Vaccine uptake in caregivers family members and patients with dementia and relationship with severity of dementia and caregiver burden: a cross-sectional study.

We cross sectionally evaluated COVID-19 and seasonal flu vaccination rates among 94 dyads consisting of informal caregiver family member and non-institutionalized patient with dementia observed in family-medicine practice in Zagreb, Croatia. COVID-19 vaccination rates in caregivers (78.7%) and patients with dementia (82.9%) were significantly higher than in general population. Caregiver and patient COVID-19 vaccination status (CVS) did not correlate. Among caregivers, seasonal flu vaccination (P = 0.004) but no other investigated factors related to caregiving or dementia severity showed significant association with CVS. Among patients with dementia, CVS was significantly associated with lower number of caregiver hours dedicated per week (P = 0.017), higher caregiver SF-36 role emotional HRQoL (P = 0.017), younger patient age (P = 0.027), higher MMSE (P = 0.030), higher Barthel index (P = 0.006), absence of neuropsychiatric symptoms of agitation and aggression (P = 0.031), lower overall caregiver burden (P = 0.034), lower burden of personal strain (P = 0.023) and lower burden of frustration (P = 0.016). Caregiving and severity of dementia-related factors significantly affect patient, but not caregiver CVS.

Perceived Anxiety in Family Caregivers of Individuals with Autism Spectrum Disorder, Down Syndrome and Williams Syndrome during the Lockdown of the First COVID-19 Wave in Spain.

The lockdown during the first wave of COV- ID-19 in Spain has been related to higher levels of anxiety in the general population. However, the emotional impact on Spanish caregivers of individuals with neurodevelopmental disorders (NDD) has not been studied so far.

Informal care burden during the COVID-19 pandemic in Flanders, Belgium: The role of perceived threat, personality and resilience.

BACKGROUND: In this study, we investigate how socio-demographic characteristics (age, gender and education) and informal care relationship characteristics (e.g., time spent on care, number of informal caregivers, professional care) are linked with informal care burden during the COVID-19 pandemic. In addition, we expect this burden to differ by personality characteristics, degree of resilience, and-in this specific context-perceived the COVID-19 threat. METHOD: We used the fifth wave of a longitudinal study to identify 258 informal caregivers. These online survey data came from a five-wave longitudinal study in Flanders, Belgium that ran from April 2020 to April 2021. Data were representative of the adult population by age and gender. Analyses include t-tests, ANOVA, SEM and binomial logistic regression. RESULTS: We found that the informal care burden was strongly linked with a socio-economic gradient, time investment changes in care since the start of the pandemic, and whether there was more than one informal caregiver. Personality traits such as agreeableness and openness to experience, and the perceived threat of COVID-19 were also related to care burden. CONCLUSIONS: During the pandemic, informal caregivers were put under extra considerable pressure: restrictive government measures sometimes led to the temporary suspension of some or all professional care for persons with care needs, which may have resulted in a growing psychosocial burden. We recommend that, in the future, the focus should be on supporting the mental wellbeing and social participation of caregivers along with measures to protect caregivers and their relatives from COVID-19. Support structures for informal caregivers should be kept running during crises now and in the future, but it is also important to adopt a case-by-case basis to consider support for informal caregivers.

Parental and Other Caregiver Loss Due to COVID-19 in the United States: Prevalence by Race, State, Relationship, and Child Age.

The more than one million COVID-19 deaths in the United States include parents, grandparents, and other caregivers for children. These losses can disrupt the social, emotional, and economic well-being of children, their families, and their communities, and understanding the number and characteristics of affected children is a critical step in responding. We estimate the number of children who lost a parent or other co-residing caregiver to COVID-19 in the U.S. and identify racial, ethnic, and geographic disparities by aligning COVID-19 death counts through mid-May 2022 with household information from a representative sample of individuals. We estimate that 216,617 children lost a co-residing caregiver to COVID-19; 77,283 lost a parent and more than 17,000 children lost the only caregiver with whom they lived. Non-White children were more than twice as likely as White children to experience caregiver loss, and children under 14 years old experienced 70% of caregiver loss. These losses are a salient threat to the functioning of families and the communities in which COVID-19 deaths are concentrated, compounding additional challenges to physical and mental health and economic stability disproportionately imposed by the pandemic on historically disadvantaged populations. Policymakers and systems should take steps to ensure access to appropriate supports.

