If you can, read an excellent article written by journalist Katie Engelhart for the February 21, 2020 edition of The New York Times entitled, “We Are Going to Keep You Safe Even if it Kills Your Spirit.” Engelhart spent weeks this winter calling and zooming with numerous caregivers, geriatricians, researchers, social workers, nursing aides, and people living with dementia to try to understand how older adults living with dementia are experiencing the pandemic.
She was able to collect lots of anecdotes about pandemic behavior and data about disproportionate numbers of COVID-19 cases and deaths in nursing homes, but that did not satisfy Engelhart’s desire to know how older residents with dementia feel. She learned right away that when their daily routines and social rituals are destroyed, those living with dementia internalize these stressors and fall apart themselves, but she was surprised to find unequal impact. She cited a Japanese study published in the September 2020 “The Journal of Alzheimer’s Disease,” which showed that people living with “mild” Alzheimer’s disease scored higher on depression scales than people living with “moderate to severe” Alzheimer’s disease and were more likely to be depressed when they understood COVID-19.
There are the people who were previously able to self-groom, dress for the day, and attend enrichment programs, but have now retreated to their beds when told to stay in their rooms. They are stuck in psychological limbo because they can comprehend the terror posed by COVID-19 and are paralyzed by anxiety and depression. Others living with more severe dementia reflexively refuse to comply with restrictions, often defiantly and aggressively, without understanding why they are being asked to wash their hands, wear masks, eat meals in their rooms, socially distance from their friends, and not expect visitors. Both kinds of behaviors are deeply challenging. Caregivers agonize over how to care for residents or loved ones living with dementia, and about the health threat posed by the coronavirus and the staggering number of deaths it has caused, especially among people over the age of 65 and those living in care communities.
Engelhart interviewed Dr. Jason Karlawish, co-director of the Penn Memory Center and author of “The Problem of Alzheimer’s.” Karlawish agonized over the family caregiver visitation bans prevalent in US memory care communities during the pandemic because these caregivers play such a vital role in helping their loved one’s function on a daily basis and relieve overworked staff. He feels that blanket bans on caregivers visiting those living with dementia are as debilitating as taking away wheelchairs from people with mobility issues. Other geriatric professionals concur that strict lockdowns have been emotionally overly hurtful and suggest that family caregivers should have been deemed “essential” in their states and given vaccine priority to permit softer quarantines. At what point do memory care communities value physical safety at the expense of emotional balance? What price is being paid for this emotional unraveling?
Jill Harrison, an executive director of the National Institute of Aging’s IMPACT Collaboratory shared this anecdote with Engelhart: A resident living with dementia liked to dance by his window. One day he fell. The response from his care community was to turn off the music rather than find a way for him to keep dancing. Dr. Harrison refers to her disdain for “surplus safety” which she says: “aims to keep you safe even if it kills your spirit.” In all fairness, it is not that simple. Care communities must adhere to strict legal guidelines to protect residents from threats of harm and are mindful of potential liability for being lax in discharging their duties. Physical safety is also a top priority for families of residents. The only way to allow for individual freedom and group safety is to immunize fully this vulnerable population. While residents have been largely compliant thus far, staff have refused to be vaccinated in alarming numbers and younger family caregivers are still waiting for their shots in most states. The coronavirus is waning in care communities, but it is not under control yet.
In late February, the Governor of Ohio announced that federal guidelines allow “compassionate care” visits although nursing homes aren’t permitted visitors yet under COVID-19 rules. He explained that this exception can apply to a wide variety of situations involving difficulty coping and not simply allowing a visitor to someone who is dying. He gave some examples: a resident who is recently admitted and struggling to adapt; someone grieving over a death who needs encouragement to eat or drink; someone showing emotional distress like speaking less or crying more or showing changes in grooming habits; someone readmitted after an acute care admission to a hospital; someone who has been put on anti-psychotic, antidepressant, or appetite stimulant medications; or someone who is living with dementia which has dramatically progressed recently. Compassionate care visits could bring relief to residents and staff who are greatly in need.
Until then, family members can learn to communicate with their relatives who are living in memory care communities through video conferencing with the help of staff. You can see how Validation works in this YouTube clip here. Staff can get ideas for finding moments of peace despite their hectic days here. Take a breath. Recognize that the psychological health of an older adult is just as important as physical health. Dancing is healthier than taking medications; talking to a loved one increases the ‘happy hormones’ and can give an older adult more reason to live.
By: Fran Bulloff, VTI Board President
The Validation Training Institute (VTI) is a non-profit organization that advances knowledge, values, education and research rooted in the Validation method. The objective is to nurture respect, dignity and well-being in the lives of older adults experiencing age-related cognitive decline and their caregivers. Our vision for the future is that every older adult experiencing age-related cognitive decline, and their caregiver, can feel the joy and love of meaningful communication.