Patients and carers in Brighton and Hove are being promised a better deal when it comes to dementia.
Almost two in three sufferers have not had their condition diagnosed.
So while family doctors have identified more than 1,100 patients locally as having dementia, there are more than 2,000 others who may not be receiving the right help.
In other cities, towns and villages the gradual onset of dementia is also understandably missed in many patients.
But over the past few years the spotlight has been returning to an illness often described as a living death.
One reason is the interest shown by David Cameron. The Prime Minister’s dementia challenge shone the spotlight on an unfashionable issue.
Credit too goes to the actor Jim Broadbent who has also played a part in raising the profile of dementia with both a film and television role.
In the film Iris he played the husband of the author Iris Murdoch, who had Alzheimer’s disease.
And more recently in the BBC drama Exile he played a perplexed tabloid newspaper journalist ravaged by the condition.
He gained some insight from his mother’s plight as she was also a sufferer.
In Brighton and Hove the pressure has been growing to achieve the first of the four objectives set out in the National Dementia Strategy – good quality early diagnosis and intervention for all.
Money comes into it, of course. The National Audit Office said in 2007 that “early diagnosis and intervention in dementia is cost effective”.
The aim is to ensure as many as four in five people with dementia receive an accurate and timely diagnosis.
Those less likely to have the condition identified as quickly are the more complex patients who are likely to need to be seen by a specialist before a conclusion is reached.
The memory assessment service was due to be up and running in the spring.
The Joint Commissioning Board, which is made up of council and NHS representatives, received a report on the subject yesterday (Monday 28 January).
The report said that the memory assessment service should now be operational by June. It should lead to a 10 per cent rise in the number of people having their dementia spotted over the next few years.
As a result Brighton and Hove hopes to exceed national targets in this area.
The speedier process is intended to ensure that patients receive a diagnosis within ten weeks of being referred by their family doctor.
The memory assessment service will also offer information, support and advice to people with dementia and their carers for up to a year after the condition is diagnosed.
The Prime Minister is not the only politician to talk about dementia. The subject came up in the House of Commons a few weeks ago.
Brighton Kemptown MP Simon Kirby said that it was “an emotional debate with a number of members (MPs) making very moving speeches drawing on their individual experiences of this terrible disease. It was also very constructive.”
An All-Party Parliamentary Group, made up of MPs and lords, touched on one aspect of life for patients a few years ago in a report called Always a Last Resort. It flagged up the problem of over-prescribing anti-psychotics in care homes.
At that time it was estimated that up to 105,000 people with dementia were wrongly being given a chemical cosh.
The effects of this sort of scrutiny are still being felt. Locally, an audit was carried out over two years.
It found a drop in prescribing and more medication reviews being carried out. It also indicated that patients living at home were as likely to be given anti-psychotics as those in a care home.
The report to the Joint Commissioning Board yesterday said that Brighton and Hove had a shortage of specialist EMI (elderly mentally ill) beds. People are regularly placed out of the area as a result.
Meetings have been held with care providers so that more patients can be placed locally as the year progresses.
Not only will it be good for patients and their families but it will also save taxpayers money.
One area where more taxpayers’ money is being spent locally is on research.
More than £2 million is being spent on a project involving Brighton and Sussex Medical School. It aims to replace the current pen and paper test used by many doctors to assess patients.
Instead it wants a more accurate computer-based test. And it wants widespread use of ‘brain health centres’.
Those involved in the project hope that in future patients will be examined in community-based memory clinics using mobile MRI (magnetic resonance imaging) scanners.
The project is being led locally by Dr Dennis Chan, who works as a lecturer at the medical school and as a consultant for Brighton and Sussex University Hospitals NHS Trust.
He said that a computerised test was much more sensitive to the early signs of disease than a brief pen and paper test.
He said: “Current diagnosis of dementia relies on traditional pen and paper memory testing and on visual inspection of scans with the attendant risk of human fallibility.
“The diagnostic approach espoused by the brain health centres is digital – quantitative and rapid – in contrast to the current qualitative and slow analogue way.”
He said that the project would speed up access to the kind of evaluation currently available only in research centres such as his.
As a result patients will be cared for sooner than has ever been possible before.
Dr Chan said: “Waiting lists for facilities such as my own are months long so the time to diagnosis via a brain health centre is greatly shortened.
“In the future the roll out of the technology would mean that referral to specialists in clinics like my own is fast-tracked thus permitting earlier delivery of best care.
“One of the great strengths of the project is the provision of state-of-the-art diagnostic tools to patients based in the community thus getting rid of regional inequalities.
“At the moment people living in rural areas may not have the same chance of accessing the same diagnostic services as those who live close to university hospitals and research centres such as the one I work in.”
A key benefit for patients given a timely diagnosis is that they can receive the right treatment and receive it promptly, giving them a better quality of life.
This is good for their families too. Relatives have often described feeling bereaved while a loved one is still physically living.
Perhaps not surprisingly, it is hoped that the new system will also mean significant savings for the NHS and council care budgets.
Another key change locally has been funding a dementia champion at the Royal Sussex County Hospital for a year.
The dementia champion’s job is to ensure the relevant patients receive better care, in part by increasing education and awareness of their needs among other staff.
Memory screening for over 75s who are in the Royal Sussex for more than 72 hours is another tactic being used.
A Sussex-wide audit of hospital patients with dementia found that they were twice as likely to be admitted as people without dementia who have the same condition. And they stay in hospital four days longer on average.
People with dementia go into hospital for the same reasons as those without.
They suffer falls, breathing problems and urinary tract infections. But often their illnesses are at a later stage of severity or complexity, making it less likely that they can be treated at home.
Both the Prime Minister’s dementia challenge and the report to the Joint Commissioning Board in Brighton and Hove yesterday are about improving care.
Some aspects have improved. But public spending is under pressure and charities such as Mind and the Alzheimer’s Society also face hard budgeting choices.
As people live longer, so dementia has affected more people. For families, the strain can be enormous.
Much has been achieved but much remains to be done.
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