To our knowledge, this study represents the first time clinical data from an electronic medical record have been combined with Medicare, Medicaid, MDS, and OASIS data for a cohort of community-dwelling older adults. These data highlight the burden of the sheer number of transitions in care including the dynamic nature of movement into and out of nursing facilities for older adults with dementia. These data also demonstrate the complex, inter-dependent, longitudinal patterns of transitions between nursing facilities, hospitals, and homes. Patients with dementia still receive a majority of their care in community settings and even patients accruing long-stay nursing facility stays frequently return home. When these patients return home from the nursing facility, many appear to rely only on informal caregivers given the number of patients who return home without evidence of formal in-home services. The majority of patients with a diagnosis of dementia in this cohort did not die in a nursing facility. Older adults with dementia generate more transitions in care in part because they receive more care in general. Each transition presents a new risk for miscommunication, duplication of services, medical errors, or provision of care in conflict with the patient’s and family’s goals of care.(18
) Taking a population or health systems perspective of managing care for older adults with dementia, many patients with dementia who utilize nursing facility care will not stay there for the duration of their dementing illness.
To provide collaborative care management for older adults with dementia, or to care for these patients within accountable care organizations or patient-centered medical homes, more attention will need to be directed to care within the nursing facility as a transitory site of care and as an extension of acute care. This is true not only because of the changing role of nursing facilities in terms of providing subacute rehabilitation, but also because patients in nursing facilities are often transferred back to hospitals, and hospitals are often the port of entry into nursing facilities. For example, programs seeking to decrease the rate of 30-day rehospitalizations among this cohort would need to focus particular attention on patients returning to the hospital from a nursing facility because nursing facilities were the most frequent interim site for 30-day rehospitalizations. Jencks et al. reported a 19.6% rehospitalization rate among a national sample of Medicare beneficiaries with a 17.7% rate in Indiana.(28
) Our data demonstrate a rehospitalization rate of 23% among older adults with dementia with the most common interim site of care being nursing facilities.
Because delaying institutionalization is a high priority for patients, providers, and payers, new models of dementia care and new therapeutic strategies often use the rate or timing of nursing facility care as a key outcome indicator.(24
) However, this outcome is problematic for three reasons. First, studies vary in their definitions and use of terms such as nursing home care, institutionalization, long-term care, or permanent nursing facility placement. Second, the reasons for nursing facility use for any given patient with dementia are often multi-factorial, including medical conditions other than dementia.(14
) In the models presented here, dementia is a strong predictor of nursing facility use and death but this relationship is partially attenuated when the models account for comorbid conditions. Third, nursing facility care is not necessarily inappropriate for any given patient with dementia and could represent good care or the lowest cost alternative.(39
) Much like the movement toward identifying preventable or inappropriate hospitalizations, the field of dementia care needs a better metric of appropriate use of nursing facility care.(40
Prior research has demonstrated that older adults with dementia generate excess health care costs and that older adults with comorbid conditions and dementia accrue greater health care costs than those patients with comorbid conditions without dementia.(41
) However, there are few prior studies presenting transition data similar to those reported here. Welch et al. assessed prospective nursing home and hospital utilization among 126 patients assembled from an Alzheimer Disease registry and reported higher rates of nursing home use than those reported here.(9
) Subjects were followed for 7–9 years; 75% of patients eventually used some nursing facility care, and 70% died. That study was not designed to report transitions between sites over time. Using four years of data from the Medicare Current Beneficiaries Survey, Kane and Atherly reported that older adults with dementia in the nursing home were less likely to use hospital services than those with dementia living in the community.(42
) We also found that the conditional probability of a nursing home to hospital transfer was less likely than a home to hospital transfer for patients with dementia. This may reflect changing goals of care but, as suggested by Kane and Atherly, it may also reflect a substitution of services.(42
) Among our cohort of older adults with dementia, patients were more likely to die in a home or hospital location than in the nursing home. This is in contrast to the findings of Mitchell et al. who used national death certificate data in 2001 to determine site of death among persons with dementia coded as the cause of death.(12
) In addition to the different methods between the two studies, the concepts of dying with
dementia as compared to dying from
dementia are also different. Our data demonstrate that some patients are transferred from a nursing facility to home or to the hospital when death is imminent, but our data suggest that most patients with dementia who die are not in the nursing facility. Finally, Gozalo et al. recently reported nationwide MDS data suggesting that many older adults with dementia residing in nursing homes have burdensome transfers to the hospital near the end-of-life and that the rate of these transfers varies by state.(43
The current study has limitations. First, we rely on the use of physician diagnoses to identify subjects with dementia. Dementia is known to be under-recognized among older primary care patients and the diagnosis may be delayed.(44
) Misspecification of dementia, however, would tend to decrease differences between groups. In sensitivity analyses, we also reset the clock for incident cases to the beginning of the observation period making all cases prevalent cases. These analyses do not change our findings of frequent transitions. Second, we do not include emergency department visits as a transfer in the site of care unless they resulted in a hospitalization. This would also result in an underestimate of total transitions. Third, we do not necessarily observe the full course of the dementing illness for any given subject and we observe a different segment of this disease course across subjects. For most patients diagnosed with dementia, life expectancy is less than 10 years and the median survival is approximately 5 years.(45
) Thus, our observation window does represent a majority of the typical disease course. As noted above, reassigning patients with incident dementia as demented from the outset of the study essentially makes all patients ever demented as prevalent cases of dementia at baseline. In these analyses, all of the findings of this study remain robust. Finally, the patient population is limited to a cohort of vulnerable elders attending an urban public health system in the United States. These results may not generalize to other settings.
In conclusion, care management programs for older adults with dementia will increasingly need to manage patients across the home, hospital, and nursing facility and to assist with coordination of care and goals of care across these sites and over time.(47
) Especially given the potential overlap in the content of care available across sites of care like the home, hospital, and nursing facility, the content of care within each of these sites merits as much attention as does coordination of care between sites. For states seeking to decrease Medicaid expenditures among long-stay nursing facility residents, efforts to revisit the goals of care regardless of site of care may offer more cost-saving and quality improvement opportunities than simply seeking to avoid nursing facility use. These data provide a broad overview of transitions in care over time among older adults with dementia. Future research will need to investigate the rationale, appropriateness, and outcomes of these transitions given the evolving role of nursing facility care.