Michelle M. Hilgeman

Testing a Theoretical Model of the Stress Process in Alzheimer's Caregivers With Race as a Moderator

PURPOSE The primary aim of this study was to test the stress process model (SPM; Pearlin, Mullan, Semple, & Skaff, 1990) in a racially diverse sample of Alzheimers caregivers (CGs) using structural equation modeling (SEM) and regression techniques. A secondary aim was to examine race or ethnicity as a moderator of the relation between latent constructs (e.g., subjective stressors and role strain) in the SPM. SAMPLE Participants included White or Caucasian (n = 212), Black or African American (n = 201), and Hispanic or Latino (n = 196) Alzheimers CGs from the Resources for Enhancing Alzheimers Caregiver Health (REACH) II clinical trial. RESULTS SEM revealed that the Pearlin model obtains a satisfactory fit across race or ethnicity in the REACH II data, despite significant racial differences in each of the latent constructs. Race or ethnicity moderated the impact of resources on intrapsychic strain, such that CGs reported similar intrapsychic strain across race at lower levels of resources, but White or Caucasian CGs reported more intrapsychic strain than Black or African American or Hispanic or Latino CGs when resources are higher. IMPLICATIONS Strengths and weaknesses for each race or ethnicity vary considerably, suggesting that interventions must target different aspects of the stress process to provide optimal benefit for individuals of different cultural or ethnic backgrounds.

Legacy Activities as Interventions Approaching the End of Life

We examined the efficacy of an innovative family-based intervention designed to decrease caregiving stress and increase family communication among individuals with chronic, life-limiting illnesses and their family caregivers in a randomized, contact control group design. The intervention group received three home visits in which the interventionist actively worked with the family to construct a personal Legacy, usually a scrapbook with photographs or audiotaped stories. Control group families received three supportive telephone calls. Of the 42 families that entered the project, 31 families completed follow-up assessments within 9 to 10 weeks (14 control; 17 intervention; 72% African American) for a retention rate of 74%. Intervention caregivers showed reduced caregiving stress in comparison with control group caregivers, who showed increases in stress. Intervention patients reported decreased breathing difficulty and increased religious meaning. Caregivers and patients reported greater social interaction on the part of the patient. All participants in the intervention group initiated a Legacy activity and reported that Legacy improved family communication. Legacy interventions hold promise and are simple to implement.

Perceived Income Inadequacy as a Predictor of Psychological Distress in Alzheimer's Caregivers

The authors examined perceived income inadequacy as a predictor of self-reported depressive symptomatology and anxiety in the original sites of the Resources for Enhancing Alzheimers Caregiver Health I project. Perceived income inadequacy, self-reported household income, and control factors (e.g., subjective health) were entered into hierarchical regression analyses predicting psychological distress. Findings suggest that perceived income inadequacy and not household income significantly predicted more self-reported depressive symptomatology and greater self-reported anxiety. This supports previous findings that objective income measures alone are not adequate indicators of socioeconomic status in older adults.

End-of-Life Decision-Making, Decisional Conflict, and Enhanced Information: Race Effects

OBJECTIVES: To examine the effect of enhanced information regarding the risks, benefits, and life‐sustaining treatment alternatives on hypothetical medical decisions and decisional conflict in older, community‐dwelling Caucasian and African‐American adults.

Preserving Identity and Planning for Advance Care (PIPAC): preliminary outcomes from a patient-centered intervention for individuals with mild dementia

Objectives: The purpose of this pilot study was to conduct limited-efficacy testing of the newly developed Preserving Identity and Planning for Advance Care (PIPAC) intervention on self-reported and proxy-reported emotional and health-related outcomes of individuals in the early stages of dementia. Method: A two-group comparison design was implemented. Blocked randomization was used to assign individuals with mild dementia and a family contact to either (1) the four-session, multi-component intervention group focused on reminiscence and future planning or (2) the minimal support phone contact comparison group. Of the 19 enrolled dyads, 18completed post-treatment assessments (i.e. 10 intervention and 8 comparison group). Individuals with dementia were M= 82.8 (SD = 6.46) years old; 31.6% were men and 68.4% were women. Participants were predominantly white/Caucasian (n = 18, 94.7%) with one black/African-American (5.3%). Results: Analyses of covariance controlling for baseline differences revealed clinically meaningful differences (with medium to large effect sizes) between groups at post-treatment for depressive symptoms, quality of life, health-related quality of life indicators, and decisional conflict. Individuals in the intervention group were also observed to exhibit higher levels of coping. Feasibility data collected from participants and interventionists were encouraging. Conclusion: Emotion-focused, patient-centered interventions like PIPAC hold promise for advancing treatment options in the early and mild stages of dementia. A full-scale, randomized clinical trial of this intervention is warranted to determine both short-term and long-term impacts on clinical outcomes including improved depressive symptomatology, quality of life, and health-related factors that impact daily functioning in social environments.

Prospective end-of-life treatment decisions and perceived vulnerability: Future time left to live and memory self-efficacy

Objective: Public policy and opinion support autonomous medical decision-making; however, research on perceptions related to future functioning that may influence health-related decisions is limited. Additional research is needed to understand individual perceptions for engaging in future life-sustaining treatment decisions. Methods: Perceived time left to live and memory self-efficacy were assessed among 77 adults (M = 74.5 ± 7.18 years) indicating preferences for cardiopulmonary resuscitation, mechanical ventilation, and artificial feeding and fluids in hypothetical illness scenarios. Results: Participants with a more expansive perspective of future time, less perceived change in memory, greater perceived memory capacity, and greater depressive symptomatology and Blacks/African Americans had greater overall desire for treatment. Conclusion: Differences in perceived time left to live and memory beliefs affect treatment desires in ways that may not be recognized by families and/or physicians. Identifying perceptions associated with end-of-life treatment preferences may improve interventions that facilitate quality care through patient autonomy.