"Please Don't Forget Us": A Descriptive Qualitative Study of Caregivers of Older Adults With Alzheimer's Disease and Related Dementias During the COVID-19 Pandemic.

The current descriptive qualitative study explored the perceived impact of the coronavirus disease 2019 pandemic on sleep disturbances and nighttime agitation; the reported use of antipsychotics and other sedating medications; and the overall well-being of older adults with Alzheimer's disease and related dementias (ADRD) and their caregivers. One investigator conducted in-depth, phone interviews with caregivers of nursing home residents with ADRD (four family caregivers [FCs], three nurse practitioners [NPs]) and seven FCs of older adults with ADRD who lived with them at home. Caregivers described multiple sleep disturbances. Nighttime agitation symptoms were perceived to continue or worsen, and sedating medications and nonpharmacological interventions were required. Adverse impacts on reported well-being were significant, and impacts were grouped into emotional, social, and physical themes. Caregivers said, "Please don't forget us," and requested telehealth support for those at home and technology and human resources for nursing homes to reduce adverse impacts. [Research in Gerontological Nursing, 15(5), 217-228.].

Consequences and Perception of the COVID-19 Pandemic on Patients and Caregivers in an Austrian Memory Clinic Population One Year After Pandemic Onset.

BACKGROUND: The COVID-19 pandemic was associated with high mortality and negative consequences for patients with Alzheimer's disease or dementia and their caregivers. Memory clinics play an important role in enabling early dementia diagnosis and providing support for patients and their caregivers. OBJECTIVE: This study investigates the impact of the COVID-19 pandemic and its restrictions on patients of a memory clinic and their caregivers between March 2020 and March 2021. METHODS: We conducted a prospective, single-center, questionnaire-based, observational study to assess consequences and perception of the COVID-19 pandemic on emotion, cognitive function, social living, areas of care, and information retrieval. RESULTS: Results of 255 participants' (mean age 76.78, SD 8.9; 12% cognitively intact, 33% mild cognitive impairment, 55% dementia) and 203 caregivers' COVID-19 questionnaires (valid response rate 71%) could be included in the study. Participants reported a prevalence of psychological symptoms associated with the pandemic between 3-20%. Caregivers living outside compared to those living with the participant reported higher rates of new onset or worsening of neuropsychiatric symptoms in participants since pandemic onset. Patients with dementia showed the lowest use of digital communication before (15.7%) and after (17.1%) pandemic onset in the diagnostic groups. CONCLUSION: The COVID-19 pandemic frequently led to social isolation and reduced cognitive stimulation due to restrictions in elderly persons with cognitive deficits resulting in negative effects on emotional and social levels. We hypothesize that the implementation and sensitization with digital communication in clinical routine could provide a useful tool to counteract these negative effects.

Emotion-focused dyadic coping styles used by family carers of people with dementia during the COVID-19 pandemic.

Emotional wellbeing of family carers and people with dementia is associated with not only how each individual copes with stress and conflict, but also by how they cope together. Finding ways to positively cope together was particularly important during COVID-19 lockdown restrictions, when other avenues of emotional support were less available. We explored how carers experienced and used emotion-focused dyadic coping styles during the COVID-19 pandemic. In-depth qualitative interviews were conducted during the pandemic with 42 family carers, supplemented by quality of life scores collected both pre- and during the pandemic and household status. Abductive thematic analysis identified five styles of emotion-focused dyadic coping: common, supportive, hostile, disengaged avoidance and protective. The COVID-19 pandemic left many dyads unsupported. While many carers adapted, reporting increases in quality of life and enjoying the extra time with the person with dementia, others experienced dyadic conflict and reductions in quality of life. This variation was associated with dyadic coping styles, including challenges in using 'positive' styles and the protective use of 'negative' disengaged avoidance in the right situations. Dyadic coping styles also differed as a function of whether the dyad lived together. As many people with dementia are supported by an informal carer, considering how they cope together could help us to better support them. We make suggestions for dyadic interventions tailored by co-residency status that could help dyads identify and communicate coping needs, reconnect following avoidance coping, and replenish their coping resources through social support.

Developing the Resident Measure of Safety in Care Homes (RMOS): A Delphi and Think Aloud Study.

