Tension between professional obligations and extraprofessional caregiving responsibilities is one reason physician scientists leave academic medicine. The COVID-19 pandemic exacerbated this challenge by increasing caregiving demands and decreasing time spent on research as much as 40%. CARES at UAB (Caregiving Affected Research Early-Career Scientists Retention Program at the University of Alabama at Birmingham) provided “extra hands” awards to early-career physician and non-physician research faculty to hire personnel to expedite research projects already awarded but deleteriously affected by caregiving during the pandemic. Evaluation included tracking awardee publications and grants, surveying awardees, and conducting semi-structured individual in-depth interviews. CARES at UAB distributed 28 grants totaling $1,005,266. Twenty-six awardees (93% retention) remain in academia 2.25–3.25 years after award initiation. Awardees attribute over 200 manuscripts to the funding and have secured 15 new NIH K-, R-, and U-series grants. Surveys indicate improved awardee well-being and decreased caregiving burden since receipt of funding. Scientific productivity, feeling valued, sense of community, and lifeline emerged as themes from interviews. Group “listening sessions” yielded university-level recommendations around tenure and promotion, caregiving culture, and mentoring. Resource to hire “extra hands” holds promise to retain early-career physician and non-physician research faculty with extraprofessional caregiving responsibilities.

Positive health outcomes are realized when individuals receive interprofessional care, which also includes collaboration with family and care providers. We used social network analysis to explore interprofessional care networks and experiences of independent, community-dwelling older adults and how they perceive collaboration between different medical and non-medical network members. Twenty-three participants were interviewed and asked to name individuals contributing to their health and well-being (network of care) and position them in a concentric circle to reflect the relative strength of relationships. The average network size was 11. Closest relationships were with spouses, children, and family physicians. Relationship strength with network members was marked by frequency, accessibility, longevity, and impact of interactions. Participants were ardent self-advocates for their care, but reported few apparent episodes of collaboration between network members. Our study highlights that coordinated and collaborative care for independent community-dwelling older adults is lacking and does not routinely engage non-medical network members.

Respite for individuals caring for family living with dementia is a common way to take personal time away from caregiving. Other than respite, there is little indication that caregivers receive adequate support from community and healthcare services. As a result, caregivers tend to experience a decline in well-being, due, in part, to a reduction in meaningful leisure experiences. The purpose of this article is to share findings from research aimed at discovering ways to enhance caregiver participation in meaningful leisure. Findings highlight how participants sacrificed their leisure time in favour of caregiving responsibilities and experienced a diminished sense of social connection. Findings also highlight how participants can have their own care needs met through leisure programming that lets them know they matter. We draw from these findings to suggest ways to direct more attention and resources to meeting caregiver needs.

Ensemble pour le plaisir ! (EPLP) est un programme ayant pour objectif d’amener les personnes vivant avec un trouble neurocognitif et leur proche aidant à retrouver des moments de plaisir au sein de leur relation. Appuyé par la théorie du comportement planifié d’Ajzen, le présent article vise à analyser la démarche d’implantation du programme EPLP au sein de milieux communautaires et de soulever les facteurs d’influence menant au changement de comportement des parties prenantes. Les résultats montrent que bien que les attitudes, les normes et la notion de contrôle soient favorables à l’intention de changer le comportement, des ressources médiatrices telles que le financement et le mentorat par l’équipe de recherche sont essentielles à l’implantation pérenne du programme.

The devastating impacts of the COVID-19 pandemic highlighted the missing voices of families and residents in long-term care (LTC) decision-making and policy processes. Family and resident councils constitute one method of raising these voices, but there is currently a gap in evidence of how to promote the effectiveness of these councils. We conducted five focus groups and two interviews with LTC home leaders, residents, family members, and advocates in British Columbia using a participatory approach integrating knowledge-users throughout the research process. Using a framework analysis, we found modifiable (communication, structure, recruitment/engagement, council leadership, culture/attitudes, and resources/supports) and non-modifiable factors (medical complexity of residents and short lengths of stay) affecting council effectiveness. We discuss strategies implemented by knowledge-users to address modifiable effectiveness factors and construct a preliminary tool (a 35-question survey) that operationalizes and identifies areas that can increase council effectiveness in practice to ensure that their voices are heard in LTC decision making.

