Karolina Sadowska

Introduction: Dementia affects one in three older adults over age 85 and individuals with dementia constitute the fastest growing population of patients entering hospice care. While cognitive impairment is the hallmark of dementia, behavioral symptoms are reported in nearly all patients with advanced dementia, contributing to both the complexity of end‐of‐life care and caregiver burden. Methods: This qualitative study involved semi‐structured interviews with prescribing hospice clinicians and caregivers of patients living with dementia who previously received hospice services. Interviews included questions regarding common behavioral symptoms observed at end of life, side effects of benzodiazepine and antipsychotic medications, perceived effectiveness of medications used, and non‐pharmacologic treatment strategies. Data from audio‐recorded sessions were transcribed, coded to identify relevant concepts, and reduced to determine major themes. Results: A total of 23 hospice clinicians and 20 family caregivers participated in interviews. Agitation, including physical and verbal aggression, irritability, and anger, was identified as the most concerning behavioral symptom of dementia at end of life; when discussing agitation, clinicians focused on the safety of the patient living with dementia and others, while caregivers were concerned because they perceived it as a change in personality of their loved one. When using antipsychotics and benzodiazepines to address behavioral symptoms, caregivers viewed sedation as a concerning side effect, while clinicians were less concerned and noted this as an anticipated outcome of treatment. Overall, family caregivers perceived medications as more effective than clinicians. Finally, non‐pharmacologic interventions are generally preferred over pharmacologic treatments, but were reported as difficult to implement. Conclusions: Study findings can help to inform dialogue between hospice clinicians and caregivers regarding anticipated behavioral changes, as well as risks, benefits, and limitations of medication treatment options for behavioral symptom management. Further work is needed to understand the appropriate level of use of psychotropic medications for end‐of‐life dementia care.

Background: Behavioral health (BH) comorbidities in hospice patients are widespread and impact important outcomes, including symptom burden, quality of life, and caregiver wellbeing. However, evidence-based BH interventions tailored for the hospice setting remain understudied. Methods: We conducted a scoping review with the objective of mapping studies of interventions for BH comorbidities in the hospice setting. We included empirical studies among hospice patients of interventions with BH outcomes. We abstracted data on study design, intervention type, and patient characteristics. Results: Our search generated 7,672 unique results, of which 37 were ultimately included in our analysis. Studies represented 16 regions, with the United Kingdom (n=13) most represented. The most frequent intervention type was complementary and alternative interventions (n=13), followed by psychotherapeutic interventions (n=12). Most of the studies were either pilot or feasibility investigations. Fifteen studies employed a randomized controlled trial design. The most frequently utilized measurement tools for BH outcomes included the Hospital Anxiety and Depression Scale and the Edmonton Symptom Assessment Scale. Seventeen studies demonstrated statistically significant results in a BH outcome measure. BH conditions prevalent among hospice patients that were the focus of intervention efforts included depression symptoms, anxiety symptoms, and general psychological distress. No study focused on trauma-related disorders or substance use disorders. Conclusions: This scoping review reveals a concerning gap in research regarding evidence-based BH interventions in hospice settings, especially in the U.S. Despite extensive utilization of hospice care services and the high prevalence of BH conditions among hospice patients, randomized controlled trials focused on improving BH outcomes remain scant. The current BH practices, like the widespread use of benzodiazepines and antipsychotics, may not be rooted in robust evidence, underscoring an urgent need for investment in hospice research infrastructure and tailored clinical trials to test behavioral approaches to mitigate mental health outcomes at the end of life.