Dementia is a broad term used to describe a decline in mental abilities that is severe enough to interfere with daily life. The most common symptoms of dementia include memory loss, difficulty communicating, disorientation, confusion, poor judgment, and changes in mood and personality. One of the key questions surrounding dementia is whether someone with dementia understands that they are experiencing these symptoms and challenges. Do they have some level of awareness of their own confusion and cognitive deficits? Or has the disease fully robbed them of this kind of insight?
The spectrum of awareness in dementia
Research shows that awareness can vary greatly in individuals with dementia. Some people, especially in the earlier stages, have strong insight into their condition. They notice their lapses in memory and thinking abilities and can become frustrated, depressed or anxious as a result. However, many others display varying levels of “anosognosia”, a lack of awareness of their deficits. The level of insight typically diminishes as the disease progresses.
Several factors influence awareness in dementia, including:
Type of dementia
The type of dementia impacts levels of awareness. For example, people with frontotemporal dementia (FTD) often experience personality and behavior changes but retain strong awareness of their condition early on. In contrast, people with Alzheimer’s disease more readily lose insight.
Severity of deficits
Mild dementia often correlates with better awareness. As symptoms worsen, awareness decreases. However, even mild impairment can limit insight in some individuals.
Brain regions affected
Research links awareness to the functioning of specific brain regions like the frontal and right temporoparietal cortices. Damage to these areas can diminish insight.
Coping style
Some individuals use denial as a coping mechanism. This can mask their level of awareness.
Neuropsychiatric symptoms
Apathy, lack of initiative and disinhibition resulting from dementia reduce awareness for some people.
So in summary, awareness exists on a spectrum in dementia. Mild cases often correlate with better insight. But as the disease progresses, lack of awareness becomes more prominent. Specific types of dementia, greater deficits, impacted brain regions, coping tendencies and other symptoms also influence an individual’s level of understanding of their condition.
Assessing awareness in dementia patients
Clinicians use various methods to assess self-awareness in people with dementia. Common approaches include:
Patient interviews
Asking open-ended questions allows clinicians to explore patients’ perceptions of their functioning in everyday situations. It provides insight into their level of awareness.
Discrepancy scores
Comparing patients’ self-ratings to informant ratings often reveals discrepancies that reflect poor awareness. Informants who know the patient well provide additional ratings of the person’s cognitive and functional status.
Structured questionnaires
Questionnaires like the Anosognosia Questionnaire-Dementia assess awareness across various domains through a series of patient and informant questions.
Neuropsychological tests
Comparing patient test performance to their predictions of how they will do can demonstrate awareness deficits. Under-estimating difficulties suggests poor insight.
Functional assessments
Observing patients completing everyday tasks, like making a cup of tea, while asking them to evaluate their performance helps gauge accuracy of awareness.
Combing several methods allows for a more complete evaluation of awareness than any single approach. This provides clinicians valuable information to help dementia patients and their families.
Impact of impaired awareness in dementia
Impaired insight in dementia carries important implications:
Inability to report symptoms
Dementia reduces patients’ ability to accurately describe their cognitive, behavioral and functional challenges. This makes diagnosis and monitoring progression more difficult.
Reduced treatment adherence
Lack of awareness leads some individuals to underestimate their difficulties. As a result, they may not comply with recommended therapies, services and safety precautions.
Worse function
Poor insight correlates with worse performance on tasks of daily living and more rapid functional decline over time.
Greater caregiver burden
When patients lack awareness it can increase demands on caregivers. Misunderstandings, resistance to help and impaired abilities strain caregiver relationships and mental health.
Safety risks
Dementia patients with unawareness of their condition may attempt tasks they are no longer capable of, like driving or managing finances and medications. This raises safety concerns.
Institutionalization
Impaired insight increases the chances someone with dementia requires earlier placement in a residential care facility because they are unable to compensate for their deficits.
So damaged awareness takes a major toll on people with dementia and their loved ones. It makes caring for their needs much more challenging.
Strategies for managing poor awareness in dementia
Despite the difficulties it causes, lack of insight in dementia patients is not an unsolvable problem. Clinicians, caregivers and family members can employ strategies to help overcome these challenges:
Rule out treatable causes
In some cases, lack of awareness results from causes like depression, delirium or medication side effects. Treating these may improve insight.
Provide cues during tasks
Gentle cueing can help patients recognize mistakes and compensate during daily activities without damaging self-esteem.
Repeat explanations
Patience and repeatedly explaining deficits in a compassionate manner helps some dementia patients gain better understanding of their condition.
Suggest aides
Proposing memory aids and environmental cues like calendars, to-do lists and signs can prompt awareness of difficulties.
Engage feelings
Discussing patients’ feelings about losses rather than facts may promote acceptance and adaptation.
Shift focus away from insight
For those with severe unawareness, directing energies to adapting the environment and providing needed assistance is often more productive than pursuing understanding.
Support caregivers
Counseling, respite care and support groups can help caregivers manage the strains of dementia patients’ lack of awareness and develop effective coping strategies.
Secure patient safety
Preventing at-risk behaviors through supervision, surveillance tools and access restrictions helps protect patients with impaired judgment and insight.
Adjust expectations
Accepting that awareness will decline as dementia progresses allows families to focus on making the most of remaining abilities.
While impaired insight presents significant challenges in dementia care, a combination of patient-focused interventions, environmental adaptations, caregiver support and safety precautions can help maximize function and quality of life.
The death certificate -awareness at end of life in dementia
The degree to which dementia patients retain awareness at the very end of life has significance for clinical care and decision making. This includes determining if lack of food and water hastens death in end stage dementia. Some researchers have examined this by studying causes of death recorded on death certificates for people with dementia.
| Study | Findings on awareness and death certificates |
|---|---|
| Mitchell et al, 2004 | 31% of advanced dementia patients had eating/drinking difficulties listed on the death certificate as contributing to death, suggesting some retained awareness of hunger and thirst. |
| Van der Steen et al, 2006 | Aspiration pneumonia and eating and drinking difficulties were commonly cited on death certificates, occurring in 39% and 15% of cases respectively. |
| Van der Steen et al, 2009 | Difficulties with eating and drinking were less frequent causes of death in patients with worse cognitive impairment, indicating they likely had less awareness. |
These studies imply a substantial minority of individuals with end stage dementia retain some awareness of discomfort from lack of food or fluids. However, awareness appears to decline as cognition worsens nearer to death. More research is still needed on this complex issue.
Conclusion
Self-awareness exists on a spectrum in patients with dementia. Mild deficits often correspond to moderate insight into one’s condition. But as dementia progresses, lack of awareness tends to increase. Specific types of dementia, greater cognitive impairment, impacted brain regions, personality factors, neuropsychiatric symptoms and individual coping styles also influence level of insight. Impaired awareness negatively impacts patients’ functioning, treatment participation, and caregiver burden. But various behavioral strategies, aids, education, safety precautions and environmental adaptations can help overcome its challenges. Some evidence also suggests a portion of end stage dementia patients retain awareness of discomfort which has implications for clinical care. Overall, an individualized approach focused on maximizing quality of life remains the recommended response to impaired insight in dementia.