Caregivers of people with dementia and mental health during COVID-19: findings from a cross-sectional study

Background There is sparse evidence on the impact on vulnerable populations of the COVID-19 pandemic. The aim of our study was to explore burden and mental wellbeing (including depressive, anxiety, and stress symptoms) in caregivers of people with dementia during the first wave of the pandemic in Italy and southern Switzerland, two bordering regions severely hit by the COVID-19 pandemic. Methods We conducted an online cross-sectional survey with family carers of people with dementia between May and June 2020. We registered socio-demographic characteristics, and information about the relationship with the care recipient, dementia subtype, care inputs from others, and the need of care of the person with dementia. We measured caregiver burden with the Zarit Burden Interview (ZBI), psychological distress with the Depression, Anxiety and Stress Scale (DASS-21), and perceived isolation with the 3-item UCLA Loneliness Scale (UCLALS3). Results Caregivers (N =571) reported moderate to severe care-related burden (mean=54.30; SD=18.33), moderate anxiety symptoms (mean=10.04; SD=6.93), mild depressive symptoms (mean=11.79; SD=6.12) and mild stress (mean=12.95; SD=5.53), and 72.3% of participants reported to feel lonely. All scores were significantly more severe in Swiss compared to Italian caregivers (all p values<0.001). Conclusions We found that caregivers’ burden, anxiety symptoms, depression and perceived loneliness were marked during the first wave of the COVID-19 pandemic, in two severely hit bordering countries. Regional differences in the impact of the epidemic on caregivers could be due to contextual, societal, and cultural circumstances. As the pandemic endures, support to caregivers of people with dementia should be proportionate and tailored to needs and adapted to contextual factors.

A Multinational Longitudinal Study Incorporating Intensive Methods to Examine Caregiver Experiences in the Context of Chronic Health Conditions: Protocol of the ENTWINE-iCohort

Informal caregivers are those who provide unpaid care to a relative or friend with a chronic illness, disability or other long-lasting health or care need. Providing informal care in the context of chronic health conditions presents a significant global challenge. Examination of the determinants of informal caregivers’ behaviour, especially in terms of motivations and willingness to provide/receive care, is crucial to understanding the nature of caregiver and care recipient experiences. A large group of international researchers have co-operated to execute the ENTWINE iCohort-a multinational, transdisciplinary, longitudinal study incorporating intensive methods to examine caregiver experiences in the context of chronic health conditions. The aim of ENTWINE-iCohort is to investigate the broad spectrum of factors, i.e., cultural, personal, geographical, relational, psychological, and economic that may affect motivations, willingness to provide or receive care, among diverse groups of informal caregivers and their care recipients, in different countries that have different care systems. Study questionnaires will be disseminated on-line in nine countries: Germany, Greece, Ireland, Italy, Israel, the Netherlands, Poland, Sweden, and the UK. Cross-sectional and longitudinal multivariate analysis, including intensive longitudinal and dyadic data analysis will be applied to examine the relative contribution of the above factors to caregiver or care recipient wellbeing.

Utilization, Contributions, and Perceptions of Paid Home Care Workers among Households in New York State

Background and Objectives While family caregivers have traditionally provided care for older adults with chronic conditions and disabilities, the demand for paid home care workers has increased in the last decade. Although typically thought to assist with personal care emerging data suggest that paid home care workers assist with a wider scope of care. However, the extent and quality of the care they deliver remains poorly understood. Research Design and Methods Using the Empire State Poll, a telephone-based cross-sectional survey of 800 adults in New York State, we characterized the types of care that paid home care workers provided and the perceived value of that care. Results Of 800 participants surveyed, 274 reported that they or an immediate family member received care from a paid home care worker (34.3%). Of these, the majority (73.9%) reported that paid home care workers provided emotional and/or medical care, in addition to personal care. In adjusted models, providing emotional and medical care (compared to personal care alone) was associated with nearly a two-fold greater perception of importance and experience by the care recipients. Discussion and Implications Our findings provide additional data on how paid home care workers contribute to patient care, from the perspective of the care recipient(s). The type of care provided is associated with varying magnitudes of perceived quality. Although limited to New York, these findings have implications for paid home care workers’ training and compensation. Future studies are warranted to investigate the specific factors that mediate the association between types of care provided and their perceived value.

