Dementias Reported in Hospitalizations Among New York State Residents
New York State Department of Health
Alzheimer's Disease and Other Dementias Registry, February 2004
The Dementias Registry
The New York State Alzheimer's Disease and Other Dementias Registry (Dementias Registry) was established in 1986 in the New York State Department of Health to collect information about individuals diagnosed with Alzheimer's disease or another dementia. The only other dementias registry in the U.S. designed to be population-based is run through the University of South Carolina’s School of Public Health. Because the number of individuals with Alzheimer's disease could triple or quadruple in the next fifty years as the population ages, dementia is a growing public health concern for which accurate population-based information is needed.
Registry information can be used for research as well as public health planning and evaluation. The Dementias Registry is designed to collect a small amount of information on each individual with dementia, with additional detailed information collected only for specific research purposes. For example, registry information was used to select possible participants for a study of the needs of individuals caring for a relative with Alzheimer's disease (Toseland et al., 1999; Toseland et al., 2002).
Article 20 of the New York State Public Health Law requires reporting of individuals with dementia from staff in "any governmental or private agency, department, institution, clinic, laboratory, hospital, nursing care facility, health maintenance organization, association or other similar entity that provides medical care." Civil penalties can be levied for noncompliance with the law. In practice, dementia reports are received mainly from hospitals and nursing homes throughout the state. As medical advances lead to earlier diagnoses in individuals without other health conditions, efforts will be needed to develop an efficient mechanism for reporting that does not unduly burden individual physicians.
All information reported to the Dementias Registry is confidential. Strict procedures are in place to protect patients’ privacy. All employees are trained in handling confidential information. Research studies involving information that can identify the individual’s identity must be reviewed and approved by the New York State Department of Health’s Institutional Review Board, which protects rights to privacy and informed consent.
Information on the types of dementias diagnosed is collected along with sociodemographic information about the individual such as age, race, ethnicity, gender and address of residence. Either the individual’s actual name or a unique identifier formed from elements of the name and the Social Security number is collected. Information is also collected on the type of facility reporting (hospital, nursing home, physician office, specialized Alzheimer's disease program). Information about the hospitalization such as length of stay and the patient’s destination at discharge is also available.
Alzheimer's Disease and Other Dementias
Alzheimer's disease and other dementias are characterized by a number of progressive, debilitating symptoms. Dementia can result in a diminished quality of life not only for the affected individual but for the family as well. Individuals with Alzheimer's disease experience problems with memory and may also have other cognitive impairments such as difficulties with language, inability to recognize and name objects or people, and loss of judgment and problem-solving skills (Dugué, Neugroschl, Sewell and Marin, 2003). Behavioral symptoms such as agitation, wandering, and inappropriate behavior and psychological problems including delusions or hallucinations may also occur (Parnetti, Amici, Lanari and Gallai, 2001). Individuals with dementia are five times more likely to be admitted to a nursing home than others of the same age (Eaker, Vierkant and Mickel, 2002). One fourth of individuals with mild Alzheimer's disease progress to severe Alzheimer's within five years; another quarter die in this time period (Neumann et al., 2001). Dementia can also be present in individuals who have had strokes or who have Parkinson’s disease and a number of other less common diseases.
Individuals with dementia are generally over age 65 and therefore are also at increased risk for other chronic diseases such as cardiovascular disease and diabetes. The presence of dementia complicates the care of those with these other chronic diseases. Conversely, other chronic diseases complicate the care of the individual at home or in an institutional setting and further erode the individual’s quality of life. The burden of dementia on the patient, caregiver, and health care delivery system can be reduced through services such as aggressive diagnosis, management of disease and comorbidities, and provision of support and information to caregivers (Mittelman et al., 1996). The New York State Department of Health offers similar services on a small scale through Alzheimer's Disease Assistance Centers and Alzheimer's Disease Community Service Programs.
Purpose of This Report
This document begins a series of planned reports about Alzheimer's disease and other dementias and will focus on hospitalizations among New York State residents with dementias. The public health importance of a disease is frequently assessed through examination of deaths caused by the disease. Examination of mortality information is a poor tool for understanding the occurrence of dementia because a diagnosis of dementia is seldom listed on the death certificate.