OBJECTIVE: This study aimed to develop a measure of contributory factors to safety incidents in care homes to be completed by residents and/or their unpaid carers. INTRODUCTION: Care home residents are particularly vulnerable to patient safety incidents, due to higher likelihood of frailty, multimorbidity and cognitive decline. However, despite residents and their carers wanting to be involved in safety initiatives, there are few mechanisms for them to contribute and make meaningful safety improvements to practice. METHODS: We developed 73 evidence-based items from synthesis and existing measures, which we presented to a panel of stakeholders (residents/carers, health/social care professionals and researchers). We used two online rounds of Delphi to generate consensus (80%) on items important to include in the Resident Measure of Safety in Care Homes (RMOS); a consensus meeting was later held. The draft RMOS developed through the Delphi was presented to participants during 'Think Aloud' interviews using cognitive testing techniques. RESULTS: The 29-item RMOS was developed. Forty-three participants completed Delphi round 1, and 27 participants completed round 2, 11 participants attended the consensus meeting and 12 'Think Aloud' interviews were conducted. Of the 73 original items, 42 items that did not meet consensus in Delphi round 1 were presented in round 2. After the consensus meeting, it was agreed that 35 items would comprise the RMOS questionnaire and were presented in the 'Think Aloud' interviews. Participants suggested numerous changes to items mostly to improve comprehension and ability to answer. CONCLUSION: We have a developed an evidence-based RMOS, with good face validity, to assess contributory factors to safety in care homes from a resident/carer perspective. Future work will involve psychometrically testing the items in a pilot and developing a complementary simplified, dementia-friendly version to promote inclusivity. PATIENT OR PUBLIC INVOLVEMENT: Four patient and public contributors worked with researchers to develop the online questionnaires. Patients (residents) and carers participated on the consensus panel. One member of the research team is an expert by lived experience and was involved in design and analysis decisions. The item list and instructions for the questionnaires were reviewed for face validity, understanding and acceptability by a patient and public involvement group and modified.

Applying dyadic digital psychological interventions for reducing caregiver burden in the illness context: a systematic review and a meta-analysis protocol.

INTRODUCTION: Providing informal care to one's romantic partner who is ill may become a highly distressing and demanding task. Based on the innovative dyadic coping model, several support interventions have been developed to alleviate informal caregivers' burden, including both caregivers' and care receivers' needs. Considering the unique challenges characterising the caregiving phenomenon, such as geographical barriers and time restrictions, digital solutions should be considered. However, there is a lack of research examining the effectiveness of dyadic digital solutions. Thus, this review aims to examine the existing literature on the efficacy of dyadic digital psychological interventions designed for caregivers and their care-receivers couples within the illness context. METHODS AND ANALYSIS: Randomised controlled trials targeting caregivers' burden among dyads of informal caregivers and care receivers will be identified via an electronic search of the following databases: PubMed, Embase, the Cochrane Library, Cinhal, Scopus, PsycINFO, MEDLINE and supplemented by hand searching of previous systematic reviews. The search will be undertaken following the PICO (population, intervention, comparison and outcome) elements. If possible, a meta-analysis will be conducted to examine: (1) the effectiveness of dyadic digital psychological interventions for reducing caregivers' burden (primary outcome) among caregivers who are in a romantic relationship with the care receivers; (2) the effectiveness of dyadic digital psychological interventions on secondary outcomes such as anxiety, depression, stress, quality of life, well-being and self-efficacy among caregivers and care receivers; and (3) moderating effects of clinical and methodological factors on caregivers' burden. Prior to inclusion in the review, retrieved papers will be critically appraised by two independent reviewers. The Cochrane Risk of Bias tool will assess the risk of bias for randomised controlled trials. ETHICS AND DISSEMINATION: Ethical approval is not required as no primary data will be collected. Findings will be disseminated through peer-reviewed publications, presentations at academic conferences and lay summaries for various stakeholders. PROSPERO REGISTRATION NUMBER: CRD42022299125.

REACH-ASD: a UK randomised controlled trial of a new post-diagnostic psycho-education and acceptance and commitment therapy programme against treatment-as-usual for improving the mental health and adjustment of caregivers of children recently diagnosed with autism spectrum disorder.

