Living with Dementia During the COVID-19 Pandemic: A Nationwide Survey Informing the American Experience

INTRODUCTION

More than 6 million Americans have Alzheimer’s disease or related dementias (ADRD) and approximately 85% live in the community [1, 2]. With prevalence in the United States (US) expected to near 14 million by 2050, ADRD has been identified as a rising epidemic with urgent need for intervention [1, 3]. Alzheimer’s disease is characterized as a progressive and irreversible deterioration in cognitive ability negatively impacting one’s ability to live and function independently [4]. Decreased cognition paired with neuropsychiatric symptoms and physical dependence often leads to challenging situations for caregivers who are experiencing concurring lifestyle/role changes of their own.

Persons living with dementia (PLWD) regularly rely on informal/unpaid caregivers for daily support and safety and such support comes at an extraordinary cost to the caregiver. In the US, there are approximately 15.7 million informal or family caregivers of PLWD that furlough their lives to provide such support [5]. Reports suggest that as many as 80% of caregivers of PLWD experience high levels of stress [6] and nearly 40% experience significant depressive episodes [7]. Female caregivers, those going through multiple life events/changes, and caregivers lacking significant social networks have the highest risk for CG-related distress [8] which is often described as the result of a mix of circumstances, experiences, responses, and resources [9].

On January 20, 2020, the Centers for Disease Control and Prevention (CDC) reported the first laboratory-confirmed COVID-19 in the US; by March 11th the World Health Organization declared a global pandemic and US states began to shut down to prevent spread [10]. As of November 2022, COVID variants remain within the US and aging/vulnerable adults are encouraged to continue preventative measures to protect themselves [11].

People with dementia and their caregivers have historically been among society’s most vulnerable. Rodeheaver & Datan [12] surmised “As probably one of the most excluded groups in society, people with dementia experience the double jeopardy of being (aging) people with a cognitive impairment” (p.1). COVID-related restrictions to manage the pandemic in the US have amplified this inequity. For more than 2 years, PLWD and their caregivers have been asked to isolate from support systems, change routines, and decrease service use [13, 14]. Prolonged isolation can further feelings of loneliness, behavioral disruptions, and acute events, all while medical care is less accessible [14]. PLWD are less likely to adhere to precautions and have a markedly greater risk of experiencing a COVID infection than peers [15]. Mortality in infection is 40% higher than in peers as well, with 20% of PLWD with COVID living less than 6 months [16].

Despite the many negative outcomes associated with the COVID-19 pandemic, some have reported positive aspects from the caregiving experience in this time. As reported by Tulloch, McCaul, & Scott [17], mandated isolation allowed for a strengthened connection for the person living with dementia and their caregiver and a renewed/greater sense of meaning in the caring experience. Though present research suggests more obstacles than opportunities remain.

METHODS

RESULTS

DISCUSSION

The purpose of this study was to increase understanding of the influence of the COVID-19 pandemic within the dementia community in the US. Our findings coincide with work by Canevelli et al. [20] that has suggested that the pandemic had profound impact on persons living with dementia and those who care for them. Despite the progressive nature of the disease, evidence increasingly suggests [21] a hastened cognitive decline during this period, as did our results with a mean of more than two new symptoms occurring within the relatively short public health emergency period and generally surpassing historical prognosis found in longitudinal studies [22]. It is also recognized that within a variable, progressive disease and in an observational study design, there may be additional variables that account for this numeric change beyond the public health emergency.

More nuanced information is coming to light regarding the increase in neuropsychiatric symptoms, in part, secondary to measures of physical and social isolation [23]. Pandemic-related isolation also seems to have hastened motor skill decline nationally [24], which is reflected in our US-based sample. As reported by Rainero et al. [19], we also found a signal of a protective mechanism in the pre-pandemic physical ability of the person living with dementia (as reported by the ability to leave the house with/without assistance) in preventing significant increases of neuropsychiatric symptoms, suggesting that there is nearly an 80% decrease in the odds of increased neuropsychiatric symptoms with heightened reported physical ability. The reported challenges of the healthcare system at large to provide hospitalization services, urgent and routine dementia services, and residential services signals a significant need to care for this growing community.

Caregiver compromise throughout the public health emergency was also notable and amplified. As shared in work by Greenberg et al. [13], isolation leads to higher-hour care which then leads to increased levels of housework, and increased challenges in coordinating care within and outside of the home. This was reflected in our results, signaling barriers in access and receipt of care. Caregivers are then dually disadvantaged due to the need to isolate themselves and the person living with dementia to lessen the risk of transmission and mortality, while paying a high price in their own social, mental, and physical well-being.