Project description:BackgroundMultiple efforts have been taken across the world to bridge gaps in evidence and provide recommendations for dementia care and caregiver support during the COVID-19 pandemic. We aimed to review the available literature on measures used to alleviate the negative impacts of the pandemic on dementia care.MethodsWe searched three databases: PubMed, CINAHL and PsycINFO to identify studies that described strategies that were recommended or taken to provide care and support to persons with dementia and their caregivers during the COVID-19 pandemic.ResultsWe included a total of 37 papers, originating from high, middle and low-income countries. We also included 6 papers exploring safety of COVID-19 vaccinations. Infection prevention recommendations predominantly involved providing consistent reminders to persons with dementia to engage in infection prevention measures and included measures to restrict wandering in long-term care settings to reduce spread of infection. Medical care included tele and video consultations to maintain and monitor clinical stability. Guidance for continuing rehabilitation activities for persons with dementia through remotely conducted cognitive stimulating activities, physical exercises and environmental modifications were further highlighted by multiple studies/articles. In addition, strategies to support caregivers were also advised and included teleconsultations and psycho-educational programs.ConclusionThe COVID-19 pandemic has exposed gaps in health and social care systems across the world, but has also revealed the enduring dedication of clinicians, expert groups and dementia support organizations to modify and adapt existing dementia care services to meet the needs of persons with dementia and their caregivers during periods of emergency.
Project description:More than 16 million Americans provide unpaid care for someone with Alzheimer's disease and related dementias (ADRD). During the COVID-19 pandemic, unpaid caregivers experienced increased chronic severe stress from widespread closures and social distancing. We conducted eight surveys from March 2020 to March 2021 among a cohort of over 10,000 individuals. Cross-sectional analysis was conducted to investigate frequency and ratios of groups reporting increased stress across surveys. A longitudinal analysis was also performed with the 1,030 participants who took more than one survey. We found a growing crisis among dementia caregivers: By Survey 8, current caregivers reported 2.9 times higher stress levels than the comparator group. By that time, 64% of current caregivers reported having multiple stress symptoms typically found in people experiencing severe stress. Both analyses reported increased levels of stressors over time that were more associated with certain caregiver groups. Our findings underscore the urgent need for public policy initiatives and supportive community infrastructure to support ADRD caregivers.
Project description:Although behavioral and psychological symptoms are burdensome for people with dementia and their caregivers, perceptions of family caregivers regarding management of these symptoms are unclear. This study explored the experiences of family caregivers regarding behavioral and psychological symptoms experienced by relatives with dementia, management of these symptoms, and changes in their experiences during the COVID-19 pandemic. A qualitative, exploratory approach using constant comparative methods was used; 21 family caregivers were interviewed virtually. The following 10 major themes emerged: (1) Emotional and psychological experiences of caregiver, (2) emotional, psychological, and behavioral responses of person with dementia, (3) cognition of person with dementia, (4) loss, (5) concerns for the future, (6) reliance, (7) learning to caregive, (8) rewarding aspects of caregiving, (9) caregiver perspectives, and (10) care strategies. Caregivers described many challenges to care before and during the pandemic. Acceptable and effective care strategies are needed to promote the well-being of families living with dementia.
Project description:To understand and analyse the global impact of COVID-19 on outpatient services, inpatient care, elective surgery, and perioperative colorectal cancer care, a DElayed COloRectal cancer surgery (DECOR-19) survey was conducted in collaboration with numerous international colorectal societies with the objective of obtaining several learning points from the impact of the COVID-19 outbreak on our colorectal cancer patients which will assist us in the ongoing management of our colorectal cancer patients and to provide us safe oncological pathways for future outbreaks.
