Even among medical experts, you will find differing opinions on how much someone with advanced dementia of any type understands. Alzheimer's disease (AD) in particular can render a person mute and uncommunicative, especially during the final stages of the disease. This situation commonly leaves family members wondering how much their loved one is aware of and whether their efforts are providing any comfort.
Loving family members, and others who care for and about people with dementia, would like an answer to their question about how much a person understands. Personally, my non-medical viewpoint is that it varies. As a caregiver, my experiences with many types of dementia suggest to me that people likely do understand their surroundings on some level, even if it may only be picking up on their caregiver's body language or mood. Also, some individuals have inexplicable moments of clarity where they will seemingly come out of their walled-off state and momentarily return to a state that is similar to their pre-dementia personality.
Moments of Clarity
I was recently chatting with a group of students from a university class that uses my book as a text, and a young woman shared a story about her grandmother that started an interesting discussion.
The young woman was in her twenties and her name was Anna. Although she had never known her grandmother without AD, they still had a close relationship. Twenty years is a long time for the disease to progress, and some people decline much more quickly than others. Anna was fortunate to know her grandmother during the years when she was still able to communicate.
Of course, as her grandmother's disease progressed, communication became more difficult. Yet, Anna never gave up, and she continues to visit her grandmother regularly. During the later stages when her grandmother was seemingly unable to recognize friends and family members, Anna experienced something both baffling and remarkable.
As she was leaving her grandmother's room after a visit, Anna hugged her goodbye, as was her habit. As she did so, she said, "I love you, Grandma." To her astonishment, her grandmother responded with great clarity, "I love you, too, Anna." Then, her grandmother slipped back into fogginess of her disease.
This occurrence is not as rare as you might think. My dad suffered from a different type of dementia; one caused by a failed brain surgery. He spent most of his last decade of life in a state of delusion. Yet, there were fleeting times when, out of nowhere, my dad would look at me with clear, comprehending eyes and make a profoundly coherent statement. This happened once when he thanked me for helping him live out his "fantasies," meaning the work life I created for him as his pretend office manager. Those moments were just that: moments. Then, he would relapse back into his delusional world.
For me, moments of clarity that appear and disappear within a flash of time are a kind of proof that there is still a great deal going on in the brain of a person with advanced dementia.
The Arts as Therapy for Advanced Alzheimer's Patients
In the remarkable book, "I'm Still Here: A New Philosophy of Alzheimer's Care," John Zeisel, Ph.D., describes the effect that art therapy has on people with dementia. Excursions to museums and art galleries with patients have shown Zeisel and his colleagues that folks with these diseases have some wonderful insights. Often, because of how dementia affects the brain, the person with dementia will see a painting differently than a person without the disease. But differently does not mean in a lesser manner. Zeisel illustrates times when a person with dementia can actually see more deeply into a piece of art and point out things that others miss.
People in more advanced stages of the disease still can benefit from being creative and productive as well. This could consist of making art, helping with safe kitchen projects, dancing and participating in life. Since Zeisel's book is about treating these individuals by interacting with them in innovative ways, many of the people used as examples are not end-stage patients. However, Zeisel's theory holds true throughout the person's life. He believes that the person is "still there."
What Do People in Advanced Stages Really See?
My uncle did not have Alzheimer's that we knew of, though after several strokes, he did suffer from some type of dementia, likely vascular. He would sit on the porch of the nursing home where he spent his last years, often calling out his deceased wife's name. His plaintive calls were painful to hear. "Marion! Marion!" It was heartbreaking. The image that struck me was that he seemed to be physically reaching toward something.
I sat with him during his final hours. The nearer to death he got, the more he reached out. Repeatedly, he'd grab outward to what appeared to be thin air. Did he see or hear something I didn't?
I often wonder what those in the advanced stages who mutely stare into space are seeing. Something? Nothing? Some would say there is not enough left in their shrunken brain to have thoughts; that their motions are merely basic instincts such as a response to pain. Perhaps, but personally, I would not be comfortable making that assumption.
For that reason, I advise people to watch what they say around these folks who have lived a full life, but cannot now express their feelings. I advise them to watch their body language, as their agitation or anger may transfer to the person for whom they are caring. I advise them to remember that this person, regardless of their inability to communicate, is still a person, nothing less.
Alzheimer's is a terminal illness, thus most people in the last stages do not have long to live. They must be watched carefully for signs of distress or pain, because they cannot vocalize these needs. Many are placed under hospice care, as breathing and other functions become more difficult.
In my mind, there is no time when a human being should be considered less than a human being. I believe there is much we do not know and that assumptions based on physical abilities we are used to seeing in "healthy" people can be misleading. It can be about our inability to perceive as much as their inability to signal in a normal fashion.
Maybe I am wrong, but I would rather err on the side of caution and respect by treating the person as a whole human being until the end, than err on the side of convenience by withholding due attention and dignity.