Re: Political drive to screen for pre-dementia: not evidence based and ignores the harms of diagnosis
Le Couteur et al. (BMJ Sept 9) rightly and comprehensively address the risks and adverse effects of dementia screening and early and presymptomatic diagnoses of mild cognitive impairment (MCI) and early Alzheimer’s Disease without fulfilling dementia criteria. One of the basic problems here is that the borderline between dementia and mild cognitive impairment, when the cognitive decline does or does not interfere with the ability to function at work or at usual activities, is not clearly defined at all for clinical practice.1 This opens the route to a large inter-doctor variability, with a current tendency to diagnose dementia at a very early stage, also linked to the increasing capabilities in information handling needed to be able to function in modern society and average jobs.
Next, Le Couteur et al. warn about the results that such very early diagnoses of dementia may have on identity, potentially leading to feelings of loss, anger, uncertainty, and frustration. Additionally, we showed that the diagnosis of MCI also often has adverse effects.2 In our qualitative study consequences of MCI disclosure were that patients experienced anxiety and loss of self-confidence, feelings of irritation and anger towards others, resulting in abandoning social activities. Therefore, we still have to conclude that early diagnostic disclosure of pre-dementia and early dementia diagnoses is still far from being an evidence based practice.
For personalized medicine at this early stage, we first need to carefully identify what priorities people with memory complaints (or memory deficits recognized by others) have with regard to improvement of their health. This is most problematic for older people. For them, health should best be broadly defined, as most aged people already have other diseases or impairments, and can no longer aim for complete physical, mental and social wellbeing. Huber et al proposed to use health in the meaning of a better capacity to adapt and self manage in the face of social, physical, and emotional challenges, which fits better in the aging perspective. 3
Whether early diagnosis and diagnostic disclosure improves adaptation to minor cognitive decline related to aging or early Alzheimer pathology is highly personal. Due to referral bias, professionals in this field are likely to have opposing experience with these personal preferences. For example, an academic or tertiary memory clinic will see a selection of individuals who are highly motivated to receive an early diagnosis, and have no problem to undergo extensive testing. These will also be the individuals who perceive harm if they are not given an opportunity for early diagnosis. As a result, professionals in these settings may have a very different perception of patients’ personal preferences compared to those working in community settings. The risk is that these professionals extend these expectations to all patients referred to memory clinics, without verifying individual priorities.
Taking these personal priorities into account is a prerequisite for realizing added value in memory clinics, and evidence based diagnostics.4 One of the few short and structured methods specifically focusing on identifying priorities for health improvement in older subjects is the EASYcare approach.5 It consists of guided listening, needs assessment and shared goal setting. When the priority is set by an individual at knowing the cause of the minor but personally relevant cognitive impairment, investigating and disclosing an early diagnosis is appropriate. When this is taken into account, memory clinics may realize added value also in diagnostics at this stage, as some have already evidenced to do.6 The real added value of dementia diagnosis disclosure probably has to come from the first intervention in dementia care: offering information and psychosocial support in dealing with the consequences of dementia. However, such a personalized diagnostic and support process in memory clinics is still far from routine practice, though for many patients an urgent way to go.
1.McKhann GM, Knopman DS, Chertkow H et al. The diagnosis of dementia due to Alzheimer’s disease: recommendations from the national institute on Aging-Alzheimer’s association workgroups on diagnostic guidelines for Alzheimer’s disease. Alzheimer’s & Dementia 2011;7;263-269.
2.Joosten-Weyn Banningh L, Vernooij-Dassen M, Olde Rikkert MGM, Teunisse JP. Mild cognitive impairment: coping with an uncertain label.
Int J Geriatr Psychiatry. 2008;23:148-54.
3.Huber M, Knottnerus JA, Green L, et al. How should we define health? BMJ. 2011;343:d4163.