We recognize that individuals with dementia but no other health conditions are likely to be omitted from this analysis. These individuals will be the focus of later studies and reports. By examining hospitalizations, we can begin to characterize the experience of New York’s frailest residents coping with dementias. Consequently, it should be recognized that the information presented in this report likely represents the experience of frail New Yorkers with dementia. The information in this report is useful for advancing our understanding about the health and social needs of individuals with dementia, their families and their caregivers and for understanding the impact of caring for individuals with dementias on hospitals in New York State.
Source of Data
Technology has changed how reports of dementia can be obtained. When the Registry was established, all reports were sent in on paper forms. In May 2003, the New York State Alzheimer's Disease and Other Dementias Registry eliminated paper reporting from hospitals, converting to computerized extraction of specific diagnostic codes from New York’s hospital discharge database, Statewide Planning and Research Cooperative System (SPARCS). This eliminates the need for hospital staff to select which diagnoses should be reported for which patients and also eliminates duplication of data entry. Through SPARCS, information on up to 16 diagnoses from over 2.4 million hospitalizations among state residents is collected each year. Past dementia reporting from hospitals via paper forms yielded approximately 20,000 reports each year compared to over 50,000 per year through SPARCS. In addition to accessing a large number of additional reports on individuals with dementia, SPARCS has in place established quality control mechanisms and relationships with hospitals. This report analyzes hospitalizations among individuals with dementia, whether or not the hospitalization occurred because of dementia. An individual could have been hospitalized more than once in the time period under study. Hospitalization was chosen as the unit of analysis to more accurately reflect the impact of dementias on hospital resources.
Completeness of Hospital Reporting
Completeness of hospital reporting depends on diagnoses of dementia being listed in the medical record. Alzheimer's disease and most other dementias are diagnosed clinically. Although it is commonly held that Alzheimer's disease can only be definitively diagnosed at autopsy, practice parameters developed by the American Academy of Neurology indicate that Alzheimer's disease can be diagnosed clinically with good reliability (Knopman, DeKosky, Cummings, et al., 2001). Financial disincentives to reporting dementia have also existed in the past. Insurers have denied payment for services such as physical, occupational or speech therapy to patients with Alzheimer's disease in the mistaken belief that patients could not benefit from therapy. Automatic denial based solely on a diagnosis of dementia has been prohibited since September 2001 (Centers for Medicare & Medicaid Services). Completeness can also be compromised in hospital reporting because individuals with dementia are often hospitalized for other illnesses such as cardiovascular disease or respiratory disease. Hospitals may vary in the degree to which diagnoses secondary to the principal diagnosis are reflected in the information reported to SPARCS. Because of these limitations, this report is likely to underestimate the impact of dementia in hospitals in New York State. Quality assurance measures such as professional education can address some of these issues.
The table below lists the dementias included in this report by ICD-9-CM code.
|Forms of Dementia||ICD-9-CM Code|
|Alzheimer's Disease||290.0-290.3, 290.8
|Dementia in Conditions Specified Elsewhere||046.1, 046.2
291.1, 291.2, 292.82
In reporting, hospitals can list up to 16 different diagnoses for each hospitalization. Reports on hospitalizations were included in this analysis if any of the above ICD-9-CM codes was present as a diagnosis whether or not the dementia was newly diagnosed. Coding some conditions using ICD-9-CM requires two codes to signify presence of dementia, making grouping by type of dementia complex. For example, records for an individual with dementia as a result of Parkinson’s disease include the code for Parkinson’s disease and a code for dementia in conditions specified elsewhere.
Some judgments needed to be made in grouping dementias for this report. A small number of individuals had numerous, inconsistent forms of dementia reported in a single hospitalization, likely as a result of changes in clinical opinion about a diagnosis being reflected in the medical chart. Where possible, the primary diagnosis was used in assigning these individuals to a type of dementia. If vascular dementia was coded in addition to dementia in conditions specified elsewhere without an additional code for another condition apart from vascular dementia, the hospitalization was grouped with vascular dementia. If the ICD-9-CM code for unspecified dementia was reported in addition to a more specific diagnosis, grouping was based on the more specific diagnosis. Some individuals were diagnosed with more than one form of dementia that were not inconsistent, including individuals with both Alzheimer's disease and vascular dementia or individuals with Alzheimer's disease and dementia due to Parkinson’s disease.
