Caregiving over time: The impact of the behavioral and psychological symptoms of dementia on caregiver depression

This dissertation was motivated by the growth in the number of elderly with dementia in the United States and worldwide, and the consequent need to assist caregivers who face the chronic stress and consequent negative outcomes of caring for dementia patients for increasingly longer periods of time. While behavioral and psychological symptoms of dementia (BPSD) are routinely cited as important predictors of negative caregiving outcomes, they consist of a wide variety of patient behaviors (e.g., depression, physical aggression and paranoid delusions). This dissertation aimed to further elucidate the BPSD-caregiver relationship by determining if and why individual components of BPSD impacted caregiver depression, how these relationships change over time, and how the timing of behaviors across the disease course affect the caregiver. First, via a systematic literature review we found that despite the significant amount of research conducted examining BPSD and caregiving, the literature focused on the aggregate effect of symptoms rather than on the effect of individual symptoms. Existing studies categorized BPSD based on how they clinically manifest in the patient, rather than from the perspective of how they may differentially impact the caregiver. Second, we tested the differential impact of four symptom clusters derived based on their likely impact on the caregiver (accusatory/aggressive symptoms, non-threatening psychotic symptoms, depressive symptoms, and difficult behaviors) on caregiver depression. All clusters exerted similar effect sizes on caregiver depression, with patient depressive symptoms exerting the strongest and most consistently stable relationship with caregiver depression. The patient depression-caregiver depression relationship was mediated by both perceived burden to caregivers and impact of symptoms on the patient. Finally, we did not find evidence that the presence of individual BPSD early in the disease course impacted subsequent caregiver depressive symptoms. When examining change patterns over time, we found that most caregivers had stable trajectories of depressive symptoms, with a smaller subset showing more evidence for wear-and-tear over time. Given that there may be a differential effect of individual symptoms on caregivers, research in this field should continue to study the effects of individual BPSD symptoms rather than the cumulative effects of a range of behaviors and should also consider how symptoms may negatively impact caregivers by evoking empathy in addition to increasing burden for the patient. Future work should continue to utilize a longitudinal perspective on caregiving to better characterize the relationship between individual BPSD and caregiver outcomes and to understand varied outcome trajectories. The continued focus on understanding how, why and when BPSD are most detrimental to caregivers can help target and improve patient treatment and caregiver intervention efforts

The Heterogeneous Course of Depressive Symptoms for the Dementia Caregiver

Caregiving may be burdensome to caregivers, negatively affecting health and impacting decisions to institutionalize patients. It is unclear how caregiver depression changes over longer periods or whether heterogeneous trajectories for caregivers are apparent. The goals of this article are to characterize the course of depressive symptoms among caregivers over time and to examine the impact of baseline patient and caregiver characteristics on these trajectories. Patients with dementia and their caregivers were followed every 6 months for up to 6 years or until death (n = 133). Growth mixture modeling identified trajectories of caregiver depression over time. Most caregivers had stable trajectories of symptoms, with a smaller subset showing evidence of wear-and-tear. Patient clinical characteristics had no impact on symptom course for caregivers. Future work should utilize a longitudinal perspective and consider that there may be heterogeneous trajectories for caregivers. Those caregivers who follow a wear-and-tear trajectory may require targeted interventions to improve outcomes

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

Use and Cost of Hospitalization in Dementia: Longitudinal Results from a Community-Based Study

OBJECTIVES: The aim of this study is to examine the relative contribution of functional impairment and cognitive deficits on risk of hospitalization and costs. METHODS: A prospective cohort of Medicare beneficiaries aged 65 and older who participated in the Washington Heights-Inwood Columbia Aging Project (WHICAP) were followed approximately every 18 months for over 10 years (1805 never diagnosed with dementia during study period, 221 diagnosed with dementia at enrollment). Hospitalization and Medicare expenditures data (1999-2010) were obtained from Medicare claims. Multivariate analyses were conducted to examine (1) risk of all-cause hospitalizations, (2) hospitalizations from ambulatory care sensitive (ACSs) conditions, (3) hospital length of stay (LOS), and (4) Medicare expenditures. Propensity score matching methods were used to reduce observed differences between demented and non-demented groups at study enrollment. Analyses took into account repeated observations within each individual. RESULTS: Compared to propensity-matched individuals without dementia, individuals with dementia had significantly higher risk for all-cause hospitalization, longer LOS, and higher Medicare expenditures. Functional and cognitive deficits were significantly associated with higher risks for hospitalizations, hospital LOS, and Medicare expenditures. Functional and cognitive deficits were associated with higher risks of for some ACS but not all admissions. CONCLUSIONS: These results allow us to differentiate the impact of functional and cognitive deficits on hospitalizations. To develop strategies to reduce hospitalizations and expenditures, better understanding of which types of hospitalizations and which disease characteristics impact these outcomes will be critical

