The introduction of cognitive enhancing medication has created an expectation that drug treatment is a significant part of dementia management to the point that rate of cholinesterase inhibitor prescribing has been suggested as a quality standard.3 Whilst dementia is coming out of the wilderness to the mainstream, there is a risk of losing the supportiveness of the best quality dementia care in favour of a mechanistic, high-throughput mode of delivery of diagnosis and treatment initiation. Every diagnosis of dementia is laden with a meaning that is very much unique to that patient and his/her carers. Vital to that meaning is the experience of hope.
Memory clinics: unrealistic expectations
The memory clinic movement has been beset by a multiplicity of models, generating strenuous debate.3 Some view memory clinics as effective tools to fight stigma4 associated with dementia by providing high quality assessments, interventions and support citing a pan-European study,5 which identified a link between stigma and the absence or underuse of effective interventions in dementia. Critics argue against memory clinics focusing on early diagnosis of dementia in the absence of disease modifying medications and backup services.6
The accuracy and efficiency of these clinics in achieving diagnosis is a justifiable measure of their utility but applying a medical label is not an end in itself. The NDS has proposed the commissioning of Living Well programmes and dementia care workers7 but the provision of a medical diagnosis, viz. dementia, prompts the consideration of medical treatments which can all too readily become invested by excessive anticipation of helpfulness.
Cholinesterase inhibitors and their benefits
There is little evidence that the currently licensed cholinesterase inhibitors, donepezil, rivastigmine and galantamine modify the disease process of Alzheimer’s but they palliate cognitive features,8 attenuate functional deficits8 and although NICE found little evidence of effect against extant challenging behaviours, the continuation of donepezil has been reported to improve neuropsychiatric symptoms compared to reverting to placebo in a randomised, withdrawal study.9
Even the Alzheimer’s Society recognise the limited effects of cholinesterase inhibitors whilst welcoming the symptomatic benefits they can provide for sufferers.10 Until recent years, restricted access to them has led to these drugs achieving mythical status11 and therefore managing expectation is a crucial task when prescribing these drugs.
Still, anti-Alzheimer’s drugs can become a talismanic part of the care plan, particularly following an initial favourable response. Once the illness has progressed, withdrawal of the drug can be difficult to negotiate because of the reluctance of both prescriber and carers to be seen to be abandoning hope. To quote the Victorian artist, GF Watts: “Hope need not mean expectancy. It suggests... the music that comes from the last remaining chord.”12
This philosophy is reflected in the concept of “holding” described by the psychologist Tom Kitwood, whereby the therapist provides a safe psychological space for the dementia patient in which they can ventilate their feelings of vulnerability.13 The prescriber may be shoring up the walls of that holding space with the drug until the dementia has progressed to a stage at which insight is completely lost and the drug can be stopped without the patient’s awareness. Nonetheless, the parallel emotional experiences of the carers may make drug cessation controversial even at that point.
The pressure upon patients, their families and clinicians to be remorselessly hopeful is described by the commentator, Barbara Ehrenreich, in her book, Smile or Die. She promotes the application of evidence-based medicine to treatment decisions but recognises the persuasive power of positive thinking and the optimistic bias that can skew science as it is conducted in the real world.14
NICE appeared to recognise the limitations of the randomised-controlled trials and their statistical interpretation when publishing their revised technology appraisal of the anti-Alzheimer’s drugs, acknowledging the technical difficulties of determining quality of life in dementia and accepting the clinical testimony of experts in the field.15 NICE previously indicated six monthly reviews of patients in receipt of anti-Alzheimer’s drugs but this appeared to be an arbitrary timescale and the most recent guidance merely advises that treatment should be monitored regularly and continue whilst worthwhile effects on cognitive, global, functional or behavioural symptoms are observed.
The recent guidance warns against over-reliance on the MMSE8 as an indicator of dementia severity but reaffirms that cholinesterase inhibitors should only be a treatment option for mild to moderate Alzheimer’s disease.15 Meanwhile, how does the clinician decide upon what constitutes benefit especially once the illness has continued to worsen? In practice, maintaining hope is likely to represent, at least, a component of “worthwhileness”.
A convenience sample of 17 old age psychiatrists in the East Midlands responded to our questions on their practice of withdrawing cholinesterase inhibitors as dementia worsens. There was unanimity against adherence to stopping the drugs solely on the basis of MMSE score whilst significant majorities (13/17 in each case, p<0.05 on two-tailed binomial test) favoured being led by pragmatic indicators of progression such as care home placement or failure to recognise family members. It is heartening to see therefore that NICE guidance has moved alongside clinical practice.
What terms do prescribers use when trying to maintain hopefulness when issuing anti-Alzheimer’s treatment.
• A stitch in time saves nine (expectant hope)16
• People on these drugs do better on average than those who are not (statistical hope)8
• Not curative but helpful (attenuated hope)8
• Everything to play for. We have caught the illness early. (expansive hope)16
• A lot of living to be done yet (hopefulness as reflected in the NDS)1
• You are worsening but may have been worse if it were not for the pills (cautionary hope)8
• I am not sure if the drugs are still working but let us not rock the boat (sceptical hope)9
• I do not want to trigger a crisis by stopping the drugs even though I doubt their effectiveness at this stage” (defensive hope).
There is evidence to support these statements although the sentiments impinge on what could be called spiritual care of the patient. Critics may argue that some of them are merely represent a clinician justifying their less than convincingly effective prescribing, thereby diverting resources away from more effective interventions.17
Memantine: hope in severe Alzheimer’s?
