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.

Objectives Timely diagnosis of dementia is recommended in national strategies. To what extent is it occurring across Europe, what factors are associated with it, and what is the impact on carers emotions of quality of diagnostic disclosure? Methods/design Survey of family carers recruited through 5 Alzheimer's associations (Czech Republic, Finland, Italy, the Netherlands, and Scotland). One thousand four hundred and nine carers participated, 84% completing online. Fifty‐two percent were adult children, and 37% were spouses, with median age 57. Most (83%) were female. Results Nearly half (47%) of carers reported that an earlier diagnosis would have been preferable. Delaying factors included reluctance of the person with dementia, lack of awareness of dementia, the response of professionals, and delays within health systems. Recent diagnoses were no more likely to be considered timely, although professional responses appeared to be improving. Delayed diagnoses were more often reported by adult child carers and where the diagnosis was made in the later stages of dementia, or another condition had been previously diagnosed. In all countries except Italy, the diagnosis was shared with the person with dementia in the majority of cases. Timely diagnoses and higher quality diagnostic disclosure are associated with better adjustment and less negative emotional impact on carers in the short and medium term. Conclusions Although the study sample were well educated and likely to be in touch with an Alzheimer organisation, many continued to experience the diagnosis of dementia as coming too late, and further work on public awareness, as well as on professional responses, is needed.

Background: The COVID-19 pandemic poses enormous social challenges, especially during lockdown. People with cognitive decline and their caregivers are particularly at risk of lockdown consequences. Objective: To investigate psychosocial effects in (pre-)dementia patients and caregivers during second lockdown and compare effects between first and second lockdown. Methods: We included n = 511 (pre-)dementia patients and n = 826 caregivers from the Amsterdam Dementia Cohort and via Alzheimer Nederland. All respondents completed a self-designed survey on psychosocial effects of COVID-19. We examined relations between experienced support and psychosocial and behavioral symptoms using logistic regression. In a subset of patients and caregivers we compared responses between first and second lockdown using generalized estimating equation. Results: The majority of patients (≥58%) and caregivers (≥60%) reported that family and friends, hobbies, and music helped them cope. Support from family and friends was strongly related to less negative feelings in patients (loneliness: OR = 0.3[0.1–0.6]) and caregivers (loneliness: OR = 0.2[0.1–0.3]; depression: OR = 0.4[0.2–0.5]; anxiety: OR = 0.4[0.3–0.6]; uncertainty: OR = 0.3[0.2–0.5]; fatigue: OR = 0.3[0.2–0.4]; stress: OR = 0.3[0.2–0.5]). In second lockdown, less psychosocial and behavioral symptoms were reported compared to first lockdown (patients; e.g., anxiety: 22% versus 13%, p = 0.007; apathy: 27% versus 8%, p < 0.001, caregivers; e.g., anxiety: 23% versus 16%, p = 0.033; patient’s behavioral problems: 50% versus 35%, p < 0.001). Patients experienced more support (e.g., family and friends: 52% versus 93%, p < 0.001; neighbors: 28% versus 66%, p < 0.001). Conclusion: During second lockdown, patients and caregivers adapted to challenges posed by lockdown, as psychosocial and behavioral effects decreased, while patients experienced more social support compared to first lockdown. Support from family and friends is a major protective factor for negative outcomes in patients and caregivers.

This study provides insight into circumstances that facilitate or hamper living at home with advanced dementia until the end of life. Interviews were held with 11 bereaved family caregivers, two general practitioners, and nine case managers, related to a total of 12 persons with advanced dementia who had recently died. Persons with dementia who lived at home until the end of life often had family caregivers that received timely support from professionals and their social network. In the cases where the person with dementia could not live at home until the end of life, safety issues, severely challenging behavior, and high care dependency of the person with dementia played key roles. Case management and a continuous process of advance care planning will improve the chance that the end-of-life setting is in accordance with the key values and needs of both the person with dementia and family caregivers.

Background:The COVID-19 pandemic poses enormous social challenges, especially during lockdown. Recently, the second lockdown started in the Netherlands. We aimed to investigate and compare the psychosocial effects of corona measures during lockdown in memory clinic (pre-)dementia patients and their caregivers.