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Patients 'distressed by dementia diagnosis'

The Government has been warned its case-finding drive for dementia could backfire as patients commonly experience anxiety and distress whilst waiting for a definite diagnosis.

The small study looking at the experiences of patients referred by GPs to memory clinics in England found patients felt ‘abandoned and ignored’.

The study comes as the RCGP called for better services to support GPs in diagnosing and managing patients with dementia, including better access to memory clinics.

GPs are going to be offered a directed enhanced service designed to increase case-finding of dementia in primary care, leading to concerns from campaigners who have argued the move would cause anxiety and depression in patients, while there is no known cure for the disease.

The interview-based study in the British Journal of General Practice – published this month - looked at the experiences of 27 individuals with memory problems and 26 carers.

They found the process slow and reported they had limited information and contact between appointments.

They found: ‘Many experienced tests and assessments as distressing, sometimes in settings that were perceived as alarming or potentially stigmatising by association.’

They recommended policymakers ‘act cautiously’ before urging more rapid diagnosis.

‘Policymakers should act cautiously in giving the impression that rapid diagnosis is always possible or desirable. The settings in which the diagnostic process is carried out need to be considered, and more time may be needed to address individual needs,’ they said.

Under the draft terms of the DES worth £3,600 per practice, GPs will have to assess all patients over 75 and those aged over 60 years with risk factors such as cardiovascular disease, diabetes, learning disabilities or long term neurological conditions, such as Parkinson’s disease.

An online petition against the DES which be funded by removal of QOF points from the organisational domain has gathered nearly 300 signatures.

The study comes as the RCGP warned GPs needed more support, following an audit showing a wide variation in dementia diagnosis rates.

Professor Clare Gerada, RCGP chair, said GPs needed access to a ‘wide range of services and resources’ such as memory clinics support patients beyond diagnosis.

She said: ‘We welcome Health Secretary Jeremy Hunt’s personal interest in this issue and hope that this is channelled into sustaining and increasing services, such as memory clinics.

‘We hope that his concern is backed up with support for GPs to deliver the resources necessary to improve timely diagnosis.’

Readers' comments (7)

  • People are having very mixed experiences of referrals already.Some I have talked to have been referred for cognitive tests without informed consent not knowing what the tests were for or the reason for being sent in the first place.I used the word 'sent' advisably. After being told by relatives afterwards they have been extremely angry and rightly feel insulted. A few have said that if any medic tried to give them a test they would quickly be put in their place. Some obviously would want to participate. But once it becomes known that payment is being offered for doing these tests,the response will be interestin - .as will be the take up by different groups in society.It will be far easier to 'encourage' some than others.

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  • GP services are being hampered because of lack of support services being available to manage patients diagnosed with Dementia. It would make more sense for focus to be placed on hospital services in those areas where they are falling short due to massive cuts by the FTs which has been highlighted dramatically during this winter. The lack of beds for the acutely ill and the overwhelming pressures on the emergency services needs to be addressed. Queues of ambulances at the A&E is just not acceptable and getting these issues solved should be a priority for the government but all they do is look at the symptoms and never deal with the cause so the NHS itself is a very poorly patient. Wake up Jeremy Hunt to the real issues facing GPs and their patients.

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  • Dementia is not, as far as I know, a communcable disease. The rush to diagnosis, where there is not only no cure, but little by the way of amelioration of symptoms, would seem like cruelty.

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  • Better to diagnose dementia in primary care than when patients are in secondary care and not being managed appropriately because of a lack of diagnosis...

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  • Whilst 'Anonymous @11.11am' has a valid point, an equally and possibly greater related concern might be the suboptimal management of patients in secondary care DUE TO having such a label.
    Non-discriminatory protocols are all very well, but the 'demented man' in bed 1 may not be treated the same as the man in bed 2 who gets a bit confused at times.
    Then again, increasing the prevelance of the diagnostic label might reduce that tendency to prejudice.

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  • I know there is no cure but I would want to know asap if I was heading towards becoming the man in bed 1. (see Alan Laurie comment timed 4.06 pm) I would have time to prepare my care directive and living will. Also go out to some good eateries before it is too late.

    I will make sure my solicitor had a copy of my advanced directive so he knows what I wante.

    In my case I could secure funds to pay someone to check on me daily when in hospital to make sure I was clean, dry, fed and watered.

    Daily reports to my solicitor would be part of the process. He gets a bonus if my kids say I had a good death!

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  • Some people may think I intended to practice defencive medicine in reverse - too true. There is no way I intend to expose my self to a poor standard of hospital care when I am least able to defen myself. Once a control nut always a control nut.

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