Who am I? Self-awareness in dementia

Sep 3, 2018

Who am I? Self-awareness in dementia

Who am I? Self-awareness in dementia

Posted in : All, Living with dementia, Research on by : Giulia Melchiorre

Who am I? What am I good at? Where do my weaknesses lie? Those are just some of the questions that self-awareness helps us answer. We all have a view of ourselves but how others view us can differ significantly from this. Accurate self-awareness is important for everyday functioning, because it allows us to match our tasks and goals to our actual abilities. This can prevent possible harm to self and others.

Self-awareness in dementia

In diseases that affect the brain, like dementia, people often have varying abilities to recognise their own impairments (i.e. impaired self-awareness). Functional impairments can include but are not limited to daily living activities, cognition (i.e. thinking), emotional control, interpersonal abilities and personality. Which of these are affected depends on the disease and which areas of the brain are have been compromised

The anatomical basis of self-awareness is not fully understood but it is thought that both frontal and parietal structures form a larger circuit in the brain that underlies this function (see the image below where these areas are highlighted):

Different types of dementia affect different parts of the brain.  Typically in Alzheimer’s disease the parietal lobes are damaged earlier and more severely, as the disease tends to start at the back of the brain and work forward. In Frontotemporal dementia the disease predominantly affects frontal lobe structures, whereas the parietal cortex remains comparatively intact. If and how self-awareness is affected in these different types of dementia depends on two main factors:

  1. The type of dementia because this determines which brain areas are affected first
  2. The stage of the disease because this determines how much of the brain is affected

Self-awareness in research studies is often measured by comparing the self-rating of the person with dementia to that of a caregiver or researcher. Using this technique, researchers have found the following:

  • People with Alzheimer’s disease tend to maintain socially appropriate behaviour in early stages and can be good at covering up memory losses, showing preserved insight. Research has shown that people with Alzheimer’s disease show worsened insight into their cognitive deficits as the dementia becomes more severe and the disease spreads to involve the frontal area of the frontal lobe (frontal cortex).
  • On the other hand, Frontotemporal dementia (FTD) is often defined by early behaviour changes (e.g. disinhibition, impulsive or inappropriate behaviour, difficulty in controlling behaviour and other large deviations from original personality). People tend to have little insight or self-awareness regarding these changes. A study showed that people without disease tend to slightly underestimate their positive qualities, and overestimate their negative ones. People with Frontotemporal dementia tend to do the opposite.
  • People with the Primary progressive aphasia (PPA) variant of dementia typically have more accurate insights into their problems. Although people with semantic variant PPA have relatively accurate awareness of their language impairment, they sometimes show slightly impaired self-awareness of their social-behavioural changes. This can change as the disease progresses

Research has shown that when people gave an inaccurate estimate of their abilities, this tended to reflect their personality prior to disease onset. This means that in some of the functions people were unable to update information on themselves after disease onset

What does it mean for everyday life?

Being unable to accurately assess ourselves has many implications for day-to-day living. Some of these include

  • Changes in behaviour, e.g. emotionally cold and introverted behaviours can become more dominant (often the case in Frontotemporal dementia) or a person becomes more unsure of themselves (often the case in Alzheimer’s disease)
  • An inability to understand our own limitations, e.g. driving even though we may no longer be able to drive or attempting to manage finances
  • Refusing to accept help in the form of care or treatments because of a lack of insight

What should I do?

It is important to understand that how you view a person with dementia and how they view themselves can be completely different. This does not mean that they have necessarily forgotten who they are or have become a different person; they are simply not as aware of how the disease is changing them. Understanding how dementia affects the brain is a first step to better understanding how the person with dementia is being affected. It has been pointed out that although these biological changes described in this blog play an important role in self-awareness, physical and social interactions are also key. You should therefore never infantilise someone with dementia or treat them as incapable, but instead always treat them with respect and dignity.


All information in this article is based on published research studies. The studies included are listed below:


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