Wendell, Wake County, North Carolina : a community diagnosis including secondary data analysis and qualitative data collection

Wendell, North Carolina is a rural town of 3,946 people located 12 miles east of Raleigh (Wendell Chamber of Commerce, 1999). This document is intended to serve as a comprehensive community resource for the town of Wendell. It was created by graduate students in the Department of Health Behavior and Health Education at the School of Public Health, University of North Carolina at Chapel Hill with the support of Wake County Human Services. This document identifies the strengths, assets, and challenges that affect the community of Wendell. It is the product of a year-long Community Diagnosis project. A community diagnosis: …aims to understand many facets of a community including culture, values and norms, leadership and power structure, means of communication, helping patterns, important community institutions and history. A good diagnosis suggests what it is like to live in a community, what the important health problems in a community are, what interventions are most likely to be efficacious, and how the program would be best evaluated (Steuart, G.W. and Kark, S. L., 1962). As we began to work in Wendell, we discovered that “Wendell” is defined in different ways. The U.S. Bureau of the Census classifies Wendell by the zip code - 27591. The town government identifies Wendell as its incorporated two square mile area. Residents’ opinions on the definition of Wendell also vary. While some consider other small towns that share the Wendell zip code, like Riley Hill and Lizard Lick, to be part of Wendell, others see them as separate entities. For the purpose of this document, we are focusing on the incorporated town of Wendell. This decision was made because of limited time and resources for the project. Moreover, since Wendell's population makeup is different than other areas which share its' zip code, it would have been difficult to speak with enough residents to document, and do justice to, all perspectives that exist in the area. In order to get a complete picture of Wendell, it is imperative to look beyond official data and statistics and talk with the people who live in the town. Hence, this document includes information from a variety of sources and represents many viewpoints. The first phase of the community diagnosis occurred in the fall of 1998. Secondary data, which included population and health statistics as well as economic indicators, were gathered from local, state, and national health and service agencies. Local newspapers and town documents were also useful sources. Whenever possible, information was collected on Wendell, Wake County, and North Carolina for comparison purposes. The second phase was primary data collection, which occurred during the fall of 1998 and the spring of 1999. Primary data collection involved obtaining information from interviews with community members and service providers. In the final phase of this process a forum was held in Wendell, in which both quantitative and qualitative information was presented to community residents. The collection of secondary data was an important part of this project. Potential limitations, however, exist with any data set. For example, federal, state, and local agencies may not be able to update their statistics each year. Potential users of this document are therefore encouraged to look for the most current information available. This is especially relevant to Wendell which is situated in an area that has experienced significant growth in population and industry during the 1990s. Although the views of community members interviewed are faithfully recorded in the document, we could not speak to everyone in Wendell. As we began to work with the community, we realized that many communities exist within the larger one of Wendell. Individuals spoke about belonging to several communities at once creating multiple ties among Wendell residents. Town leaders are church members, parents, and belong to service organizations; church leaders are former Town Council members and business owners; community members head volunteer organizations and work in local businesses. These overlapping networks help to create a strong community with a deep sense of pride. Many of the most salient issues for Wendell residents were brought to light during our interviews. Community members were eager to talk about their town, its strengths, and the issues it currently faces. Community pride is strong in Wendell, and it is one of the town’s greatest assets. A reflection of this pride is the deep commitment to the town’s current and future success. Residents are involved in numerous social service clubs, which are extremely active and are assets to the community. There is also a strong commitment to faith in Wendell. Church programs and outreach work serve to unite the community and provide for citizens in need. Community members also take pride in downtown Wendell’s distinction as a nationally recognized historical landmark and strive to create a balance between the unique feeling that comes from small town life and the recent growth in the area. Wendell, like Wake County, has grown tremendously during the past several years and will probably continue to do so. A primary concern related to growth for Wendell is traffic. The construction of the U.S. 64 Bypass was identified as a priority in both primary and secondary data collection. The overburdened U.S. Highway 64 affects commuting time, access to services, and overall convenience for residents. It also has a significant impact on the growth of the area and, consequently, the quality of life for all. Residents and providers voiced a concern that further delay in the construction of the Bypass may ultimately have a negative impact on the growth of the entire eastern Wake region. Population growth challenges the full incorporation of new citizens into community life. Wendell, Wake County, and North Carolina are popular destinations not only for people from the U. S., but from other countries as well. Residents of Wendell also face the challenge of how best to assist an emerging Latino population who struggles with a language barrier. Industrial growth in the area will affect Wendell for years to come. There is much debate about the type of business and industry Wendell should attract, as well as how best to accomplish this. A primary reason for attracting businesses to the area is to increase the town’s tax base, which will reduce the tax burden on residents. Any discussion about attracting new business must also include services, medical and otherwise. The community will need to offer convenient services to its residents that are comparable to those of neighboring towns in eastern Wake County. As a promotional effort, local business owners, with the assistance of the town government, created an advertising campaign. A commercial and jingle were written (See Appendix F) and began playing on a local television and radio stations in the spring of 1999. This is a significant step for a town of its size. Looking to the future, Wendell seems to be standing on firm ground. A steady, but not overwhelming growth rate, coupled with low unemployment and increased economic possibilities, create a stable foundation from which to confront future challenges. We hope that the information presented in the following chapters will be a tool to assist with decision making for the present and future. It is also hoped that the data presented will provide pertinent information to facilitate frank and open discussion among town leaders and community members as they continue to strive to make Wendell the “home of progress and opportunity.”Master of Public Healt

