Pat’s dad can’t remember from moment to moment that he has a brain disease affecting his ability to live alone.
Sara can get herself out of bed—but doesn’t know what to do next. She needs someone to prompt her through every step and help her get them in the right order.
These are frustrating situations for people with dementia and their care partners. Understanding more about brain changes caused by dementia can help us respond with compassion and patience.
Dementia changes the brain, and those brain changes also affect a person’s thinking and ability to function. The type of dementia will affect how and when these changes occur. Many affect what we call “executive function”—the cognitive areas that let us get through our days, perform routine tasks, make decisions and solve familiar problems. When these functions are impaired, the result may be inability to think clearly, do routine tasks, and make good decisions.
Most troubling can be anosognosia, or lack of awareness in the presence of a neurological illness. Pat’s dad can’t remember that he has a brain disease. He doesn’t see any problem with living alone and resists the idea of moving in with Pat. It’s hard on Pat, too. She remembers a father with good insight into his life and situation.
“A person can abstractly understand that they have an illness, but not be aware of how it is affecting them,” says Mariana Longoria Ibarrola MD, a brain health expert who contributed a chapter to our book, Moving a Relative and Other Transitions in Dementia Care. “Loss of insight into one’s own deficits is often baffling to caregivers who are used to having honest conversations with their loved ones.”
Lack of insight may lead to denial, inflexibility, or irresponsibility. Care partners frustrated by a person’s lack of insight might confront or blame. All of these can lead to conflict. (Find ways to handle anger, aggression and conflict here.)
Understanding the “why” of these behaviors helps us respond in caring and appropriate ways. Knowing what is happening in the brain can help us use the powerful tools of empathy and forgiveness—and remember not to take things personally. Then Pat can approach her father and decisions that need to be made from a different perspective. Sara’s family can learn how to coach her instead of blaming her for being “lazy” or “resistant.”
Remembering that the disease is talking helps us stay calm, warm, and supportive. George and Harriet called his disease Mr. AD. When things became challenging, one or the other would often say “That’s Mr. AD interfering again.”
Changes in the brain are behind all of the changes and stages of dementia. We love the way George and Harriet let “Mr. AD” take the blame instead of each other. Our books Coping with Behavior Change in Dementia and Moving a Relative and Other Transitions in Dementia Care offer many more ways to cope with “Mr. AD”.