Accuracy of coding is also complicated by the fact that the terminology reflected in ICD-9-CM coding has not kept pace with terms used by physicians and neurologists in discussing dementias. Recent practice parameters from the American Academy of Neurology discuss criteria for diagnosing Alzheimer's disease, vascular dementia, dementia with Lewy bodies, and frontotemporal dementia (Knopman et al., 2001). Several codes are applicable in documenting Alzheimer's disease. In contrast, no specific codes existed for frontotemporal dementia and dementia with Lewy Bodies prior to October 2003 (ICD-9-CM Coordination and Maintenance Committee, 2002). Consequently, the consistency of coding dementias in the medical record from facility to facility is unknown given disparities between how physicians describe dementia and limitations in corresponding choices of codes. It is possible that one individual may receive different dementia diagnoses for different hospital stays. Assessing diagnoses in individuals across time is beyond the scope of this report on hospitalizations but will be included as longitudinal studies of individuals with dementia are undertaken.
Hospitalizations Among New York State Residents with Dementia
This report will examine hospitalizations occurring between 1997 and 2001 that included a diagnosis of dementia among residents of New York State. Comparisons will be made to year 2000 hospitalizations among older New Yorkers (those age 65 or older) and to information on New Yorkers from the Year 2000 US Census where applicable. Individuals with dementia accounted for nearly 58,000 hospitalizations each year between 1997 and 2001 for a total of 289,937 hospitalizations. This represents approximately 2.4 percent of the total 2.4 million hospitalizations and seven percent of the hospitalizations among older New York State residents occurring each year.
The number of individuals with Alzheimer's disease is expected to grow as the population ages. The number of hospitalizations that included a diagnosis of dementia in New York State remained somewhat stable across the years under study (Figure 1). Women experienced twice the number of hospitalizations listing Alzheimer's disease as men (Figure 1). Because hospitalizations generally occurred among patients with dementia for diseases other than the dementia itself, hospitalization information alone is not useful in assessing trends in prevalence of dementia. However, looking at hospitalizations among patients with dementia provides a perspective on a vulnerable subset of individuals with dementia.
Dementia was considered the principal diagnosis in only nine percent of hospitalizations that included a dementia diagnosis and in less than one percent of all hospitalizations among older New Yorkers (Figure 2). Diseases of the circulatory system, particularly ischemic heart disease, were much less commonly the principal diagnosis in hospitalizations that included a diagnosis of dementia (Figure 2). On the other hand, pneumonia, aspiration pneumonia, dehydration and urinary tract infections were more frequent principal diagnoses for hospitalizations that included a diagnosis of dementia (Figure 2).
Women represent 60 percent of New York State’s population age 65 or older. Nearly two-thirds of the hospitalizations that included a diagnosis of dementia occurred among women (Figure 3). Patients who were hospitalized with dementia were among New York State’s oldest citizens. One third of the men and nearly half of the women were age 85 or older (Figures 4 and 5). White patients accounted for the majority of hospitalizations among individuals age 65 or older (77%) and the majority of hospitalizations that included a diagnosis of dementia (72%) (Figure 6). Black individuals accounted for 10 percent of all hospitalizations among New York State’s older hospitalized individuals, but 14 percent of the hospitalizations that included a diagnosis of dementia (Figure 6).
In nearly all regions of the state, the proportion of hospitalizations that included a diagnosis of dementia was comparable to the proportion of hospitalizations among older residents (Figure 7). This suggests that regions are probably comparable in prevalence of dementia in its residents and that recording of dementia in the medical record is also comparable from region to region. One exception was New York City, which had a somewhat larger share of the hospitalizations that included a dementia diagnosis relative to all hospitalizations in older residents.
A large proportion of hospitalizations occurred on an urgent or emergency basis for all older New Yorkers and for individuals hospitalized with a recorded diagnosis of dementia (Figure 8). When a hospitalization included a diagnosis of dementia, the patient was almost three times more likely to be discharged to a skilled nursing facility than were older hospitalized New Yorkers generally (Figure 9). The proportion of patients admitted to the hospital from a nursing home cannot be determined from these data. Two-fifths of the patients hospitalized with a diagnosis of dementia returned home, some with supportive services such as referral to a home health agency.
As this report shows, only seven percent of hospitalizations among individuals age 65 or older included a diagnosis of dementia, considerably lower than might have been expected based on estimates of prevalence in the scientific literature (Hy and Keller, 2000). Even among New York’s oldest residents, those over age 95, dementia was noted in only 12 percent of their hospitalizations. In contrast, Hy and Keller (2000) estimate that one fifth of men and one third of women in this age group experience moderate to severe Alzheimer's disease. These differences highlight that other sources of information in addition to hospitalizations are needed to fully understand the impact of dementias on New York State residents.
