Dementia is a broad term used to describe a variety of symptoms associated with a decline in memory, problem-solving and other cognitive skills that affect a person’s ability to perform everyday activities. Alzheimer’s disease is the most common cause of dementia, accounting for 60-80% of cases. Other types include vascular dementia, dementia with Lewy bodies and frontotemporal dementia. According to the World Health Organization, around 50 million people worldwide are living with dementia in 2022. This number is expected to grow to 82 million by 2030 and 152 million by 2050 as the global population ages.
Dementia is a progressive condition, meaning symptoms start slowly and gradually worsen over time. The early stage of dementia is often overlooked because the onset is gradual and early symptoms are subtle. Many friends and family members will notice a person with early stage dementia struggling with memory, communication and focus long before a diagnosis is made. As the disease progresses, decline in memory and thinking skills becomes more pronounced and begin to interfere with daily life. In the later stages of dementia, individuals lose their ability to respond to their environment, carry on a conversation and, eventually, control movement. They may still say words and phrases, but communicating pain becomes difficult.
Do patients know they have dementia?
Whether a dementia patient is aware of their diagnosis depends on the stage of the disease. In the early stages of the condition, most people are aware that something is wrong even if they don’t know what exactly is happening. They may recognize they are having increasing trouble remembering things, keeping track of details, following conversations or finding the right words. At this point, the individual still has insight into their condition.
As dementia progresses to the moderate stage, self-awareness fades. The parts of the brain responsible for judgment and self-reflection shrink or become damaged. While they may recognize their capabilities aren’t what they used to be, they are unable to accurately judge the extent of their own cognitive decline. Their condition may be apparent to loved ones, but the patient can no longer evaluate their own behaviors and abilities realistically.
In the later stages of dementia, awareness of the condition is lost entirely. Significant sections of the brain have atrophied beyond function. As dementia reaches its final stages, the individual loses touch with reality and is unaware of their surroundings, abilities or behavior.
Impact of diagnosis on awareness
Receiving a diagnosis can influence a dementia patient’s self-awareness of their condition. In the early stages of the disease, being diagnosed empowers the individual to understand what is happening to them. It allows them to seek information, treatment and support services while they are still capable of participating in their own care planning.
However, patients do not always receive an early diagnosis. According to the Alzheimer’s Association, only 45% of seniors with Alzheimer’s or their caregivers were aware of the diagnosis. The rate drops to 20% in the early stages of the disease. There are several reasons why dementia often goes undiagnosed:
- Onset is gradual, so early symptoms are dismissed
- Stigma surrounding dementia and cognitive decline
- Normal aging stereotypesdiscounting mental changes
- Physicians may be reluctant to diagnose without a biological marker test
- Lack of understanding regarding services available after diagnosis
Without a diagnosis, an individual may vaguely recognize their mental faculties are declining but lack insight into the specific problem or how fast it is progressing. A diagnosis helps provide answers and resources to better understand and manage what is happening.
Insight and awareness in different types of dementia
The degree of insight and self-awareness of their condition can depend in part on the type of dementia the individual has.
Alzheimer’s disease
In Alzheimer’s disease, developing insight into their diagnosis depends greatly on the stage at which the diagnosis occurs. If diagnosed early, the individual maintains awareness much longer into the disease progression. Loss of insight typically coincides with progression to moderate dementia.
Vascular dementia
Vascular dementia involves impaired blood flow to the brain resulting in damage to brain tissue. Symptoms often appear suddenly after strokes rather than gradually declining over time. Patients may maintain higher self-awareness early on but can experience rapid stepwise declines with additional strokes.
Lewy body dementia
Lewy body dementia includes abnormal protein deposits (Lewy bodies) forming in areas of the brain that affect cognition and movement. Insight may vary as patients experience fluctuations in lucidity characteristic of this type of dementia. They may be very aware of their condition at times and much less so at other times.
Frontotemporal dementia
In frontotemporal dementia, parts of the brain responsible for personality, behavior and language are damaged first. Patients often lack insight early on due to the impact on judgment, self-awareness and inhibition.
Conclusion
Dementia patients’ understanding of their own condition depends greatly on the stage of the disease and whether or not they have received a diagnosis. In early stages, most individuals have partial insight that cognitive skills are declining but may not understand the details or progression. Moderate dementia robs patients of the ability to accurately evaluate their own condition. In late stage dementia, awareness is entirely lost. While the pathology varies between dementia types, diagnosis early in the disease process can help preserve insight and awareness the longest. Understanding how insight evolves through the stages of dementia can help patients, families and physicians better navigate the challenges of the disease.