It’s disgraceful that more than half of all people with dementia are not receiving a diagnosis, and disappointing to see such a disparity in diagnosis rates in different regions of the UK. This goes against best clinical practice and is preventing people with dementia accessing the support, benefits and the medical treatments that can help them live well with the condition. He stated that failing to diagnose dementia was delaying treatment and “causing unnecessary suffering”. The article by James Gallagher in the BBC News in January 2013, also stated that the Alzheimer’s Society estimates that about 800,000 people in the UK have some form of dementia, but most of them have not been diagnosed, and interestingly, they estimate that only 32% of dementia sufferers were diagnosed in the East Riding of Yorkshire, compared with 76% in Belfast.
Since then, the Government have announced a commitment to increase diagnosis rates in England by 20% by 2015.
Jeremy Hughes commented that this is a key step to improving the lives of people with dementia, and that “There is surely no other condition where we would tolerate people living without treatments, without support and in the dark about what is happening to them. This is exactly what is faced by the 54 per cent of people with dementia who never receive a diagnosis . . . we need a step change in the way we think about dementia to demolish the stigma standing in the way of people seeking treatment and ensure GPs are equipped to deliver vital support”
There have been several reports in the press recently that a cure for Alzheimer’s is close, and it was recently reported in the Mail Online by James Chapman that a new “treatment to reverse Alzheimer’s Disease could be available in five years . . . experiments on mice have indicated that a new vaccine not only halts the advance of the disease, but repairs damage already done. It could also be given to patients whose families have a history of Alzheimer’s, to prevent them developing the disease.” The article states that the research was being hailed as the most significant breakthrough yet and that the Alzheimer’s Society had said “This really does make us optimistic”.
In the meantime, what are the current rights of Alzheimer’s patients to receive drug treatments?
The Alzheimer’s Society website explains that the latest 2011 guidelines from the National Institute for Health and Clinical Excellence (NICE) recommends that donepezil, rivastigmine and galantamine are available as part of NHS care for people with mild-to-moderate Alzheimer’s disease. It states that there are also now several studies − including work supported by Alzheimer’s Society − which suggest that cholinesterase inhibitors may also help people with more severe Alzheimer’s disease. However, these drugs are not licensed in the UK for the treatment of severe Alzheimer’s disease. The 2011 NICE guidance recommends use of memantine as part of NHS care for severe Alzheimer’s disease and for patients with moderate disease who cannot take the cholinesterase inhibitor drugs. Between 40 and 70 per cent of people with Alzheimer’s disease benefit from cholinesterase inhibitor treatment, but it is not effective for everyone and may improve symptoms only temporarily, between six and 12 months in most cases. According to an Alzheimer’s Society survey of 4,000 people, those using these treatments often experience improvements in motivation, anxiety levels and confidence, in addition to daily living, memory and thinking.
The website explains that in the first instance, these drugs can only be prescribed by a consultant, and that a GP will need to refer the person to a hospital for a specialist assessment. A consultant will carry out a series of tests to assess whether the person is suitable for treatment and will write the first prescription, if appropriate. Subsequent prescriptions may be written by the GP or the consultant.
Standards of Care for Dementia Sufferers
NICE have also recently issued new guidance on dementia care, and under the shake-up of the NHS, it now has responsibility for providing guidance on care and support provided by councils and care homes. The Alzheimer’s Society state that “These standards will be a useful tool for the care sector and show what people with dementia and carers should be able to expect. But, as they are not mandatory, it’s a case of ‘wait and see’ as to whether this guidance will drive real change or just sit on the shelf”.
It seems that due largely to the hard work of the Alzheimer’s Society in campaigning for change and the Government’s commitment to increase diagnosis rates, there are now several options available to treat the symptoms of Alzheimer’s and dementia. Obviously, a GP’s ability to make the necessary referral depends upon sufferers and families seeking their advice in the first place, preferably at an early stage.
This is an area we may potentially see negligence claims arising in the future if appropriate care and treatment is not provided in accordance with the current guidelines.