New analysis reveals that 1 in 3 people living with dementia don't get the NHS support they are supposed to

With the number of people living with dementia estimated to hit 1 million by 2020, 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 1 in 3 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.

In light of these figures Age UK has today launched its 'Promising Approaches to Dementia' report 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. Some of the projects included are listed below:

• Counselling for people with dementia run by Age UK Camden: The service offers support both to people who are experiencing memory issues and may be feeling anxious about seeking a diagnosis, and those who have been diagnosed with dementia. Following an initial assessment, individuals are offered a course of between six and 20 weekly, 50-minute counselling sessions.
• Cogs clubs run by local Age UKs: The clubs offer people with mild to moderate dementia a five-hour weekly session of fun and stimulation – to ‘oil the cogs’ of their brain and body.
• Living Together with Dementia run by Tavistock Relationships: The programme aims to improve the quality of life and mental health of couples living with dementia through couple-focused psychosocial interventions. Initial results have shown that the intervention supports the stability of the couple relationship with positive trends towards a reduction in perceived burden in the carer role.
• Circles of Support pilot programmes run in the South of England: These programmes aim to help the person with dementia to think through how they want their life to be, and to plan for life now and in the future using person-centred approaches. They are ideally made up of family, friends and professionals who are in the life of the individual being supported. Facilitators can be professionals who are involved with the person such as memory advisors, or support workers, volunteers or family members. 
• BUDS run by Better Understanding for Dementia in Sandwell: The befriending service offers people with dementia living in the Sandwell area the opportunity to receive a weekly visit from a volunteer for a couple of hours. BUDS volunteers flex activities around the interests of the person, and include having a chat, talking over concerns, reminiscing, engaging in hobbies, watching TV or reading a book.
• Shake Your Tail Feather: Shake Your Tail Feather events involve a team of five specialist dancers and acrobats going into care homes and supporting an entirely person-led event using very little language, and with a rich musical score. The aim of the programme is to nurture non-verbal expression, especially for people with later stage dementia, for whom words are often tricky.

Other groups include Sporting Memories; Dance Well, Dementia Adventure; the Secret Garden & the Butterfly Scheme.

Caroline Abrahams, Age UK's Charity Director, said:

'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 possible with the disease. The absence of a care plan also means that people with dementia are not being sign-posted 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, said:

'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.'

Notes to editors:

Age UK is a national charity that works with a network of partners, including Age Scotland, Age Cymru, Age NI and local Age UKs across England, to help everyone make the most of later life, whatever their circumstances.

In the UK, the Charity helps more than seven million older people each year by providing advice and support.  It also researches and campaigns on the issues that matter most to older people. Its work focuses on ensuring that older people: have enough money; enjoy life and feel well; receive high quality health and care; are comfortable, safe and secure at home; and feel valued and able to participate.

Age UK’s subsidiary charity, Age International, supports older people globally in over 30 developing countries by funding programmes such as vital emergency relief and healthcare and campaigning to raise awareness and change policies.

Age UK is a charitable company limited by guarantee and registered in England (registered charity number 1128267 and registered company number 6825798). Charitable services are provided through Age UK and commercial products are offered by the Charity’s Community Interest Company (CiC) (registered company number 1102972) which donates its net profits to Age UK (the Charity)

• The stats 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
• Age UK's 'Wellbeing in Later Life' Index is a summary measure of what makes up wellbeing in later life, using rigorous scientific and statistical methods - importantly, including talking to older people themselves. The Summary Report can be viewed here: www.ageuk.org.uk/wellbeingresearch