Project description:BackgroundA prolonged COVID-19 pandemic could exacerbate the risk of infection and undesirable effects associated with infection control measures of older people with dementia (PWD), and the care burden of families. In this study, we examined the efficacy of care manager-led information provision and practical support for families of older PWD who need care, regarding appropriate infection prevention, prevention of deterioration of cognitive and physical functions, and preparedness in cases of infection spread or infection during the pandemic.MethodsFifty-three family members (aged ≥20 years) who were primary caregivers living with older PWD using public long-term care services were enrolled in an one-month randomized controlled trial. This duration was set based on behavior modification theory and with consideration of ethical issue that the most vulnerable people not benefiting from the intervention. The intervention group (IG) received care manager-led information provision and practical support, and the control group (CG) received usual care. Care burden (primary outcome) was measured using the Zarit Caregiver Burden Interview, and secondary outcomes were analyzed using Patient Health Questionnaire-9 (PHQ9), the Fear of COVID-19 Scale, and salivary α-amylase activity. Data were collected at baseline and after 1 month. Multiple regression analysis was conducted to examine the efficacy of the intervention. The participants evaluated the care managers' support.ResultsThe participants were randomly divided into IG (n = 27) and CG (n = 26) groups. After the intervention, compared with the CG, there was a decrease in PHQ-9 (β = -.202, p = 0.044) and α-amylase activity in saliva (β = -.265, p = 0.050) in IG. IG also showed an increased fear of COVID-19 after the intervention (β = .261, p = 0.003). With the care managers' support, 57.2% of the participants felt secure in their daily lives and 53.1% agreed that they were able to practice infection prevention suitable for older PWD.ConclusionsOur findings suggest that the care manager-led intervention may be useful for families of older PWD to enhance behavioral changes in preventing COVID-19 infection and improve their psychological outcomes in the COVID-19 era.Trial registrationThis study was registered on April 2, 2021 (No. UMIN000043820).
Project description:Global healthcare systems are challenged by the COVID-19 pandemic. There is a need to optimize allocation of treatment and resources in intensive care, as clinically established risk assessments such as SOFA and APACHE II scores show only limited performance for predicting the survival of severely ill COVID-19 patients. Comprehensively capturing the host physiology, we speculated that proteomics in combination with new data-driven analysis strategies could produce a new generation of prognostic discriminators. We studied two independent cohorts of patients with severe COVID-19 who required intensive care and invasive mechanical ventilation. SOFA score, Charlson comorbidity index and APACHE II score were poor predictors of survival. Instead, using plasma proteomes quantifying 302 plasma protein groups at 387 timepoints in 57 critically ill patients on invasive mechanical ventilation, we found 14 proteins that showed trajectories different between survivors and non-survivors. A proteomic predictor trained on single samples obtained at the first time point at maximum treatment level (i.e. WHO grade 7) and weeks before the outcome, achieved accurate classification of survivors (AUROC 0.81, n=49). We tested the established predictor on an independent validation cohort (AUROC of 1.0, n=24). The majority of proteins with high relevance in the prediction model belong to the coagulation system and complement cascade. Our study demonstrates that predictors derived from plasma protein levels have the potential to substantially outperform current prognostic markers in intensive care.
Project description:ObjectivesSocial distancing under the COVID-19 pandemic has restricted access to community services for older adults with neurocognitive disorder (NCD) and their caregivers. Telehealth is a viable alternative to face-to-face service delivery. Telephone calls alone, however, may be insufficient. Here, we evaluated whether supplementary telehealth via video-conferencing platforms could bring additional benefits to care-recipient with NCD and their spousal caregivers at home.ParticipantsSixty older adults NCD-and-caregiver dyads were recruited through an activity center.Design, interventionThe impact of additional services delivered to both care-recipient and caregiver through video conference (n = 30) was compared with telehealth targeted at caregivers by telephone only (n = 30), over 4 weeks in a pretest-post-test design. Interviews and questionnaires were conducted at baseline and study's end.Measurements, resultsSupplementary telemedicine had averted the deterioration in the Montreal Cognitive Assessment evident in the telephone-only group (ηp2 = 0.50). It also reversed the falling trend in quality of life observed in the telephone only group (QoL-AD, ηp2 = 0.23). Varying degrees of improvements in physical and mental health (Short-Form 36 v2), perceived burden (Zarit Burden Interview Scale) and self-efficacy (Revised Caregiving Self-Efficacy Scale) were observed among caregivers in the video-conferencing group, which were absent in the telephone-only group (ηp2 = 0.23-0.51).ConclusionTelemedicine by video conference was associated with improved resilience and wellbeing to both people with NCD and their caregivers at home. The benefits were visible already after 4 weeks and unmatched by telephone alone. Video conference as the modus operandi of telehmedicine beyond the context of pandemic-related social distancing should be considered.
