One of the most common questions caregivers ask is regarding the behaviors of their loved ones. These are generally inquiries about their loved one's "pretense" of not understanding "clear" instructions or concerns that they are "faking" confusion or are not able to perform a task out of "spite."
Let me give you an example.
Recently I saw a man in his seventies -- let's call him John. I met with his family around the kitchen table and we discussed his diagnosis (Alzheimer's), his stage of the disease (late Stage Five), his weight loss (gradual but continual), and his prognosis (terminal). Surrounded on both sides by his wife, his two siblings and his children, John was alert and engaging and interested in what we were talking about, but only socially. He was sitting quietly because that was the polite thing to do. He laughed when we all did, he looked concerned when everyone at the able did, he looked to his wife to answer questions directed at him. He wasn't really able to comprehend the depth of the conversations around him.
When it was time to develop the care plan, his wife cut John a slice of pie and made him a snack table in another room. She poured him a glass of milk, turned on one of his favorite television shows and returned to escort John. As she motioned for him to get up from the kitchen table and follow her, this slightly stooped gentleman, who only an hour or so earlier had walked steadily to the table was suddenly frozen.
John gripped the table tightly and tried to rise from his chair, but he couldn't. With a look of surprise and confusion, he made several more attempts to stand, but couldn't figure out how to do so. Within a few seconds, his children realized their father couldn't stand and came to assist him. John was supported and lifted away from the table, up and out of his chair. Standing erect, he motioned he was ready to move now and with his son guiding him, John walked slowly to his chair and the waiting slice of pie.
Incredulously, I listened as his siblings, both in their 60s, complained.
"Did you see that?" his sister asked. "He does that all the time. Pretends he doesn't know how to walk. He's doing that because you're here. He wants us to feel sad for him."
Makes you stop huh? In spite of all we had just talked about, the damage in John's brain, the literal loss of brain tissue, how this tissue loss changed John's abilities, all of it, the course of the disease, the stages, the decline. And through it all, she shook her head. "Yes," she understood. "Yes," this was the disease causing John's declining memories, health, etc. "Yes," his brain lobes are damaged. "Yes," he's getting worse.
But when she saw the results of dementia, she still didn't get it.
John had just experienced a flash of apraxia, one of the four A's of dementia. That is, John's brain couldn't figure out how to coordinate purposeful muscle movement. His brain literally couldn't find a pathway to tell him how to stand. Specifically, his brain couldn't find the working links from his frontal, occipital and parietal lobes to help him hold onto the table, balance and push up with his legs while scooting the chair backwards and using his arms against the chairs arms, push his body to an erect stance -- all while maintaining balance -- all in a single fluid motion. But to a couple of family members, John was faking his inability to stand and move away from the table.
People like John, that is, people with dementia, aren't faking anything. The damage in their brains won't allow them too. To lie, deceive, pretend, or exaggerate the loss of abilities requires a three-pound, fully functioning brain. People with dementia don't have three-pound brains, their brains are shrinking. Given his stage of dementia, John had lost between one-half and two-thirds of a pound of tissue already. Like all people with dementia, he wasn't faking an inability to stand, he wasn't trying to get special attention. He was simply doing the best he could in that moment. It's the dementia, not the person.