Alzheimer s disease and related disorders. Hospital And ED Use Among Medicare Beneficiaries With Dementia Varies By Setting And Proximity To Death

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1 By Zhanlian Feng, Laura A. Coots, Yevgeniya Kaganova, and Joshua M. Wiener Hospital And ED Use Among Medicare Beneficiaries With Dementia Varies By Setting And Proximity To Death doi: /hlthaff HEALTH AFFAIRS 33, NO. 4 (2014): Project HOPE The People-to-People Health Foundation, Inc. ABSTRACT Hospitalizations and emergency department (ED) visits for people with Alzheimer s disease and related disorders are of particular concern because many of these patients are physically and mentally frail, and the care delivered in these settings is costly. Using data from the Health and Retirement Study linked with Medicare claims from the period , we found that among community-dwelling elderly fee-for-service Medicare beneficiaries, those who had dementia were significantly more likely than those who did not to have a hospitalization (26.7 percent versus 18.7 percent) and an ED visit (34.5 percent versus 25.4 percent) in each year. Comparing nursing home residents who had dementia with those who did not, we found only small differences in hospitalizations (45.8 percent versus 41.9 percent, respectively) and ED use (55.3 percent versus 52.7 percent). As death neared, however, utilization rose sharply across settings and by whether or not beneficiaries had dementia: Nearly 80 percent of community-dwelling decedents were hospitalized, and an equal proportion had at least one ED visit during the last year of life, regardless of dementia. Our research suggests that substantial portions of hospitalizations and ED visits both before and during the last year of life were potentially avoidable. Zhanlian Feng (zfeng@rti.org) is a senior research public health analyst in the Aging, Disability, and Long-Term Care program at RTI International in Waltham, Massachusetts. Laura A. Coots is a research associate in the Aging, Disability, and Long-Term Care program at RTI International in Waltham. Yevgeniya Kaganova is a senior programmer and analyst in the Health Data Informatics program at RTI International in Waltham. Joshua M. Wiener is a Distinguished Fellow and program director of the Aging, Disability, and Long-Term Care program at RTI International in Washington, D.C. Alzheimer s disease and related disorders place substantial emotional, physical, and financial burdens on patients, their families, and society. One important source of these burdens is frequent hospitalizations and emergency department (ED) visits, many of which are potentially avoidable. These encounters are disruptive, costly, and particularly challenging for people with dementia, who are vulnerable to many adverse health outcomes, including delirium, 1 falls, 2 functional decline, 3 physical restraints, 4 and agitation and related behavioral symptoms. 5 These problems are aggravated by the poor communication abilities and coexisting medical conditions associated with dementia. 6 Older people with dementia also have special difficulties in transitioning across care settings. 7 Hence, unnecessary or potentially avoidable hospitalizations and ED visits have important implications for both the quality of care and the quality of life for people with dementia, 8,9 especially at the end of life. 10 Few studies have focused on hospital and ED use, especially potentially avoidable use, among older people with dementia As a result, current understanding of hospital and ED use by people who have dementia compared to use by people who do not remains limited. Furthermore, there have been few analyses of the impact of dementia on hospital and ED use across community and institutional settings. Using data from the Health and Retirement April :4 Health Affairs 683

2 Study (HRS) linked with Medicare claims for the period , we examined the association of dementia with hospitalizations and ED visits, both overall and potentially avoidable, among fee-for-service Medicare beneficiaries ages sixty-five and older. By comparing patterns of use across care settings (community versus nursing home) and at different stages of the life course (long before death versus in the last year of life), our analyses provide a more complete picture than was previously available. Study Data And Methods Below we briefly describe our study data and population, variables, and statistical methods. A fuller description with additional details is provided in the online Appendix. 