Dementia care onus falls on families, say GPs

Published 6 July 2015

Hundreds of thousands let down by lack of support from NHS and social care.

Over three quarters of GPs (77%) think their patients with dementia rely on family as they don't get enough help from health and social care services. Almost as many (73%) believe their patients are forced to depend on friends, neighbours and other unpaid carers for support, finds a survey of over 1,000 family doctors about levels of care for people with dementia.

The poll finds that half of GPs think the NHS is doing too little to care for people with the condition. More than two-thirds believe patients don't get enough provision from adult social services after a diagnosis. Today, Alzheimer's Society warns that too many people with dementia are being let down by a system which fails to meet their needs.

Seven in ten GPs say people with dementia are left unsupported because of a shortfall in accessible local services. A further 61% say lack of cooperation between the NHS and social care acts as a barrier to patients getting support.

The survey suggests patients' lack of access to services may be undermining a national drive to improve rates of dementia diagnosis. Over a quarter of GPs (27%) admitted they would be less likely to refer people with suspected dementia for diagnosis if support services are not in place.  

Other key findings include:

  • Less than one in ten GPs say people with dementia get enough statutory support to deal with loneliness and maintain a good diet
  • Only one in four doctors (27%) believe the NHS and social services give people with dementia enough support to tackle anxiety and depression
  • 73% believe patients, families and carers are left confused by the health and social care system
  • Nearly a quarter of GPs (23%) said they haven't had sufficient training in dementia to give them a good understanding of how to manage a person with the condition
Jeremy Hughes, Chief Executive of Alzheimer's Society, says:

'Our survey gives a stark view from the doctor's surgery of people with dementia left struggling in the aftermath of a diagnosis. GPs report an endemic and deeply worrying lack of support available from health and social services, with relatives left to pick up the pieces alone.

'People can need a lot of help to live well with dementia. Families and friends are a vital source of support but they mustn't be relied on to do everything. As dementia takes hold, people with dementia and their carers look to statutory services to give them the back-up they desperately need to cope.

'With the number of people with dementia expected to grow to one million by 2021, there is no time to waste. Today's findings reinforce the urgency of putting in place meaningful care and support for all people with dementia.'

In its latest annual dementia report released today, Dementia 2015: Aiming higher to transform lives, Alzheimer's Society is pressing for a national action plan to combat dementia over the next five years.

The report urges the government and agencies to aim higher to transform the lives of people with dementia. It warns that a gathering 'momentum of change' will be lost unless statutory and voluntary sector agencies redouble their efforts to improve dementia care.

Key recommendations include:

  • NHS England and local authorities to ensure everyone diagnosed with dementia is entitled to a full package of support including a Dementia Adviser
  • A single point of contact to help carers navigate the health and social care system
  • All hospitals, care homes and home care to be dementia friendly

Stephen Blakeburn from Darlington cares for his mother, Jenny (86), who was diagnosed with dementia in 2010.

He says:

'Since my mum was diagnosed with dementia, it's been a constant, all-consuming battle to get her the support she needs. We feel like we've been failed by a system which doesn't work for us. After two care assessments which led to nothing, I've been left with no option but to drastically cut down my hours at work so I can take care of her.

'I love my mum dearly and want to do everything I can to support her, but sometimes it gets too much and it's very overwhelming. I feel like my life is on hold. As well as financial assistance, I really just need someone to support us both by giving me some time off and respite for mum.'

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