When your loved one has dementia, you may spend hours trying to understand the world from their perspective. One of the most common questions is whether a person knows they have dementia. The answer depends on the person, the type of dementia they have, and how far it has progressed. The answer can also change from moment to moment. A person who tends to sundown—get worse at night—may be keenly aware of their dementia during the day, but too cognitively compromised to remember their dementia at night. Here’s what you need to know about whether, and to what extent, a person with dementia can understand their diagnosis.
Can a Person Detect Early Warning Signs of Dementia?
If you have a senior loved one, you may worry about whether they will notice it if they start developing symptoms of dementia. In the early stages of dementia, your loved one will still have the cognitive capacity to understand what dementia is, and detect its symptoms. The challenge is that the earliest symptoms of dementia are subtle, and easy to confuse with normal aging.
When dementia impacts memory, a person may not be aware of their memory deficits. A study of more than 2,000 older adults found that many had memory problems years before a dementia diagnosis, but that they also typically did not recognize their own memory problems.
This is why it’s so important for loved ones to regularly spend time with seniors. Several friends or family members should talk to and visit your loved one as often as possible. This offers the benefit of multiple perspectives, and helps you catch signs of dementia early, before they interfere with your loved one’s safety or quality of life.
How Dementia Changes Awareness
There are numerous types of dementia, each of which attacks the brain in a predictable pattern. Primary progressive aphasia, for example, attacks speech first, while frontotemporal dementia changes personality and compromises executive functioning. Alzheimer’s disease destroys short-term memory. Over time, the symptoms become more severe, and various types of dementia can converge. Dementia can affect virtually every aspect of brain functioning, including the brain’s ability to control movement. So dementia also undermines a person’s awareness of their own behavior. This makes it more difficult for a person to:
- Compare their behavior to others’ behavior and notice differences
- Understand what dementia is
- Objectively assess their own behavior
The more advanced a person’s dementia is, the less likely it is that they’ll be able to understand that they have dementia. Certain types of dementia affect a person’s ability to understand their own diagnosis much earlier in the progression of the disease. For example, since frontotemporal dementia attacks impulse control and behavior, it may make it difficult for a person to see that their behavior is not typical, or has changed.
The Importance of Proper Diagnosis
A study at Johns Hopkins Medicine argues that the majority of adults with “probable dementia” are unaware that they have it. Of the nearly 60 percent of people who did not know they had dementia, 39.5 percent were undiagnosed. An additional 19.2 percent had been diagnosed, but had not been told about the dementia.
Dementia does not remove a person’s right to understand their own body and make decisions about their life. Particularly early in the disease, the right diagnosis can empower a person to make decisions about long-term care, and discuss their desires and treatment preferences with loved ones. So encourage your loved one to get an accurate diagnosis from a knowledgeable neurologist, and do not conceal their diagnosis from them.
Denial vs. Poor Cognitive Health
Sometimes a person knows they have dementia, but does not want to accept the reality of what that means about their future. If your loved one is distraught about their diagnosis or insists that they’ll be the one to “beat” dementia, don’t waste time arguing. Instead, work to support them as they navigate the immense grief of cognitive decline. Therapy can be helpful. So too can support groups, plenty of compassion from family members, and a clear plan for how to manage the progression of the disease.
Dementia is a frightening diagnosis. Dementia will change your loved one’s personality, abilities, and life. But it doesn’t have to mean their life will no longer be good or filled with purpose. Quality dementia care is all about adapting your loved one’s life to their abilities, with a keen focus on respecting their values and hopes for the future. That’s exactly what The Arbor Company does. We’d love to help your loved one find dementia care that offers hope and a renewed sense of meaning.