BACKGROUND: Autism is a neurodevelopmental disability affecting over 1% of UK children. The period following a child's autism diagnosis can present real challenges in adaptation for families. Twenty to 50% of caregivers show clinically significant levels of mental health need within the post-diagnostic period and on an ongoing basis. Best practice guidelines recommend timely post-diagnostic family support. Current provision is patchy, largely unevidenced, and a source of dissatisfaction for both families and professionals. There is a pressing need for an evidenced programme of post-diagnostic support focusing on caregiver mental health and adjustment, alongside autism psycho-education. This trial tests the clinical and cost-effectiveness of a new brief manualised psychosocial intervention designed to address this gap. METHODS: This is a multi-centre two-parallel-group single (researcher)-blinded randomised controlled trial of the Empower-Autism programme plus treatment-as-usual versus usual local post-diagnostic offer plus treatment-as-usual. Caregivers of children aged 2-15 years with a recent autism diagnosis will be recruited from North West England NHS or local authority centres. Randomisation is individually by child, with one "index" caregiver per child, stratified by centre, using 2:1 randomisation ratio to assist recruitment and timely intervention. Empower-Autism is a group-based, manualised, post-diagnostic programme that combines autism psycho-education and psychotherapeutic components based on Acceptance and Commitment Therapy to support caregiver mental health, stress management and adjustment to their child's diagnosis. The comparator is any usual local group-based post-diagnostic psycho-education offer. Receipt of services will be specified through health economic data. PRIMARY OUTCOME: caregiver mental health (General Health Questionnaire-30) at 52-week follow-up. SECONDARY OUTCOMES: key caregiver measures (wellbeing, self-efficacy, adjustment, autism knowledge) at 12-, 26- and 52-week follow-up and family and child outcomes (wellbeing and functioning) at 52-week endpoint. SAMPLE: N=380 (approximately 253 intervention/127 treatment-as-usual). Primary analysis will follow intention-to-treat principles using linear mixed models with random intercepts for group membership and repeated measures. Cost-effectiveness acceptability analyses will be over 52 weeks, with decision modelling to extrapolate to longer time periods. DISCUSSION: If effective, this new approach will fill a key gap in the provision of evidence-based care pathways for autistic children and their families. TRIAL REGISTRATION: ISRCTN 45412843 . Prospectively registered on 11 September 2019.

Impact of COVID-19 on carers of children with tracheostomies.

OBJECTIVES: To explore the impact of the COVID-19 pandemic on the experiences of caregivers of children with tracheostomies. DESIGN: Qualitative semistructured interviews. SETTING: All participants were currently, or had previously cared for, a tracheostomised child who had attended a tertiary care centre in the North of England. Health professionals were purposively sampled to include accounts from a range of professions from primary, community, secondary and tertiary care. PARTICIPANTS: Carers of children with tracheostomies (n=34), including health professionals (n=17) and parents (n=17). INTERVENTIONS: Interviews were undertaken between July 2020 and February 2021 by telephone or video link. MAIN OUTCOME MEASURE: Qualitative reflexive thematic analysis with QSR NVivo V.12. RESULTS: The pandemic has presented an additional and, for some, substantial challenge when caring for tracheostomised children, but this was not always felt to be the most overriding concern. Interviews demonstrated rapid adaptation, normalisation and varying degrees of stoicism and citizenship around constantly changing pandemic-related requirements, rules and regulations. This paper focuses on four key themes: 'reconceptualising safe care and safe places'; 'disrupted support and isolation'; 'relationships, trust and communication'; and 'coping with uncertainty and shifting boundaries of responsibility'. These are described within the context of the impact on the child, the emotional and physical well-being of carers and the challenges to maintaining the values of family-centred care. CONCLUSIONS: As we move to the next phase of the pandemic, we need to understand the impact on vulnerable groups so that their needs can be prioritised.

Impact of advanced Parkinson's disease on caregivers: an international real-world study.

