I loved this letter by Prof Steve Iliffe.
It captures a lot of the issues I worry about.
I don’t have particularly strong views either way about the diagnosis rates of dementia in England, other than the fact I am mindful that some people wait unacceptably for years before they are formally diagnosed.
This is a concern that some persons with dementia may not wish to have a diagnosis of dementia.
There is some evidence to support this in fact, because of the documented delay in times for people to seek medical help.
There is still unquestionably a stigma for a person receiving a diagnosis of dementia, which is a huge life-changing event for the person involved and those closest to him or her.
GPs are brilliant professionals. My late father was one for about 25 years in fact.
However, some may be mutually colluding with persons who don’t wish to receive a formal diagnosis of dementia, in that either party may prefer to attribute memory problems to ‘normal ageing’.
We do run the risk of pathologising memory problems. Already, receipt of a diagnosis of dementia takes you down a medicalisation pathway as Prof Iliffe states. Pathologising ageing is problematic for very obvious reasons.
I also think this letter touches upon a number of ‘misunderstandings’ of dementia care.
Just because the medications for memory and attention aren’t that successful for many, there’s a huge danger that people are left with the impression that nothing can be done.
Much can be done to improve living well with dementia, including addressing the needs of a person as well as optimising the design of the immediate and built environments.
I must admit that I am biased towards the ‘care’ end of making sure care homes are properly affordable, and something to be proud about. I think that preserving the dignity of a person who happens to be living independently well with dementia, such that he or she exerts control and choice, is a perfectly reasonably one.
I am reproducing Prof Iliffe’s letter below, with kind permission of Prof Iliffe whom I caught briefly at lunchtime today.
The original publication of the letter is here.
Martin Brunet (Rapid response 31st October) adds an important point to the timely and perceptive critique of dementia policy and practice by Le Couteur and colleagues (1). The apparent under-diagnosis of dementia in general practice is presented as a problem needing urgent solution. In my experience few are interested in why diagnoses rates are low. Contrary to the rule of no intervention without a diagnosis, remedies and targets are proposed and pursued energetically.
I suggest eight reasons why there is a diagnostic gap. Changes in thinking, memory and behaviour are not recognised as significant by the individual experiencing them, or by those around them, who may normalise changes as being part of ageing, due to life events or expressions of the personality. Symptomatic individuals may not accept that anything is wrong and resist further investigation. General practitioners may misattribute changes to ageing, well beyond the point of plausibility. General practitioners may protect symptomatic patients from a stigmatising diagnostic label which could place them on an escalator into disability; in doing so they will protect themselves from the consequences of mislabelling. General practitioners who believe that there are few resources to support their patients with dementia may be slow to diagnose. In some patients diagnosis may appear to make no difference to care, or may perversely worsen it by blocking access to rehabilitation or threatening residency in a care home. Memory clinics may have long waiting lists, which lengthen as demand increases. And finally, a formal diagnosis may be made by a specialist but not get recorded in a way that is captured for the Quality & Outcomes Framework reporting.
Different combinations of these (and other) factors may occur in different contexts, making local understanding important. This is not necessarily how the NHS works. The over-emphasis on diagnosis may divert resources away from much-needed community services, in another turn of the Inverse Care Law. Sceptical GPs will be vindicated if low-level support for patients early in the disease course, or palliative care for those at the end of life, fail to meet their needs whilst memory clinics seek extra funding to deal with their backlogs.
(1) LeCouteur DG, Doust J, Creasey H, Brayne C Political drive to screen for pre-dementia: not evidence based and ignores the harms of diagnosis BMJ 2013;347:f5125