With the long awaited dementia strategy finally here, the race is on to overcome the stigma surrounding the condition and spread the word about available treatments. Emma Dent reports
If you were to ask many people today which disease they most fear developing as they grow older, chances are they would say dementia. As treatments for diseases such as cancer improve and the UK's population ages, the number of people reaching an age where they are statistically more likely to develop a form of the disease is increasing.
Experts estimate there are currently 600,000 people in the UK with dementia. This number is thought likely to double in 30 years. But only around 30 per cent of those 600,000 have received a diagnosis and of these, most will have been diagnosed late.
Contrary to the popular belief that nothing can be done about dementia, drug treatments and other interventions to improve the quality of life for those with the disease and their carers are available - and can have a marked effect.
Research has shown, for example, that a brief four or five-hour programme of support and counselling at diagnosis can reduce institutional care by an astonishing 28 per cent or an average of 557 days compared with those not receiving such interventions. This is particularly crucial considering that much of the cost associated with dementia results from expensive care home provision.
"It is essential for someone with a diagnosis of dementia to have information about their health status so they can make appropriate decisions," says Alzheimer's Society head of policy and campaigns Andrew Chidgey.
But early diagnoses cannot be given without increased awareness of the disease and its early symptoms among health and social care professionals and the public. Included in this must be work to reduce the fear and stigma around dementia, which can stop people from coming forward with their symptoms and even make health professionals reluctant to make a diagnosis.
Campaigners point to a 2007 National Audit Office report on improving services for people with dementia, which compared dementia's status now with that of cancer in the 1950s, when few treatments were available, fear of the disease was prominent and patients were commonly not told their diagnosis to avoid causing distress.
As it stands, many people with concerns about their memory may wait months before asking their GP about it and what happens next is crucial.
No laughing matter
"What your GP should do is ask how long this has been going on, see the patient for themselves if they are not there and refer them to a memory service for an assessment. What often instead happens is the GP says 'well, we're all getting older, aren't we? I couldn't find my car keys this morning, hahaha. Nothing to worry about,'" says Sube Banerjee, senior professional adviser on older people's mental health to the Department of Health and professor of mental health and ageing at the Institute of Psychiatry, King's College London.
"So although there are things that can be done to have a huge effect on people's quality of life, nothing happens. The person is condemned to years of misery and confusion and they end up going into some kind of crisis."
A lack of time to assess coupled with a lack of expertise is diminishing GPs' ability to see that someone may need assessing for dementia. But GPs are also reluctant to diagnose dementia - when surveyed, only 30 per cent said they would be confident to do so. Since the quality and outcomes framework offered GPs a financial reward for having a register of patients with dementia, the number of people being diagnosed may have increased to 40 per cent. However, figures from the Alzheimer's Society comparing numbers of people with dementia in each primary care trust to those on actual GP dementia registers show that in some PCTs as few as 18 per cent of those with the disease were on a register in 2007. At most, 68 per cent of dementia patients were found to be registered.
Waiting for a diagnosis
"Doctors can think, 'if you can't treat and you can't cure - what's the point?' And diagnosing dementia is not straightforward and referring to a specialist can take time. In work we did on the report Dementia: out of the shadows, people told us they waited anything from a few months to well over a year for a diagnosis," says Mental Health Foundation assistant head of service improvement Toby Williamson. "We recommended memory clinics should have walk-in facilities so you would not have to wait to be referred."
A lack of knowledge about dementia among primary care professionals can also lead to care not being adequately managed in the community, despite the fact that many people with dementia do not need to be in a mental health inpatient or care home setting if the condition is managed.
In addition to poor data about how many people have dementia, there is also little information about which dementia services actually exist and what does exist is patchy, with good services isolated.
"Dementia affects every part of life - housing, diet and nutrition, continence, communication, transport - and can't be treated by one specialist service. So because these needs don't come together under a neat health or social care label, no one wants to take responsibility for them," says Mr Chidgey.
There are concerns that if more people with dementia are diagnosed, current specialist services will be overwhelmed; Professor Banerjee admits the services in place now are not able to deal with the number of people who need them. However, Mr Chidgey says that if community services were sufficient and specialist services similarly boosted, numbers could be managed, as early diagnosis would mean fewer people needing specialist care. Professor Banerjee adds that it is a myth that a growth in community based memory services will mean a reduction in inpatient specialist care.
Recognition of dementia in the community and mental health services is only part of the story. Campaigners have long been concerned that the needs of people with dementia in care and nursing homes - where up to 80 per cent of residents are believed to have dementia - and among people receiving care in general hospitals - where 30 per cent of patients are believed to have it - are not being met.
"There are too many tragic stories of people basically starving in hospital because they cannot feed themselves and no one recognises they have dementia so their food gets taken away when it is uneaten," says Professor Banerjee.
But dementia does seem to be gaining national recognition on a scale it has never enjoyed before.
A long awaited national strategy for dementia care in England, which Professor Banerjee co-chaired, was published this week. It stresses the importance of raising awareness across health and social care and increasing early diagnosis – boosted by every GP receiving training on dementia and establishing a memory clinic in every town in England. A senior clinician will be expected to lead dementia care in every hospital and care home and "dementia advisers" will be appointed to help patients and their families navigate the care system. Older people’s community mental health teams will be used more extensively to assess care home residents. Some£150m has been promised to fund the first two years of the five year strategy.
