Caregiving for Dementia Patients in the Time of COVID-19

The pandemic has brought a special terror to persons with dementia and those who care for them. Those in long-term care are at grave risk of contracting COVID-19, as are the staff of such facilities. With weakened immune systems, and often underlying medical conditions, those in care facilities are especially vulnerable.

Locally we’ve seen tragic outbreaks like that at Lynn Valley Care Centre. The whole country has been appalled by the horror of the Herron care centre in Dorval, Quebec, where 31 patients died in March — at least 5 of COVID-19 — and the survivors were found neglected and covered in filth.

Last year The Tyee ran a special series on dementia, 11 articles keying off informative books and interviews with experts intended to provide readers with a sense of the political, medical, social and personal realities related to severe memory loss. You can find the series here.

This spring, we decided to followup by seeing how caregivers and advocates are responding to the challenges of the pandemic. This is what they told us.

‘We do Netflix nearly every evening’

Adrienne Alford-Burt is executive director of the Village Langley, which opened last summer. She expressed thanks for The Tyee’s interest, but had little to say about the situation: “Other than to confirm that we remain COVID free, we are unable to provide comment at this time, as we are busy keeping our residents and team members safe in a very dynamic situation.”

A man who looks after his wife was among the interviewees in a Tyee article on the “hidden nation” of unpaid caregivers. Now that they are sheltering in place, he told The Tyee in an email, they are “coping” with the aid of neighbours and relatives:

“I hired my temporarily unemployed granddaughter to do the shopping.

“The neighbours have been wonderful, phoning before going to Costco or the grocery store enquiring about our needs.

“We walk on the forest trail 45-60 minutes every day it doesn’t rain. We have free weights and resistance bands which we use replacing our efforts at the gym.

“I have read all the books taken from the library before it closed. We have watched more TV than ever before in our lives. We do Netflix almost every evening.

“We have three jigsaw puzzles and do one every two to three days, taking them apart to be reassembled later. We have looked at our wedding pictures and other family albums. We will be looking at all the pictures on the computer.”

An online scrapbook

Pam Havens was running a unique program in North Vancouver’s Parkgate Community Centre, My Parkgate Break, last year. Its purpose was to offer a twice-weekly break when people with dementia could get together to sing songs, go for walks, have a meal and enjoy one another’s company for a few hours.

Of course it had to suspend operations, but early in April Havens launched Virtual My Parkgate Break. It’s an online scrapbook of songs, funny YouTube videos and suggested activities — a rough equivalent of the camaraderie of a face-to-face session. The site is updated twice a week, and accessible to anyone, not just those enrolled in the program. Havens told The Tyee the links should be easily used by a person with dementia with minimal involvement of a caregiver, and she’s received some encouraging feedback: “We’ve made a start.”

Last December, The Tyee talked with Dr. Linda Lee about the success of her growing network of MINT Memory Clinics, a new way to make access to dementia easier on the primary-care level. When we reached her this month, she replied at length:

“COVID-19 is an unprecedented health-care crisis and evidence has shown that older adults and those with chronic health conditions are among those most at risk. Many who use our MINT Memory Clinic services fit both of these categories, and it is a particularly stressful time for patients and caregivers that we work with.

“In Ontario, all non-urgent medical office visits have been cancelled in an effort to help protect older adults and reduce potential spread.

“At our MINT Memory Clinics in Kitchener-Waterloo, we have been going through our patient lists and actively reaching out by telephone or videoconference. We want to make sure persons living with dementia and their caregivers have adequate formal and informal supports, including proper supply of medications, access to groceries and essentials. We also want to check in on their physical and mental health during this difficult time. Are they managing their self-care needs? Have there have been any falls? Are they feeling lonely?

Increasing the risk of caregiver stress

“Social distancing, for many, can be synonymous with social isolation, and this is a real concern for persons living with memory difficulties and especially for their caregivers. Many of the families we support depend on day programs which are now cancelled. Caregivers are needing to do more, and this increases the risk of caregiver stress.

“By reaching out to our patients and caregivers, we also have an important opportunity to provide advice and guidance about COVID-19, including when and how to seek medical attention, and how to practice social distancing and proper hand hygiene.

“While the frontlines focus on addressing urgent issues related to the pandemic, we have a critical role to play in supporting older adults, ensuring their health is maintained, and helping to keep them at home and out of long-term care and hospitals. Our patients have been most appreciative of the outreach by team members they know and trust.”

On the national scale, the Alzheimer Society of Canada has faced a comparatively larger challenge. Rosanne Meandro, the society’s communications director, told The Tyee:

“The Alzheimer Society of Canada is developing web resources to help caregivers with family members at home as well as people with dementia living alone to maintain a sense of normalcy during this extraordinary time and to stay as safe and as healthy as possible.

“The Alzheimer Society has also convened a task force of leading clinicians and geriatricians from across Canada to develop dementia care best practices that preserve the dignity and autonomy of Canadians with dementia while supporting long-term care — and the health system at large — as medical and protective equipment become more scarce and decisions about triage and life-saving resources grow more complex. This group and recommended practices will serve to influence much-needed systemic change and elevate the standard of care that people with dementia rightly deserve.”

If a theme emerges across these responses, it’s that individuals and organizations alike are going online to try to restore lost face-to-face relationships. It isn’t easy; Pam Havens told The Tyee that many of the people in her program don’t understand why the face-to-face meetings have ended. But until the pandemic is well and truly over, dementia care will have to depend largely on online resources.

The dementia-care community will also have to deal with a society obsessed for now with COVID-19, while a host of other medical issues go ignored: diabetes, lupus, alcoholism, opioids, measles, mental health, and air pollution, to name just a few. In even a major pandemic or epidemic, the collateral damage is often worse than the major disease: in West Africa’s Ebola outbreak of 2014-16, more people died of measles than of Ebola itself.

Canada has been shocked and sensitized by the COVID-19 deaths in care facilities. If we can follow through on the “routine” diseases as well as COVID-19, those deaths will not have been entirely in vain.