By Ila Schepisi and Pamela B. Teaster
Schepisi is director, Virginia Tech Adult Day Services. Teaster is professor and director, Virginia Tech Center for Gerontology.
When the Commonwealth of Virginia went into lockdown, one reason was to protect the most vulnerable people living in facilities, isolating them from each other and from the outside. An image widely used was of residents and family members pressing their hands against glass. One commentator said that older people were “red meat for the virus.” From limited information that we think we know, more than 38,000 nursing home residents and staff have died from the virus. Early on, deaths of people in nursing homes were not counted. In the blur of early COVID-19 information, a headline warned that older people in facilities were being airbrushed out of existence.
As the coronavirus spread, caregivers of people with dementia still living at home were faced with two choices: (1) isolate to protect the physical health but risk a decline in cognitive function that could linger for years and physical declines that leave them weaker and at risk for nursing home placement, OR (2) continue in the community enjoying quality of life and functional maintenance but risk contracting a novel disease that could kill them in a matter of weeks. Residents of long-term care facilities didn’t get a choice. Administrators locked down under the advisement of state and local government, believing that the drastic measure was critical to stop a potential and horrific spread.
At the beginning of the pandemic, the U.S. and other countries were grossly unprepared. At the foothills of the virus, there may have been a justified/expected time to lockdown and protect vulnerable older adults at all costs. However, like people who are free to walk outside, though physically distant, we suggest that it is time to begin conversations and develop comprehensive and safe strategies to relax the lockdown for (at least some) older adults living in facilities or attending adult day care. They are, after all, residents and citizens, not prisoners.
Like their younger counterparts, Older adults have the right to choose where they live and to direct their own destiny and help others through the pandemic—for example, serving as medical professionals, as grandparents, and as friends to others. For some older adults, the Impact of isolation on mental and physical health can be as dangerous as contracting a respiratory virus. When older adults are isolated from the outside world, a litany of events can occur: falls, general weakness, poor nutrition, lack of communication, depression, cognitive decline, and weight loss.
Older adults with the capacity and/or their appointed caregivers on their behalf should be able to choose quality of life over quantity of life. At least for older participants in our adult day services, most with dementia have designated a Do Not Resuscitate Order (DNR). These older adults recognize that they have more time behind them than in front of them, and that the years ahead will likely continue in a downward progression of dependence. They don’t want a life prolonged in a suffering state. We ask the question and invite the conversation—could decline from isolation be prolonging life in a suffering state?
Strict medical models of long-term care provision presume physical safety above all else and take all possible measures to prevent death. We stress that not all older adults want all that can be done for them. Laws, research, and years representing the best thinking possible have evolved to create patient and resident rights providing the freedom to direct personal options for health care and habilitation.
We recognize that far too many people are dying alone in care facilities, deprived of the company of friends and family. We honor and applaud the valor of those providing care at facilities. Some care providers gave their lives to protect older residents. While healthcare teams are dedicated, present, and heroically doing their best, they cannot replace the presence of family and those with whom an older adult has shared a lifetime.
Continued isolation cannot be the “new normal;” humans, after all, are social creatures. A lockdown cannot continue for months and months on end. Should additional waves of the virus spread across the nation, swift and complete lockdown cannot be the knee jerk reaction. We call for the creation of innovative new plans that are taken seriously, rehearsed, ready, and in place so that we have better options for current and future emergencies. We assert that, by developing better plans now, while we are slowly opening back up, we can reduce the experience of hands pressed against glass.