its commissioning strategy, and set up a dementia steering group with representation from charities, commissioning, provider and carers. This group works to an action plan to meet all the objectives of the strategy.
If work is split up between agencies involved in dementia care, and separate work groups are set up for specific projects, all providers can concentrate on their area of expertise.
For example, the local Alzheimer’s Society can lead on information provision and awareness raising, while specialist services can lead on memory assessment.
Make sure you pull activity together at steering group meetings. Check everyone is working together and that the different initiatives complement, but do not duplicate, each other.
Do not take on too much
It is good to have innovative ideas - specialist staff need freedom to pursue a few for their development and self-esteem - but be focused. Do not be flattered into offering training events to care homes, or teaching on induction days for foundation year doctors, unless you really have time to spare. These may be good things to do, but ask yourself if you are really commissioned to do them. In other words, who is paying you, and are you being distracted from your core business of providing specialist care for patients and carers?
Involve users and carers
For obvious reasons it can be complex involving people with severe dementia in developing services. But this should not put you off from having a coherent plan to obtain their views, and the views of their carers.
You can involve the third sector in canvassing patients and the public, or you can conduct satisfaction surveys yourself. It is important to ask people with cognitive impairment questions that are simple and free of jargon.
A group setting and facilitation are often helpful. You can hold group sessions to discuss patient and carer views after a session of cognitive stimulation therapy, for example.
It is also important these initiatives are reported formally to the steering group, and acted upon. There is nothing worse than asking people their opinions and then ignoring them. Once you have acted, let patients and carers know what you have done.
Also, it is crucial to define what you do and do not do. This helps commissioners understand the role of specialist services, and assists in the setting up of service level agreements and funding. Here, the move to clustering and payment by results can really help.
Define your interventions along the care pathway from first referral to end of life care as tightly as you can, using the National Dementia Strategy, and National Institute for Health and Clinical Excellence and Social Care Institute for Excellence guidance.
Decide which professional will deliver each intervention and how the outcome will be assessed.
For example, we have decided that for the initial assessment, a psychiatrist will see the patient and conduct a standardised assessment. This will be followed by post-diagnostic support and information sessions delivered in groups by a nurse and social worker.
Offer treatment, not support
Specialist services should concentrate on things they do well, and that others cannot do. The NHS is supposed to be about providing treatment so offer treatment, where possible based on evidence or national guidance.
For example, there is no point in offering social day care. Many other providers do it better and at lower cost. If you are going to run groups, run therapeutic groups that you can prove are effective. We changed our community day service to a cognitive stimulation therapy group, based on therapy proven to work in trials.
We are using the same measures as the trials did so we can benchmark our outcomes against centres of excellence. As for measuring what you do, this is all very well when there is an evidence base, but what if there is not? It might be argued that proving any treatment improves outcomes in a degenerative disorder is difficult.
But if our interventions make no difference to people’s lives then why are we bothering? The fact is we can show our interventions work for people, even if there is not a strong scientific evidence base for a specific intervention. We can do this by choosing an outcome measure tailored to the person.
Our service is introducing goal attainment scaling. This allows service user, carer and therapists to set specific and measurable goals, and measure progress against them. These could be for longer periods of sleep, fewer falls or reduced time calling out.
Use national benchmarking to measure how your service is doing
You may have taken all the steps outlined above. But do you know how your service compares with others? We registered with the Royal College of Psychiatrist Memory Services National Accreditation Programme, which sets standards closely linked to National Dementia Strategy objectives. This has sharpened our thinking about what our priorities are, and has made us audit aspects of our service as part of the accreditation process. Staff enjoy working together to achieve a tangible goal of accreditation.
External assessors are valuable because they see your service with fresh eyes, and can share best practice they have seen in other services.
Dr Daniel Harwood is a consultant psychiatrist and clinical director in the community health directorate at NHS Isle of Wight.