Written By: Rudi Lamy, MLS, MAS, Consultant to the Peter Lamy Center on Drug Therapy and Aging
While plenty of literature exists that highlights the feelings of isolation often experienced by caregivers of patients with chronic illnesses, there is an interesting lack of information available about the effects of the COVID-19 pandemic and the subsequent quarantine and social isolation on patients themselves, particularly those with dementia. In fact, no books, articles, or other writings that I reviewed on my own spoke directly to the effects of quarantine or isolation on patients with dementia.
As a result of the paucity of published material, I’d like to begin this post using my personal observations, speculations, and suppositions. I ask you to bear with me as you read, as I am one of those caregivers upon whom this year’s quarantine and the resulting social isolation have had an effect.
Personal Speculation, Supposition, and Analysis
As you may recall from my earlier posts, my wife is a patient with dementia. She is a resident of a memory care unit in an assisted living facility near our home. Before the COVID-19 crisis, family members of residents were provided with the security codes to access the facility’s main entrance and their loved one’s room. Family members could come and go quite easily. The sign-in sheet was unmonitored and signed using the honor system. However, since the COVID-19 pandemic began, the facility has implemented several new safety measures in accordance with local quarantine restrictions — everything from requiring visitors to sign-in in the presence of a staff member to completely isolating residents in their rooms. Contact between the outside world and my wife has consisted of only video calls (Facetime) and phone calls made by the staff or from the private phone in her room. Gifts, cards, and other items must now be sent to her through the post office, and family members have exchanged emails to help ensure that other messages are passed along. Doctors’ visits have been held over Zoom whenever possible, with the assistance of the facility’s staff caregivers.
While all of these precautions are critical to help ensure the continued health and safety of both patients and staff at the facility, I believe the ongoing quarantine and isolation — further abetted by the staff members’ interactions becoming a bit more impersonal due to the need for them to wear and use an increasing amount of personal protective equipment (PPE) — has had the deleterious effect of enhancing the progression of her dementia.
A Planned Change Takes an Unplanned Toll
Recently, my wife made a change of residence at the assisted living facility, moving from assisted living to full-time nursing care. The move was, unfortunately, complicated by an off-site doctor visit. Because she left the facility, she had to spend extra time in quarantine before being assigned a permanent room.
After the relocation, I noticed the unusual behavior she had been displaying while in assisted living quarantine had become even more pronounced in nursing care. When speaking with her, it seemed that her ability to determine day, date, time, and place had been compromised at a rate that appeared much faster than I noticed while she was at home. Her short-term memory seemed to be failing much more quickly, and long-term memories are impinging upon daily experiences more often. She also started to experience an enormous amount of confusion — not delusions or hallucinations, just confusion. She seems unable to understand, process, and retain narratives.
In short, it seemed to me that the necessary measures put in place to protect her physical well-being were indeed worsening her mental state at an ever-quickening pace.
My observations are, of course, only my observations. But, similar heartbreaking anecdotal evidence has also been described elsewhere. The same accelerated deterioration, frustration, and plaintive pleas for help and escape are vividly noted in an online article from the American Association of Retired Persons (AARP) titled “Is Extended Isolation Killing Older Adults in Long-Term Care?”
I consulted health care professionals who were familiar with my wife and was told that there was a very good chance that her condition was being influenced by her environment. Of course, there remained the possibility that her dementia was progressing, but the consensus seemed to be that once she settled in and began a regular routine much of the quarantine-induced behavior would fade.
On the Search for Data
Once I concluded that I had exhausted my resources in searching for appropriate literature on the effects of quarantine and social isolation on patients with dementia, I did what any self-respecting retired librarian would do — I asked for help. Assistance came from the Health Sciences and Human Services Library (HS/HSL) of the University of Maryland, Baltimore.
One editorial uncovered by the HS/HSL in the International Journal of Geriatric Psychiatry speaks to the connection between sensory impairment, loneliness, social isolation, and dementia. My wife has been in isolation more often than you might expect, as she has had to leave the assisted living facility to go to a doctor’s office as well as make the move from assisted living to full-time nursing care. In my estimation, she seems to have more than met any criteria that might be applied to define her days as those of “loneliness, social isolation,” which would almost certainly have an adverse effect on her dementia.
Another article published in the Archives of Gerontology and Geriatrics refers to patients who must endure the predicament of quarantine and isolation in even harsher terms. Its author notes, “For those residents, nursing homes may be considered as a jail during containment, with dementia residents confined into their room. Even more sadly, contrary to inmates, residents with dementia will not have any understanding of the situation.” Between my wife’s seemingly scrambled memories and the delusions she has experienced, I honestly believe this to be an awfully accurate assessment.
There are a couple of other published pieces that the HS/HSL found that also speak directly to isolation and dementia. In the Lancet, Huali Wang notes that, without face-to-face visits with their families and a lack of group activities, residents in assisted living facilities become more socially isolated. In a Frontiers in Psychiatry paper that focuses on very elderly individuals (85+), authors Susanne Röhr et al., indicate that studies show social isolation for people in that age range is a marker for “cognitive decline and a higher likelihood to develop dementia.” Imagine what it might do if the resident has already developed dementia. There is even a longitudinal study published in Psychological Medicine that echoes this data.
Understanding How the Data Fits into My Lived Experience
In 1940, T.S. Eliot wrote, “As we grow older the world becomes stranger, the pattern more complicated.”
Perhaps life really is stranger and more complicated for our average caregivers, family members, and loved ones. But imagine then, if you will, what it must be like for patients with dementia, patients in quarantine, and patients in isolation — those who see caregivers covered in PPE and who are not permitted to engage in socialization, games, music, or even watching television – not to mention, no visits from family and friends.
As I reviewed the data shared with me by the HS/HSL, it appears an exact match to my own, albeit unscientific, observations. What can I do from a distance of six feet or more except hope that all of us who work to care for those who need it can do enough to hold back the ravages of time in isolation?
If you are planning to move your loved one to a different room or facility, be prepared to see some changes in their behavior. Keep watch. Report what you see to their physician, but don’t panic. Those changes may very well be due to the change of scenery. Once they are used to their new environment, you might even see a return to pre-pandemic behavior.
Best wishes, good luck, and good health in these challenging times.
Thanks for reading,
- “Losing my glasses…losing my mind”; Perspectives on sensory impairment, loneliness, social isolation and dementia.” Intl J Geriatr Psychiatry. 2020;35335-337.
- Letter to the Editor. Bouillon-Minois, Jean-Baptiste. “Coronavirus and quarantine: will we sacrifice our elderly to protect them?” Arch Gerontol Geriatr. 2020 September-October; 90: 104-118.
- Wang, Huali; Li, Tao; et al “Dementia care during COVID-19.” Lancet. 2020. 11-17 April; 395 (10231): 1190-1191. Published Online 2020 Mar 30. Doi: 10. 1016/S)140-6736(20)30755-8.
- Röhr, Susanne; Löbner, Margrit; et al. “Changes in Social Network Size are Associated with Cognitive Changes in the Oldest-Old.” Frontiers in Psychiatry. 2020; 11: 330; Published online 2020 May 4. doi: 10.3389/fpsyt.2020.00330.
- Yu, Bin; Steptoe, Andrew; et al. “Social isolation, rather than loneliness, is associated with cognitive decline in older adults: the China Health and Retirement Longitudinal Study.” Psychol Med. 2020 Apr 27; 1-8. doi: 10.1017/S0033291720001014.
- Familiar Quotations. John Bartlett. Fifteenth and 125th Anniversary edition. (Boston:Little Brown. 1980) T.S. Eliot. 807:23.