BACKGROUND: Caring for a partner or family member with Parkinson's disease (PD) negatively affects the caregiver's own physical and emotional well-being, especially those caring for people with advanced PD (APD). This study was designed to examine the impact of APD on caregiver perceived burden, quality of life (QoL), and health status. METHODS: Dyads of people with PD and their primary caregivers were identified from the Adelphi Parkinson's Disease Specific Program (DSP™) using real-world data from the United States, Japan and five European countries. Questionnaires were used to capture measures of clinical burden (people with PD) and caregiver burden (caregivers). RESULTS: Data from 721 patient-caregiver dyads in seven countries were captured. Caregivers had a mean age 62.6 years, 71.6% were female, and 70.4% were a spouse. Caregivers for people with APD had a greater perceived burden, were more likely to take medication and had lower caregiver treatment satisfaction than those caring for people with early or intermediate PD; similar findings were observed for caregivers of people with intermediate versus early PD. Caregivers for people with intermediate PD were also less likely to be employed than those with early PD (25.3% vs 42.4%) and spent more time caring (6.6 vs 3.2 h/day). CONCLUSIONS: This real-world study demonstrates that caregivers of people with APD experience a greater burden than those caring for people with early PD. This highlights the importance of including caregiver-centric measures in future studies, and emphasizes the need for implementing treatments that reduce caregiver burden in APD. TRIAL REGISTRATION: N/A.

Depression, anxiety, and resilience during COVID-19 in Dutch patients with cystic fibrosis or primary ciliary dyskinesia and their caregivers.

BACKGROUND: The COVID-19 pandemic has spread across the world, leading to government measures associated with a negative impact on mental health. The aim of this study was to evaluate the impact of the pandemic on depression, anxiety and resilience in Dutch people with cystic fibrosis (PwCF) or primary ciliary dyskinesia (PwPCD) and their caregivers. METHODS: Adolescents (12-17 years) and caregivers of children (0-17 years) with CF, and adolescents, adults and caregivers of children with PCD completed questionnaires on depression, anxiety and resilience between September 2020 and February 2021. The psychosocial impact of COVID-19 was measured by the Exposure and Family Impact Survey (CEFIS) Part 2. Mixed model analyses compared depression and anxiety results to participants' prepandemic scores. RESULTS: One hundred ten participants (10 PwCF, 31 PwPCD, 52 CF caregivers, 17 PCD caregivers) completed questionnaires during the pandemic. Prepandemic outcomes were available for 87 participants. The prevalence of symptoms of depression and anxiety (PHQ-9 or GAD-7 scores ≥5) in PwCF and PwPCD and their caregivers before and during the pandemic was high, with an increase in depression in PwCF (2.75; 95% confidence interval: 0.82-4.68) and increase in anxiety in CF caregivers (1.03; 0.09-1.96) during the pandemic. Resilience was within the normal range for all groups, CEFIS scores corresponded to a low to normal impact. CONCLUSION: PwCF and PwPCD and their caregivers were at risk of elevated depression and anxiety symptoms both before and during the pandemic, which emphasizes the importance of mental health screening and psychological care in CF and PCD.

A Mixed-Method Examination of Emerging and Young Adult Cancer Caregivers' Experiences during the COVID-19 Pandemic.

Advanced cancer caregivers in emerging and young adulthood (EYACs; ages 18-35) are an understudied yet vulnerable caregiving population. The COVID-19 pandemic created new challenges for advanced cancer caregivers but also created unique contexts from which caregivers sometimes benefited. To understand how the pandemic may have positively and negatively impacted their caregiving and bereavement experiences, we examined EYACs' experiences of caring for and losing a parent with advanced cancer during the pandemic in comparison to those of EYACs with a parent who died outside the context of the pandemic. Eligible EYACs completed an online survey and semi-structured interview. Quantitative analyses compared responses for pre-pandemic EYACS (n = 14) and pandemic EYACs (n = 26). A thematic analysis of the interview transcripts of pandemic EYACS (n = 14) was conducted. Pandemic EYACs experienced non-significant but higher communal coping, benefit finding, negative emotional experiences, and caregiver strain than pre-pandemic EYACs. Thematic analysis revealed that the pandemic negatively affected EYACs' caregiving efficacy, personal well-being, interpersonal dynamics, and bereavement; shifts to remote work and schooling were reported as benefits. The findings can inform the design of resources to support EYACs whose parents died during the pandemic and who are navigating the healthcare system today.

Shared decision-making and the caregiver experience in tuberous sclerosis complex: results from a UK survey.