15 Data Sources We used five waves of HRS data merged with Medicare claims from the period The HRS is a nationally representative sample of adults ages fifty and older who are interviewed every two years. The survey gathers information on respondents cognitive and physical functioning as well as demographic, economic, and health characteristics. Medicare claims that are linked to the HRS provide data on hospital inpatient and outpatient stays as well as information on enrollment in Medicare managed care plans. To identify people with dementia, we used diagnosis codes for Alzheimer s disease and related disorders from Medicare claims, in conjunction with a HRSbased measure of severe cognitive impairment. Study Population Our study population included HRS respondents ages sixty-five and older who were fee-for-service Medicare beneficiaries and whose HRS data were linked to Medicare claims. Medicare managed care enrollees were excluded because no claims data were available for them. Our final sample consisted of 12,420 people who met all of the inclusion criteria, with 39,252 observations from the five waves of HRS data for the period Dependent Variables Two sets of outcomes were defined for hospitalizations and ED visits, respectively. For each set, a distinction was made between overall use and potentially avoidable use. For Medicare beneficiaries in the HRS sample, the period for each outcome was a calendar year during the year of the HRS survey; for decedents, the period was the last year of life. All outcomes were defined with the person as the unit of analysis. From the linked Medicare inpatient claims, we defined two dichotomous outcomes to indicate whether a beneficiary had any hospitalization and whether he or she had any potentially avoidable hospitalization. POTENTIALLY AVOIDABLE HOSPITALIZA- TIONS: Following Edith Walsh and colleagues, 16 we defined potentially avoidable hospitalizations using a list of conditions and diagnosis-related groups identified by an expert panel as either preventable or manageable outside of the acute care setting and appropriate for disabled Medicare and Medicaid beneficiaries. The list of conditions considered potentially avoidable for hospitalization was specific to the care setting, taking into account the fact that medical services are generally less available in home and community-based settings than in nursing homes. For example, acute, severe diarrhea due to gastroenteritis or food poisoning can often be managed in nursing homes without hospitalization, but patients with the same condition in the community may require hospitalization. A detailed list of these conditions and why they are considered potential avoidable for hospitalizations are available in the Appendix 15 and elsewhere. 16 We used one set of potentially avoidable conditions those deemed preventable or manageable in the community to identify potentially avoidable hospitalizations across community and institutional settings. We excluded conditions from the potentially avoidable list that could be preventable or manageable in nursing homes but that might not be so in community settings. The list of potentially avoidable conditions in the community was a subset of those considered potentially avoidable in nursing homes. Thus, our estimates of potentially avoidable hospitalizations for nursing home residents were conservative. ED VISITS: From hospital outpatient claims, we identified ED visits that did not result in inpatient admissions. ED visits that led to admissions were identified from inpatient claims. We defined three dichotomous measures of ED use to indicate whether a beneficiary had any outpatient ED visit that did not result in admission; any ED visit that did result in admission; and any ED visit, whether or not it resulted in admission. POTENTIALLY AVOIDABLE ED VISITS: We used the same set of principal diagnosis codes to define potentially avoidable ED visits that we used to define potentially avoidable hospitalizations. Given the lack of consensus on a definition of the former, we conservatively defined them as a subset of outpatient ED visits that did not lead to admissions, and the primary diagnosis codes associated with such ED visits were for any of the conditions deemed potentially avoidable for hospitalization. ED visits that resulted in the patient s being hospitalized were not included because in those cases, a physician had deemed the patient s condition serious enough to warrant an admission. 684 Health Affairs April :4

3 Providers in nursing homes may be more used to treating patients with dementia than community-based physicians are. Identification Of Dementia We identified people with dementia using diagnostic information from the Medicare claims and a validated cognitive impairment measure from the HRS that incorporated information on cognitive functioning from respondents or their proxies. The HRS-based cognitive measure was developed and validated using diagnostic data. 17,18 When a respondent could participate, cognitive performance was assessed using a modified Telephone Interview for Cognitive Status. A twentyseven-point cognition scale was created that included items to assess short-term memory, working memory, and speed of mental processing. Scores of 0 6 were considered to indicate dementia. When a respondent could not participate, his or her cognitive status was measured using an eleven-point scale that was based on proxy reports on memory deficiencies, limitations in the instrumental activities of daily living, and an interviewer s assessment, with