Participants were identified from a convenience sample of individuals who self-identified as the primary family caregiver of a person living with dementia and were enrolled in one of two pilot clinical trials aimed at improving mood between 2015 and 2017 at the University of California, San Francisco (UCSF, Institutional Review Board Protocol #16-20163). The focus of this report is on baseline data collected prior to any intervention. The first trial was an in-person study of 4-week mentalizing imagery therapy (MIT) for caregivers; the second trial comprised an add-on feasibility study of a smartphone MIT application for caregivers living far from the study site or who could not participate in person for other reasons (e.g. transportation, time); outcomes from both trials have been previously reported.13,40,41 Recruitment methods involved distributing flyers at community centers and events, and sending direct mail to patients living with dementia to share with their caregivers.
Inclusion criteria were reporting being the primary family member responsible for the care of a relative with dementia, being 40 years of age or older, English language fluency, and ability to give informed consent. Exclusion criteria included ideas of harming the relative with dementia, adult protective services report on file, primary psychiatric disorder other than unipolar major depression, caregiver cognitive impairment, unstable medical illness or planned surgery, and current drug or alcohol use disorder.
All participants provided written, informed consent. Following consent, participants filled out self-report questionnaires. 50 of the participants also completed onsite caregiver demographic interviews (e.g. length of time caregiving, number of hours per week, relative with dementia)41; this data was unavailable from the other 31 participants because they were evaluated as part of a remote add-on mobile application study for which limited funding was available and for which participants did not come to the study site. If participants were identified by baseline assessments as having active suicidal ideation, they could not proceed to the clinical trial portion of the study and instead were evaluated by a licensed psychiatrist and referred to standard of care treatment.
Measures:
The 17-item Adverse Childhood Experiences (ACEs) scale was used to measure childhood abuse, neglect, and household dysfunction.42,43 Similar to prior analyses, three subscales were computed: abuse (items assessing physical, emotional, or sexual abuse), neglect (physical, emotional), and household dysfunction (parents separated or divorced, mother abused or threatened, alcohol or substance use in home, mental illness in household, family member in prison).43 Self-reported SI in the past seven days was drawn from item #12 of the Quick Inventory of Depressive Symptoms Self-Report, “Thoughts of Death or Suicide”.44 Response choices for this item include 0=“I do not think of suicide or death.”, 1=“I feel that life is empty or wonder if it's worth living.”, 2=“I think of suicide or death several times a week for several minutes.”, 3=“I think of suicide or death several times a day in some detail, or I have made specific plans for suicide or have actually tried to take my life.” Depressive symptoms without SI were separately computed based on the total QIDS score minus the SI item. Caregiver burden was calculated as the total score of the Zarit Burden Interview.45 Neuroticism was estimated with a two-item subscale from the Ten Item Personality Inventory, which is rated from 1 to 7 on a Likert scale (minimum score 2, maximum score 14, higher indicating more neuroticism).46,47 Self-compassion was assessed with the Self Compassion Short Form.48
Statistical analysis:
All statistical analyses were performed with R version 4.3.2.49 To determine whether participants had experienced maltreatment, total scores were binarized for the ACE or ACE subscales (0 for none, 1 for 1 or more ACE), and these binary scores were used in all subsequent analyses. For SI, response of 1 or higher was coded as presence of SI, whereas a score of 0 indicated no SI. Total scores were calculated for the self-compassion, neuroticism, caregiver burden, and other depressive symptoms. Non-parametric Spearman correlation among all variables was performed. 2x2 tables were constructed on the presence/absence of SI and ACE. Relative risk ratios were determined with 95% confidence intervals using package “epitools” in R.50 Model significance was assessed by chi square.
Mediation analyses were performed on the ACE measure with highest statistical significance in a 4-step process. First, according to the procedures of Baron and Kenny,51 a pathway analysis was performed. The direct pathway from the ACE measure to SI (binary outcome) was computed using logistic regression. Second, the pathway from the ACE measure to the mediator (ordinal variable) was calculated using linear regression. Third, logistic regression was used to compute the pathway from the ACE measure to SI, adjusting for the effect of the mediator. Finally, to estimate the proportion of the variance of the direct pathway accounted for by the mediator, mediation analyses with bootstrapping 1000 repetitions was performed with R package “mediation”,52 using the presence/absence of the ACE measure as the predictor, neuroticism or self-compassion as the mediator, and the presence/absence of SI as the outcome.