These posts frequently feature marginalized communities and the need for both our government policies and our individual practices to find ways to improve the quality of life in these places. Injustices in such settings have often rightly been the subject of these writings; conditions within communities of color, among LGBTQ persons, with immigrants, poor people, separated families, students and others have been examined and analyzed. But one portion of the population has been noticeably absent: those suffering from dementia. And it is time—long past time, actually—to ask why.
After weeks of media coverage of politics and the pandemic, I was drawn to an article in Sunday’s New York Times by Katie Engelhart entitled “Unraveling.” Intrigued, I wondered who or what was unraveling now. But I was quickly caught up short to realize that the story was about the portion of our population suffering from dementia—a portion often out of sight and out of mind until, of course, it strikes you personally. Then, you plunge into territory that is unfamiliar and largely unknown. You discover, as Engelhart did, that “vanishingly few studies have considered what it is like to be demented.”
There are almost five million people in the US today suffering from the effects of Alzheimer’s, dementia and other forms of severe cognitive loss. Worldwide, the condition numbers about 47.5 million. Yet, we rarely talk about it among those subjects that prompt discussion of a just and equitable society. Unless, of course, it impacts us directly and affects someone close to us. Most everyone knows of someone who suffers from this; often it is a close family member, perhaps even a spouse. Why don’t we talk about it?
In part, because this is a slow moving crisis until the condition strikes close. Then you are gripped by feelings of heartbreak and frustration—heartbreak as the sufferer becomes increasingly incapacitated and detached; and frustration about not knowing how to relate to someone who had been so vibrant, responsive and engaged. The frustration is compounded by the lack of authoritative information on how to reach out. So—unless it is a member of your immediate family—the response is often simply to withdraw, no longer initiating contact because simply carrying on a conversation becomes so difficult. I plead guilty to this. Until about two years ago, I maintained fairly regular contact with a staff member from the 1970’s—a dynamic and gregarious woman. But as she slipped into dementia I simply stopped visiting.
Of course, visiting anyone in the time of Covid has become problematic. But for persons suffering from dementia, the pandemic makes things infinitely more complex and the impact so much more intense. Katie Engelhart reminds us, “Often, a caregiver is an aging spouse who before the pandemic visited her loved one’s nursing home every day and stayed for hours — and maybe helped with feeding and bathing when the nursing aides were busy, or just because she preferred it that way. Since the start of the pandemic, most family caregivers have been barred from care facilities or had their visits severely restricted.”
I can relate. In 2017 (pre-pandemic, of course), my dad spent the last four months of his life in a skilled nursing facility. He was not suffering from dementia but as his physical condition worsened, he became increasingly disoriented, unable to comprehend the changes in his life that had suddenly been thrust upon him (remember, he did NOT have dementia). Both my mom and my sister visited him daily. Their visits became anchors for his day-to-day tedium. I cannot imagine how he would have responded to the pandemic—no visits, no physical contact from the family that surrounded him throughout his final months. Add dementia to this situation and the confusion escalates exponentially. Anyone who has experienced this knows the depth of pain, anxiety and grief this condition can cause families. For those who are alone, the level of hopelessness and despair become bewildering to the point of quiet desperation.
So, what do we do? First, it is important to support private organizations and public policy that offer a creative, life-affirming alternatives for people with dementia, a segment of our population that can be easily overlooked. If we are to seek a better quality of life for all, we cannot lose sight of the five million Americans caught in this slowly closing vise.
And as individuals? It is important not to fade away (as I have done with my friend) but to maintain contact with those suffering with this condition. We must extend ourselves with empathy and compassion, neither making unrealistic demands nor harboring unattainable expectations for the future. Our task is to be present in the present. Call—or, as the pandemic eases—visit someone you know who suffers from dementia. Talk to them. Walk with them. Sing with them. Be a “grace-point” of contact, so that even as their cognitive capacity declines, you can offer a caring touchstone, engaging with them emotionally even as intellectual connections become more tenuous. Such human contact with what Jesus calls “the least of these” is an important measure of how we live as individuals and how we function as a society.
Diagnosed cases of dementia, a syndrome not an illness, and its close cousin Alzherimer’s disease are increasing within the U.S. population, nearly doubling over the last decade of reporting. As more is learned about the causes, progression and effects of the syndrome, it is expected the numbers will continue to rise in the decades ahead.
There are calls within Congress to stage a Project Warpspeed-like assault on the causes and treatment of dementia and Alzheimer’s disease. Whether that effort comes to pass it is important to remember each of us likely will be touched in one way or another by the profound effects dementia lays upon those who suffer it as well as those who care about, and for, the afflicted.
Dementia can tear apart a family unprepared for its arrival, progression and inevitable outcome — long, difficult years preceding death. Early diagnosis often is sketchy.
Fifteen years ago my mother, who pridefully lived alone at age 80, locked her house, got in the car, and proceeded to a nearby medical appointment. She never arrived at her intended destination, having disappeared and arriving back at her house five hours later unaware of where she had been. She was experiencing early-onset Alzheimer’s disease. Within six years she would be dead, spending the last three in a nursing care facility where she was warehoused by well-meaning but ill-informed siblings who had Power of Attorney over her affairs.
I no longer speak to two of my three brothers.
On the subject of speaking, it is important for families and friends to educate themselves on how best to speak with an individual who is experiencing dementia. There are scores of books on the subject; however a helpful prompt can be found in a practice utilized by improv comedy actors. It is called “Yes, and…” thinking, which suggests a participant in conversation should unquestioningly accept what the other has said and ask that she expand on her line of thinking. In other words, “Yes. And…?”
Marie Marley, author of “Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy,” offers this advice on speaking with someone who has dementia:
1. Don’t tell them they are wrong about something,
2 Don’t argue with them.
3. Don’t ask if they remember something.
4. Don’t remind them that their spouse, parent or other loved one is dead.
5. Don’t bring up topics that may upset them.
In closing, this aging writer encourages everyone to pick up a copy of Atul Gawande’s celebrated book “Being Mortal.” Information about the author can be found here:
http://atulgawande.com
Tough one. Since I’ve heard risk may skip generations, I find myself counting.. “Ok, we know great-Grandma had it but Grandma? No… etc” The dementia sufferer embodies our biggest fears for ourself i.e. losing control, losing approval, losing safety. On top of that, we are losing the loved one! – a double or maybe a triple-wammy of grief, fear and a lack of skills/tools to deal with any of it. The gradual loss of a parent or grandparent, aunt, uncle, friend, public figure or celebrity to dementia is heartbreaking and the fear is real. When I worked in Security at a senior residence, I remember laughing about a client who would introduce himself as if for the first time – every 10 minutes. It’s hard to find the humor now. I pray that there will be advances in pharmacology so that dementia will be eradicated in the not distant future. In the meantime, music (music as therapy) offers some hope.