4.Ferrante di Ruffano L, Hyde CJ, McCaffery KJ, Bossuyt PM, Deeks JJ. Assessing the value of diagnostic tests: a framework for designing and evaluating trials. BMJ. 2012;344:e686
5.OldeRikkert, M G, Long JF, Philp I. Development and evidence base of a new efficient assessment instrument for international use by nurses in community settings with older people. Int J Nurs Stud 2013;50:1180-3
6.Wolfs CA, Dirksen CD, Kessels A, Severens JL, Verhey FR. Economic evaluation of an integrated diagnostic approach for psychogeriatric patients: results of a randomized controlled trial. Arch Gen Psychiatry. 2009;66:313-23
Competing interests:
None
24 September 2013
Marcel GM Olde Rikkert
Geriatrician
Jurgen Claassen, Myrra Vernooij-Dassen, Olga Meulenbroek, René Melis
Radbou Alzheimer Centre, Radboud University Nijmegen Medical Centre
Rapid Response:
Re: Political drive to screen for pre-dementia: not evidence based and ignores the harms of diagnosis
Le Couteur et al. (BMJ Sept 9) rightly and comprehensively address the risks and adverse effects of dementia screening and early and presymptomatic diagnoses of mild cognitive impairment (MCI) and early Alzheimer’s Disease without fulfilling dementia criteria. One of the basic problems here is that the borderline between dementia and mild cognitive impairment, when the cognitive decline does or does not interfere with the ability to function at work or at usual activities, is not clearly defined at all for clinical practice.1 This opens the route to a large inter-doctor variability, with a current tendency to diagnose dementia at a very early stage, also linked to the increasing capabilities in information handling needed to be able to function in modern society and average jobs.
Next, Le Couteur et al. warn about the results that such very early diagnoses of dementia may have on identity, potentially leading to feelings of loss, anger, uncertainty, and frustration. Additionally, we showed that the diagnosis of MCI also often has adverse effects.2 In our qualitative study consequences of MCI disclosure were that patients experienced anxiety and loss of self-confidence, feelings of irritation and anger towards others, resulting in abandoning social activities. Therefore, we still have to conclude that early diagnostic disclosure of pre-dementia and early dementia diagnoses is still far from being an evidence based practice.
For personalized medicine at this early stage, we first need to carefully identify what priorities people with memory complaints (or memory deficits recognized by others) have with regard to improvement of their health. This is most problematic for older people. For them, health should best be broadly defined, as most aged people already have other diseases or impairments, and can no longer aim for complete physical, mental and social wellbeing. Huber et al proposed to use health in the meaning of a better capacity to adapt and self manage in the face of social, physical, and emotional challenges, which fits better in the aging perspective. 3
Whether early diagnosis and diagnostic disclosure improves adaptation to minor cognitive decline related to aging or early Alzheimer pathology is highly personal. Due to referral bias, professionals in this field are likely to have opposing experience with these personal preferences. For example, an academic or tertiary memory clinic will see a selection of individuals who are highly motivated to receive an early diagnosis, and have no problem to undergo extensive testing. These will also be the individuals who perceive harm if they are not given an opportunity for early diagnosis. As a result, professionals in these settings may have a very different perception of patients’ personal preferences compared to those working in community settings. The risk is that these professionals extend these expectations to all patients referred to memory clinics, without verifying individual priorities.
Taking these personal priorities into account is a prerequisite for realizing added value in memory clinics, and evidence based diagnostics.4 One of the few short and structured methods specifically focusing on identifying priorities for health improvement in older subjects is the EASYcare approach.5 It consists of guided listening, needs assessment and shared goal setting. When the priority is set by an individual at knowing the cause of the minor but personally relevant cognitive impairment, investigating and disclosing an early diagnosis is appropriate. When this is taken into account, memory clinics may realize added value also in diagnostics at this stage, as some have already evidenced to do.6 The real added value of dementia diagnosis disclosure probably has to come from the first intervention in dementia care: offering information and psychosocial support in dealing with the consequences of dementia. However, such a personalized diagnostic and support process in memory clinics is still far from routine practice, though for many patients an urgent way to go.
1.McKhann GM, Knopman DS, Chertkow H et al. The diagnosis of dementia due to Alzheimer’s disease: recommendations from the national institute on Aging-Alzheimer’s association workgroups on diagnostic guidelines for Alzheimer’s disease. Alzheimer’s & Dementia 2011;7;263-269.
2.Joosten-Weyn Banningh L, Vernooij-Dassen M, Olde Rikkert MGM, Teunisse JP. Mild cognitive impairment: coping with an uncertain label.
Int J Geriatr Psychiatry. 2008;23:148-54.
3.Huber M, Knottnerus JA, Green L, et al. How should we define health? BMJ. 2011;343:d4163.
4.Ferrante di Ruffano L, Hyde CJ, McCaffery KJ, Bossuyt PM, Deeks JJ. Assessing the value of diagnostic tests: a framework for designing and evaluating trials. BMJ. 2012;344:e686
5.OldeRikkert, M G, Long JF, Philp I. Development and evidence base of a new efficient assessment instrument for international use by nurses in community settings with older people. Int J Nurs Stud 2013;50:1180-3
6.Wolfs CA, Dirksen CD, Kessels A, Severens JL, Verhey FR. Economic evaluation of an integrated diagnostic approach for psychogeriatric patients: results of a randomized controlled trial. Arch Gen Psychiatry. 2009;66:313-23
Competing interests: None