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 symptom's 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

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

ABSTRACT 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 patient's 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

Caregiving for Older Adults with Obesity in the United States

Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/138397/1/jgs14918_am.pdfhttps://deepblue.lib.umich.edu/bitstream/2027.42/138397/2/jgs14918.pd

Misidentification of dementia in Medicare claims and related costs

Objectives: To examine how misidentification of dementia affects estimation of Medicare costs in a largely minority cohort of participants for whom accurate in‐person diagnoses are available. Design: Prospective cohort study. Setting: Washington Heights‐Inwood Columbia Aging Project, a multiethnic, population‐based, prospective study of cognitive aging of Medicare beneficiaries aged 65 and older. Participants: Individuals clinically diagnosed with dementia (n=495) and individuals clinically diagnosed without dementia (n=1,701). Measurements: Medicare claims‐identified dementia was defined according to the presence of any International Classification of Diseases, Ninth Revision, Clinical Modification diagnosis codes for Alzheimer's disease and related dementias in all available claims during the study period. Participant characteristics associated with claims misidentification of dementia were estimated using logistic regression. Effects of dementia misidentification on Medicare expenditures were estimated using generalized linear models. Results: Medicare claims correctly identified 250 of the 495 (51%) dementia cases and 1,565 of the 1,701 (92%) nondementia cases. Sensitivity of claims‐identified dementia was 0.51, and specificity was 0.92. Average annual Medicare expenditures were $14,721 for a beneficiary with a clinical diagnosis of dementia, and$18,208 for a beneficiary with claim‐identified dementia, suggesting an overestimation of $3,487 per person per year when Medicare claims were used to identify dementia. Total annual expenditures for all beneficiaries with claims‐identified dementia were$258,707 lower than that for all those who were clinically diagnosed, suggesting an overall underestimation of total Medicare expenditures if Medicare claims were used to identify dementia. Different types of misidentification have different effects on dementia‐related cost estimates. Average annual expenditures per person were highest for false positives. Conclusion: Misidentification of dementia in Medicare claims is common. Using claims to identify dementia may result in significantly biased estimates of the cost of dementia

Leveraging the Health and Retirement Study To Advance Palliative Care Research

Background: The critical need to expand and develop the palliative care evidence base was recently highlighted by the Journal of Palliative Medicine's series of articles describing the Research Priorities in Geriatric Palliative Care. The Health and Retirement Study (HRS) is uniquely positioned to address many priority areas of palliative care research. This nationally representative, ongoing, longitudinal study collects detailed survey data every 2 years, including demographics, health and functional characteristics, information on family and caregivers, and personal finances, and also conducts a proxy interview after each subject's death. The HRS can also be linked with Medicare claims data and many other data sources, e.g., U.S. Census, Dartmouth Atlas of Health Care. Setting: While the HRS offers innumerable research opportunities, these data are complex and limitations do exist. Therefore, we assembled an interdisciplinary group of investigators using the HRS for palliative care research to identify the key palliative care research gaps that may be amenable to study within the HRS and the strengths and weaknesses of the HRS for each of these topic areas. Conclusion: In this article we present the work of this group as a potential roadmap for investigators contemplating the use of HRS data for palliative care research.Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/140117/1/jpm.2013.0648.pd