BACKGROUND: Tuberous sclerosis complex (TSC) is a rare genetic condition commonly accompanied by neurological and neuropsychological disorders, resulting in a high burden of illness for individuals and a substantial impact on their caregivers. Due to the diversity and complexity of clinical manifestations, patients with TSC need aligned multidisciplinary healthcare services starting in childhood through to adulthood. However, patients and caregivers are sometimes dissatisfied with the care provided, for which one of the most common reasons is a lack of involvement in clinical decision-making. Shared decision-making, whereby clinicians make clinical management decisions together with patients and their caregivers, is advocated for in the management of epilepsy, but evidence of its benefit in managing TSC is currently lacking. In this cross-sectional, UK-based analysis we used an online survey to capture the experiences of primary caregivers for individuals with TSC, including the impact on work productivity, clinical shared decision-making, satisfaction with care, and the impact of the coronavirus disease 2019 (COVID-19) pandemic. RESULTS: In total, 73 eligible caregivers provided consent (analysis set), with 14 completing the survey partially and 59 completing the full survey. Many caregivers (72%) reported receiving recommendations about new treatments from their doctor and discussing the treatment together, with a high proportion (89%) preferring that treatment was initiated at a low dose. Most caregivers (69%) were satisfied or extremely satisfied with pediatric TSC healthcare services, but only 25% were satisfied or extremely satisfied with the transition to adult TSC healthcare services. Several (n = 30) caregivers specified the impact of caring on their work productivity and career in optional open-ended survey responses. Finally, 80% of caregivers indicated that the COVID-19 pandemic had a "large" or "very large" impact on their caring activities, negatively affecting the emotional wellbeing and behavior of individuals with TSC, and caregivers' ability to work and arrange medical appointments. CONCLUSIONS: Caregivers largely feel involved in treatment decisions, and the majority were satisfied with healthcare services for children with TSC. However, many highlighted the need for an improved transition from pediatric to adult healthcare services. The survey also showed that COVID-19 has considerably affected caregivers and individuals with TSC.

The Effect of Internet-delivered Mindfulness Stress Reduction Combined with Acceptance and Commitment Therapy on Health Anxiety and Quality of Life of Caregiver of Patients Infected by COVID-19: A Randomized Clinical Trial.

Background: Coronavirus disease-19 (COVID-19) is a widespread disease all over the world that has caused many psychological complications such as health anxiety (HA) and low quality of life (QOL). Mindfulness-based approaches could improve these complications. Therefore, this study aimed to investigate the effect of Internet-delivered mindfulness stress reduction combined with acceptance and commitment therapy (IMSR-ACT) on QOL and HA of caregivers of patients infected by COVID-19. Methods: In this randomized clinical trial, 72 people from Golpayegan city, Iran, who had a patient with COVID-19 in their family were selected from March to June 2020. A caregiver with a score above 27 on the Health Anxiety inventory (HAI-18) was selected using simple random sampling. Participants were assigned in the intervention or control group by permuted block random allocation. The intervention group was trained by MSR and ACT techniques for 9 weeks accomplished via WhatsApp. All participants completed the QOLQuestionnaire-12 (SF-12) items and HAI-18 before and after completing IMSR-ACT sessions. The data were analyzed through SPSS-23 software, using Chi square, independent and paired t-test, and analysis of covariance, and P-value<0.05 was considered as significant. Results: The results showed that the intervention group compared to the control group had a significant decrease in all subscales of HAI after the intervention including worry about consequences (5.78±2.66 vs. 7.37±1.34, P=0.004) and awareness of bodily sensation or changes (8.90±2.77 vs. 11.75±2.30, P=0.001), worry about health (10.94±2.38 vs. 13.09±1.92, P=0.001), and total score of HAI (25.62±4.93 vs. 32.25±3.93, P=0.001). Also, the intervention group compared to the control group had better QOL after the intervention in general health perceptions (3.03±0.96 vs. 2.43±0.95, P=0.01), mental health (7.12±2.25 vs. 6.34±1.85 and P=0.01) and mental component summary) 16.78±3.75 vs. 15.43±3.05, P=0.01), physical component summary (16.06±2.66 vs. 15.19±2.25, P=0.01), and total score of SF-12 (32.84±5.39 vs. 30.62±4.34, P=0.004). Conclusion: Internet-delivered MSR combined with ACT could improve the HA and QOL of caregivers with patients infected by COVID-19. Thus, it can used in other similar situations for now and future. Also, it seems to be a useful approach for caregivers of the other illnesses. Trial Registration Number: IRCT20180909040974N.