scores of 6 11 indicating dementia. From the linked Medicare claims, we used the Chronic Conditions Data Warehouse indicator of a diagnosis of Alzheimer s disease, related disorders, or senile dementia. We created a dichotomous variable to flag beneficiaries who met the criterion of dementia from either of the two data sources. Other Variables In multivariate analyses we controlled for a range of risk factors in addition to dementia. These factors were the beneficiary s age, sex, race or ethnicity, level of education, marital status, types of health insurance, number of limitations in the activities of daily living, chronic conditions (number and specific conditions), self-reported health status, income, urban residence, census region, and survey year or year of death. Analytic Approach SAMPLE STRATIFICATION: We conducted stratified analyses on the following four subsamples: community residents (12,030 people with 37,590 observations), nursing home residents (1,112 people with 1,662 observations), community decedents (2,667 people), and nursing home decedents (635 people). (Note that some people contributed observations to the community residents subsample in earlier waves and also to the nursing home residents subsample in later waves. In addition, the people in the decedents subsamples contributed observations to other subsamples before their deaths.) We defined nursing home residence as residing in a nursing home at the time of the HRS interview at each wave. More details about the subsamples are provided in Appendix Tables 1 and STATISTICAL ANALYSIS: For the two subsamples of community residents and nursing home residents, we used a generalized estimating equation panel-data model to estimate the effect of dementia on each utilization outcome, independent of other risk factors. This modeling approach accounts for clustering and correlation between repeated measures within individuals, and it yields unbiased parameter estimates and standard errors. 19,20 For the two subsamples of decedents (with one observation per person), we used logistic regression models to estimate the effect of dementia on utilization during the last year of life. In additional descriptive analyses, we extended the window to five years before death to compare utilization patterns during years long before death and those during the last year of life. All analyses were adjusted using sampling weights. To account for time trends, the regression models also controlled for the HRS survey year or year of death. Limitations This study had a number of limitations. First, our analyses were restricted to feefor-service Medicare beneficiaries ages sixty-five and older and excluded managed care enrollees. Thus, our results are not necessarily generalizable to the overall older population. Second, our definition of dementia was intended to cast a wide net by combining diagnoses of Alzheimer s disease and related disorders from Medicare claims with assessments of severe cognitive impairment that is consistent with dementia from HRS survey data. The two sources did not always agree with each other, so the possibility of misclassification remains. Also, because we used a dichotomous indicator of dementia, we were unable to determine how disease severity or progression affected our study outcomes. Third, as in virtually all other studies of potentially avoidable hospitalizations and ED use, our April :4 Health Affairs 685

4 Exhibit 1 definitions of potentially avoidable hospitalizations and ED visits were the product of expert opinion rather than assessments of whether specific events were actually avoidable. In particular, standard definitions of potentially avoidable ED visits for older people have yet to be developed and empirically tested. Our definition assumed that the same conditions deemed to be potentially avoidable for hospitalizations were also potentially avoidable for ED visits, which might not be the case. Furthermore, to ensure that our estimate was conservative, we defined potentially avoidable ED visits as a subset of outpatient ED visits with primary diagnosis codes for any of the conditions deemed potentially avoidable for hospitalization. Fourth, our analytic sample did not include Medicare data for HRS respondents who did not give permission to link their Medicare records to the survey data or for nonrespondents to the HRS, who might be disproportionately cognitively impaired. However, research suggests that the use of proxy interviews for impaired respondents substantially eliminates attrition bias in measured cognition in the HRS. 21 Study Results The prevalence of dementia varied by setting and subsample (Exhibit 1). For example, the prevalence was seven times higher among nursing home residents (84 percent) than among community residents (12 percent). Forty-four percent of decedents had dementia in the last year of life. Among community-living residents, dementia was associated with significantly greater odds for Percentage Of Fee-For-Service Medicare Beneficiaries Who Had Dementia, Percent Total Community