The family of 70 year old Elizabeth Anang did everything right after she’d been diagnosed with dementia.   Her husband looked after her while he was alive, but after his death their daughter, Annemarie, turned to the local authority for help and advice.  The Council recommended a care agency, who promised that Mrs Anang would be cared for on a daily basis, by a small team that would get to know her, and that she would become familiar with.[i]

Instead, Mrs Anang had 35 different carers in just six months.  Some of them hadn’t even been told that she had dementia, and most didn’t even know if she liked tea or coffee.

Annemarie said, ‘The effect is terrible. Imagine being elderly and confused and so many different strangers coming and going and doing intimate things like washing you and feeding you. Most of the time you have no idea who they are because they’ve not had the time to build up any relationship with you. It’s very distressing for someone with dementia to have to go through that sort of turnover.’

‘When mum was diagnosed all I was given was a large pile of leaflets,” she added.

It got to the point where, for her own safety and wellbeing, Mrs Anang needed 24 hour care, and she is now in a good care home where she will be getting the care and support she needs.   (The story doesn’t say, but the likelihood is that she is a ‘self-funder’, that is, someone paying her fees herself.   On the current funding eligibility, it’s probable that the Council would insist on continuing the domiciliary care, because it costs less.)

This is not an isolated case.  Another example from personal experience is journalist Rose George, who wrote in the Guardian, ‘ I know from my dad’s awful experience that dementia care is in trouble.  Paying GPs to diagnose won’t even begin to fix it.’  She goes on to describe ‘shabby, confusing and often callous system that still passes for dementia “care”.[ii]   There are more, but there’s no space for them here.

 So why is the NHS pushing GPs to diagnose more cases on the basis that it will mean they will receive the ‘tailored care and support they need’?

They will wait an average of six months for an appointment at a Memory Clinic, and after that, be sent back to their GPs, many of whom deplore the lack of care and support following diagnosis.

It isn’t that the Government doesn’t know what is happening. (Although stories like this do make you wonder if there really is a ‘Westminster Bubble’.)  At a major conference in London earlier this year, Health Minister Jeremy Hunt called for a ‘revolution in out of hospital care’ so that those with dementia got joined-up help and support from community services and GPs.  He said there was still a huge amount to do.

An NHS spokesman said, ‘We want the NHS to make sure people with dementia get support tailored to their needs, and as part of this we have ambitious plans to increase diagnosis rates. We are introducing named accountable GPs for over-75s, who will have overall responsibility for their care, and have doubled funding for dementia research in playing our part to help people with dementia live well.’[iii]

How will diagnosis guarantee the ‘tailored care and support’ which stories like this show clearly is not in place?  

How will dementia research help people with dementia to live well?  Even the term itself is controversial.  Of the hundreds of people and family caregivers we meet at conferences and exhibitions not one of them has said they were living well with it.  Coping, yes, but living well, no. Living with increasing grief and loss, day after day, for years does not lend to it.  Not to mention the myriads of other factors.

Dementia UK says on its website, ‘Many good GPs are already doing this [make diagnoses] to support families, but many are hesitant because of the dearth of follow-up care. These plans suggest that we’re able to give people better quality of life if diagnosed much earlier, but that would depend solely on our ability to deliver high quality post-diagnostic support.  The fact is that, as a country, we’re not currently delivering this support in a consistent way. ’[iv]

‘We do not care enough for the elderly,’ says the Government watchdog, the Care Quality Commission in its latest, scathing report on provision in the care sector. [v]    Too true: we’ve been saying it for years now.  (Pilgrims’ Friend Society.)

Richard Hawkes, chair of the Care and Support Alliance said, ‘Every day, our organisations hear horror stories of people who struggle to get the support they need to simply to get up, get dressed and get out of the house. This has a huge impact on carers, who we know are struggling right now.

The health service picks up the pieces when people become isolated, can’t live on their own and slip into crisis.

‘As more and more of us need care, and fewer and fewer of us get it, the Government needs to fund care properly, as well as the health system. As health experts argue, anything else is a false economy.’

Do you have stories of good or bad care for a friend or family member?  We’d love to hear from you.  You can contact us through the form below. 

Or, on 10th and 11th February we’ll be on our stand at the Christian Resources Exhibition in Exeter.  If you’re going to be there,  come and talk to us there.

[i] http://www.telegraph.co.uk/health/elderhealth/11305679/Dozens-of-carers-in-two-months-but-no-one-knew-whether-mum-liked-tea-or-coffee.html

[ii] http://www.theguardian.com/commentisfree/2014/oct/28/solve-dementia-crisis-paying-gps

[iii] http://www.telegraph.co.uk/health/healthnews/10939257/One-in-five-dementia-sufferers-given-no-support.html

[iv] http://www.dementiauk.org/news/view/id/17/in-the-news-gps-to-be-paid-55-for-a-dementia-diagnosis

[v] http://www.telegraph.co.uk/health/elderhealth/11306227/Watchdog-We-do-not-care-enough-for-the-elderly.html

Louise Morse

Louise Morse MA (CBT) is media and external relations manager for the Pilgrims’ Friend Society. She is a writer and speaker, and author of books on issues of old age, including dementia, published by Lion Monarch and SPCK. She is a cognitive behavioural therapist, and her Masters’ dissertation examined the effects of caring for a loved one with dementia on close relatives.

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