Abstract
Background:
Caring for someone with Lewy Body Dementia (LBD) is mentally and physically taxing. The Activity Theory of Aging associates reduced activity levels with lower life satisfaction in older adults. With the onset of the coronavirus-19 pandemic (COVID-19), and less activity for many older adults, LBD caregiving burden may have increased along with decreased life satisfaction.
Objectives:
To determine the unique experiences, perceptions, attitudes, and beliefs of LBD caregivers regarding activity and its relationship to life satisfaction in the early months of COVID-19.
Methods:
A Focus Group of five LBD Caregivers and one Care Recipient was held over Zoom in October 2020. Participant responses were analyzed using NVivo 12 software, using the framework of the Activity Theory of Aging to guide analysis.
Results:
Main themes revealed the poignance of experiences of navigating COVID-19 while caregiving, caregiver concerns, and the care recipient concerns. Subthemes highlight social isolation and reduced activity, motor/cognitive/emotional decline, and related coping strategies to improve life satisfaction.
Conclusion:
Caregiving experiences were impacted by activity level, reflecting the Activity Theory of Aging. Future studies with larger samples on the extended COVID-19 impact for LBD caregivers are needed.
Introduction
Lewy Body Dementia (LBD) is an umbrella diagnosis for degenerative, dementia-related diseases in older adults, including Dementia with Lewy Bodies (DLB) and Parkinson’s Disease Dementia (PDD/PD). LBD is the second most common dementia after Alzheimer’s Disease (AD), but may have greater health impact due to increased motor-cognitive dysfunctions, sleep disorders, behavioral and emotional changes, autonomic symptoms, etc. (Capouch et al., 2018; Galvin et al., 2010). AD medications like cholinesterase inhibitors used in treating DLB and PDD have varying success, while PD-specific medications like carbidopa-levodopa have adverse effects including hallucinations, sleep disturbance, and confusion (Capouch et al., 2018). Health literacy, language, sociocultural, financial, and other barriers prevent access to effective treatments and healthcare.
Caregivers play a critical role in the medical community as non-healthcare workers outside the hospital. However, LBD patients’ perpetual needs, higher costs, and long list of symptoms increase the difficulty of LBD caregiving (Chen et al., 2019). Caregivers face increased stress, anxiety, and decreased social interactions, ultimately affecting personal health in forms like depression and identity crisis (Galvin et al., 2010).
Previous studies found social support networks, familial and peer relations, and physician-led education as helpful support for AD caregivers (Galvin et al., 2010), but those may not be applicable to LBD due to higher disease progression rate and caregiver-dependency. Few studies and support programs address LBD caregivers.
The Activity Theory of Aging characterizes the positive relationship between the level of activity and life satisfaction in older adults. The theory follows that: Young adults establish activities that satisfy their psychosocial needs and bring personal happiness and life satisfaction, which are needs that persist through older ages (Knapp, 1977). However, in addition to biological changes, social norms, and economic factors, caregiving poses new barriers to older adults being able to engage in their perhaps cherished activities—both related and unrelated to caregiving—affecting their psychosocial wellbeing and other aspects of health.
Initially, the focus of this study was on attitudes, perceptions, beliefs, and intentions of LBD caregiving, and its alignment with the Activity Theory of Aging as experienced by the caregiver and the care recipient. However, the infectious respiratory disease coronavirus-19 (COVID-19) pandemic occurred in March 2020, which presented numerous challenges to daily life—including a shortage of daily necessities, nationwide panic, and delays in public services, especially in the medical field—and restricted activity engagement. Caregiver burden may have increased significantly, as 80% of those who were hospitalized due to COVID-19 in early 2020 were 65 years old or older (Mueller et al., 2020) and access to already-limited caregiving support resources decreased. However, the impact of COVID-19 on LBD caregiving has not been well-described from the lens of the Activity Theory of Aging.
Therefore, we conducted a focus group with LBD caregivers to gather insight into the experiences of LBD caregivers from the perspective of coping 6 months after COVID-19 outbreak (Bay et al., 2023), while using the Activity Theory of Aging to guide analyses and interpretation of the emergent themes.
Methods
The Emory University institutional review board (IRB) reviewed and approved this protocol. All participants provided informed consent before participating. They were recruited from previous study registries, support groups for LBD, and by word of mouth. The focus group conversation was held on October 10th, 2020. A semi-structured guide probing caregiving experience was administered by the PI and coordinators to participants. Focus group questions were:
Describe your role as a caregiver and tell us about your caregiving situation.
Tell us how your situation has changed with the COVID-19 pandemic.