Nursing home Decedents SOURCE Authors analysis of Health and Retirement Study data linked with Medicare claims, NOTES The figure shows weighted percentages pooled over five waves of HRS data. Decedents are beneficiaries who died; the percentages of dementia for them are from their last year of life. all utilization outcomes, with adjusted odds ratios ranging from 1.49 to 1.83 (Exhibit 2). The odds of having any potentially avoidable hospitalization and any potentially avoidable ED visit were 74 percent and 51 percent higher, respectively, for people who had dementia than for those who did not. In contrast, among nursing home residents the difference was not statistically significant for any of the utilization outcomes. Among community decedents, there were no significant differences between those who had dementia and those who did not in the odds of hospitalization (either overall or potentially avoidable) in the last year of life (Exhibit 2). Only one of the utilization outcomes related to ED use differed significantly: Community decedents with dementia were more likely than those without dementia to have an ED visit that did not result in an admission. Among nursing home decedents, we found no statistically significant difference in any utilization outcome in the last year of life between those who had dementia and those who did not (Exhibit 2). Based on predicted probabilities from multivariate regression models, we also calculated for each outcome the adjusted percentages of people who had dementia and those who did not (Exhibit 3). These percentages show utilization levels and differences by dementia in absolute terms. For example, 26.7 percent of communityliving beneficiaries with dementia were hospitalized each year, compared to 18.7 percent of those without dementia. Seventy-eight percent of community decedents with dementia were hospitalized during the last year of life, compared to 79.1 percent of those without dementia. Results from the two community subsamples suggest a convergence in hospital and ED use over time, such that the gap in hospital and ED use between people who had dementia and those who did not diminished in the last year of life. This pattern is illustrated by the percentages of community decedents who were hospitalized during each of the five years before death (Exhibit 4). We observed a similar pattern in ED use (data not shown). Discussion Our results suggest several key findings that have policy implications. Varying Impact Of Dementia By Residential Setting First, the impact of dementia on hospital and ED use varied by residential setting. Specifically, among community-living fee-forservice Medicare beneficiaries, people who had dementia were significantly more likely than those who did not to be hospitalized and to visit 686 Health Affairs April :4

5 the ED, both overall and for potentially avoidable conditions, after other factors were adjusted for (Exhibits 2 and 3). In contrast, we found no significant difference in hospital use (overall or potentially avoidable) among nursing home residents by dementia status. The results from previous research are not directly comparable to ours because most earlier studies did not analyze data on community residents separately from data on nursing home residents. However, our findings of higher rates of overall hospitalizations and potentially avoidable hospitalizations among community residents who had dementia, compared to those who did not, are consistent with previous studies that focused on community residents. 11,22 High rates of hospitalization and ED use both overall and for potentially avoidable conditions among community residents with dementia may be attributable to multiple factors, such as deficiencies in the primary and other medical care available to such patients. In addition, few programs are specifically designed to reduce hospitalizations among community residents with dementia. In comparison, most nursing homes are equipped to provide medical and nursing care for many conditions that would be difficult to manage in community settings. With the shift in nursing homes to delivering more postacute care, their capacity for treating and managing complex conditions has increased. 23 Moreover, given the high prevalence of dementia in nursing homes, providers at those facilities may be more used to treating patients with dementia than community-based physicians are. This may partly explain our findings of little or no difference in hospital and ED use by dementia status among nursing home residents and of a substantial difference among community residents. In one study, the risk of hospitalization for nursing home residents with dementia was actually lower in facilities with a specialized dementia care unit or a high prevalence of residents with dementia, compared to facilities without such a unit or with a low prevalence of such residents. 24 The nursing home residents with dementia in our sample had high rates of hospitalization about 46 percent annually (Exhibit 3) although their rates were not significantly higher than those of residents without dementia. In addition, more than half of nursing home residents who were hospitalized had at least one potentially avoidable hospitalization, whether or not they had dementia. Several initiatives have been developed to address the issue of potentially avoidable hospitalizations, although they are not specifically aimed Exhibit 2 Effects Of Dementia On Hospitalization And Emergency Department (ED) Use Among Fee-For-Service Medicare Beneficiaries, Community residents Any hospitalization**** Any potentially avoidable hospitalization**** Any ED visit, outpatient only**** Any potentially avoidable ED visit**** Any ED visit resulting in admission**** Any ED visit, regardless of admission**** Nursing home residents Any hospitalization Any potentially avoidable hospitalization Any ED visit, outpatient only Any potentially avoidable ED visit Any ED visit resulting in admission Any ED visit, regardless of admission Community decedents Any hospitalization Any potentially avoidable hospitalization Any ED visit, outpatient only** Any potentially avoidable ED visit Any ED visit resulting in admission Any ED visit, regardless of admission Nursing home decedents Any hospitalization Any potentially avoidable hospitalization Any ED visit, outpatient only Any potentially avoidable ED visit Any ED visit resulting in admission Any ED visit, regardless of admission at nursing home residents with dementia. The initiatives include the Initiative to Reduce Avoidable Hospitalizations among Nursing Facility Residents and the Nursing Home Value-Based Purchasing Demonstration, both from the Centers for Medicare and Medicaid Services. Changes In Use Toward The End Of Life Second, hospital and ED use by people with and without dementia converged during the last few years of life. In the community, people with dementia were hospitalized and visited the ED more frequently than people without dementia for several years before death, but these differences in use diminished as death neared (Exhibit 4). One possible explanation is that dying is a difficult and complex process for all people living in the community. Thus, approaching death might have overwhelmed any differences in cognitive status, resulting in similar rates of Adjusted odds ratios SOURCE Authors analysis of Health and Retirement Study data linked with Medicare claims, NOTES The figure shows multivariate regression adjusted odds ratios controlling for dementia, age, sex, race or ethnicity, level of education, marital status, types of health insurance, number of limitations in the activities of daily living, chronic conditions (number and specific conditions), selfreported health status, income, urban residence, census region, and survey year (for residents) or year of death (for decedents). Error bars denote 95% confidence intervals. Full model results are provided in Appendix Tables 3 6 (seenote15intext).**p < 0:05 ****p < 0:001 April :4 Health Affairs 687

6 Exhibit 3 Hospitalization And Emergency Department (ED) Use Among Fee-For-Service Medicare Beneficiaries Who Had Dementia And Those Who Did Not, Community (%) Nursing home (%) Annual outcome Dementia No dementia Dementia No dementia Residents Any hospitalization **** Any potentially avoidable hospitalization **** Any ED visit, outpatient only **** Any potentially avoidable ED visit **** Any ED visit resulting in admission **** Any ED visit, regardless of admission **** Decedents (last year of life) Any hospitalization Any potentially avoidable hospitalization Any ED visit, outpatient only ** Any potentially avoidable ED visit Any ED visit resulting in admission Any ED visit, regardless of admission SOURCE Authors analysis of Health and Retirement Study data linked with Medicare claims, NOTES The table shows multivariate regression adjusted percentages controlling for the factors listed in Exhibit 2 notes. Full model results are provided in Appendix Tables 3 6 (seenote15intext).**p < 0:05 ****p < 0:001 Exhibit 4 Percentage Of Community-Living Fee-For-Service Medicare Beneficiaries Who Had Any Hospitalization In Each Of The Last Five Years Of Life, With Or Without Dementia, Percent with hospitalization Dementia No dementia SOURCE Authors analysis of Health and Retirement Study data linked with Medicare claims, NOTE The figure shows unadjusted percentages. hospitalization and ED visits. The sharp rise in hospitalizations in the last year of life for Medicare beneficiaries in the community was particularly striking: Nearly 80 percent of them had at least one inpatient admission, and an equal percentage had at least one ED visit, whether or not they had dementia. Furthermore, nearly half of those hospitalized in the last year of life had one potentially avoidable hospitalization. Again, these findings underline the challenges of providing adequate community-based medical care and long-term services and supports to older people that might reduce hospital admissions in their last year of life, whether or not they have dementia. Nursing Home Residents