“Is your family worried about your forgetfulness?” Contrasting perceptions in the context of a dementia diagnosis

aaRachel Buckley is an Alzheimer’s Australia Postdoctoral Fellow, in the Melbourne School of Psychological Sciences at the University of Melbourne. Her study on mild cognitive impairment is published in the current issue of Age & Ageing. She tweets at @bucklr01

It is very common and quite normal to forget where you left your glasses. Although this might happen to you with relative and increasing frequency, concerns of this nature do not necessarily signal the starting point of a dementia. It is no secret that when it comes to your perceptions of yourself, an outsider’s perspective – particularly from someone who knows you well -can be very informative. When considering your concerns of your own forgetfulness, this is particularly the case.

Diagnostic criteria for mild cognitive impairment (the clinical transitional period that exists prior to a diagnosis of dementia) includes the expression of a memory concern by either the patient or their family. Researchers have recently found that a mutual concern signals the greatest likelihood that an individual will show poorer memory function over time compared to concerns made solely by the individual or a significant other (Gifford et al., 2015).

Furthermore, a large longitudinal study that followed participants for almost a decade, found that for those participants who received a diagnosis of dementia during the study, a combined concern from both the individual and families (usually the spouse) early on was a better predictor than a sole concern from the individual (Rönnlund et al., 2015).

In addition, family-reported concerns have been found to be more closely related to actual memory change than self-reported concerns (Rueda et al., 2014), suggesting that individuals may not have an entirely objective perspective on their day-to-day brain function. This is supported by evidence that self-reported concerns are often driven by negative mood, and not necessarily related to performance on pen-and-paper memory tasks.

As such, it seems that a mutual concern may signal the strongest evidence of the presence of an encroaching dementia. It is important to note, however, that the above findings are dependent on what diagnosis the individual has at the time (i.e. healthy, mild cognitive impairment or dementia). It seems that as the diagnosis changes, so too does the relationship between self and family-reported concerns.

Our current findings in Age and Ageing, and those of others, reveal a very interesting pattern between self and family-reported concerns. Mutual concerns are very likely when the individual is cognitively healthy, suggesting that both parties share a similar ‘reality’ in relation to the individuals’ level of forgetfulness (however, keep in mind what was said above). This mutual feeling of concern in healthy individuals is followed by increasing discordance as the individual progresses towards a dementia.

As individuals begin to exhibit more and more memory loss, they characteristically appear to become disproportionately less concerned about their memory function. By the time a dementia diagnosis has been made, it is not uncommon for patients to express very little, if any, concern in contrast with very grave concerns made by the family. It is this pattern of harmonizing and contrasting concerns between the individual and their families that can provide very important information about the potential presence of a dementia, and can potentially signal the very earliest signs of dementia beyond what can be found out simply beyond hearing one side of the story.

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