Re: Cameron launches challenge to end “national crisis” of poor dementia care
Although we welcome the government’s attention to dementia and its timely diagnosis, we are writing to express concerns about the potential consequences of the recent Secretary of State for Health’s announcement of a ‘Dementia Case Finding Scheme.’ The proposal is that doctors should ‘proactively’ ask at risk patients - including all those aged 75 and over - about their memory, and offer a screening test.
This proposal has moved beyond the raising of awareness concerning dementia, and amounts to a clear intention to screen a section of the population for the condition, without the articulation of any evidence that it fulfils the established criteria for screening. This could lead to overtreatment, harm to patients, unnecessary expense and diversion of precious resources away from other services, including support for those individuals who are seeking help for a timely diagnosis of dementia or have already been diagnosed. Our argument is that, before any screening programme is introduced, there must be evidence that the benefits out way any potential harm . Screening for dementia must be assessed in the same way as any other screening intervention.
We acknowledge the prevailing view that early diagnosis (if an accurate diagnosis were possible) might allow patients and families longer to make decisions regarding their living accommodation, and other aspects of care, while the patient is functioning at the highest possible level. However, until we have clear evidence from well designed trials of the benefit/harm and cost implications of early as opposed to ‘timely’ (i.e. the right time for that person) diagnosis, we feel this would be better accomplished by everyone (for example coinciding with their eligibility for a free-bus pass), irrespective of any diagnosis, being encouraged to make plans for their future whilst still relatively fit and well. This is particularly important given the knowledge that very substantial proportions of the older population will die with dementia or severe cognitive impairment . Whilst we welcome the Government’s emphasis within the NHS Mandate on improving dementia care, the proposal to assess a prescribed section of the population for memory problems amounts to a non-evidenced population screening programme, which has not been subjected to the same scrutiny as other such programmes. The UK National Screening Committee (UKNSC) has a remit to advise the Government concerning all screening programmes, and gave very clear advice in June 2010 that screening for Alzheimer’s Disease ‘Should not be offered’ . The full report analysed the case for screening against the widely accepted World Health Organisation (WHO) Wilson-Jungner screening criteria, and concluded that:
‘The analysis of the literature against the above criteria indicates that the implementation of an evidence based routine screening programme for Alzheimer’s disease that will reduce mortality and morbidity is not yet a possibility.’
We have to ask why the Government has proposed a policy that is directly contrary to UKNSC advice?
Unlike most other NHS screening programmes, patients are not to be invited for screening, but healthcare professionals will be required to perform it opportunistically, for example, when admitted to hospital or attending their general practitioner. This means that patients, or their relatives or carers, will not have prior warning of the screening test, or an opportunity to be informed of either the potential benefits or harms of screening. The lack of both patient information and patient choice in this proposal are major concerns. Of course, where a general practitioner or other health care professional has reason to believe that the patient’s symptoms might be due to dementia, this does not negate them carrying out an assessment of memory and referring appropriately. However this is very different from ‘screening’ asymptomatic individuals indentified just by the virtue of attending the surgery.
While the healthcare community needs to work together to help reduce the stigma associated with a diagnosis of dementia, it remains a frightening diagnosis which the public are now very mindful of due to the success of the awareness campaigns. We should not underestimate the potential negative impact that such a diagnostic label can have. The NHS Mandate itself concludes that:
'Dementia is the illness most feared by people in England over the age of 55,'
and a recent study on the impact of a dementia diagnosis concluded that:
'Being told one had dementia had a big impact on a patient's identity and often caused feelings of loss, anger, fear, and frustration'.
If patients are aware that a visit to their GP could result in them being ‘examined’ for a diagnosis of dementia, irrespective of the reason for their attendance, then there is a very real danger that some patients will avoid seeking help from their GP when it is needed.
While treatment with medication can be helpful in improving the symptoms of dementia, the WHO 2012 document Dementia - A Public Health Priority states that ‘No treatments are currently available to cure or even alter the progressive course of dementia,’ reflecting the lack of evidence that early treatment with medication alters the course of the disease. There is a danger with screening for dementia that patients will simply end up on medication for longer, at extra cost to the NHS, but with no benefit to the patient.
We agree with the Government that dementia services need to improve, and this needs to be on the basis of evidence - otherwise we are likely to divert resources away from those areas of proven benefit to those with only belief to support them. The priority needs to be to improve access to diagnosis and support for patients and their families who are already seeking help - a huge challenge, which will require significant investment. To embark upon the proposed screening programme not only lacks an evidence base or a proper assessment of potential harms, but will also divert much needed funds from this important work, and overwhelm an already over-stretched service.
1. General Medical Services – Contractual Changes 2013/2014. Letter to the Chairman of the General Practitioner’s Committee December 6th 2012. Available at: https://www.wp.dh.gov.uk/publications/files/2012/12/GMS-Contract-letter.pdf
2. Brayne C, Fox C, Boustani M. Dementia Screening in Primary Care is it Time? JAMA November 28, 2007: 298,20:2409-2411 download jama.ama-assn.org
3. Brayne C Making Alzheimer’s and dementia research fit for populations. Lancet 2102: 380, 1441-43.
4. The Mandate: A mandate from the Government to the NHS Commissioning Board: April 2013 to March 2015. Available at: https://www.wp.dh.gov.uk/publications/files/2012/11/mandate.pdf
5. The UK NSC policy on Alzheimer's Disease screening in adults (Jun 2010). Available at: http://www.screening.nhs.uk/alzheimers
6. Bunn F, Goodman C, Sworn K, Rait G, Brayne C, et al. (2012) Psychosocial Factors That Shape Patient and Carer Experiences of Dementia Diagnosis and Treatment: A Systematic Review of Qualitative Studies. PLoS Med 9(10): e1001331. doi:10.1371/journal.pmed.1001331 Available at http://www.plosmedicine.org/article/info:doi%2F10.1371%2Fjournal.pmed.10...
7. WHO Policy Document (2012). Dementia - A Public Health Priority. Available at: http://whqlibdoc.who.int/publications/2012/9789241564458_eng.pdf