When we discuss Alzheimer’s disease, so much of the focus is on how much our loved one will lose or has already lost. We talk about all the things they will no longer be able to do or the things they already can’t do themselves. Dementia is all about loss and pain and sadness. Or, is it?
There is a growing movement to help people shift their attitude toward dementia. Rather than the emphasis being on what someone with dementia can’t do, there is beginning to be more focus on what they still can do. Instead of thinking about the losses one will experience, we’re being challenged to recognize how much remains. Of course, a chronic, terminal illness is sad and painful, but we don’t have to focus on the sorrow all the time every day. Alzheimer’s disease can give the person with the diagnosis, and those around them, an opportunity to take a good look at what makes them the people they are and create a new relationship with one another. It forces those involved to slow down and take a breath before doing or saying anything. And, if we allow it, there are many opportunities to see the silly side of life.
In the article, Learning to Live with an Alzheimer’s Diagnosis, by Dennis Thompson, Jr., Thompson points out what stays the same after an Alzheimer’s diagnosis:
- “You’re still you.” Alzheimer’s disease does not change the basic human being you were before the diagnosis.
- “There’s no need to feel embarrassed.” Embarrassment and shame have no more place in diagnosis of Alzheimer’s disease than feeling ashamed of a heart attack. No one chooses to live with a dementia diagnosis, it is something that happens to us beyond our control.
- “You aren’t going crazy.” Dementia is not insanity. Many times, people who cannot remember something will say, “I feel like I’m going crazy,” and it just might feel like that at the time. But crazy implies a consistent and severe disordered state of mind. A person with dementia is not crazy, they are confused. More often than not, they will be able to adhere to social conventions in a way that masks their confusion to anyone who doesn’t know them well. As the disease progresses, a person might exhibit behaviors that other people find “crazy.” However, anyone willing to do a little digging will be able to make perfect sense out of the behavior and why it was the appropriate thing to do, even if not socially suitable.
- “Don’t predict the future.” Every person with Alzheimer’s disease will follow a different path. While it is wise to be prepared, there is no need to obsess over what might happen after the dementia diagnosis. There is no guarantee that you or your loved one will have the same experience as someone else. Like buying insurance; learn all you can, have a plan, and then go on with your life and hope you won’t ever have to use it.
- “Be a fighter.” Look for the bright side and stay positive. Taking measures to stay positive can make living with Alzheimer’s, or any chronic disease, more manageable. This can be incredibly difficult, especially on the dark days, so it is important that both the person with the diagnosis and their loved ones know when to ask and accept help from family, friends, and professionals.
In her article, Doing Dementia Better: Anthropological Insights, Elizabeth Herskovits Castillo, MD, PhD, the Hospitalist at York Hospital in York, Maine, relates the story of a man with dementia whose behavior indicated that he was happy and content. Yet, his daughter remarked that the man sitting beside her “is not her father, that her father is dead.” This statement by his daughter clearly wounded the man. Castillo goes on to say, “This case vividly depicts how the cultural perception of people with dementia as the walking undead increases suffering. But why do we perceive people with dementia as the already-dead and the not-truly-human? And what can we do to change course?” Castillo believes the answer is tied to the definition of personhood – what makes a person a person – or what our culture believes makes a person a person. She describes the following models of personhood:
If we subscribe to any or all of the above cultural norms related to personhood, it becomes easy to see why our culture dismisses those living with dementia as less than a person. However, as Castillo points out, if we use these as models of what it is to be a person, then “the loss of self in dementia arises not solely from the disease but rather from the way other people treat the person with dementia.” It is us who are treating the person with dementia as if they were no longer a human being. The truth is, they are still there.
In his inspiring book, I’m Still Here, A New Philosophy of Alzheimer’s Care, John Zeisel, PhD, describes a glass-half-full attitude toward Alzheimer’s disease. He teaches us how to connect with someone with Alzheimer’s through the abilities that don’t diminish over time like music, art, facial expressions, and touch. Dr. Zeisel’s main points are:
- Love is a universal language understood far into the illness, even to the end of life.
- Everyone has preexisting, instinctual abilities that a caring relationship can capitalize on. Drawing on these innate abilities enables everyone living with Alzheimer’s disease to function better than expected.
- Memories are not held in just one part of the brain. Rather, we place attributes of experience in various parts of the brain – faces in one part, colors in another, emotions in another, etc. Thus, memories can be extracted in a variety of ways.
- Alzheimer’s disease is treatable – not curable – but treatable. By carefully balancing nonpharmacological and pharmacological approaches, a person can live their best quality of life. Nonpharmacological treatment includes carefully planning and managing the social and physical environment.
- Caregivers need to unburden themselves of guilt. Alzheimer’s disease is an organic illness of the brain, sharing care-partnering tasks with others is keeping a promise, not breaking it. Taking care of themselves is a way for caregivers to show the other person they love them.
- People living with Alzheimer’s disease live in the present moment. Being in the present moment ourselves is a first step toward being in the mind of a person living with dementia.
Perhaps most importantly, Zeisel reminds us that a person living with dementia is first “a person” and only then someone with a disease. We need to remind ourselves and our loved ones that they are still the person they have always been. So much remains alive and vital in the brain of a person living with Alzheimer’s disease.
The following is a quote from a recent Washington Post article, Changing the Tragedy Narrative: Why a Growing Camp is Promoting a More Joyful Approach to Alzheimer’s: “Alzheimer’s can be a liberating event, an opportunity to fly,” said Jennifer Carson, Director of the Dementia Engagement, Education, and Research program at the University of Nevada at Reno. “This is in no way to dismiss the pain and suffering that comes from dementia, but to understand that a lot of that pain and suffering comes from the response…. Tell someone they have dementia and then ignore them. That’s the suffering way more than the tragedies that are intrinsic to dementia itself.”
For more information:
Read the Washington Post article, Changing the Tragedy Narrative: Why A Growing Camp is Promoting A More Joyful Approach to Alzheimer’s: https://www.washingtonpost.com/local/social-issues/changing-the-tragedy-narrative-why-a-growing-camp-is-promoting-a-joyful-approach-to-alzheimers/2019/02/21/2c4ed4f0-2244-11e9-81fd-b7b05d5bed90_story.html?utm_term=.827debd8e5e8
Listen to Lori La Bey’s conversation with Susan Massad and Mary Fridley on The Joy of Dementia: You’ve Got to Be Kidding: http://www.blogtalkradio.com/alzheimersspeaks/2018/10/09/the-joy-of-dementia—youve-got-to-be-kidding
Watch a TED Talk by Beth Fauth as she discusses finding the joy in Alzheimer’s disease: