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Diagnosing Subjective Cognitive Impairment: A Non-Dementia Related Context

For most people, older adulthood is associated with some decline in memory and in some aspects of cognitive function. These are age-related changes [1] that are widely expected, understood, and accepted by the general public. Some individuals, however, experience changes that they perceive as extending beyond that expected as part of normal aging. Such a ‘feeling’ or ‘sense’ that something is wrong can be hard to describe to family, friends, and clinicians and although an individual’s perceived changes in memory and cognition can be corroborated and confirmed by formal objective testing and from the reports of others [2] and diagnosed as mild cognitive impairment or dementia, formal examination can also fail to reveal objective evidence of decline [3,4].

Individuals with perceived changes in memory and cognition in the absence of objective evidence are commonly given a ‘diagnosis’ of subjective cognitive decline (SCD) [3]. As evidence increasingly reveals SCD as a risk factor for the development of dementia, particularly Alzheimer’s disease (AD) [4-7] and a stage in a neurodegenerative disease potentially suitable for interventional strategies, research and clinical priority has focused on investigating the relationship between SCD and the development of dementia.

The emphasis on the relationship between SCD and the development of dementia has, however, tended to overshadow the fact that SCD is etiologically heterogeneous and that for only a proportion of individuals does it represent a prodromal stage of dementia. Causes are varied and include sleep disorders, depression, psychiatric conditions, neurologic and medical disorders, substance use, and medication and can be related to personality type [8]. There are also people for whom etiology cannot be determined; this is evinced from research studies and clinical investigations in which participants with SCD have met exclusion criteria for known potential causes of SCD but failed to develop dementia. Another factor receiving little attention is the propensity of SCD to diminish and cease to exist in some cases [9].

Another potentially important but relatively sparsely investigated issue, is the potential for SCD, irrespective of etiology, to inflict significant detrimental effects upon well-being, active aging, quality of life resulting in individual, social, financial, and public concern. Related to this issue, the question I want to raise is whether the emphasis on the relationship between SCD and dementia could actually dissuade individuals from seeking clinical investigation of perceived changes in memory and cognition. In addition to the ‘worried well’ (those who might fit the criteria for SCD in the absence of known etiology for example) are individuals too afraid to initiate clinical investigation for fear of discovering incipient dementia despite the fact that the cause may be treatable.

In a recent paper, Mendonça et al. [10] suggested ‘…care should be taken not to overemphasize SCCs (subjective cognitive complaints). Facing the heterogeneous and ambiguous meaning of SCC, they should be looked at as symptoms and we should avoid classifying them as a condition. The creation of a diagnostic category for SCC could lead to an increase in futile diagnostic examination and testing. Participants would be exposed to unnecessary stress for a symptom that ultimately will not lead to any disorder or early death’ [page 6, column 2, paragraph 4].

Arguably, however, diagnostic examination and testing is not futile if it leads to the increased diagnosis of treatable causes of SCD. Can one assume that a diagnosis of SCD evokes greater stress than living with a disorder that can profoundly affect life quality and that could potentially, but unknown to the individual concerned, be treated? Surely this is about personal choice? It is clear that despite the current lack of a cure for dementia many individuals contact their general practitioner and actively request investigation of their perceived memory problems. Should they be refused this for fear of causing distress? Furthermore, significant numbers of individuals with SCD volunteer for research, part of which can involve full diagnostic profiling; again indicative in some individuals of a need to know more about their ‘condition’.

Many years ago, similar debates were held about the early diagnosis and screening of cancer, and what is clear today is that although the possibility of successful treatment has improved enormously and many screening opportunities are now available to facilitate the early diagnosis of cancer, not everyone chooses this option, and where screening programs are not available and cure less likely, individuals still seek diagnosis and information about their signs and symptoms. What is profoundly clear, therefore, is that individuals differ widely in their approach to disease, illness, early diagnosis, and the extent of information they wish to be imparted to them. What does appear to be important, and to empower many people, is freedom of choice.

This blog, of course, represents only a personal viewpoint. To see just how controversial and heterogeneous the concept of SCD is, then please read our recent supplementary issue of the Journal of Alzheimer's Disease: Subjective Cognitive Impairment (Guest Editors: Andrea Tales, Frank Jessen, Christopher Butler, Gordon Wilcock, Judith Phillips, Tony Bayer), Supplement 1, 2015

