Dementia is a devastating condition that affects memory, thinking, and behavior. It is caused by damage to brain cells and leads to a decline in cognitive abilities. Dementia is not a normal part of aging. One of the most heartbreaking aspects of dementia is that in some cases, the person living with it is unaware of their declining condition.
What is dementia?
Dementia is not a single disease, but rather a group of symptoms caused by various diseases and conditions. The most common types of dementia are:
- Alzheimer’s disease – Accounts for 60-80% of dementia cases. Caused by plaques and tangles in the brain.
- Vascular dementia – Caused by damage to blood vessels in the brain
- Lewy body dementia – Caused by Lewy bodies forming in nerve cells in the brain
- Frontotemporal dementia – Damage to the frontal and temporal lobes of the brain
Regardless of the specific cause, dementia causes a progressive decline in mental abilities such as:
- Memory loss
- Difficulty communicating
- Poor judgment
- Inability to focus or pay attention
- Difficulty with visual perceptions
These symptoms interfere with daily living activities and get worse over time. There is currently no cure for most types of dementia.
Do people with dementia know they have it?
One of the cruel ironies of dementia is that in some cases, the person with dementia is unaware of their declining condition. This is known as anosognosia or lack of insight. It occurs because the parts of the brain that would normally enable awareness and evaluation of changes in one’s abilities are damaged by dementia.
Studies show that:
- Up to 81% of people with mild Alzheimer’s disease have poor awareness of their symptoms.
- Lack of insight is more common in frontotemporal dementia than in Alzheimer’s.
- People in early stages of dementia tend to have better awareness of their deficits.
As the disease progresses, insight often declines. There are several reasons why people may be unaware they have dementia:
- The part of the brain responsible for judgment and self-evaluation is damaged.
- They do not receive feedback from friends and family about cognitive issues.
- The changes are gradual, so they chalk it up to normal aging.
- They experience memory loss but confuse it for everyday forgetfulness.
Stages of dementia awareness
Studies suggest that awareness changes through the different stages of dementia:
| Stage | Awareness Level |
|---|---|
| Mild dementia | Fairly accurate awareness of deficits |
| Moderate dementia | Fluctuating awareness and denial emerging |
| Severe dementia | Very poor insight into deficits |
In mild dementia, damage is limited so the person maintains some awareness. As more brain damage occurs, the ability to accurately evaluate changes diminishes. In severe dementia, significant damage leaves the person unable to comprehend their issues.
Why does lack of insight matter?
Impaired insight has significant consequences for people with dementia and their loved ones:
- Safety risks – Cannot comprehend risks and abilities leading to accidents like wandering or falls.
- Non-compliance – May disregard medical advice or treatment recommendations.
- Relationships – Denial of problems strains family relationships and caregiving.
- Progression – Lack of awareness prevents seeking help and intervention.
Caregivers often find themselves in challenging situations trying to care for someone who does not believe they need assistance. This can lead to conflicts and difficulties ensuring safety and well-being.
Improving insight in dementia
While lack of insight is common in dementia, some strategies may help improve awareness:
- Provide frequent, respectful feedback on problematic behaviors.
- Suggest a medical exam to evaluate memory and thinking issues.
- Reminisce about past abilities versus current difficulties.
- Involve the person in safety precautions like removing car keys.
- Enlist other friends and family to express polite concern.
- Schedule appointments with doctors and enlist their help.
Medical professionals can also evaluate and address potential underlying illness, sensory deficits, infections, pain, medications, or mental health issues that may be influencing awareness.
How to cope with anosognosia
Coping with anosognosia in a loved one with dementia can be very difficult. Some recommendations include:
- Join a support group – Connect with others facing similar challenges.
- Try counseling – Work through your feelings with a therapist.
- Discuss strategies with the medical team – Ask doctors, nurses and social workers for advice.
- Set small goals – Celebrate little successes and focus on what the person can still do.
- Avoid arguing – Limit corrections and present information positively.
- Enlist help – Have others like friends and family express concern.
- Use white lies – Fibbing to avoid conflict can smooth challenges temporarily.
- Practice patience daily – Anosognosia is biologically driven, not intentional.
While there are no easy answers, working closely with the medical team, trying counseling, joining a support group and developing coping strategies can help families manage.
The takeaway on anosognosia
Anosognosia, or denial of deficits, is a common symptom of dementia. It is driven by neurological damage, not willful ignorance. As dementia progresses, awareness often declines. Impaired insight puts people at significant safety risks and strains family relationships. While challenging to manage, using respectful strategies and seeking support can help families cope. Anosognosia is part of the disease and families need information, resources and empathy.
References
- Dementia Australia. “Anosognosia and dementia.” https://www.dementia.org.au/anosognosia
- Alzheimer’s Association. “Anosognosia.” https://www.alz.org/careplanning/downloads/alz_careplan_anosognosia.pdf
- Miyoshi, E. “Anosognosia in mild Alzheimer’s disease: Relationship to activation deficits of the self-appraisal system.” https://pubmed.ncbi.nlm.nih.gov/30976596/
- Banks, S. “The missing link – Self-monitoring in people with dementia.” https://www.caregiver.org/resource/missing-link-self-monitoring-people-dementia/
- McDonald, A. “Interventions to improve insight in people with dementia: A systematic review.” https://pubmed.ncbi.nlm.nih.gov/32653701/