Project description:Amyotrophic Lateral Sclerosis (ALS) is a rare neurogenerative disorder whose median survival ranges from 2 to 4 years after symptomatic onset. Therefore, the global Quality of Life (QoL) assessment in these patients should be carefully evaluated to guarantee an adequate care level, particularly during the COVID-19 pandemic period, given the increased social isolation and the pressure on healthcare services. Caregiving has been recognized as an important source of physical and psychological burden, with a possible QoL impairment. The purpose of this study was to evaluate the QoL of ALS patients and the burden of their caregivers across Sardinia, Italy. The ALS Specific QoL Instrument-Short Form (ALSSQOL-SF) and the Zarit Burden Inventory (ZBI) tools were used to assess patient's QoL and the burden on their caregivers, respectively. The questionnaires were supplemented with items specific for the COVID-19 period. Sixty-six family units of patients with advanced ALS were interviewed between June and August 2021 across Sardinia. Patients' psychological and social well-being were found to significantly affect the patients' QoL, regardless of their physical condition. In addition, the caregiver burden resulted as being inversely proportional to the patient's perceived QoL. Lack of adequate psychological support was reported among the caregivers during the emergency period. Providing adequate psychological and social support might be useful to improve QoL in middle and late stages of ALS patients and to decrease caregivers' perceived home care burden.
Project description:ObjectiveThis study explored patient and caregiver expectations and experiences of virtual primary care in Manitoba, Canada. This study focused on accessibility of care, acceptability and perceptions of quality from 'users' of primary healthcare services. Due to the rapid implementation of virtual primary care during the COVID-19 pandemic in Canada, patient/public input was largely bypassed.MethodsA mixed method was conducted in collaboration with Patient and Caregiver Community Advisors. Data was obtained from 696 surveys and 9 focus groups (n = 41 patients and caregivers).ResultsData suggest good acceptance of virtual visits, although considered a new experience despite almost exclusive use of the telephone. Participants preferred more input for choosing the type of visit but experienced less stress, time and inconvenience by using virtual care. There were mixed opinions of quality. More complex visits were associated with incomplete consultations and serve as one exemplar of the limitations due to lack of physical presence or contact. Unique communication skills were required to convey health concerns adequately and accurately. A more transactional approach was perceived from the lack of visual cues and the awkwardness associated with pauses during the phone conversation. Virtual care may be better used for certain circumstances but should encompass patient-centred decision making for when and how. Many expressed interests in video options; technology access and user ability are additional considerations for advancing virtual care.ConclusionsThe experiences and recommendations from patients and caregivers provide an important contribution to decision-making and integrating and sustaining quality virtual care for patient-centered healthcare service delivery. Keywords: Virtual care experiences, primary care, patient-oriented research, mixed methods, COVID-19.
Project description:BackgroundInformal care can affect the mental health of caregivers. The COVID-19 pandemic precipitated many people into informal care. Little is known about the longitudinal effect of informal care throughout the pandemic. We investigate changes in mental health in relation to changes in informal care between July 2020 and September 2021.MethodsUsing data from Understanding Society, we applied fixed-effects modelling to assess mental health variations associated with changes in caregiving among 13 557 participants (50 430 observations). Hours of weekly care were categorized as 0, 1-19, ≥20. Mental health was measured using the General Health Questionnaire (GHQ-12) as a continuous score and a binary indicator. Main analyses were stratified by gender.ResultsCompared to when delivering 0 hours care/week, the GHQ-12 scores of women providing care for 1-19 hours/week were 0.46 points higher (95%CI: -0.11, 1.09), while their mental health scores were 0.99 higher (95%: 0.08, 1.90) when caring for ≥20 hours/week. Changes on the binary GHQ-12 measure were only evident for women when providing ≥20 hours of weekly care. These changes were not substantial among men.ConclusionInformal care adversely impacted the mental health of women carers during the COVID-19 pandemic. Support programmes for informal carers should focus on alleviating caregiving loads in women.