Anosognosia: What to Do When Someone Is Unaware They Have Dementia

By | October 24th, 2024

Anosognosia, a condition where a person is cognitively unaware of their own sickness, can delay diagnosis and treatment. It can also have a significant impact on caregivers and families. Dr. Catherine Madison at California Pacific Center weighs in.

Over 80 percent of people living with Alzheimer’s disease are unable to recognize their own cognitive decline, according to Cleveland Clinic. Anosognosia is the condition in which a person is cognitively unaware of their own sickness, and it’s highly prevalent among people with neuropsychiatric conditions, including dementia and Alzheimer’s. 

According to neurologist Dr. Catherine Madison at California Pacific Medical Center, it’s unavoidable for some. “It’s not denial, but the brain’s inability to recognize its own malfunction.” 

For caregivers and families, this “cognitive blindness” can add complexity, delaying treatment and creating emotional barriers. Yet, Madison and other experts agree that with the right strategies, managing anosognosia can become less overwhelming.

Understanding anosognosia

Anosognosia can manifest in the early stages of dementia, even in individuals with mild cognitive impairment

“They’re not being difficult; their brain simply can’t process that something is wrong,” Madison said. Family members often struggle to get their loved ones to acknowledge the issue or seek help. 

Dr. Serge Gauthier of McGill University found that individuals with anosognosia are three times more likely to develop full-blown dementia within two years. He emphasized that family involvement is key in securing early intervention.

“People with mild memory complaints should have an assessment that takes into account information gathered from reliable informants, such as family members or close friends,” said Gauthier.

Madison agreed, noting that creative strategies can help ensure patients receive proper care. For instance, instead of insisting a loved one visit a doctor, she suggests making it a joint activity: “Let’s both go for a checkup,” or frame the care around safety, which can be less threatening.

Holistic care: A family-centered approach

Madison advocates for holistic care, a model focusing on both the person living with dementia and the caregiver. She describes dementia as a “horizontal illness” that affects everyone connected to the individual. This holistic view is central to her practice, encouraging caregivers to consider not only medical care but also emotional and social well-being.

“Caregivers often carry an enormous burden,” Madison said. “And if the person has anosognosia, the burden grows heavier because they’re caring for someone who doesn’t realize they need help.”

Madison’s personal experience caring for her mother with dementia informed her approach: “It was the hardest thing I’ve ever been through,” she said. Now, she helps families navigate similar challenges with practical, compassionate advice. “Caregivers need to take care of themselves, too. Burnout is real, and it’s important to seek support before it overwhelms you.”

Navigating anosognosia in dementia

One of the main challenges in caring for someone with anosognosia is finding ways to engage them in care without creating conflict. Madison suggests patience and creativity. 

“If you tell someone they need help, and they don’t see it, you’re going to hit a wall,” she said. “But if you approach it from a different angle, you might find success.”

Instead of directly suggesting help with daily tasks, Madison recommends reframing the situation. 

“Tell them it’s a favor for someone else. Maybe say, ‘I have a friend who could use a job, could you help them out by letting them assist around the house?’” This strategy shifts the focus from the person’s need, making it more likely they will accept assistance.

Delaying diagnosis: A critical issue

Anosognosia often delays diagnosis and treatment. When a person cannot recognize their own decline, they are less likely to seek medical evaluation. Madison noted that anosognosia presents early in many cases but intensifies as the disease progresses, further hindering opportunities for early intervention.

“Once you reach a later stage, it becomes even more difficult to bring people in for an evaluation. They don’t see the problem, and they don’t want to participate,” Madison said. Early intervention is crucial to improving outcomes, even if the individual isn’t aware of their cognitive decline.

Gauthier added that involving family members in diagnostic assessments can significantly improve the chances of identifying cognitive issues early. “Sometimes, the person will deny or downplay symptoms, but family members notice the changes. They are key to catching this early,” he said.

Emerging research and hope for the future

Despite its prevalence, anosognosia remains under-researched compared to other symptoms of dementia. However, Madison is hopeful about new advancements in brain research.

 “We’re learning more about the specific brain regions and networks involved in self-awareness,” she said. Studies using functional MRI are mapping the circuits that contribute to this lack of insight, which could eventually lead to targeted therapies for people living with dementia. “The more we understand the condition, the better we’ll be able to provide individualized care,” she added.

Gauthier echoed her optimism, though he emphasized that much work remains to be done. “It’s not just about treating the disease but addressing the full scope of care. We need better ways to support both people living with dementia and their families.”

Practical advice for caregivers

Madison encourages caregivers to be adaptable and compassionate. She advises them to accept that their loved one may not fully understand their condition and to focus on creating a supportive environment that prioritizes safety and emotional well-being.

“Keep in mind that your loved one is in a different reality because of the illness that has affected their brain,” she said. “Try to stay grounded in your reality, but find a common meeting place for the goal that’s good for both of you in their reality.”

Madison also stresses the importance of early conversations. “Start these conversations early, before anosognosia becomes a barrier to decision-making,” she advised. By discussing preferences for care in advance, families can avoid crises when the individual’s cognitive impairment prevents meaningful discussions.

Additional reporting by Simon Spichak

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