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1 in 3 with dementia diagnosis don’t get NHS follow up support they're supposed to

Published on 13 February 2018 01:00 AM

New analysis from Age UK reveals 1 in 3 people with a life-changing diagnosis of dementia don’t get the follow up 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.

1 in 3 people with dementia don't have a care plan

New analysis from Age UK shows that over 1 in 3 people with dementia don't have a care plan, despite the fact that regularly reviewed care plans should be available for everyone living with dementia. 

Care plans are important because they facilitate follow up support from the NHS, and help ensure that other support a person may be receiving such as social care is properly integrated 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
  • However, 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 at a quarter (24.7%) of practices only 50% or fewer people with a dementia diagnosis had received a new care plan or had their existing care plan reviewed in the last 12 months.

Age UK's new report recommends 'Promising Approaches to Dementia'

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. For example:

  • 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.
  • 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.
  • 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. 
  • BUDS run by Better Understanding for Dementia in Sandwell: BUDS volunteers arrange 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. 

'We have to do a lot more'

Caroline Abrahams, Age UK's Charity Director, commented: '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".'

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Last updated: Dec 05 2018

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