Mild Cognitive Impairment: A Qualitative Exploration of Older Adult's Understanding, Concerns and Expectations

Background: With an increasing drive to diagnose dementia, more people with mild cognitive impairment (MCI) will be identified. It is not known how best to manage those with MCI. Aims: To examine older people’s understanding of MCI, explore attitudes towards disclosure of a hypothetical diagnosis of MCI and the experience of receiving a diagnosis of MCI. Methods: Qualitative study using thematic analysis of in depth, semi-structured interviews in cognitively intact older people (n7) and those following a diagnosis of MCI (n6). Results: In a hypothetical scenario older people expressed a wish for the honest disclosure of a diagnosis of MCI. Although participants thought that memory loss in old age is expected and may be preventable, they described associated stigma. Patients with MCI who prompted their own referral for memory assessment acknowledged and better understood the condition. Those who acknowledged MCI displayed both practical and emotional coping strategies. Conclusions: Clinical pathways for MCI should be patient centered and reflect the views and experience of older service users. ABBREVIATIONS MCI: Mild Cognitive Impairment; AD: Alzheimer’s Disease INTRODUCTION Mild cognitive impairment (MCI) has been defined as “cognitive decline greater than that expected for an individual’s age and education level but which does not interfere notably with activities of daily life” [1]. Debate exists regarding the exact definition and classification of MCI [1-3]. This lack of consensus results in difficulty estimating prevalence and uncertainty regarding ‘disease’ trajectory [1,4-6]. The clinical course of MCI is uncertain. Population-based studies report that 3-19% of 65 year olds may have MCI [1] with annual ‘conversion’ rates from ‘amnestic’ MCI to Alzheimer’s disease (AD) ranging widely from 10-47%. [1,2] Conversely, other literature suggests that as many as 44% of those diagnosed with MCI may return to a state of normal cognition at one year [3]. This raises questions about the clinical significance of MCI, whether MCI should be diagnosed at all, and if diagnosed, how such a diagnosis should be communicated to patients [2,7-9]. Regardless of this controversy, it is likely that increasing numbers of people with MCI will be identified worldwide as ageing populations carry with it the increased prevalence of cognitive decline. In the UK as an example, there are various reasons for expecting an increase identification of MCI due to a number of national policies and drivers. These include the National Dementia Strategy, [10] which emphasizes the importance of early diagnosis of dementia, [11] and the NICE delirium guidelines that promote assessment for dementia in those with persistent symptoms of delirium [12]. Furthermore the Commissioning for Quality and Innovation (CQUIN) targets attach a financial motivation for hospital trusts to screen for cognitive impairment [13] and financial incentives are being offered to general practitioners for every dementia diagnosis Central Meilak et al. (2016) Email: Ann Psychiatry Ment Health 4(1): 1054 (2016) 2/8 made [14]. Such pro-active case finding for dementia means it is likely that an increasing number of people with MCI will be identified. Despite this projected increase in the identification of people with MCI, there is no clear guidance regarding the necessity for follow up or repeat cognitive assessment. As the potential psychological and economic burden related to a diagnosis of MCI remains unclear, health care professionals continue to debate the appropriateness of this political drive to screen for ‘pre’ and early dementia [15,16]. A better understanding of whether patients want to know about MCI would inform the discussion about whether diagnoses should be actively sought, how information should be communicated and what the pathway of care following a diagnosis of MCI should look like. Overall, qualitative studies from various countries suggest that the outcome of disclosure of MCI is negative, with participants reporting confusion about the diagnosis, and burden associated with the label of MCI [1722]. It is potentially possible that studies conducted in different countries may yield different results that are contributable to different social ‘norms’. The extent to which these findings can be translated from one country to another is uncertain. In contrast to the qualitative studies mentioned, one questionnaire based study reported that 98% of cognitively intact participants would want to know if they had MCI, [23] however; the conclusions from this are limited due to the study’s methodology. Given the move towards active engagement and involvement of patients in their healthcare [24,25] and the increasing frequency with which health care professionals encounter those with MCI, this qualitative exploration of the views of older people was undertaken to address the following objectives; 1. To examine the understanding of MCI in older people 2. To explore attitudes towards disclosure of a hypothetical diagnosis of MCI in older people 3. To explore the experience receiving a diagnosis of MCI in older people 4. To examine coping strategies and concerns following diagnosis of MCI in older people MATERIALS AND METHODS A qualitative study using semi-structured individual interviews and thematic analysis was undertaken. The study was approved by the NRES committee (Bromley) London (12/ LO/0962). Participants Purposive sampling [26] was used to recruit two groups of participants. Participants recruited into group 1 were interviewed to examine their understanding of MCI, explore their attitudes towards disclosure of a hypothetical diagnosis of MCI and how they would wish for this to be communicated. Those recruited into group 2 were interviewed to explore their experience of receiving the diagnosis of MCI, their coping strategies and their ongoing concerns. Inclusion criteria for group 1: Aged over 65 years Assessed to be cognitively intact by a geriatrician Inclusion criteria for group 2: