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 Experience of Homebound Older Adults During the COVID-19 Pandemic

BackgroundHomebound older adults have heightened risks for isolation and negative health consequences, but it is unclear how COVID-19 has impacted them. We examine social contact and mood symptoms among previously homebound older adults during the COVID-19 pandemic.Design/settingCross-sectional analysis using data from the National Health and Aging Trends Study (NHATS), a nationally-representative longitudinal study of aging in the USA.ParticipantsA total of 3,112 community-dwelling older adults in 2019 who completed the COVID-19 survey in the summer/fall of 2020.MeasurementsHomebound status was defined via self-report as rarely/never leaving home or leaving the house with difficulty or help in the prior month. We measured limited social contact during COVID-19 (in-person, telephone, video or email contacts ResultsAmong homebound older adults, 13.2% experienced limited social contact during COVID-19 vs. 6.5% of the non-homebound. Differences in social contact were greatest for contacts via email/text/social media: 54.9% of the homebound used this DiscussionIsolation among homebound older adults increased during COVID-19, partially due to differences in technology use. We must ensure that homebound persons have the connection and care they need including new technologies for communication during and beyond COVID-19

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

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

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

Medicaid Contributes Substantial Costs to Dementia Care in an Ethnically Diverse Community

Objectives: The main objective of this study was to estimate effects of dementia on Medicaid expenditures in an ethnically diverse community. Methods: The sample included 1,211 Medicare beneficiaries who did not have any Medicaid coverage and 568 who additionally had full Medicaid coverage enrolled in the Washington Heights-Inwood Columbia Aging Project (WHICAP), a multiethnic, population-based, prospective study of cognitive aging in northern Manhattan (1999–2010). Individuals’ dementia status was determined using a rigorous clinical protocol. Relationship between dementia and Medicaid coverage and expenditures were estimated using a two-part model. Results: In participants who had full Medicaid coverage, average annual Medicaid expenditures were substantially higher for those with dementia than those without dementia ($50,270 vs.$21,966, p < .001), but Medicare expenditures did not differ by dementia status ($8,458 vs.$9,324, p = .19). In participants who did not have any Medicaid coverage, average annual Medicare expenditures were substantially higher for those with dementia than those without dementia ($12,408 vs.$8,113, p = .02). In adjusted models, dementia was associated with a $6,278 increase in annual Medicaid spending per person after controlling for other characteristics. Discussion: Results highlight Medicaid’s contribution to covering the cost of dementia care in addition to Medicare. Studies that do not include Medicaid are unlikely to accurately reflect the true cost of dementia

Dependence Clusters in Alzheimer Disease and Medicare Expenditures: A Longitudinal Analysis From the Predictors Study

Introduction: Dependence in Alzheimer disease has been proposed as a holistic, transparent, and meaningful representation of disease severity. Modeling clusters in dependence trajectories can help understand changes in disease course and care cost over time. Methods: Sample consisted of 199 initially community-living patients with probable Alzheimer disease recruited from 3 academic medical centers in the United States followed for up to 10 years and had ≥2 Dependence Scale recorded. Nonparametric K-means cluster analysis for longitudinal data (KmL) was used to identify dependence clusters. Medicare expenditures data (1999-2010) were compared between clusters. Results: KmL identified 2 distinct Dependence Scale clusters: (A) high initial dependence, faster decline, and (B) low initial dependence, slower decline. Adjusting for patient characteristics, 6-month Medicare expenditures increased over time with widening between-cluster differences. Discussion: Dependence captures dementia care costs over time. Better characterization of dependence clusters has significant implications for understanding disease progression, trial design and care planning

Medicare Expenditures and Healthcare Utilization in a Multi-ethnic Community-based Population with Dementia from Incidence to Death

Introduction: While individuals live with dementia for many years, utilization and expenditures from disease onset through the end-of-life period have not been examined in ethnically diverse samples. Methods: We used a multiethnic, population-based, prospective study of cognitive aging (Washington Heights-Inwood Columbia Aging Project) linked to Medicare claims to examine total Medicare expenditures and health care utilization among individuals with clinically diagnosed incident dementia from disease onset to death. Results: High-intensity treatment (hospitalizations, life-sustaining procedures) was common and mean Medicare expenditures per year after diagnosis was $69,000. Non-Hispanic blacks exhibited higher spending relative to Hispanics and non-Hispanic whites 1 year after diagnosis. Non-Hispanic blacks had higher total (mean=$205,000) Medicare expenditures from diagnosis to death compared with non-Hispanic whites (mean=$118,000). Hispanics’ total expenditures and utilization after diagnosis was similar to non-Hispanic whites despite living longer with dementia. Discussion: Health care spending for patients with dementia after diagnosis through the end-of-life is high and varies by ethnicity