Leading change in diagnosis and support for people living with dementia

What does the future hold for the care and support of people living with dementia? With a general election looming, parties’ flagging manifesto commitments on health and care funding and ‘reforms’, the NHS five year forward view proposing new models of care, and debates on putting mental health on a par with physical health, it may seem hard to get a clear view.

There are an estimated 850,000 people with dementia in the United Kingdom – a figure set to double over the next two decades – plus an estimated 500,000 carers for people with dementia. Few families remain untouched by the condition.

Alongside this human cost, dementia has major implications for health and care services. One in four people in acute hospital beds has dementia, as do 40 per cent of acute admissions in those over 75. The majority of long-term care residents have dementia or cognitive impairment, as do many people receiving statutory social services. Dementia is often incidental to other acute or long-term conditions, sometimes causing complications and worse outcomes.

On 24 February, The King’s Fund and the Alzheimer’s Society are hosting a one-day conference to celebrate recent progress in support for people and families living with dementia. We’ll explore continuing care gaps and controversies, and discuss the future of services. The speaker line-up is incredibly diverse – people with dementia, carers, voluntary organisations, and clinicians and managers who are delivering impressive innovations in their local services.

I’m not quick to credit politicians, but in my view, the 2009/10 National Dementia Strategy for England, co-authored by Sube Banerjee and overseen by Alistair Burns – both speakers at our conference – has been a real force for good. It raised awareness, got dementia properly ‘on the radar’ and led to spin-offs such as the Prime Minister’s Dementia Challenge. Further momentum has come from the 50-plus bodies in the Dementia Action Alliance – led by the Alzheimer’s Society.

There’s been lots of other progress. Hospitals have improved recognition of the needs of inpatients with dementia through enhanced training for staff, specialist liaison services and dementia-friendly ward environments (see work on enhancing the healing environment). The Royal College of Psychiatrists’ National Audit of Dementia has shone a light on quality in every English acute provider.

Local government health and wellbeing boards, in conjunction with their CCG partners, now incorporate dementia-friendly communities into their plans, drawing on assets beyond health and social care – for instance, involving people with dementia in group activities, sport and exercise. The Care Quality Commission is focusing on the quality of care for people with dementia in hospitals or long-term care, and the Care Act 2014 makes assessment of carers’ needs statutory.

Yet as fast as we progress, the rising demand still outstrips supply. Significant care gaps persist. The excellent, innovative services showcased at our conference need to become the norm.

The insufficient capacity and investment in specialist dementia services to support people post-diagnosis need to be addressed. The pressure on general practice and wider primary care teams makes care-planning and support hard to mainstream, and highly pressurised acute hospitals have other pressing priorities. Many carers and patients describe disjointed care, and poor support and information. A medical diagnosis of dementia arguably gets labelled a ‘social’ and hence a ‘means-tested’ problem – though the artificial divide between health and social care, and the funding and governance models, are ripe for change.

Towards the end of the conference we hope to explore how approaches to support people living with dementia need to change over the next five years.

I’ve had no preview of what our panellists or audience might say, but I can guess some of the themes. Will the 2014 Care Act push meaningful assessment and support for carers as the norm and make social care entitlements more transparent? Will it be backed by adequate social care funding and entitlements for those with ‘substantial’ care needs? Will the policy drive towards more integrated services deliver tangible gains? Will the talk on ‘parity of esteem’ for mental health be backed by investment?

It promises to be a fascinating day. We hope you can attend in person, follow us on Twitter on the day at #kfdementia, or contribute to the discussion below.

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Comments

#523866 Jocelyn Cornwell
Chief executive
The Point of Care Foundation

Hello David
Congratulations on the Feb 24 conference - it promises to be a great forum for conversations between people working to improve services for people with dementia. Great to know that people with dementia and carers will be on the platform. Their voice really needs to be heard.

We know from research we did for HE North West London last year that people with dementia and carers have much the same needs as everyone else. They want technically, clinically competent professionals who engage with them fully as fellow human beings. They told us "See me (see my mother, my father, my sister, my husband) as a person, beyond the diagnosis".

We should listen to that message and do much more than we are currently doing to enable staff to work in this way with patients and carers. It helps to think about patients and carers as a resource in themselves. We're about to start a new project in NW London developing a cohort of patients with dementia and carers who will participate in the training and education of health professionals as trainers. Is anyone else doing similar work? If so I would love to connect with them.

#526168 Wayne Goddard
Head of Strategy and Delivery
NHS Doncaster CCG

Hi David
Yes the 24th conference looks really good and I am a great support of "do what we say" and "say what we do" and I agree there is lots to celebrate however with the NDS now "out of date" and the fact there is unlikely to be a refresh but a "visioning document" my plea to Alistair and the H & SC leaders we mustn,t let dementia be consumed and then lost with a focus on frailty, intermediate care and acute activity. Yes dementia is a theme in all these domains and we know dementia does not travel alone but adding dementia to any condition changes the whole picture. Dementia is a universal problem and currently there is not a universal solution so we musn,t lose the sight of dementia importance not just in health and social care but in our whole communities. So with this in mind I would like to see the profile of dementia remain high on the agenda; celebrate by all means but there is so much more to do.

#529363 Shelley Lynch
adult Carers support worker
Carers Support Merton

One of the biggest things that carers request is respite. They want to look after their loved one but to do so they need regular breaks in order to carry on the enormous amount of caring. Some carers do not even receive 4 hours of respite a week. This is not acceptable and not giving the carers a break causes the system to break down as the carer becomes ill and the cared for then needs to be cared for.

#543491 Joan Smith
caring for my husband John
none

I have looked after my husband John for 15 years, I disagree, my husband falls apart if I am not their. He went into hospital 5 years ago, and changed. He came home dehydrated, malnutrition, bedridden, double incontinent and off his feet for good. He has Osteoarthritis in both knees, and was denied new knees because of his dementia. Everything needs to be done for him, and yet he has been told he does not hold the criteria for continuing health care. If he goes into care he will fall apart again! My husband and I have been married for 50 years, if he didn't have dementia we would still be living together, so why would we want to be apart?

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