Additional study is needed to determine if dementia is being diagnosed but not recorded in the medical chart or if individuals are not being diagnosed early on. Early diagnosis is important to the patient and family to ensure access to state-of-the-art medical care and provision of support.
A large proportion of hospitalized individuals with dementia entered the hospital through the Emergency Department. Hospitals need to review if their current Emergency Department procedures best meet the needs of patients in need of emergency care who also have dementia.
Centers for Medicare & Medicaid Services. Program Memorandum Intermediaries/Carriers Transmittal AB-01-135, CMS-Pub 60AB, September 25, 2001. Available from: URL:http://www.cms.gov/manuals/pm_trans/AB01135.pdf.
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Figure 1. Numbers of Hospitalizations Which Included a Diagnosis of Dementia, by Types of Dementia by Year
Alzheimer's disease was by far the most frequent type of dementia recorded for both men and women hospitalized with dementia. The number of hospitalizations among women with Alzheimer's disease was twice the number among men. The numbers of men and women with vascular dementia, another dementia or a combination of dementias were comparable. No consistent trends over time were noted.
Figure 2. Principal Diagnosis in Hospitalizations, New York State Residents
- Diseases of the circulatory system were the most common principal diagnosis in both groups of patients but less often the principal diagnosis in patients with dementia.
- Dementia was the principal diagnosis in less than one percent of hospitalizations in older patients but was the third most frequent principal diagnosis for hospitalizations that included a dementia diagnosis (9%).
- Infectious disease was more than twice as likely to be the principal diagnosis among those with a diagnosis of dementia compared to all older patients.
- Endocrine, nutritional and metabolic diseases and diseases of the respiratory and genitourinary systems were also more often listed as a principal diagnosis among those with a diagnosis of dementia compared to all older patients.
Figure 3. Gender Reported in Hospitalizations, New York State Residents
Of the hospitalizations that included a diagnosis of dementia, 64 percent occurred in women compared to 58 percent of all hospitalizations among older state residents. Women make up 60 percent of the New York State population age 65 or older.
Figure 4. Age Reported in Hospitalizations, New York State Residents - Men
All Patients 2000
Patients with Dementia 1997-2001
Men hospitalized with dementia were considerably older than all men hospitalized. A third were age 85 or older. Only five percent of all hospitalizations occurred among men in this age group. Less than one percent of all men living in New York State are age 85 or older.
Figure 5. Age Reported in Hospitalizations, New York State Residents - Women
All Patients 2000
Patients with Dementia 1997-2001
Nearly all hospitalizations that included a diagnosis of dementia among women occurred in women ages 65 and older; in nearly half, women were age 85 or older. In comparison, nine percent of all hospitalizations among women occurred among women age 85 or older. Two percent of all women living in New York State are age 85 or older.
Figure 6. Race Reported in Hospitalizations, New York State Residents
Black individuals accounted for 10 percent of all hospitalizations among New York State’s older hospitalized individuals, but 14 percent of the hospitalizations that included a diagnosis of dementia. Eleven percent of black New Yorkers are age 65 or older. The proportion of all hospitalizations and hospitalizations that included a diagnosis of dementia were comparable for individuals who were of a racial group other than black or white. Hispanic patients accounted for five percent of all hospitalizations among older individuals and five percent of hospitalizations that included a diagnosis of dementia (not shown).
Figure 7. Region of Residence Reported in Hospitalizations, New York State Residents
Residents of New York City accounted for 39 percent of the hospitalizations among older patients but 44 percent of the hospitalizations that included a diagnosis of dementia. Hospitalizations in other regions more closely mirrored the regional distribution of the population age 65 or older.
Figure 8. Type of Admission for Hospitalizations, New York State Residents
A large proportion of hospitalizations among older patients occurred on an emergency or urgent basis (82%). Among hospitalizations that included a diagnosis of dementia, nearly all admissions were either urgent or emergencies.
Figure 9. Discharge Destination in Hospitalizations, New York State Residents
Home was the most frequent destination after discharge in hospitalizations among all patients age 65 or older. When a hospitalization included a diagnosis of dementia, the patient was almost three times more likely to be discharged to a skilled nursing facility. Death occurred slightly more frequently among patients for whom a diagnosis of dementia was recorded.