Analysis & Comment

Opinion | Dementia During the Covid Pandemic

To the Editor:

“A Year of Accelerated Unraveling,” by Katie Engelhart (Sunday Review, Feb. 21), about the impact of the pandemic on people with dementia, both in and out of nursing homes, clarified and validated my experience.

My father has been in a memory care facility for two years. Before Covid, my mom, one of my sisters or I would visit my dad almost every day. In March, when his facility shut down for three months, I worried constantly that he would not remember my mom when we would finally be allowed back to see him. He already did not recognize my sisters or me.

Earlier this year, at a weekly visit through a window, he asked if this was a dream. My mom has to explain, repeatedly, about the masks and about not being able to come inside. She refers to Covid as a “flu” so he can somewhat understand. His condition was bound to deteriorate, of course, but the isolation caused by the pandemic does, indeed, seem to have accelerated the decline.

Jeanne Isaacson
Ocean, N.J.

To the Editor:

My mother lives in an assisted care home with a good management team and caring employees. As an essential caregiver, I was allowed to visit my mother as long as my Covid test came back negative within 72 hours of my visit. Both my mother and I have been fully vaccinated. All staff members at the facility were offered the vaccine; I was told that half declined. Recently, the facility closed to visitors because one staff member tested positive.

I am having great difficulty understanding policies that allow unvaccinated employees to have daily contact with residents while barring fully vaccinated family members and essential caregivers from access when there is a positive Covid test result for an employee of the facility.

My mother has suffered with isolation and loneliness. At 97, she is unlikely to ever fully recover from this past year, but I want to do everything I can to make her quality of life the best it can be.

Yvonne Maskin
Metuchen, N.J.

To the Editor:

The suffering the pandemic has caused in adults living with dementia and their families that Katie Engelhart describes has been especially severe in nursing homes. But the pandemic has also had a huge impact on the psychological well-being of care providers and the other staff members in these facilities.

They have witnessed unprecedented decline and death among their resident charges and an onslaught of public messages critical of them and their workplaces. Stressed family members may direct their angry frustration at these staff members when administrative policies to prevent contagion preclude visitation or pose restrictions that erode the pleasure of visiting with a loved one. Like many others, these workers are worried about their own health and the overall safety and financial security of their families.

The more we respect and acknowledge the struggles of these underappreciated and underpaid workers, the better they will care for our loved ones living with dementia.

William E. Reichman
The writer, a gerontologist, is the chief executive of Baycrest, a center for the study and care of older adults with dementia, and president of the Milwaukee-based International Psychogeriatric Association.

To the Editor:

Katie Engelhart’s heart-rending piece on the pandemic’s impact on dementia skirts around an unspoken truth. As a nation, we have more compassion for our pets than for our aging population. When elderly animals go deaf or blind and become incontinent, we do not drop them off at a kennel to be locked in a cage until they die. Yet that is what we do to loved ones suffering from dementia.

Having been the primary caretaker of a mother with dementia, I witnessed the many forms of neglect, abuse and suffering that occur in even the most expensive nursing homes. Yes, the pandemic makes it worse. But let us not close our eyes to the everyday cruelty of institutionalizing loved ones under the false premise that it is in their “best interest.”

Stacia Friedman

To the Editor:

Fantastic article on Covid-19 and people with dementia.

I’m 70. This article has tweaked my head to look at it all, life and the future, differently. There but for the love of God go I. Though I have never had a good view of nursing homes, bless them.

Todd Moore

To the Editor:

Thank you, Katie Engelhart, for your very important and insightful article.

My mom, who does not have dementia, entered an assisted living facility after suffering a stroke in July 2020 at age 98. Although the care has been good, the protective measures taken to prevent her from getting Covid-19 — numerous periods of isolation, no social activities, having to eat by yourself — have been very detrimental to her mental state, too.

Imagine isolation without the internet, because you can no longer manage it, and no television, because your hearing loss doesn’t allow you to understand the voices.

Let’s hope that the current suffering will lead to some out-of-the-box thinking to transform elder care for all.

Fred Samuels
Rehovot, Israel

To the Editor:

My story is common: We had 60 years of happy marriage, four children, nine grandchildren and four great-grandchildren, and then dementia took over our life. Now, all the things that my wife loved, everything, have evaporated from her mind.

Nine months of care at home with family and friends ended with an impossible situation; we needed help 24/7 on physical, emotional and social levels. And I am a doctor.

The staff at her nursing home is a group of phenomenal women whose care and compassion are second to none. No, they cannot cure dementia, but they provide personal, medical, social and spiritual care to my loved one as well as much needed care for me. When your loved one ends up in a nursing home, care is delegated to strangers while you are left alone in your home. Especially with Covid-19 around, the caregivers are the lifeline, become part of the family.

Virtual visits with nursing home residents seem to me to be irrelevant. Love, warmth, empathy and spirituality cannot be conveyed with high tech. The elderly do not understand it. Caregivers in nursing homes and visiting nurses do God’s work in supporting us. My praise is for their care of all of our loved ones, coronavirus or not, and particularly for the care of the family of the loved ones, who are lonely and left out of a formula that worked well for them for many years.

Isaac Barr
Bloomfield, Mich.

To the Editor:

The pandemic may finally force us to take a good hard look at nursing homes across our country. We’re seeing more about how caring for someone with dementia is an extremely difficult job that is often impossible for a family member to manage. I know firsthand: I’m 86, with a husband who’s had Alzheimer’s since 2010.

The need has always existed for places that provide this specialized care. Now, as baby boomers are becoming seniors, that need is even greater. Unfortunately, our society decided at some point in the last few decades that being old is to be avoided.

We are obsessed with staying young and looking younger than our parents did at our age. Unwittingly, we’re sending our children the same message. Is it any wonder we don’t pay much attention to the places where many old people go to live out the last years of their lives?

Until we’re ready to get rid of the stigma that we’ve attached to getting old, including how we think about dementia, we will continue to see our loved ones die in nursing homes of neglect and virulent diseases.

Donna Grant Reilly
Hanover, N.H.
The writer is the author of two books on Alzheimer’s caregiving, including “Defined by a Disease.”

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