Unique Service-Related Characteristics among Home Health Care Patients with Cognitive Impairment in the United States

Special Article - Geriatric Care

Ann Nurs Res Pract. 2017; 2(1): 1017.

Unique Service-Related Characteristics among Home Health Care Patients with Cognitive Impairment in the United States

Kaplan DB*

Adelphi University School of Social Work, USA

*Corresponding author: Daniel B Kaplan, Adelphi University School of Social Work, Garden City, NY, USA

Received: February 17, 2017; Accepted: March 06, 2017; Published: March 13, 2017


National home health survey data are examined to compare service-related psychosocial and clinical characteristics in patients with and without advanced cognitive impairment. Knowing such differences will allow providers to assess patient needs in areas where groups differ. Cognitive status and psychosocial and clinical characteristics are examined through bivariate analyses of 2007 National Home and Hospice Care Survey data, the most recent nationally representative sample survey in this series of cross-section sample surveys of U.S. home health and hospice agencies. Significantly more patients with cognitive impairment have greater medical daily care needs, medical emergencies, incontinence, and difficult behaviors. Unique service-related needs among patients with cognitive impairment warrants tailored approaches to care, including more direct care and behavioral interventions.

Keywords: Dementia; Neurocognitive disorder; Cognitive impairment; Homecare; Home health services


ADL: Activities of Daily Living; ICD-9: International Statistical Classification of Diseases and Related Health Problems; MICE: Multiple Imputation by Chained Equations; NCHS: National Center for Health Statistics; NHHCS: National Home and Hospice Care Survey; OASIS: Outcome and Assessment Information Set


A basic understanding of patient characteristics, illness levels, and care needs is required for designing appropriate interventions to assist individuals confronting disorders resulting in complex and multidimensional disabilities. Yet, such characteristics and needs, while routinely documented for all home health care patients, have not been appropriately assessed among people with cognitive impairment nor reported in the research literature. To assist practitioners and policy makers in identifying appropriate home health care strategies based on valid data, this study examines nationally-representative home health care survey data to identify illness-levels and servicerelated needs among patients with moderate-to-severe cognitive impairment.


A continuum of health, mental health, and aging services programs provides formal care services for older adults and those living with disabilities [1]. Formal, paid care services are a vital resource in the dementia care arena because some people with dementia do not have opportunities for informal care and even those with informal providers benefit from formal services when burdens of care surpass the ability or availability of informal providers. The location of formal care for older adults has been shifting out of institutions and into private homes since the passage of Medicare and Medicaid legislation in the Social Security Act of 1965 [2]. Home health care agencies offer health-oriented services, such as skilled nursing, wound care, medication administration and social services. They provide shortterm, post-acute care as well as ongoing support for people with functional disabilities. These services allow people to remain living at home after they acquire a disability or chronic illness as well as during brief periods of rehabilitation after hospital procedures [3].

Dementia is a broadly defined clinical term used to describe a syndrome that is common to many diseases, and cognitive impairment is characteristic of these heterogeneous disorders [4]. The most current conceptualization of dementia names the syndrome Neurocognitive Disorder [5]. Neurocognitive disorder causes dysfunction and disability, dependence upon assistance from others for Activities of Daily Living (ADL), depression, and premature institutionalization and death [6-9]. Neurocognitive disorder is known to complicate the treatment of co-occurring illnesses such as cancer, diabetes, congestive heart failure, and chronic obstructive pulmonary disease- all of which are common among older adults [10]. People with neurodegenerative diseases not only need an extraordinary level of care and supervision, but are also known to have hospital and nursing home stays that are twice as long as their peers and suffer from repeated health care crises related to malnutrition and accidental injury [10]. These medical complications lead to significantly elevated costs to health insurance programs, such as Medicare and Medicaid, and higher out-of-pocket healthcare expenses incurred by older adults with neurodegenerative diseases and their families [11,12].

It is reasonable to expect that home health care patients with cognitive impairment differ from patients without cognitive impairment in meaningful ways, with particular distinctions in their severity of disability and particular needs that could be addressed by home health care providers. To date, there have been no studies describing differences between these groups of patients. Instead, limited studies on the relationships between neurocognitive disorder and community-based services have focused primarily on individual determinants of the use of different kinds of community-based services, caregiver correlates of formal help-seeking, or influences on community tenure [13-18]. A systematic review of services used by community-dwelling individuals with dementia found that home health care is the community resource most often used among people with dementia [19].