With Dementia In The Last Year Of Life Third, nursing home residents who died with dementia were just as likely as those without dementia to be hospitalized or have ED visits during the last year of life. This similarity may be driven in part by the high prevalence of dementia among nursing home decedents, which coupled with our relatively small sample size diminished our ability to detect a statistically significant effect of dementia. Research has suggested that nursing homes, physicians, and families are inclined to provide less aggressive end-of-life care to residents who have dementia than to those who do not. 25 Furthermore, aggressive treatments that require hospitalization of nursing home residents with advanced dementia may produce little improvement in their quality of life 26 and may be futile care. Hospice use might have played a role in mediating the impact of dementia on hospitalization and ED visits, which would be consistent with the increasing use and duration of Medicare-covered hospice care for nursing home residents during our study period. 27 Nonetheless, a high proportion of nursing home residents who were hospitalized in their last year of life almost two-thirds of decedents with dementia and more than half of those without dementia had at least one potentially avoidable hospitalization. Further Research Our results suggest a few possible topics for further research. Several 688 Health Affairs April :4

7 Hospice use might have played a role in mediating the impact of dementia on hospitalization and ED visits. health reform initiatives have focused on developing or evaluating programs designed to reduce readmissions or potentially avoidable hospitalizations. Assessing the impacts of these initiatives on community and nursing home residents with dementia will be important, given the growing number of people with Alzheimer s disease. About a quarter of elderly Medicare beneficiaries are enrolled in managed care organizations. 28 One major policy question is how Medicare Advantage plans should treat people with dementia. In addition, there is a high prevalence of dementia among patients in residential care facilities, such as assisted living facilities and board-and-care homes. 29 Thus, additional research could also assess utilization patterns among people living in these settings. Yet another topic for further investigation is the impact of Medicare hospice enrollment on hospital and ED use among people with dementia. Conclusion The aging of the population makes it likely that the number of people with Alzheimer s disease and other dementias will increase dramatically in the coming years. The high rates of hospitalizations and ED visits especially those that are potentially avoidable have clear implications for the patients quality of life. Similarly, the fact that substantial portions of hospitalizations and ED use are potentially avoidable is a policy concern and indicates a potential opportunity to achieve cost savings for Medicare and other payers. However, these savings may be offset by the cost of the initiatives aimed at reducing potentially avoidable utilization. The findings from this study underscore the importance of providing supportive services and advance care planning for older adults with dementia long before death, especially for those living in the community. Doing so could avoid unnecessary hospitalizations, improve quality of life, and save money. Results from an earlier version of this article were presented at the annual scientific meeting of the Gerontological Society of America, New Orleans, Louisiana, November 24, This research was funded in part by the Office of the Assistant Secretary for Planning and Evaluation (ASPE) in the Department of Health and Human Services (Contract No. HHSP WI). The statements contained in this article are those of the authors and do not necessarily reflect the policies and views of ASPE or RTI International. The authors gratefully acknowledge the useful comments on an earlier version of this article by Peter Kemper and Hakan Aykan. April :4 Health Affairs 689

8 NOTES 1 Inouye SK. Delirium in older persons. N Engl J Med. 2006;354(11): Mecocci P, von Strauss E, Cherubini A, Ercolani S, Mariani E, Senin U, et al. Cognitive impairment is the major risk factor for development of geriatric syndromes during hospitalization: results from the GIFA study. Dement Geriatr Cogn Disord. 2005;20(4): Pedone C, Ercolani S, Catani M, Maggio D, Ruggiero C, Quartesan R, et al. Elderly patients with cognitive impairment have a high risk for functional decline during hospitalization: the GIFA Study. J Gerontol A Biol Sci Med Sci. 2005;60(12): Sullivan-Marx EM. Achieving restraint-free care of acutely confused older adults. J Gerontol Nurs. 2001; 27(4): McCloskey RM. Caring for patients with dementia in an acute care environment. Geriatr Nurs. 2004; 25(3): Ouslander JG, Maslow K. Geriatrics and the triple aim: defining preventable hospitalizations in the long-term care population. 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