References
[1] Bishop NA, Lu T, Yankner BA (2010) Neural mechanisms of ageing and cognitive decline. Nature 464, 529-535.
[2] Caselli RJ, Chen K, Locke DE, Lee W, Roontiva A, Bandy D, Fleisher AS, Reiman EM (2014) Subjective cognitive decline: self and informant comparisons. Alzheimers Dement 10, 93-98.
[3] Jessen F, Amariglio RE, van Boxtel M, Breteler M, Ceccaldi M Chételat G, Dubois B, Dufouil C, Ellis KA, van der Flier WM, Glodzik L, van Harten AC, de Leon MJ, McHugh P, Mielke MM, Molinuevo JL, Mosconi L, Osorio RS, Perrotin A, Petersen RC, Rabin LA, Rami L, Reisberg B, Rentz DM, Sachdev PS, de la Sayette V, Saykin AJ, Scheltens P, Shulman MB, Slavin MJ, Sperling RA, Stewart R, Uspenskaya O, Vellas B, Visser PJ, Wagner M; Subjective Cognitive Decline Initiative (SCD-I) Working Group (2014) A conceptual framework for research on subjective cognitive decline in preclinical Alzheimer’s disease. Alzheimers Dement 10, 844-852.
[4] Mitchell AJ, Beaumont H, Ferguson D, Yadegarfer M, Stubbs B (2014) Risk of dementia and mild cognitive impairment in older people with subjective memory complaints: meta analysis. Acta Psychiatr Scand 130, 439-451.
[5] Rönnlund M, Sundström A, Adolfsson R, Nilsson L-G (2015) Subjective memory impairment in older adults predicts future dementia independent of baseline memory performance: Evidence from the Betula prospective cohort study. Alzheimers Dement, doi: 10.1016/j.jalz.2014.11.006.
[6] Blackburn DJ, Wakefield S, Shanks MF, Harkness K, Reuber M, Venneri A (2014) Memory difficulties are not always a sign of incipient dementia: a review of the possible causes of loss of memory efficiency. Br Med Bull 112, 71-81.
[7] Reisberg B, Schulman MB, Torossian C, Leng L, Zhu W (2010) Outcome over seven years of healthy adults with and without subjective cognitive impairment. Alzheimers Dement 6, 11-24.
[8] Studer J, Donati A, Popp J, von Gunten A (2014) Subjective cognitive decline in patients with mild cognitive impairment and healthy older adults: Association with personality traits. Geriatr Gerontol Int 14, 589-595.
[9] Canevelli M, Blasimme A, Vanacore N, Bruno G, Cesari M (2014) Issues about the use of subjective cognitive decline in Alzheimer’s disease research. Alzheimers Dement 10, 881-882.
[10] Mendonça MD, Alves L, Bugalho P (2015) From subjective cognitive complaints to dementia: Who is at risk: A systematic review. Am J Alzheimers Dis Other Dement, doi: 10.1177/1533317515592331.

Last comment on 16 October 2015 by Amy Jenkins, MSc

Comments

Submitted by Amy Jenkins, MSc on

In response to this valuable blog post, Professor Tales highlights the difficulties individuals face when trying to explain to clinicians about changes in their memory and cognition that are subjective to them, thus changes that are not recognised to be at an objective level [1]. With respect to patient-clinician interaction we have recently highlighted that it is not only the patient who finds it difficult to explain subjective changes but also there is great variability in how the clinician responds to such concerns [2]. In this study we distributed an email-based vignette to specialist memory clinics throughout Wales and England describing an individual experiencing subjective concerns and requested their feedback regarding how they would manage the case. Four main themes were identified, namely what their actions were dependent on (e.g. premorbid ability and educational background), and secondly what further investigations would be carried out (e.g. informant interview). The third theme highlighted the many different outcomes for such individuals (e.g. reassure and discharge if no problems were identified after further investigations), and the fourth theme represented the barriers that clinicians and their teams encounter (e.g. resources available). Very few acknowledged the term subjective cognitive impairment (SCI) suggesting a possible lack of importance placed on it; potentially a lack of resources available in order to manage it; or alternatively a possible lack of familiarity of it. Subsequently a follow-up study was designed whereby staff from specialist memory clinics within the UK were interviewed to further our understanding of why it is so rarely acknowledged. This study is currently ongoing, however it is evident that there is a great need to further clarify the understanding of subjective concerns not only for the individuals experiencing it but also for the clinical teams.

Characterising and clarifying subjective concerns could benefit both the patient and clinician by e.g. enabling the patient to understand and explain what they are experiencing, and it could improve the clinicians’ knowledge and skills required to validate a patients concerns. Furthermore, it could improve clinical teams’ management of such individuals and better prepare them for the service pressures predicted with the ageing population. For instance, there may be reversible causes for such subjective complaints e.g. depression, anxiety, the menopause, which could be highlighted and managed accordingly.  

Lastly, Professor Tails pointed out research on the increasing evidence of a link between subjective concerns and Alzheimer’s disease [3]. Characterising SCD specifically could potentially contribute to the identification of Alzheimer’s disease approximately 10-12 before the current formal diagnosis [1].

Surly all of the above warrant the area to be acknowledged and appreciated to be of significant importance?     

References

[1] Jessen F, Amariglio RE, van Boxtel M, Breteler M, Ceccaldi M Chételat G, Dubois B, Dufouil C, Ellis KA, van der Flier WM, Glodzik L, van Harten AC, de Leon MJ, McHugh P, Mielke MM, Molinuevo JL, Mosconi L, Osorio RS, Perrotin A, Petersen RC, Rabin LA, Rami L, Reisberg B, Rentz DM, Sachdev PS, de la Sayette V, Saykin AJ, Scheltens P, Shulman MB, Slavin MJ, Sperling RA, Stewart R, Uspenskaya O, Vellas B, Visser PJ, Wagner M; Subjective Cognitive Decline Initiative (SCD-I) Working Group (2014) A conceptual framework for research on subjective cognitive decline in preclinical Alzheimer’s disease. Alzheimers Dement 10, 844-852.

[2] Jenkins A, Tales A, Tree J, Bayer A (2015) Are we ready? The construct of subjective cognitive impairment and its utilization in clinical practice: A preliminary UK-based service evaluation. J Alzheimers Dis 48, S25-S31.

[3] Reisberg B, Schulman MB, Torossian C, Leng L, Zhu W (2010) Outcome over seven years of healthy adults with and without subjective cognitive impairment. Alzheimers Dement 6, 11-24.