Katherine Ornstein

The problem with “problem behaviors”: a systematic review of the association between individual patient behavioral and psychological symptoms and caregiver depression and burden within the dementia patient–caregiver dyad

BACKGROUND Behavioral and psychological symptoms of dementia (BPSDs) are routinely cited as important predictors of caregiver burden and depression. Although BPSDs include a wide variety of patient behaviors, they are routinely grouped together as one construct to differentiate them from cognitive symptoms of dementia. Determining the specific BPSDs that result in increased depression and burden for caregivers may elucidate the stress process for caregivers and facilitate the development of effective interventions for caregivers. METHODS We conducted a systematic review of English-language articles published from 1990 to 2010 to determine whether there are known symptoms or symptom clusters which exert undue negative impact on caregiver depression and burden. Additionally, we review systems used for classifying BSPD symptom clusters and determine whether there have been any mechanisms studied by which individual BPSD symptoms negatively affect caregivers. Finally, we examine how the role of timing of symptoms has been examined within the literature. RESULTS Thirty-five original research articles examined the impact of an individual behavior symptom on caregiver burden or depression/depressive symptoms. The studies had no consistent system for categorizing symptoms. Although depression, aggression, and sleep disturbances were the most frequently identified patient symptoms to impact negatively on caregivers, a wide range of symptoms was associated with caregiver burden and depression. CONCLUSIONS The evidence is not conclusive as to whether some symptoms are more important than others. The studies reviewed were largely exploratory relative to the differential impact of individual BPSDs and did not focus on testing causal mechanisms by which specific symptoms exert more impact on caregiver mental health than others. Future research may benefit from the re-conceptualization of BPSDs from the perspective of their impact on the caregiver to examine hypothesis-driven differences among BPSD symptom clusters.

To the Hospital and Back Home Again: A Nurse Practitioner‐Based Transitional Care Program for Hospitalized Homebound People

Homebound older adults may receive suboptimal care during hospitalizations and transitions home or to postacute settings. This 2‐year study describes a nurse practitioner (NP)‐led transitional care program embedded within an existing home‐based primary care (HBPC) program. The transitional care pilot program was designed to improve coordination and continuity of care, reduce readmissions, garner positive provider feedback, and demonstrate financial benefits through shorter length of stay, lower cost of inpatient stay, and better documentation of patient complexity. A detailed mixed‐methods evaluation was conducted to characterize the hospitalized homebound population and investigate provider feedback and program feasibility, effectiveness, and costs. Length of stay (LOS), case‐mix index, and admission‐related financial costs were compared before and after the intervention using a pre–post design. Structured focus groups were conducted with inpatient and primary care providers to collect feedback on the usefulness of and satisfaction with the program. The program improved communication between home‐based primary care providers and inpatient providers of all disciplines and facilitated the timely and accurate transfer of critical patient information. The intervention failed to decrease hospital LOS and readmission rate significantly for people who were hospitalized. The financial implications were reassuring, although future studies are necessary. This model of a NP‐led program may be feasible for enhancing inpatient management and transitional care for older adults in HBPC programs and should be considered to augment the HBPC care model.

Epidemiology of the Homebound Population in the United States.

IMPORTANCE Increasing numbers of older, community-dwelling adults have functional impairments that prevent them from leaving their homes. It is uncertain how many people who live in the United States are homebound. OBJECTIVES To develop measures of the frequency of leaving and ability to leave the home and to use these measures to estimate the size of the homebound population in the US population. DESIGN, SETTING, AND PARTICIPANTS Cross-sectional data from the National Health and Aging Trends Study collected in 2011 in the contiguous United States. Participants were a nationally representative sample of 7603 noninstitutionalized Medicare beneficiaries 65 years and older. MAIN OUTCOMES AND MEASURES We defined homebound persons as those who never (completely homebound) or rarely (mostly homebound) left the home in the last month. We defined semihomebound persons as those who only left the home with assistance or had difficulty or needed help leaving the home. We compared demographic, clinical, and health care utilization characteristics across different homebound status categories. RESULTS In 2011, the prevalence of homebound individuals was 5.6% (95% CI, 5.1%-6.2%), including an estimated 395,422 people who were completely homebound and 1,578,984 people who were mostly homebound. Among semihomebound individuals, the prevalence of those who never left home without personal assistance was 3.3% (95% CI, 2.8%-3.8%), and the prevalence of those who required help or had difficulty was 11.7% (95% CI, 10.9%-12.6%). Completely homebound individuals were more likely to be older (83.2 vs 74.3 years, P < .001), female (67.9% vs 53.4%, P < .006), and of nonwhite race (34.1% vs 17.6%, P < .001) and have less education and income than nonhomebound individuals. They also had more chronic conditions (4.9 vs 2.5) and were more likely to have been hospitalized in the last 12 months (52.1% vs 16.2%) (P < .001 for both). Only 11.9% of completely homebound individuals reported receiving primary care services at home. CONCLUSIONS AND RELEVANCE In total, 5.6% of the elderly, community-dwelling Medicare population (approximately 2 million people) were completely or mostly homebound in 2011. Our findings can inform improvements in clinical and social services for these individuals.

