Modulators of Caregiver Distress and Corresponding Impacts on Persons With Dementia

Extensive literature documents the detrimental effects of caregiver distress (CD) for caregivers. Less is known about the impact that CD exerts upon their care recipients, particularly persons with dementia (PwD). Using multilevel modeling, this study employed dyadic data from the Voices in Motion study to examine time-varying within-person associations between key caregiver and care recipient indicators of psychosocial function. An initial dyadic coupling model indicated that cognitive functioning for PwD and caregiver well-being significantly predicted shifts in CD. A second time-varying dyadic model found that, within dyads, high levels of CD predicted lower positive affect and increased depression scores in PwD. Most sociocognitive interventions target a sole member of a dyad; our results suggest that both dyad members are impacted simultaneously. Caregiver well-being impacts CD, which in turn, impacts well-being in PwD. The symbiotic relationship between care partners and PwD is nuanced, with further research required to understand the interdependencies.

Caregiving Self-efficacy as a Mediator of Negative Emotional States and Potentially Harmful Behaviors

Potentially harmful behaviors (PHB), such as wanting to scream at or hit a care recipient, are more likely when caregivers experience higher levels of stress. The current study expands on this research and identifies caregiving self-efficacy (SE) for dealing with disruptive behaviors as a mediator of the relationship between caregiver distress and PHB. Multilevel mediation models were tested using a sample of 244 caregivers of persons with dementia assessed three times over a one year period. In two separate models, SE mediated the relationship between caregiving burden/depression and the frequency of wanting to yell or scream at the care recipient in the past six months. Individuals with higher levels of depression and burden had lower levels of SE for dealing with disruptive behaviors. As SE decreased, the risk of potentially harmful behaviors increased. This mediation effect occurred at the within and between subject levels of the model. A significant indirect effect at the within-person level suggests that at timepoints where caregivers experienced more distress, they had lower self-efficacy and increased PHBs. Similar effects were observed at the between person level. These data suggest that both caregiver distress and self-efficacy are important intervention targets for minimizing PHBs.

Dementia Caregiver Surrogate Decision Making Self-Efficacy:Distress, and Quality of Life

We assessed the relationship between caregiver self-efficacy and caregivers’ ratings of care recipient’s health-related quality of life, the severity of neuropsychiatric symptoms, and associated caregiver distress for persons with Alzheimer’s dementia (AD). Methods: The 31-item DEMQOL-Proxy, Neuropsychiatric Inventory (NPI-Q), and the Self-Efficacy for Surrogate Decision-Making scale (SDM-SES) were collected from 26 family caregivers of people with AD expressing care resistant behaviors. We used Spearman correlations to assess relationships between SDM-SES, NPI-Q severity, and NPI-distress and DEMQOL-proxy. Among enrolled caregivers, 14 (54%) were women; mean age was 64.5 years, and 24 (92%) were college-educated. Their care recipients were 61% women, 77 % white, with a mean age of 76 years, and mostly college-educated (88%). Mean scores were DEMQOL-Proxy 91.27 (+/- 14.16), SDM-SES 16.38 (+/- 2.74), NPI-Q Severity score 14.23 (+/- 6.04), and NPI-distress 17.42 (+/-6.90). There were moderate correlations between DEMQOL-Proxy and SDM-SES (r=0.54), NPI severity (r= -0.42) and NPI-distress (r= -0.49). Secondary analysis showed a moderate correlation between SDM-SES and NPI-distress (r= -0.40). We identified associations between caregiver self-efficacy, quality of life, and caregiver distress. A higher baseline SDM-SES was associated with greater health-related quality of life for the care recipient. Lower self-efficacy scores were related to more caregiver distress related to neuropsychiatric symptoms. Higher NPI severity and caregiver distress were associated with lower quality of life for the care recipient. Interventions targeting self-efficacy may promote improved QOL and decrease caregiver distress in AD dyads.

Reliability and Validity of the Neuropsychiatric Inventory Questionnaire in Dyads With Dementia at Hospitalization

This study expanded on the limited psychometric testing of the Neuropsychiatric Inventory-Questionnaire (NPI-Q), and extended testing to include hospitalized persons with dementia upon admission to the hospital, with reports from family caregivers. Using data from 318 dyads in the ongoing Fam-FFC trial, a Rasch analysis was conducted. Most patients were female (62%), non-Hispanic (98%), and Black (50%) with a mean age of 81.62 (SD=8.43). There was evidence of internal consistency for all subscales (behavior, severity, caregiver distress); a DIF analysis showed invariance across race and gender. The items on the NPI-Q fit with each subscale. Hypothesis testing showed a significant association between the AD8 (F=30.04, p=.001) and MoCA (F= 5.05, p=.03) with behaviors; the AD8 (F =27.91, p=.001) and MoCA (F = 6.65, p=.01) with severity; and the AD8 (F = 29.23, p=.001) with caregiver distress. Findings provide support for the NPI-Q use in persons with dementia during acute illness.

iCCareD: The Development of an Algorithm to Identify Factors Associated With Distress Among Caregivers of Children and Youth Referred for Mental Health Services

Caregiver well-being plays an important role in children's development and a number of factors have been found to impact distress levels among caregivers of children and youth referred for mental health services. Further, caregiver distress impacts youth psychopathology, its acuity as well as related mental health interventions. The purpose of this study was to develop and validate an algorithm for identifying caregivers who are at greatest risk of experiencing caregiver distress. This algorithm was derived from, and will be embedded in, existing comprehensive interRAI child and youth instruments. Ontario data based on the interRAI Child and Youth Mental Health assessment instruments (ChYMH and ChYMH-DD) were analyzed to identify predictors of distress among caregivers of children and youth ages 4–18 years. Starting with proactive aggression, the algorithm uses 40 assessment items to assign one of 30 nodes that are grouped into five levels of risk. The interRAI ChYMH Caregiver Distress (iCCareD) algorithm was validated using longitudinal data from mental health agencies across Ontario and was found to be a good predictor among this sample with a c-statistic of 0.71 for predicting new or ongoing caregiver distress and 65% for both sensitivity and specificity using algorithm values of 3 or greater. This algorithm provides an evidence-based decision-support tool embedded within a comprehensive assessment tool that may be used by clinicians to inform their selection of supports and services for families.

Criticism in the Parkinson’s Caregiving Relationship: A Key Target for Intervention

Introduction: Caregiver distress is prevalent in Parkinson’s disease (PD) and predictive of negative health outcomes for both people with PD and caregivers. To identify future intervention targets, it is important to better elucidate the specific processes, such as criticism, that perpetuate burden. Objective: Evaluate the frequency and impact of criticism and reactivity to criticism in PD caregiving dyads. Methods: Eighty-three people with PD and their caregivers independently completed measures of criticism and physical and emotional health. Results: Criticism in the caregiving relationship was reported by 71.1% (n = 59) of people with PD and 80.7% (n = 67) of caregivers. Both perceived criticism and emotional reactivity to criticism were significant predictors of caregiver distress, adjusting for PD motor and non-motor symptom severity. In contrast, criticism was not related to PD depression. Conclusion: Criticism in the PD caregiving relationship is a clear target for psychotherapeutic intervention and may improve caregiver health and quality of life.