Do People With Dementia Know They Have It? How Dementia Affects Self-Awareness
Dementia can be a serious and potentially debilitating health condition. It is an umbrella term for several diseases involving cognitive decline that tend to be most common in adults over the age of 65, although some forms of dementia can affect younger people. Some individuals with dementia may not be aware of their condition. This can be referred to as anosognosia or a lack of insight. In other cases, individuals may be in denial about their situation. Those with dementia and their caregivers may benefit from working with a therapist who can help them understand and effectively deal with the diagnosis.
Dementia types and symptoms
Alzheimer’s disease is usually the most common cause of dementia and perhaps the most well-known variant of the condition. In some cases, a person’s medical history may explain the cause of their dementia symptoms. For example, with vascular dementia, dementia symptoms are usually caused by a cardiovascular event like a stroke or brain hemorrhage.
Other forms of dementia include Lewy body dementia, frontotemporal dementia, Huntington’s disease, and Parkinson’s disease dementia.
Symptoms of dementia can vary according to the specific cause of the condition, but they often include the following:
- Memory problems
- Difficulties with language, speech, and other forms of communication
- Inability to solve problems or follow steps
- Saying or doing the same things over and over
- Mental health challenges, such as anxiety or depression
As the disease progresses, dementia patients may require full-time supervision and care, as they may no longer be capable of basic functioning.
Do people with dementia know about their condition?
In later stages of the disease, though, patients may frequently lose awareness of their condition. If a person with dementia cannot acknowledge or recognize their symptoms, health care providers will typically label this symptom as a “lack of insight” or use the more technical term “anosognosia.” A lack of insight can be a symptom of severe mental illness, and it typically prevents the person from recognizing that any of their attitudes or behaviors are unusual, concerning, or destructive.
A lack of insight can be associated with a number of mental health conditions:
- Schizophrenia
- Bipolar disorder
- Some personality disorders, including schizotypal personality disorder and narcissistic personality disorder
- Eating disorders, particularly anorexia nervosa
- Neurocognitive disorders that cause common symptoms of dementia, including Alzheimer’s disease, vascular dementia, and Lewy body dementia
Anosognosia can be problematic because if a person does not believe there is anything wrong, they may refuse to take steps to address their symptoms, like engaging in therapeutic treatment or taking certain kinds of medication. With dementia, a lack of insight can result in tension between people with dementia and their family members, loved ones, or medical providers.
A lack of insight for patients with a dementia diagnosis may also lead to potential danger for themselves or others. A person with a lack of insight about their memory loss, impaired cognitive function, mood swings, and other symptoms of dementia may:
- Continue to insist they can drive their car, even if their reaction time is impaired to the point where it would be unsafe for them to operate a motor vehicle
- Become lost in their own neighborhood or while out on familiar routes, potentially wandering to a place where no one knows them or where they have never been before
- Be financially taken advantage of by scammers or an unscrupulous friend or family member
What causes a lack of insight?
Lack of insight has several potential causes across the range of mental illnesses it can impact. Causes of a lack of insight for dementia vary but are often related to damage to cells in certain areas of the brain, specifically the frontal and temporal lobes.
For this reason, a lack of insight may be more common in forms of dementia like frontotemporal dementia, a rare form of early onset dementia that typically develops between the ages of 45 and 65 and involves breakdowns in cellular communication in the frontal and temporal lobes.
It can be important to note, though, that a lack of insight can occur with all types of dementia. It may be less frequent in early stages of the disease when a person is likely to retain enough cognitive function to recognize that their memory and reasoning are being negatively impacted. However, in later stages of the disease, as dementia progresses, a lack of insight can become a very common symptom.
Lack of insight vs. denial
Lack of insight and denial may have the same apparent outcome: a person with dementia refusing to acknowledge the reality of their condition. However, the two situations tend to be very different.
In general, with a lack of insight, a person no longer has the cognitive capacity to understand their illness. Denial, on the other hand, can be defined as a psychological self-protection mechanism to combat the fear, sadness, shame, or worry a person may experience when they display enough early signs of dementia to receive a diagnosis.
A person may seem as though they are choosing to engage in denial, which can be frustrating for their loved ones, particularly when their symptoms might be affecting their functionality or safety. Often, however, a person can be entirely unaware that they are operating from a place of denial – another way that denial and lack of insight can be similar.
Unlike a lack of insight, though, denial of dementia symptoms tends to lessen over time. Denial could be a strong initial reaction to a disappointing diagnosis that may threaten a person’s sense of self and the life they have built for themselves. However, dementia patients may gradually come to understand and accept their diagnosis.
In some cases, dementia symptoms worsen until they significantly impact a person’s life and denial is no longer feasible, but they may not yet have progressed to the level of causing a lack of insight. It is usually during this phase of the disease that a dementia patient and their loved ones can start to plan for long-term care and management.
Finding additional support for living with dementia or caring for a dementia patient
Taking care of a loved one with dementia who is experiencing denial or a lack of insight into their condition can be challenging. Talking to a mental health professional may reduce stress for caregivers of a dementia patient. However, it may not be feasible for a dementia caregiver to attend therapy in person, as they may not be able to leave their loved one alone and unsupervised. In these instances, online therapy could be a helpful alternative option, as online therapy sessions can be attended from anywhere with an internet connection.
Research has indicated that online therapy can be just as effective as traditional in-person therapy sessions, including for people taking care of loved ones with dementia. One study found that dementia caregivers who completed a course of online therapy typically demonstrated reduced symptoms of depression and anxiety. Online therapy can be a helpful way to find additional support for coping with the stress of caring for a dementia patient who may not recognize the severity of their symptoms.
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