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Age UK report reveals gaps in dementia care

With the number of people living with dementia estimated to hit one million by 2020, (and exceed two million by 2051), Age UK is warning of an urgent and growing need to provide much better support for those who have been told they have the condition.


Despite the fact that regularly reviewed care plans should be available for everyone living with dementia, new analysis from Age UK shows that over one in three people with dementia don't have one. The plans are important because they are the gateway to follow up support from the NHS, and they should also help ensure that other support a person may be receiving, such as social care, is properly joined up with NHS help for their dementia.


Age UK analysed data from 7,185 GP practices in England and found that, in total, 458,461 people had a recorded diagnosis of dementia in November 2017, but only 282,573 had a new care plan or at least one care plan review on record in the last year.


Yet NHS England's Guidance says: "there is an urgent need to ensure every person who has dementia has an individual care plan" and goes on to specify that these reviews should take place once every 12 months at the minimum. The plans are supposed to set out the tailored support someone should receive, and are meant to be reviewed regularly with a health professional as a person's condition progresses and changes. Care plans are equally important for family members who are often providing significant amounts of care for their loved-one.


The charity also found that a quarter (24.7%) of practices have 50% or fewer people with a dementia diagnosis having received or having had a review of a care plan in the last 12 months.


Age UK has launched a new report - 'Promising Approaches to Dementia' which identifies a number of interventions that are evidenced, cost effective and scalable, and which could be replicated by NHS Trusts, care providers and primary care services.


The services highlighted in the report include projects which provide counselling for the newly diagnosed; encourage people to get involved in arts and crafts activities; and help people to reminisce through dance. These diverse projects include: counselling and support services; programmes to improve quality of life; volunteer visits to engage the sufferer in conversation, encourage reminiscing or engaging in hobbies; dance and acrobat displays to nurture non-verbal expression; and the Butterfly Scheme, which has already been adpoted by more than 150 hospitals across the UK and Ireland.


The Butterfly Scheme supports hospitals to make adaptations to improve the way that people with dementia and their carers are treated during their time in hospital. The most obvious of these is the use of a simple butterfly logo, which can be placed on the bed of a person with dementia to allow easy and non-stigmatising identification of people who might be in need of additional support. 


Calderdale and Huddersfield NHS Foundation Trust was an early adopter of the scheme, which it has been using since 2011. As well as the Butterfly symbol, the Trust liked the scheme's approach to ensuring that people with dementia and their carers are fully identified and understood through the completion of a 'See Who I Am' form.


A simple example of the way the scheme has helped to change practice at the Trust is that when a person who has been identified as having cognitive impairment by use of the butterfly symbol uses the call bell, instead of asking what the patient wants staff are trained to recognise that the individual may have forgotten why they called. Staff will then act as 'detectives' to work out what might have been the reason for the call, looking for verbal and non-verbal signs and using the information on the See Who I Am form.


Caroline Abrahams, Age UK's Charity Director, says: "Our analysis suggests that many people with dementia are losing out on the NHS follow-up support they need and are supposed always to be offered, once they have received their diagnosis. As a result they and their loved ones are missing precious opportunities to get help with living as well as possibly with the disease. The absence of a care plan also means that people with dementia are not being signposted to services that really could improve their physical and mental health, and sense of wellbeing. There aren't enough good local support services for people of dementia yet but some great initiatives do exist, as we show in our report, so it's a terrible shame if people aren't being helped to access them.


"Looking ahead, it's clear that we have to do a lot more to enable the growing numbers of people with dementia to live well among us, as fellow citizens in our society, but the starting point must be to ensure that the NHS's existing guidance on supporting people with the disease is actually put into practice. If the resources are not there to enable this to happen then the government should make sure they are, especially given the existence of the Prime Minister's challenge on dementia 2020, which includes a commitment to improving the 'quality of post - diagnosis treatment and support for people with dementia and their carers." 


Kate Joplin, Policy and Strategy Consultant and author of the report, adds: "We built this guide on the back of what people with dementia and their carers told us a ‘good life’ meant to them, and what they felt helped them to live well. And then we went out and found examples of organisations trying to support people in those aspects of life. What we’ve produced is a practical resource for individuals, organisations and communities who want a better deal for people with dementia – it sets out what people with dementia want, what’s been tried elsewhere, what evidence there is that it works."


The report recommends service providers should build on the insights it provides to start a discussion with the people with dementia they serve about the key areas of life that matter most to people, and to consider how they can help people to live well. They should also play their part in building the evidence around what works in promoting quality of life among people with dementia by collecting robust data on the impact of their services.



The stats in this report are all derived from this release of the NHS Digital Recorded Dementia Diagnoses monthly publication: Recorded dementia diagnoses, November 2017 Publication date: 09:30 December 15, 2017



To see the full list of projects download the full report here.