What strategies do you think helped you as a caregiver and/or your care partner cope with the difficulties that accompany Lewy Body Dementia and/or Parkinson’s, during the pandemic?
What advice would you give someone who has recently become a caregiver or has been recently diagnosed with PD or LBD, specifically, to cope with the pandemic?
If you needed care, what would/do you want your care partner to know?
What concerns do you have going forward in general and during the ongoing pandemic?
The conversation was held and recorded on Zoom, later transcribed by Landmark Transcription Services. NVivo 12 software was used to facilitate data organization and analysis, creating a codebook of recurring themes from participant responses (See Table 2). All coders independently coded the transcript, then the primary coder reviewed and reconciled coding differences with agreement by three secondary coders and PI. Participant identifiers here, unrelated to study identifiers, are a unique alpha-numeric code: letter “F” followed by a number, for example, “F2.” We administered a Project Health Demographic survey to record race/ethnicity, age, gender, medical conditions, etc., and a general quality of life rating on a 100-point scale (100 correlating to very high).
Results
We recruited eight participants including six caregivers and two care recipients. However, three were unable to attend due to weather conditions causing power outage. As such, two care recipients (F4 and F5) and three caregivers attended, F3 and F4 being a caregiver-recipient dyad. Demographics are reported in Table 1.
Demographics of the Focus Group Consisting of Caregivers and Care Recipients.
Eighty-three minutes and 93 total coded references were collected, reflecting the conditions, reactions, and beliefs of caregiving and its predicted changes with the pandemic. Main themes revealed by the focus group reflect distinct and characteristic takeaways from the COVID-19 experience, regarding impacts on activity level related to the act of caregiving, and how the experience altered the daily lives, attitudes, and perception of life satisfaction for the caregiver and care recipient. Subthemes under each main theme list the specific experiences of each group. See Table 2 for full results.
Thematic Analysis of Focus Group Response.
Importance of Retaining Means of Socialization in Caregiving During COVID-19
Positive responses revealed new methods to navigate social activity during COVID-19. While F1 utilized online platforms like Zoom, F2 took cautionary steps like “trying to sit outside [at restaurants]. . .going at off hours, not ever going into a crowded place.” Multiple support systems helped: Friends and family (F3), care facility (F2), and support groups for similar struggles, teaching that the experience is “unique to the disease” (F1).
Struggles included decreased care support and social isolation. F3 found support groups “decreasingly supportive or informational” because of the lack of relevance: “No one in either of the groups [. . .] have the [matching] level of cognitive decline,” which was the dominant problem. Social activities were heavily restricted: Guests were prohibited in care facilities (F1) and residents “couldn’t even cross the street [for months] without” facing two-week quarantine (F2).
Caregiver Mental Health: Navigating Strain and Resilience
Caregivers continued to socialize via “distance-masked walks. . . and talk” with friends (F3) and care community (F2), allowing time and care for oneself (F2). Caregivers cultivated: caregiving traits like patience (F1 and F2) and emotional intelligence; lessons like “make allowances,” “look for help from others,” (F1), “put yourself in your loved one’s shoes” (F3), “no regrets policy,” (F3) and “take every opportunity. . .Dwell on the positive” (F1); and beliefs like distinguishing the disease from the affected person (F1, F2) and giving purpose to caregiving as fulfilling self-purpose, reward (F2), and gratitude for one’s “own health and. . .love and support [received]”: F3: Celebrating what you can do. We dance around our living room to music and look like idiots, but we try to keep moving. [. . .] Just absolutely seize the day [. . .] and do what you can now.
Caregivers experienced stress due to extended social isolation (F1 and F3) with “absolutely no breaks” (F3), and limited time for self-care (F1), comparable to a 24-hour-a-day job every day (F5).
Care Recipient Decline and Adaptation: A Multi-Dimensional Experience
Care recipients developed strategies for communication and expression—like writing notes (F1)—but faced more struggles such as: difficulty in “getting out of a chair and then remaining stable, not stuttering” due to 3-month quarantine (F2); cognitive, emotional decline in feeling “anxious” (F1) and resigned about COVID-19 (F4); troubles with call initiation, response (F1), and visual-auditory dual-tasking in videocall (F4); and communication issues (F1).
Discussion
COVID-19 and caregiving reflect the Activity Theory of Aging: LBD caregivers and care recipients found substitute activities beyond COVID-19 and caregiving restrictions. For both, the degree of activity engagement was positively correlated with personal wellbeing, being less adversely affected by COVID-19 and caregiving.