Caregiver Involvement and Concerns with Care of Residents of Assisted Living before and during the COVID-19 Pandemic.

INTRODUCTION: Family/friend caregivers play an essential role in promoting the physical and mental health of older adults in need of care - especially during the COVID-19 pandemic and especially in assisted living (AL) homes, where resident care needs are similarly complex as in long-term care homes but fewer staffing resources and services are available. However, little research is available on caregiver involvement and concerns with care of AL residents prior to and during waves 1 and 2 of the COVID-19 pandemic. This study addressed this important knowledge gap. METHODS: This prospective cohort study used baseline and follow-up online surveys with primary caregivers to AL residents in Western Canada who were 65 years or older and had lived in the AL home for at least 3 months before Mar 1, 2020. Surveys assessed the following outcomes in the 3 months prior to and during waves 1 and 2 of the pandemic: sociodemographics, 5 ways of visiting or communicating with residents, involvement in 16 care tasks, concerns with 9 resident physical/mental health conditions, perceived lack of resident access to 7 care services, and whether caregivers felt well informed and involved with resident care. RESULTS: Based on 386 caregiver responses, in-person visits dropped significantly in wave 1 of the pandemic and so did caregiver involvement in nearly all care tasks. While these rates increased in wave 2, most did not return to pre-pandemic levels. Correspondingly, caregiver concerns (already high before the pandemic) substantially increased in wave 1 and stayed high in wave 2. These were particularly elevated among caregivers who did not feel well informed/involved with resident care. CONCLUSIONS: Restricted in-person visiting disrupted resident care and was associated with worse perceptions of resident health and well-being. Continued caregiver involvement in resident care and communication with caregivers even during lockdowns is key to mitigating these issues.

Screening for psychosocial risk in caregivers of children with medical complexity during the COVID-19 pandemic: a cross-sectional study.

OBJECTIVE: The primary objective was to quantify psychosocial risk in family caregivers (FCs) of children with medical complexity (CMC) during the COVID-19 pandemic using the Psychosocial Assessment Tool (PAT). The secondary objectives were to compare this finding with the average PAT score of this population before the COVID-19 pandemic and to examine potential clinical predictors of psychosocial risk in FCs of CMC. DESIGN: Cross-sectional study. PARTICIPANTS: FCs of CMC were recruited from the Long-Term Ventilation Clinic at The Hospital for Sick Children, Toronto, Ontario, Canada. A total of 91 completed the demographic and PAT questionnaires online from 10 June 2021 through 13 December 2021. MAIN OUTCOME MEASURES: Mean PAT scores in FCs were categorised as 'Universal' low risk, 'Targeted' intermediate risk or 'Clinical' high risk. The effect of sociodemographic and clinical variables on overall PAT scores was assessed using multiple linear regression analysis. Comparisons with a previous study were made using Mann-Whitney tests and χ2 analysis. RESULTS: Mean (SD) PAT score was 1.34 (0.69). Thirty-one (34%) caregivers were classified as Universal, 43 (47%) as Targeted and 17 (19%) as Clinical. The mean PAT score (1.34) was significantly higher compared with the mean PAT score (1.17) found prior to the COVID-19 pandemic. Multiple linear regression analysis demonstrated an overall significant model, with the number of hospital admissions since the onset of COVID-19 being the only variable associated with the overall PAT score. CONCLUSION: FCs of CMC are experiencing significant psychosocial stress during the COVID-19 pandemic. Timely and effective interventions are warranted to ensure these individuals receive the appropriate support.

Aging in Place Through the COVID-19 Pandemic: Perspectives from Aging Service Providers.

Formal and informal networks of resources are critical to supporting the growing number of older adults aging in place (AIP). Data are needed from aging-service providers about assets and barriers that impact their abilities to support AIP during the pandemic, as well as emergent needs resulting from response measures. A series of World Café workshops were conducted with aging-service providers in Salt Lake City, Utah, to understand supportive factors, service gaps, and future needs. Novel domains to support AIP in the context of the pandemic were identified: digital access and literacy, social isolation and mental health, and emergency preparedness. Issues related to access, equity, and affordability were identified as overarching themes across domains. Issues reflect concern over how the pandemic exacerbated socioeconomic and cultural disparities impacting older adults who benefit from aging services. Networks of advocacy and support are needed to bolster resources for older adults, caregivers, and aging-service providers.