Longitudinal Relationships Between Alzheimer Disease Progression and Psychosis, Depressed Mood, and Agitation/Aggression

OBJECTIVES Behavioral and psychological symptoms of dementia (BPSD) are prevalent in Alzheimer disease (AD) and are related to poor outcomes such as nursing home placement. No study has examined the impact of individual BPSD on dependence, a clinically important feature that reflects changing patient needs and their effect on caregivers. The current study characterized independent cross-sectional and longitudinal relationships between three BPSD (psychosis, depressed mood, and agitation/aggression), cognition, and dependence to better understand the interplay between these symptoms over time. DESIGN The Predictors Study measured changes in BPSD, cognition, and dependence every 6 months in patients with AD. Cross-sectional and longitudinal relationships between individual BPSD, cognition, and dependence over 6 years were characterized by using multivariate latent growth curve modeling. This approach characterizes independent changes in multiple outcome measures over time. SETTING Four memory clinics in the United States and Europe. PARTICIPANTS A total of 517 patients with probable AD. MEASUREMENTS Columbia University Scale for Psychopathology, modified Mini-Mental State Examination, and Dependence Scale. RESULTS Both psychosis and depressed mood at study entry were associated with worse subsequent cognitive decline. Independent of cognitive decline, initial psychosis was associated with worse subsequent increases in dependence. Rates of increase in agitation/aggression separately correlated with rates of declines in both cognition and independence. CONCLUSIONS Although purely observational, our findings support the poor prognosis associated with psychosis and depression in AD. Results also show that agitation/aggression tracks declines in cognition and independence independently over time. Targeted intervention for individual BPSD, particularly psychosis, could have broad effects not only on patient well-being but also on care costs and family burden.

The Differential Impact of Unique Behavioral and Psychological Symptoms for the Dementia Caregiver: How and Why Do Patients' Individual Symptom Clusters Impact Caregiver Depressive Symptoms?

OBJECTIVE The behavioral and psychological symptoms associated with dementia (BPSD) are highly burdensome to caregivers. While BPSD consist of a wide variety of patient behaviors including depression, physical aggression, and paranoid delusions, it remains unclear whether specific symptoms have a differential impact on caregivers. The aims of this study were 1) to assess how individual BPSD, categorized based on how they may affect caregivers, impact depressive symptoms for dementia patient caregivers and 2) to test the pathways by which BPSD clusters impact caregiver depressive symptoms. DESIGN Cross-sectional analysis of data from a longitudinal study of patients with Alzheimer disease and dementia with Lewy bodies. SETTING Multiple U.S. dementia clinics. PARTICIPANTS One hundred sixty patient-caregiver dyads. METHODS Using multivariate generalized estimating equation logistic models, we analyzed the relationship between four BPSD clusters (patient depressive symptoms, accusatory/aggressive behaviors, nonthreatening psychotic symptoms, and difficult to manage behaviors) and caregiver depressive symptoms and assessed mediators of these relationships. RESULTS Only the presence of patient depressive symptoms was associated with caregiver depression (odds ratio: 1.55; 95% confidence interval: 1.14-2.1). This relationship was mediated by caregiver report of both the symptoms impact on the patient and perceived burden to caregivers. CONCLUSION Patient depressive symptoms may be the most important driver of the relationship between BPSD and caregiver depression. Research in this field should further test the effects of individual BPSD and also consider how symptoms may negatively impact caregivers by increasing burden and evoking empathy for the patient.

