Caregivers of patients with cancer are at significant risk for existential distress. Such distress negatively impacts caregivers’ quality of life and capacity to serve in their role as healthcare proxies, and ultimately, contributes to poor bereavement outcomes. Our team developed Meaning-Centered Psychotherapy for Cancer Caregivers (MCP-C), the first targeted psychosocial intervention that directly addresses existential distress in caregivers.

Nine caregivers of patients with glioblastoma multiforme (GBM) enrolled in a pilot randomized controlled trial evaluating the feasibility, acceptability, and effects of MCP-C, and completed in-depth interviews about their experience in the therapy. One focus group with three MCP-C interventionists was also completed.

Four key themes emerged from interviews: (1) MCP-C validated caregivers’ experience of caregiving; (2) MCP-C helped participants reframe their “caregiving identity” as a facet of their larger self-identity, by placing caregiving in the context of their life's journey; (3) MCP-C enabled caregivers to find ways to assert their agency through caregiving; and (4) the structure and sequence of sessions made MCP-C accessible and feasible. Feedback from interventionists highlighted several potential manual changes and overall ways in which MCP-C can help facilitate caregivers’ openness to discussing death and engaging in advanced care planning discussions with the patient.

The overarching goal of MCP-C is to allow caregivers to concurrently experience meaning and suffering; the intervention does not seek to deny the reality of challenges endured by caregivers, but instead to foster a connection to meaning and purpose alongside their suffering. Through in-depth interviews with caregivers and a focus group with MCP interventionists, we have refined and improved our MCP-C manual so that it can most effectively assist caregivers in experiencing meaning and purpose, despite inevitable suffering.

Neuropsychiatric symptoms are major determinants for caregiver distress and institutionalization in dementia. Little is known about the prevalence of neuropsychiatric symptoms and their association with use of medication, caregiver distress, and resource utilization in primary care.

We assessed frequency of neuropsychiatric symptoms in a sample retrieved from a primary care intervention study. Patients were screened for dementia by their primary care physicians. A study nurse assessed neuropsychiatric symptoms in 176 patients using the neuropsychiatric inventory (NPI) through face-to-face interviews by proxy during home visits. In addition, data on global cognition (MMSE), quality of life (QoL-AD), resource utilization in dementia (RUD), caregiver distress (BIS), and use of psychotropic medication in patients were obtained. We used linear mixed effect models taking into account the clustering of patients within general physician practices.

Clinically relevant neuropsychiatric symptoms (NPI score ≥ 4) occurred in about 53% of the patients. Higher NPI scores were significantly associated with more severe cognitive impairment, higher caregiver distress, and higher utilization of caregiver resources by patients but not with a formal diagnosis of dementia from the primary care physician. Use of antipsychotics was associated with higher NPI scores, particularly in non-psychotic domains.

Neuropsychiatric symptoms in a primary care cohort screened positive for dementia were associated with resource utilization and distress of caregivers. In contrast to guideline recommendations, the use of antipsychotics was associated with non-psychotic domains of behavioral symptoms. These findings underscore the relevance of neuropsychiatric symptoms for the design of future interventions in primary care.

Considering two advanced illnesses, cancer and end-stage dementia, the aim of this study was to describe the symptoms of caregiver psychological distress and burden.

In this cross-sectional study, regression analyses were calculated to explain the influence of psychological distress in caregiver burden. A t test was employed to compare differences between the symptoms of caregiver burden.

The percentage of psychological distress was similar between caregivers of cancer patients (77.6%) and caregivers of dementia patients (72.4%). In the regression analysis, cancer caregiver distress accounted for 27.9% of the variance in symptoms of burden, while dementia caregiver distress accounted for 24.4% of the variance in symptoms of burden. No significant differences were revealed when comparing caregiver burden symptoms between caregivers of the two advanced illnesses (t = 0.06; p = 0.94).

In end-of-life care for patients with dementia, due to significant levels of caregiver distress and burden symptoms, there is a need to support caregivers in the same way as is done for caregivers of cancer patients.

This study examines predictors of caregiver distress among community-based palliative care clients. Analyses are based upon interRAI Palliative Care (interRAI PC) assessment data from palliative home care programs in three regions in Ontario, Canada.

The study sample involved all community-based palliative care clients in Ontario who were assessed with the interRAI PC as part of normal clinical practice during pilot implementation of the instrument between 2007 and 2009 (N = 3,929). The assessments were performed by trained case managers and were used as the basis for determining service needs to be addressed through services contracted from provider agencies. The main study outcome of interest was the presence of one or more indicators of caregiver distress: helper(s) unable to continue caring activities; primary informal helper expresses feelings of distress, anger, or depression; family or close friends report feeling overwhelmed by person's illness.

Caregiver distress was evident among about 22% of palliative home care clients. Multivariate analyses identified included clinical instability (Changes in Health, End Stage disease, Signs and Symptoms [CHESS] scale), depressive symptoms, cognitive impairment, and positive outlook as significant client-level predictors. Significant caregiver characteristics included hours of informal care. Three service use/provider variables were significant predictors of caregiver distress: the specific home care agency, hospitalizations in the last 90 days, and nursing visits.

Caregiver distress affects approximately one in five palliative care clients in the community. This may lead to a number of adverse outcomes for the caregiver and client. The experience of distress is affected by client, caregiver, and agency characteristics that are readily identified by the interRAI PC assessment instrument. The present results point to the need for a care planning protocol that may be used on a targeted basis for clients experiencing or at elevated risk of caregiver distress.