Navigating a Global Pandemic with Dementia: Worlds crashing within and without

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Patients with dementia who live in nursing homes are experiencing extreme isolation as their loved ones are often forbidden from seeing them. Illustration by Dionel de Borja.

As we approach nearly one year of quarantine, social distancing and precautionary measures that have changed nearly everyone’s quality of life, it is easy to forget how other life factors that we individually do not experience can make one’s days even more challenging. It has been an era of confusion for everybody, but imagine if you had to relive the fear of hearing about COVID-19 for the first time over and over, blanketed by a fog in which you forgot your loved ones, your past and how the world operates. 

According to the World Health Organization, around 50 million people worldwide have some form of dementia, with Alzheimer’s disease being the most common form. In 2014, 5 million patients in the U.S. alone had Alzheimer’s disease or another related dementia. While this condition primarily affects older populations, it is not a normal part of aging and is rather a devastating disease with horrible physical and psychological effects such as deterioration of thinking, memory, ability to perform daily activities and behave in an effective manner. We have spent a lot of energy trying to protect our elders from getting sick, as they are the most likely to experience severe symptoms or death from COVID-19, but unfortunately overlook concerns about their quality of life as we fight this pandemic.  

In particular, patients with dementia who live in nursing homes are experiencing extreme isolation as their loved ones are often forbidden from seeing them. Some homes have arranged for residents to call or video chat with their family and friends, but nothing can beat a hug or kiss from a husband, a daughter, or a friend. Group activities in nursing homes to keep the residents busy and foster a sense of community have been restricted, keeping people from building new relationships. Many patients are highly non-compliant with mask-wearing and social distancing as they often do not understand that a pandemic is going on and why they must change their behavior.  

Fear and isolation have severely impacted the mental health of patients with dementia. According to a survey done by Alzheimer’s Society in the UK, only 1 in 5 reported no difference in their dementia since the beginning of lockdown. The most common symptoms reported to have increased were memory loss, concentration difficulties and restlessness. 

Now more than ever, we must work hard to care for our elders and keep them as comfortable as possible during this difficult time. Upon interviewing two physical therapists with experience in treating patients with dementia, both claimed that allowing a patient’s family members to be vaccinated early would speed up the process of allowing family visits and drastically improve the psychiatric health of the individual. While many have strong emotions surrounding the priorities of vaccine distribution, this framework would drastically improve these patients’ quality of life and mental health, which is often a matter of life and death in a person’s twilight years. 

In addition, extra staff in nursing homes could be provided to facilitate communication between patients and the outside world, helping them navigate technology and other logistics. Organizations to reach out to those with dementia who do not reside in nursing homes would also be helpful to combat loneliness and provide practical help with everyday tasks. None of these objectives can be accomplished by a single individual, but it is in one’s power to lend an ear and hand to a person in a local community who may be struggling with memory loss and other cognitive difficulties. Making someone’s day is a powerful force for both involved. 

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