Understanding Burden in Caregivers of Adults With Dysphagia: A Systematic Review

Introduction: A previous review suggested that dysphagia is negatively associated with burden in caregivers of community-dwelling older adults. Other literature suggests similar patterns of burden may be found across adult patient populations. The current study, following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, was conducted to determine the impact of dysphagia on caregivers of adults, regardless of etiology. Method: Five electronic databases were searched using terms based on a review by Namasivayam-MacDonald and Shune (2018) but included all adults rather than only older adults. Searches were limited to English-language empirical studies discussing caregiver burden, included caregivers of adult care recipients, had some care recipients with dysphagia, did not include palliative care, and published in a peer-reviewed journal. Results: The search yielded 1,112 unique abstracts, of which 17 were accepted. Across studies, caregiver burden was found to increase due to dysphagia in care recipients. Commonly reported dysphagia-related causes of burden included changes in meal preparation, disruption in lifestyle, effects on social life, lack of support, insertion of feeding tubes, and fear of aspiration. In general, dysphagia-related caregiver burden was a common experience across caregivers, regardless of patient population, caregiver age, and relationship between caregiver and care recipient. Meta-analyses suggest 71% of caregivers of adults with dysphagia experience some degree of burden. Conclusions: These findings support that dysphagia negatively impacts caregiver burden and suggests sources of burden that clinicians can address within dysphagia management to support caregivers. However, more research is needed to better delineate sources of burden, especially those specific to various dysphagia etiologies, to better meet the needs of our patients.

“Care to Plan”: Delivering Personalized Recommendations to Support Caregivers of People Living with Dementia (Preprint)

BACKGROUND Estimates suggest that 6.2 million Americans aged 65 and older are living with Alzheimer’s dementia in 2021 and by 2060, that number could more than double to 13.8 million. As a result, public health officials anticipate a greater need for caregivers for persons with Alzheimer’s disease or a related dementia (ADRD), as well as support resources for both people living with dementia (PLWD) and their caregivers. Despite the growing need for dementia caregiver support services, there is a lack of consensus regarding how to tailor these services to best meet the heterogeneous needs of individual caregivers. To fill this gap, “Care To Plan” (CtP), an online tool for caregivers of PLWD, was developed to provide tailored support recommendations to dementia caregivers. OBJECTIVE The objective of this study was to formally explore the feasibility, acceptability and utility of CtP for 20 family members of PLWD within a health system over a one month time period using a mixed methods parallel convergent design. METHODS A moderately sized health system in the mid-Atlantic region was selected as the site for CtP implementation where 20 caregivers who were family members of PLWD were enrolled. The web-based CtP tool was used directly by caregivers and facilitated by a healthcare professional (i.e., a “senior care navigator”/SCN). Caregivers were given a 21-item review checklist to assess barriers and facilitators associated with reviewing CtP with a SCN. Following the 21-item review checklist, semi-structured telephone interviews, which included 18 open-ended questions, focused on the facilitators and barriers to CtP implementation and recommendations for future implementation. RESULTS Quantitative results suggested that 76.5% and 85.7% of caregivers agreed or strongly agreed that after using the tool they were able to find a service that would meet their needs and those of their care recipient, respectively. Qualitative analysis identified four themes regarding facilitators and barriers to implementation: 1) caregiver factors, 2) SCN factors, 3) CtP tool system factors, and 4) recommendations and resources factors. CONCLUSIONS Care to Plan was not only found to be feasible, but a valuable tool for caregivers seeking resources for themselves as well as their PLWD. Longer-term evaluation findings aim to generate results as to how CtP can be integrated into care plans for caregivers and how SCNs can provide additional support for caregivers for PLWD over an extended period of time.

Care-giver wellbeing: exploring gender, relationship-to-care-recipient and care-giving demands in the Canadian Longitudinal Study on Aging

The three-way intersection of gender, relationship-to-care-recipient and care-giving demands has not, to our knowledge, been examined in relation to the wellbeing of family care-givers. We explore inequalities in depressive symptoms and life satisfaction, comparing wives, husbands, daughters and sons providing very-intensive care (36+ hours/week) with those providing less care and disparities between these groups in the factors related to disadvantage. Data from the Canadian Longitudinal Study on Aging (N = 5,994) support the existence of differences between the groups. Very-intensive care-giving wives report the most depressive symptoms and lowest life satisfaction; less-intensive care-giving sons report the fewest depressive symptoms, and less-intensive care-giving daughters report the highest life satisfaction. However, group differences in life satisfaction disappear among very-intensive care-givers. Drawing on Intersectionality and Stress Process theories, data from regression analyses reveal a non-significant gender–relationship–demand interaction term, but, health, socio-economic and social support resources play a strong mediating role between care demand and wellbeing. Analyses of the eight groups separately reveal diversity in the care-giving experience. Among less-intensive care-givers, the mediating role of resources remains strong even as differences are evident. Among very-intensive care-givers, the role of resources is less and differences in wellbeing between the groups are magnified. Policy implications emphasise the imperative to personalise services to meet the varied needs of care-givers.