This essay argues that suffering in persons with dementia is more than a matter of personal experience. It is knowable by others and does not need to rely on the reports of the patient to affirm it. It is even possible for a person to claim not to be suffering—“I’m doing fine”—but for others to conclude to the contrary—“You are suffering.” A key property of this objective account is the caregiver observes the suffering. This observation is a product of the work of caregiving and this work relies on perceiving and supporting the mind of the person living with dementia. When that work of mind support is successful, it creates a feeling of being at home. When it is not, suffering ensues.

As demographics and gender norms shift, more older men will be providing care for their wives living with dementia than ever before. Research on husbands as caregivers is limited and offers an incomplete picture of their role development and how they experience caregiving. This study examined husbands whose wives have dementia and how they provide care and construct their sense of self. Semi-structured interviews with 11 men aged 61–88 were conducted in Ontario, Canada. Data were analyzed using constant comparison analysis and a constructivist grounded theory (CGT) approach. Two categories were developed: Adapting to the Role of Caregiver and Staying a Husband. Caregiving as a husband for a wife living with dementia required revision of the role of husband to include that of caregiver by reimaging intimacy, being a protector in new ways, and finding new meanings to being a provider and the value of wealth.

We evaluated stress and burden in epilepsy patient caregivers in a pediatric neurology clinic. Caregivers of 102 children with epilepsy completed the Caregivers’ Assessment of Difficulty Index and a questionnaire regarding caregiver sociocultural characteristics. A multiple linear regression statistical analysis found that caregiver burden was significantly increased for those who had a second child with a chronic disease, sole caregivers and for those with children with drug-resistant epilepsy. Caregiver stress was significantly increased for caregivers with a native language other than English or French, caregivers who had a second child with a chronic disease and sole caregivers.

La qualité des soins apportés aux personnes vivant avec la maladie d’Alzheimer (MA) dépend en partie de la capacité des professionnels à déterminer le degré de conscience de la maladie chez les patients. La présente recherche s’est intéressée aux représentations des soignants concernant la conscience des troubles chez les résidents d’établissements de soins de longue durée présentant un diagnostic de MA. Le pouvoir prédicteur de l’anosognosie sur le fardeau soignant a également été examiné. L’anosognosie des troubles de la construction (r = 0,40, p = 0,0164) et de l’initiation (r = 0,32, p = 0,052) était corrélée au fardeau soignant. Les professionnels se représentaient les résidents comme ayant une conscience altérée de leurs capacités, même en l’absence d’anosognosie. Les scores réels d’anosognosie ne prédisaient pas les estimations soignantes, hormis le score global sous forme de tendance (χ2 = 3,38, p = 0,066). Les soignants surestimaient pourtant les performances cognitives des résidents, telles que mesurées au moyen du protocole Misawareness (prédictions aidants/performances réelles : DC = 12,32, p < 0,0001).

The interdisciplinary field of developmental psychopathology has made great strides by including context into theoretical and empirical approaches to studying risk and resilience. Perhaps no context is more important to the developing child than their relationships with their caregivers (typically a child’s parents), as caregivers are a key source of stimulation and nurturance to young children. Coupled with the high degree of brain plasticity in the earliest years of life, these caregiving relationships have an immense influence on shaping behavioral outcomes relevant to developmental psychopathology. In this article, we discuss three areas within caregiving relationships: (1) caregiver–child interactions in everyday, naturalistic settings; (2) caregivers’ social cognitions about their child; and (3) caregivers’ broader social and cultural context. For each area, we provide an overview of its significance to the field, identify existing knowledge gaps, and offer potential approaches for bridging these gaps to foster growth in the field. Lastly, given that one value of a scientific discipline is its ability to produce research useful in guiding real-world decisions related to policy and practice, we encourage developmental psychopathology to consider that a focus on caregiving, a modifiable target, supports this mission.

This study aimed to explore the prevalence of suicidal thoughts and potential associations (i.e., strength and direction) with caregiver characteristics or factors. A targeted survey was distributed to dementia caregivers aged 55+ years. Questions concerning psychological distress, suicidal thoughts while caregiving and antecedents of suicidal behaviours were administered. A sample of 71 French-speaking Canadian caregivers completed the survey between May and October 2019. Among them, 52.1 per cent (n = 37) reported suicidal ideation while providing care to a relative or a friend living with dementia. Caregivers who presented suicidal ideation reported more abusive behaviour toward the care recipient. Caregivers who reported suicidal thoughts were significantly more distressed than caregivers without them on measures of burden, depression, and anxiety. Suicidal thoughts in caregivers are important evaluation targets, primarily for the prevention of suicide, but also because caregivers who report suicidal thoughts also present a heightened risk for abusing the care recipient.