Social interaction was the core topic overall: Caregivers and recipients alleviated burden mainly via continuing social interactions through restrictions. Social networks may facilitate access to healthcare and healthy behaviors and protection against cognitive decline (Gardener et al., 2021). Despite so, social isolation was inevitable. The lack of LBD-specific support groups and provider knowledge already delayed support (Zweig & Galvin, 2014), and then COVID-19 eliminated support programs in general. Social isolation causes anxiety, loneliness, and boredom in caregivers, leading to higher levels of caregiver stress and burnout—our findings and later studies on periods after the focus group demonstrated so (Stacy et al., 2022). In alignment with the Activity Theory of Aging, decreased social interactions and activities in caregivers, along with the excess burden of caregiving responsibilities, caused more stressed, less happy caregivers.
Some participants enjoyed time by oneself—though seemingly contrary to the theory with decreases in social activity, it should rather be seen as the caregiver’s break from responsibilities than from social activity. For the care recipient, transient loneliness can provide a protective effect against cognitive decline, improving personal health and mood (Karska et al., 2024). Equilibrium is important in the Activity Theory of Aging, as excess activity is equally harmful to life satisfaction and health in older adults.
Physical activity also classifies as activity in the Activity Theory of Aging, whose decrease was related to motor physical decline. However, the specific extent of the exacerbation of both motor and cognitive decline caused by the effects of COVID-19 is uncertain, and further research is needed.
COVID-19’s restrictions on social and physical activity limit a lifestyle that practices and maintains communication and executive function skills, which exacerbates cognitive decline as LBD affects the communication and language areas in the brain (Capouch et al., 2018). The higher risk in older adults for severe illness and even death due to COVID-19 (Mueller et al., 2020) posts a negative cycle of anxiety, fear, emotional dependency, and resignation, hindering activity participation. Cognitive decline in LBD patients limits their use of technology thus of social opportunities, further exacerbating conditions. The Activity Theory of Aging reflected this truth: the less socially involved, the greater cognitive and mental health deterioration, and lower life satisfaction for these individuals.
Limitations and Future Directions
The study has several limitations. A larger sample size is necessary for extensive insight into LBD caregiver experience during the pandemic. Participants were different in race, age, level of education, and sex, which may have affected the conclusions of this study but also may enhance the generalizability. Future studies addressing these limitations can investigate the lasting impacts of COVID-19 in the coming years. Studies can be conducted to aid future design of an LBD support program while taking the impacts of COVID-19 or other pandemic-like scenarios into consideration.
Conclusion
COVID-19 impacted LBD caregiving, caregivers, and care recipients via social isolation and decreased care support, struggles in communication, technology adaptation, and motor-cognitive decline; existing social support and newly developed mindsets and social strategies benefitted.
The Activity Theory of Aging mirrored LBD caregiving: The need to maintain cherished activities encouraged care dyads to develop resilience. Caregivers worked around COVID-19 obstacles, found substitutes to restricted activities, and attempted to reduce burden and stress through social interactions. Consequently, care dyads were more likely to express life satisfaction during COVID-19, as evidenced by the adoption of positive mindsets. This research has important implications for informing solutions to tackle the lasting impacts of COVID-19 and future pandemics on LBD care dyads, specifically in development of LBD care support and educational programs, to encourage healing and growth in the post-pandemic era.
Footnotes
Acknowledgements
The authors would like to sincerely thank the caregivers and care recipients who generously shared their time, stories, and experiences with us. The authors are also grateful to Dr. Madeleine Hackney and her lab for their endless and unconditional guidance, feedback, and support. We would also like to express appreciation for Allison Bay for her assistance in hosting the Focus Group. Finally, the authors would like to thank Guy Harris, Cecelia Lofton, Emma Rose Brown, Emma Macmanus, Sara Popofsky, and Shawo Lhabdon for their support in the coding process.
Author Contributions
AC and MEH (PI, Principal Investigator) conceived of and designed the experiments. MEH carried out focus group interview with participants. AC coded the interview and performed initial analysis on the data. AC carried out statistical analysis of clinical data, generated tables, and developed preliminary themes. AC wrote content on thematic analysis of Activity Theory and recurring experiences. AC furthered data analysis and wrote the draft of the manuscript. AC and EBK edited the manuscript and developed final themes. MEH provided final review.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The study was funded by the Emory University Roybal Center for Caregiving Mastery (P30AG064200), the Emory University Center for Health in Aging, and by the Parkinson Foundation.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Data Availability Statement
Data is available upon request and stored in a protected network.
IRB Approval Number
IRB00080676.