Coping and Caregiver Burden and Depression Among Chinese Caregivers of Older Adults With Cognitive Impairment

Coping strategies are important factors that influence caregivers’ mental health outcomes. The purpose of this study is to examine the association between coping strategies and caregiver burden and depression among Chinese caregivers of older adults with cognitive impairment. Data came from structured interviews with 300 primary family caregiver-care recipient dyads in Wuhan, China. We used OLS to examine the association between coping strategies and caregiver burden and depression. More positive reframing and acceptance were associated with lower caregiver burden, whereas more self-distraction was associated with higher caregiver burden. More positive reframing was associated with lower caregiver depression, whereas higher self-distraction and religion were associated with higher caregiver depression. Findings of this study suggest that a psychosocial intervention package that emphasizes on enhancing positive reframing skills and affirming acceptance may be effective in reducing caregiver burden and depression among Chinese caregivers of older adults with cognitive impairment.

Caregivers' Cannabis Use: Does Burden Lead to Blunts?

Research on risky health behaviors among caregivers is limited. In this paper, we examine the association between informal caregiving and marijuana use and whether this association varies by age. Using data from Behavioral Risk Factor Surveillance System (2016-2019), a multivariable logistic regression model compared marijuana use in “caregivers” and “expectant caregivers.” We stratified the analyses by age and also assessed the association between caregiving intensity and marijuana use. Among younger individuals (18-49 years), informal caregiving was associated with higher odds of marijuana use. In this group, higher prevalence of marijuana use was positively associated with care intensity. There was no detectable association between caregiving and marijuana use among older individuals (50 years or older). Health behaviors among caregivers differ by age. Combined exposure to informal caregiving and marijuana in young adulthood may lead to adverse long-term health consequences. Immediate effects of marijuana use may negatively influence care recipient outcomes.

Sources of Positivity in the Daily Life of Family Caregivers of Persons with Dementia

Family caregivers often experience fatigue, burnout, and health complications yet also enjoy many aspects of caregiving that may benefit their well-being. This study identifies positive aspects of caregiving in the daily life experiences of dementia family caregivers in order to inform interventions to support caregivers’ well-being. This case study entails a secondary analysis of open-ended question data obtained from 165 family caregivers who answered daily diaries over 21 days (n = 2841 responses). We used content analysis to organize and elicit thematic categories from the data collected in response to the question “what was the best part of your day.” A final 762 responses were selected as meeting the “care” criteria for the study, with an inter-rater reliability of 91.6%. Data analysis revealed three major sources of daily positive aspects including: caregiver-focused, patient-oriented, and support-system based. The analysis also revealed seven different kinds of daily positive aspects, such as getting to enjoy time with the care recipient or getting to accomplish other non-caregiving tasks. Many of the positive aspects of caregiving reported were enabled by social support, but they were ultimately from how they utilized that support (e.g., getting alone time) that provided the positivity. The findings of this study demonstrate the important role social support plays in caregiving, as well as highlights other possible intervention targets to create easier, more positive days for family caregivers.

Longitudinal Effects of Stress and Cognitive Fusion in Anxiety and Depressive Symptoms of Family Caregivers

Dementia caregiving has been commonly associated with negative psychological consequences in caregivers. Cognitive fusion, that is, the tendency for been overly influenced by cognition, has been linked to psychological distress in caregivers in cross-sectional studies. Female caregivers and those who are exposed to more stressors such as behavioral and psychological symptoms of dementia report higher levels of distress. However, longitudinal analysis of predictors of caregivers levels of distress are sparse, with no available study analyzing the longitudinal effect of cognitive fusion. The aim of this study is to analyze the longitudinal effect of cognitive fusion in depressive and anxiety symptoms of family dementia caregivers, after controlling for other relevant variables. Face to face interviews were conducted each year through a two-year period (three assessments) with 143 caregivers. Linear mixed models analysis were used to analyze the associations between time-varying values for cognitive fusion, frequency and reaction to care-recipient behavioral problems and depressive and anxiety symptoms, after controlling for caregivers’ age and gender, daily hours and time caring, care-recipient functional capacity and caregivers’ transitions (cessation of caregiving). Results suggest that increases in cognitive fusion and in reaction to behavioral problems, being a female caregiver and being younger, significantly predicted increases in anxiety symptoms over time. Also, increases in cognitive fusion and in reaction to behavioral problems, decreases in care-recipient’s functional capacity and ending of the caregiving role significantly predicted increases in depressive symptoms. Psychological strategies aimed at reducing cognitive fusion and stress levels may be especially helpful for reducing caregivers’ distress.