Reduction in Symptoms for Homebound Patients Receiving Home-Based Primary and Palliative Care

BACKGROUND Increasing numbers of patients are living with multiple, chronic medical conditions and functional impairments that leave them homebound. Home-based primary and palliative care (HBPC) programs provide access to health care services for this vulnerable population. Homebound patients have high symptom burden upon program enrollment. Yet little is known as to how individual symptoms are managed at home, especially over longer time periods. OBJECTIVES The purpose of this study was to determine whether high symptom burden decreases following HBPC enrollment. METHODS All patients newly enrolled in an HBPC program who reported at least one symptom on the Edmonton Symptom Assessment Scale (ESAS) were eligible for telephone ESAS follow-up. Patients received a comprehensive initial home visit and assessment by a physician with subsequent follow-up care, interdisciplinary care management including social work, and urgent in-home care as necessary. Multivariate linear mixed models with repeated measures were used to assess the impact of HBPC on pain, depression, anxiety, tiredness, and loss of appetite among patients with moderate to severe symptom levels at baseline. RESULTS One hundred forty patients were followed. Patient pain, anxiety, depression, and tiredness significantly decreased following intervention with symptom reductions seen at 3 weeks and maintained at 12 weeks. (p<0.01) Loss of appetite trended toward an overall significant decrease and showed significant reductions at 12 week follow-up. CONCLUSION In a chronically ill population of urban homebound, patient symptoms can be successfully managed in the home. Future work should continue to explore symptom assessment and management over time for the chronically ill homebound.

Symptom Burden in Chronically Ill Homebound Individuals

To document the degree of symptom burden in an urban homebound population.

Use and cost of hospitalization in dementia: longitudinal results from a community-based study.

The aim of this study is to examine the relative contribution of functional impairment and cognitive deficits on risk of hospitalization and costs.

Are There Sensitive Time Periods for Dementia Caregivers? The Occurrence of Behavioral and Psychological Symptoms in the Early Stages of Dementia

BACKGROUND The behavioral and psychological symptoms associated with dementia (BPSD) can be burdensome to informal/family caregivers, negatively affecting mental health and expediting the institutionalization of patients. Because the dementia patient-caregiver relationship extends over long periods of time, it is useful to examine how BPSD impact caregiver depressive symptoms at varied stages of illness. The goal of this study was to assess the association of BPSD that occur during early stage dementia with subsequent caregiver depressive symptoms. METHODS Patients were followed from the early stages of dementia every six months for up to 12 years or until death (n = 160). Caregiver symptoms were assessed on average 4.5 years following patients early dementia behaviors. A generalized estimating equation (GEE) extension of the logistic regression model was used to determine the association between informal caregiver depressive symptoms and BPSD symptoms that occurred at the earliest stages dementia, including those persistent during the first year of dementia diagnosis. RESULTS BPSD were common in early dementia. None of the individual symptoms observed during the first year of early stage dementia significantly impacted subsequent caregiver depressive symptoms. Only patient agitation/aggression was associated with subsequent caregiver depressive symptoms (OR = 1.76; 95% CI = 1.04-2.97) after controlling for concurrent BPSD, although not in fully adjusted models. CONCLUSIONS Persistent agitation/aggression early in dementia diagnosis may be associated with subsequent depressive symptoms in caregivers. Future longitudinal analyses of the dementia caregiving relationship should continue to examine the negative impact of persistent agitation/aggression in the diagnosis of early stage dementia on caregivers.

Understanding and Improving the Burden and Unmet Needs of Informal Caregivers of Homebound Patients Enrolled in a Home-Based Primary Care Program

The growing homebound population is heavily reliant on informal caregivers, who are increasingly burdened by their roles. This study describes informal caregivers of the homebound who remain caregivers at a 9-month follow-up and examines the impact of a home-based primary care (HBPC) program on caregiver burden and unmet needs using a prospective design with a pre—post intervention assessment. Informal caregivers of the urban homebound are similar to caregivers of other populations and have a broad range of unmet needs. The intervention described is the regular provision of multidisciplinary HBPC. Hundred fourteen caregivers of newly admitted patients complete a baseline interview. For the 56 caregivers who complete a 9-month follow-up interview, participation in HBPC is associated with a statistically significant decrease in overall caregiver burden. At 9 months, caregivers demonstrate an overall decrease in unmet needs, with a statistically significant decrease across two measured domains. These results suggest that the regular provision of multidisciplinary care in the home can mitigate the deleterious impact of informal caregiving.