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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.’