Alabama Veterans Rural Health Initiative: A Pilot Study of Enhanced Community Outreach in Rural Areas

PURPOSE Access, enrollment, and engagement with primary and specialty health care services present significant challenges for rural populations worldwide. The Alabama Veterans Rural Health Initiative evaluated an innovative outreach intervention combining motivational interviewing, patient navigation, and health services education to promote utilization of the United States Veterans Administration Healthcare System (VA) by veterans who live in rural locations. METHODS Community outreach workers completed the intervention and assessment, enrolling veterans from 31 counties in a southern state. A total 203 participants were randomized to either an enhanced enrollment and engagement outreach condition (EEE, n = 101) or an administrative outreach (AO, n = 102) condition. FINDINGS EEE participants enrolled and attended VA appointments at higher rates and within fewer days than those who received AO. Eighty-seven percent of EEE veterans attended an appointment within 6 months, compared to 58% of AO veterans (P < .0001). The median time to first appointment was 12 days for the EEE group and 98 days for the AO group (P < .0001). Additionally, a race by outreach group interaction emerged: black and white individuals benefited equally from the EEE intervention; however, black individuals who received AO took significantly longer to attend appointments than their white counterparts. CONCLUSIONS Results provide needed empirical support for a specific outreach intervention that speeds enrollment and engagement for rural individuals in VA services. Planned interventions to improve service utilization should ameliorate ambivalence about accessing health care in addition to addressing traditional systems or environmental-level barriers.

Development of a New Tool for Systematic Observation of Nursing Home Resident and Staff Engagement and Relationship

Purpose of Study To develop a structured observational tool, the Resident-centered Assessment of Interactions with Staff and Engagement tool (RAISE), to measure 2 critical, multi-faceted, organizational-level aspects of person-centered care (PCC) in nursing homes: (a) resident engagement and (b) the quality and frequency of staff-resident interactions. Design and Methods In this multi-method psychometric development study, we conducted (a) 120 hr of ethnographic observations in one nursing home and (b) a targeted literature review to enable construct development. Two constructs for which no current structured observation measures existed emerged from this phase: nursing home resident-staff engagement and interaction. We developed the preliminary RAISE to measure these constructs and used the tool in 8 nursing homes at an average of 16 times. We conducted 8 iterative psychometric testing and refinement cycles with multi-disciplinary research team members. Each cycle consisted of observations using the draft tool, results review, and tool modification. Results The final RAISE included a set of coding rules and procedures enabling simultaneously efficient, non-reactive, and representative quantitative measurement of the interaction and engagement components of nursing home life for staff and residents. It comprised 8 observational variables, each represented by extensive numeric codes. Raters achieved adequate to high reliability with all variables. There is preliminary evidence of face and construct validity via expert panel review. Implications The RAISE represents a valuable step forward in the measurement of PCC, providing objective, reliable data based on systematic observation.

Enabling Advance Directive Completion: Feasibility of a New Nurse-Supported Advance Care Planning Intervention

Adults who complete an advance directive (AD) are not consistently offered information about the risks, benefits, or alternatives (RBA) of the life-sustaining medical procedures addressed on standardized forms. The current article describes a new patient-centered nurse-supported advance care planning (NSACP) intervention focused on providing information about RBA of life-sustaining procedures. Fifty participants (mean age = 50.26 years) at a Veterans Affairs medical center were randomized to the NSACP intervention or a comparison condition. Before randomization, 78% (n = 39) expressed interest in RBA information. Of participants in the NSACP group, 94% (n = 30) completed an AD. Participants who received NSACP made more decisions to decline life-sustaining treatment than those who were randomized to the comparison group. Promising feasibility data include brevity (mean = 46 minutes), high patient satisfaction, participant retention, and treatment fidelity. The NSACP holds promise as a brief, educational intervention to support patients in completing an AD. [Journal of Gerontological Nursing, 44(7), 31-42.].

Identity processes as a predictor of memory beliefs in older adults.

ABSTRACT Objectives: The impact of identity processes (identity assimilation, identity accommodation, and identity balance) on memory beliefs was explored. Method: Individually administered questionnaires (e.g. depressive symptoms, subjective health, identity processes, memory beliefs) and a brief neuropsychological assessment of cognitive abilities were completed during a one-time interview with 82 participants aged 58–92 years-old (M = 74.68, SD = 10.95). Forty (49.4%) identified their race as White/Caucasian, 38 (46.9%) identified their race as Black/African American, and 3 (3.7%) indicated no primary racial/ethnic group. Results: Hierarchical regression analyses revealed that identity processes account for differences in memory beliefs beyond established predictors. Specifically, identity accommodation and identity balance predicted memory self-efficacy beyond depression and subjective health. These findings are congruent with identity process theory; however, the impact of identity assimilation in this population was unremarkable. Exploratory analyses also indicated that the identity processes have a stronger relationship to some domains of memory self-efficacy (i.e. anxiety, capacity) than others (i.e. perceived change, locus of control). Conclusion: Beliefs about memory and their integration into an adaptable, yet consistent self-concept are an important element of identity for aging individuals. Additional research is needed to determine the unique role of identity accommodation and identity balance in understanding cognitive functioning and ultimately the impact on potential clinical applications, such as related health-seeking behavior among older adults. Tailored interventions could be developed to facilitate optimal utilization of health care services at a time when early diagnosis of memory-related disorders is critical for future planning and care decisions.