National Institute for Health and Clinical Excellence guidance and reports including the Alzheimer's Society's 2007 Dementia UK and the NAO report have previously made credible estimates of the number of people with dementia in the UK and their cost to the economy and highlighted how dementia has been neglected by the government, the NHS and social care.
"The last 10-15 years have seen increasing knowledge of the nature of the problem and increasing recognition of what people with dementia need and deserve. But none of it was accompanied by any additional resources or national leadership. Without a framework, services have inevitably been developed ad hoc," says Professor Banerjee. "Now dementia has reached its moment in the sun."
The strategy and the inclusion of dementia in the 2009-10 NHS operating framework is seen as a chance to put this right.
Mr Chidgey says: "I think we are at a place where we are about to see significant change. There is a vast challenge of unmet need, but the five years of the strategy should see a real difference in the quality of services and in improving the quality of people's lives."
HSJ's Implementing the National Dementia Strategy conference will take place in London on 18 March.
In a joint enterprise between Cornwall and Isles of Scilly primary care trust, the Alzheimer's Society and Cornwall county council, a year-long campaign has begun to encourage members of the public who are worried about their memory to seek help.
The campaign uses a 1950s-style bus. Staffed by health and social care professionals including nurses, psychiatrists and geriatricians, the bus parks in town centres and acts as a health surgery, with people who drop in able to talk to someone in private and take a simple cognitive memory test.
"Parking outside New Look was not going to be much use for attracting the target audience, so for the first event we got a pitch outside Marks and Spencer," says joint PCT and council programme manager for older people's mental health Tryphaena Doyle.
"We found people were making a special trip to the bus because they didn't want to 'bother' their GP. This made us think about how our memory services are run and we are trialling a drop-in memory clinic as a result."
Highlighting professional awareness of dementia among GPs, care home staff, social care staff and general hospital staff is also key to the PCT's dementia strategy, which is one of its world class commissioning priorities. This includes training GPs to have the skills to diagnose dementia.
"NICE guidance says diagnosis should be done by a specialist. We take that to mean someone with the right training, such as a GP, rather than having to mean a psychiatrist. GPs have been using patients having flu jabs as the chance to offer them a simple memory test. It is about normalising the process," says Ms Doyle.
The 2007 report Dementia UK by the Alzheimer's Society established that there are currently around 600,000 people with dementia in the UK, at an overall annual cost to the economy of£17bn. The cost of care home placements is thought to account for£7bn of this sum. The Alzheimer's Society predicted that in 30 years' time the number of people with dementia could double and the overall cost of caring for them will treble.
The King's Fund 2008 analysis of mental health costs, Paying the Price, found dementia currently makes up 66 per cent of all mental health service costs. This was expected to rise to 73 per cent of all mental health service costs by 2026.
Current mental health service costs of£22.5bn were projected to increase by 45 per cent to£32.6bn in 2026 (at 2007 prices) - primarily due to an estimated increase in service costs for people with dementia of£9bn.
The national strategy for dementia care in England, published this week, has said a national network of memory services will be set up and community mental health teams for older people used to assess care home residents for dementia.
Based on PCT populations of more than 50,000 over-65s per patch, it is thought these combined services would cost£1.6m per PCT or£165m nationally a year. Costs to local authorities are estimated at£360,000 each or£55m a year nationally.
"It was about three years ago that I noticed it, but we have been married for over 50 years so it was hard for me to be subjective," says Geraldine Ravenhill of her husband John's deteriorating memory.
"[The GP] said 'what do you expect? You're nearly 80; pull yourself together'. John came out in tears and resigned to the fact that he was just going downhill fast. But I stuck my heels in. One of our daughters saw a different GP, who said they would take a look at John."
Still reluctant to seek help, Mr Ravenhill did eventually agree to return to the GP when Mrs Ravenhill was diagnosed with cancer and while talking to a friend he was unable to remember which hospital she was being treated in - or her name.
"I knew I had been getting forgetful and not looking after myself, but I thought it was my age," he says. "But things came to a head when Gerry was ill. I owe everything to Gerry and what happened to her otherwise I don't know where I would be. You don't realise there are thousands of people the same as you because no one talks about it."
Once Mr Ravenhill was seen by a different GP and referred to a psychiatrist, Mrs Ravenhill says she has no complaints about the treatment they have received since, although she points out that if her family had not persevered, she does not know how they would be coping now.
"You don't want to hear that your husband has got dementia but there are things that can be done about it. My advice to anyone is don't expect your GP to know everything and make sure you get an early referral."
After Mr Ravenhill was diagnosed with Alzheimer's disease and prescribed a drug treatment to help manage his symptoms, the couple began attending a community centre for older people, which runs lunch clubs, social events and groups for carers. There they became clients of the Admiral Nurse scheme, a specialist dementia nurse service run by the charity For Dementia and commissioned locally to work with local mental health trusts with clients in the community while also educating and training care workers and homes about dementia. In the case of the Ravenhills, who live near Dover, the local service works with Kent and Medway Partnership trust. They see their Admiral nurse about every six weeks and can call her whenever they want to - intensity of support from the service varies according to need and is highly praised by the Ravenhills.
"Mr and Mrs Ravenhill are very resourceful about how they live with dementia and it is important that I acknowledge that and work with them to keep the integrity of their relationship," says Pat Brown, the Ravenhills' Admiral nurse.