The revised NICE guidance recommends memantine as an option in the management of severe Alzheimer’s or in moderate disease if cholinesterase inhibitors are not tolerated. This evidence is of only a small clinical effect (delaying need for full-time care by 0.8 months according to the NICE Assessment Group)8 but the curb on antipsychotic prescribing has led to memantine being promoted as a safer means to control agitation. NICE commented upon the poor quality of evidence and concluded that the “size of symptomatic is uncertain” but “heard from clinical specialists that behavioural benefits may not be well captured in available evidence”.8
In our survey, a non-statistically significant majority (11/17) of old age psychiatrists in the East Midlands admitted to be more willing to stop the cholinesterase inhibitors at an appropriate stage if they had access to memantine. One may argue that these clinicians are trying to offer hope despite the limited efficacy of those medications. But the amount of hope needed to navigate this illness should not be underestimated. We may also wonder whether any interventions other than medications will attain the aura of hope needed for the patients, carers and also
Changing the agenda
New drugs in development for dementia have disappointed in recent years and we are unlikely to see any new drugs being licensed for use in dementia within the next 5–10 years. Perhaps it is the right time to overhaul dementia care and start focusing on interventions beyond prescribing.
The increasing emphasis on primary care in the delivery of dementia services will mean that once anti-Alzheimer’s medication is initiated and titrated in secondary care follow up will evolve to become a primary care function. Earlier recognition will mean most patients will not require an elaborate care package at point of diagnosis but the uncertainty surrounding rate of progression and subtle changes in function and behaviour will not preclude the need for expert support.
The proposal within the NDS for the appointment of dementia care advisors to travel alongside patients during their “dementia journey”1 was strongly supported by the Nuffield Council on Bioethics in its report based on patient and carer consultation.18 There is a significant risk that in the rush to early diagnosis insufficient resources will be left for services beyond diagnosis and treatment initiation. Avoiding this deficit may become a major challenge for local commissioning groups. Continuing anti-Alzheimer’s medication may bolster hope but in the face of unaddressed psychosocial issues may be counterproductive.18
GPs are skilled in holistic assessment but unless they are given the appropriate tools, any doctor is prone to revert to the materialistic response of another prescription.
Anti-Alzheimer’s drugs are firmly embedded in secondary care practice and are likely to become more readily available now off-patent versions came on stream in 2012. GPs may not be initiating these drugs any time soon but, under shared care agreements as indicated by NICE, will become more involved in continuing prescriptions and stopping them once benefits have been lost. The prescribing is the simple bit. Dementia fits in well with a chronic disease model of care but the assiduousness and continuity of support threatens to be lost as more and more people obtain an earlier diagnosis under the expansion of memory services promoted in the NDS.
Hope for patients with dementia often means more than pills and skilled, consistent support throughout the course of the illness should be available.
The situation described in the vignette may have been negotiated with less distress for the family of the woman if their expectations of the course of the dementia and the role of the donepezil had been laid out, not just at point of diagnosis but at intervals throughout the illness thereby easing the them through the “change in agenda” from a medical to a social and palliative model of care. The cutbacks in social services will mean that expert navigation through the maze of access routes into support and care will be required more than ever. This vital part of commissioning must occur in parallel to developments in diagnostic and treatment facilities.
Conflict of interest: the author has received speaker fees from Lundbeck and Pfizer
1. Living well with dementia: A National Dementia Strategy. Department of Health 2009. http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_094051.pdf Accessed 10/05/14
2. http://alzheimers.org.uk/dementiamap Accessed 10/05/14
3. Greaves I, Jolley D. National Dementia Strategy: well intentioned - but how well founded and how well directed? British Journal of General Practice 2010; 60: 193–98
4. David Jolley, Esme Moniz-Cook. Memory clinics are all about stigma, not screening British Medical Journal 2009; 338: b860
5. Vernooij-Dassen M, Moniz-Cook E, Woods R, De Lepeleire J, et al. Factors affecting timely recognition and diagnosis of dementia across Europe: from awareness to stigma. International Journal of Geriatric Psychiatry 2005: 20: 377–86
6. Coombes R. Evidence lacking for memory clinics to tackle dementia, say critics. British Medical Journal 2009; 338: b550
7. Chapter 5 op.cit. Living well with dementia.
8. National Institute for Health and Clinical Excellence. Technology appraisal TA217. Donepezil, galantamine, rivastigmine and memantine for the treatment of Alzheimer’s disease. March 2011. http://egap.evidence.nhs.uk/ta217/section_4 Accessed 10/05/14
9. Holmes C, Wilkinson D. The efficacy of donepezil in the treatment of neuropsychiatric symptoms of Alzheimer disease. Neurology 2004; 62(2): 214–19
10. http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=147 Accessed 10/05/14
11. Daily Mail online October 7th 2010. http://www.dailymail.co.uk/health/article-1318360/Alzheimers-sufferers-finally-vital-2-50-drugs-banned-NICE.html Accessed 10/05/14
12. http://en.wikipedia.org/wiki/Hope_(painting) Accessed 10/05/14
13. Kitwood TM. Dementia Reconsidered. Open University Press, Buckingham 1997.
14. Ehrenrich B. Smile or Die. Granta Publications, London 2009
15. Op.cit http://egap.evidence.nhs.uk/ta217/section_1 Accessed 10/05/14
16. Winblad B, Wimo A et al. 3-year study of donepezil therapy in alzheimer’s disease:effects of early and continuous therapy. Dementia Geriatr Cogn Disord 2006; 21: 353–36
17. Peloscf i AJ, McNulty SA and Jackson GA. Role of cholinesterase inhibitors in dementia care needs rethinking. British Medical Journal 2006; 336: 491–93
18. Dementia; ethical issues. Nuffield Council on Bioethics October 2009. Paragraph 3.27. http://www.nuffieldbioethics.org/sites Accessed 10/05/14