Abstract

Background: The recent COVID-19 pandemic is not only a major healthcare problem in itself, but also poses enormous social challenges. Though nursing homes increasingly receive attention, the majority of people with cognitive decline and dementia live at home. We aimed to explore the psychosocial effects of corona measures in memory clinic (pre-)dementia patients and their caregivers.Methods: Between April 28th and July 13th 2020, n = 389 patients of Alzheimer center Amsterdam [n = 121 symptomatic (age = 69 ± 6, 33%F, MMSE = 23 ± 5), n = 268 cognitively normal (age = 66 ± 8, 40% F, MMSE = 29 ± 1)] completed a survey on psychosocial effects of the corona measures. Questions related to social isolation, worries for faster cognitive decline, behavioral problems and discontinuation of care. In addition, n = 147 caregivers of symptomatic patients completed a similar survey with additional questions on caregiver burden.Results: Social isolation was experienced by n = 42 (35%) symptomatic and n = 67 (25%) cognitively normal patients and two third of patients [n = 129 (66%); n = 58 (75%) symptomatic, n = 71 (61%) cognitively normal] reported that care was discontinued. Worries for faster cognitive decline were existed in symptomatic patients [n = 44 (44%)] and caregivers [n = 73 (53%)], but were also reported by a subgroup of cognitively normal patients [n = 27 (14%)]. Both patients [n = 56 (46%) symptomatic, n = 102 (38%) cognitively normal] and caregivers [n = 72 (48%)] reported an increase in psychological symptoms. More than three quarter of caregivers [n = 111(76%)] reported an increase in patients' behavioral problems. A higher caregiver burden was experienced by n = 69 (56%) of caregivers and n = 43 (29%) of them reported that a need for more support. Discontinuation of care (OR = 3.3 [1.3–7.9]), psychological (OR = 4.0 [1.6–9.9]) and behavioral problems (OR = 3.0 [1.0–9.0]) strongly related to experiencing a higher caregiver burden. Lastly, social isolation (OR = 3.2 [1.2–8.1]) and psychological symptoms (OR = 8.1 [2.8–23.7]) were red flags for worries for faster cognitive decline.Conclusion: Not only symptomatic patients, but also cognitively normal patients express worries for faster cognitive decline and psychological symptoms. Moreover, we identified patients who are at risk of adverse outcomes of the corona measures, i.e., discontinued care, social isolation, psychological and behavioral problems. This underlines the need for health care professionals to provide ways to warrant the continuation of care and support (informal) networks surrounding patients and caregivers to mitigate the higher risk of negative psychosocial effects.

Highlights

  • The recent COVID-19 pandemic is a major healthcare problem in itself, and poses enormous social challenges

  • We aimed to evaluate the psychosocial effects of corona measures in terms of discontinued care, behavioral and psychological effects in patients with predementia and their caregivers living at home

  • (2) Patients included in the DEvELOP study—all with a diagnosis of dementia with Lewy bodies (DLB), i.e., symptomatic patients; and [3] symptomatic patients included in the follow-up study of ABIDE-PET [12, 13]

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Summary

Introduction

The recent COVID-19 pandemic is a major healthcare problem in itself, and poses enormous social challenges. The recent COVID-19 pandemic is a major healthcare problem in itself, and poses enormous societal challenges [1]. There is a large contingent of memory clinic patients who experience cognitive decline, but perform normal on cognitive testing, i.e., subjective cognitive decline [8]. In these pre-dementia phases where patients are still cognitively normal but worried, the consequences of the corona crisis may cause an unbalance in mental health

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