Need a Whole Solution for Dementia or Alzheimer's Disease?
Begin with gratitude and dementia caregiver resources.
Posted May 20, 2020
The 40 million unpaid caregivers of people with dementia are heroes on the front lines of COVID-19. They and their paid colleagues have good reason to be especially concerned about health. The statistics are horrifying:
- Eight out of ten people dying of COVID-19 in the U.S are 65 years or older.
- One in ten people 65 years or older has dementia.
- Alzheimer’s disease affects 5.5 million Americans and approximately 44 million worldwide.
- Eighty percent of Alzheimer’s caregivers have symptoms of severe stress — a 10 percent increase since late March.
As family caregivers donate some $470 billion worth of work and families pay dearly for senior living facilities, loved ones are dying from COVID-19 in staggering numbers, and caregivers’ own vigilance makes them personally vulnerable.
In describing a Lancet study on the pandemic’s danger, Vox researchers refer to a “gulf of survivability” – the case fatality rate of people 80 and older is 13.4 percent compared to a 0.4 percent fatality rate for those just a bit older than I am – 40 to 49. Brooklyn-based Maryellen Stewart movingly argues in Vox as she mourns the death of her grandfather: "Don’t treat them just as statistics.”
Usually I thrive on numbers, especially mathematical models. COVID-19 has brought us an unwanted barrage and the stories from nursing homes make us sleepless well beyond Seattle. Our elders are even more vulnerable. We want to ease their lives and those of their caregivers with guidance provided by experts. Here are my top six recommendations:
Heed Warnings. Oregon-based dementia expert Christy Turner told caregivers in a BeingPatient blog: Your client’s “brain is under attack any given day.” That brain controls the immune system. “When you read or hear warnings for people with compromised immune systems, this includes your person.”
Plan Ahead. The Family Caregiver Alliance is among the nongovernmental groups offering tip sheets linking to key government resources like the Centers for Disease Control. The Alliance focuses on ways to plan ahead for scenarios, take preventative steps to ward off illness, and carefully watch for symptoms. The Japan News recently editorialized that people with dementia are particularly vulnerable to caregiver abuse. To reduce caregiver burnout, the American Medical Association has published a useful guide.
Socially Connect. “Even Alzheimer's patients who can no longer communicate may take comfort in reassuring words from a loved one,” NPR recently reported in a moving story about a husband who maintained a virtual connection with his wife in senior living. “Give them the information that you think that they can take in,” Alzheimer’s Association Care and Support VP Beth Kallmyer advised listeners, “then just respond to them on an emotional level [like you would for anyone else]. We're going to get through this.”
Free tools, podcasts, and portals now offer ways to share stories and art with your loved ones in senior living or sheltered at home. Connect with us on Twitter or our website, and we’ll offer more options.
Maintain Normalcy. Geriatrician Howard Fillit, Founding Executive Director and Chief Science Officer of the Alzheimer’s Drug Discovery Foundation (ADDF) recommends maintaining normalcy. This may help differentiate dementia from viral symptoms. Fillit reminds us that changes to daily routine [like continuous handwashing or wearing masks] can be difficult new habits for people with Alzheimer’s and related dementias. Hand sanitizer could be more practical.
Recognize Gratitude. I feel grateful for my brilliant grandmother, who helped raise me. She was a commanding bank executive in a conservative society. I admired her cognitive capability for that—as well as her courage—and all the wonderful stories she told. She confided in me that she deeply wished to maintain command of her life’s facts and memories: to die with dignity. Tragically, her mind slipped away to dementia as she died.
“Take good care of your health, first of all,” Jolie Chester, a silver-haired Holocaust survivor at the Terraces of Baycrest in Toronto, urged others recently. “We have to make the best of it,” she said in a video. "Whatever little thing you can be happy with, it's a gift.”
Empathize and Exercise. We all may occasionally feel like our minds are going. Brain healthy but sleep-deprived or worried people can barely remember to wash their hands or whether they wiped the doorknob before or after they washed. Everyone doing it alone could use a stopwatch or a song running 20 seconds.
Since we understand sheltering in place, we can empathize with the vulnerable elderly. LeadingAge, AARP, and others offer creative ways to keep people moving around indoors or exercising safely outdoors. Care partners may want to try ballroom dancing.
Reasons for Optimism
Like Chester, I am optimistic yet gravely concerned for the 80 percent of elders who live with a preexisting condition such as dementia, though many people are already helping each other. I am particularly impressed with retirees who are donning health superhero masks to fight COVID-19. This engagement is excellent for them and their patients.
My Darmiyan team has developed a diagnostic tool for providers serving older adults living independently, at nursing homes, or in assisted living facilities. It gives them brain health scores 24/7 as if a virtual neurologist was on call to address the brain health evaluation needs of seniors. The availability of objective evaluations can remove a huge amount of anxiety from patients who have slight cognitive decline or memory problems when their condition is not due to Alzheimer's disease. When people with mild cognitive impairment can stay stable or even get better by changing their lifestyle, they will enjoy a much better cognitive future.