An important step toward assessing the effectiveness of homebased care is to understand the unique service-related characteristics of home health care patients with cognitive impairment, such as the availability of informal supports, levels of functional impairment and needs for specific types of care, the presence of behavioral disturbances, and which insurance programs will pay for and structure the scope of services. This study is the first to compare these characteristics for home health care patients with and without documented advanced cognitive impairment.

Materials and Methods

This study makes use of data from a nationally representative sample survey conducted by the Long-term Care Statistics Branch of the Division of Health Care Statistics of the National Center for Health Statistics (NCHS), specifically the 2007 National Home and Hospice Care Survey. The National Home and Hospice Care Survey (NHHCS) is part of a continuing series of cross-section sample surveys of U.S. home health and hospice agencies which began in 1992. It was designed to gather information that describes home health and hospice agencies, staff members, services, and patients. These data are essential in answering the research questions driving this inquiry, and the 2007 survey was the seventh and most recent survey from this series. It was a redesigned and expanded version of its predecessors, with many new data items, larger sample sizes, and the use of a computer-assisted personal interviewing system. Participating agencies were either certified by Medicare and/or Medicaid or were licensed by a state, and all provided home health and/or hospice services. This study focuses exclusively on home health care agencies and patients.

More than one million older adults received home health care each day in the U.S in 2007 [20]. The 2007 wave of the National Home and Hospice Care Survey used a stratified two-stage probability sample design to gather information about a nationally-representative sample of these patients. The first sampling stage involved the selection of home health and hospice agencies from the total sample frame of more than 15,000 agencies. The primary sampling strata of agencies were defined by metropolitan statistical area and agency type. Within these strata, agencies were sorted by several characteristics, including census region, state, county, ZIP code, size (number of employees), ownership type, and certification status.

Interviewers completed the second stage of sample selection during the agency interviews. Up to 10 current home health patients and/or hospice discharges were randomly selected from each agency by a computer algorithm based on a census list provided by each agency. Interviewers guided agency representatives through data collection interviews for each of the 10 randomly selected patients or discharges. Data were collected by the National Center for Health Statistics between August 2007 and February 2008 through in-person interviews with agency directors and their designated staffs who used agency records to answer survey questions. Agency records include information obtained through nurse evaluations and interviews at the time of intake assessment, as well as some information from referral sources, medical records, and subsequent evaluations by nurses and other clinicians. For the NHHCS survey, no interviews were conducted directly with patients or their families. Interviews of agency personnel were facilitated by NCHS surveyors with the aid of a computer-assisted personal interviewing instrument available on each interviewer’s laptop.

For the 2007 wave of NHHCS, a total of 1,461 agencies were systematically and randomly sampled with probability proportional to size and considered in the scope of the study. A total of 1,036 home health and hospice care agencies chose to participate in the survey (a weighted response rate of 59%), and data are available on 9,416 current home health patients and hospice discharges from these agencies (a weighted response rate of 96%). This study examines a smaller subsample consisting of 3,309 home health care patients nested within 595 agencies. Inclusion criteria for this study include: 1) patients received home health care services, not hospice; 2) patients received at least one service visit; and 3) data on patient cognitive functioning assessment were available.


Cognitive impairment status is the primary patient characteristic being evaluated to determine if the sampled patients differ significantly in service-related needs. The National Home and Hospice Care Survey uses case records as documented sources of information for describing patients’ current health status, including levels of cognitive functioning. Agency administrators reported information from these case records to categorize patient cognitive impairment status as either: 0) No cognitive impairment; 1) Requires only occasional reminders (in new situations); 2) Requires some assistance/direction in certain situations (is easily distracted); 3) Requires a great deal of assistance/ direction in routine situations; and 4) Severe cognitive impairment (constantly disoriented, comatose, delirium). This 5-point scale is identical to the cognitive functioning measure (item M0560) used in the Outcome and Assessment Information Set (OASIS), which is the uniform data collection instrument use by certified home care providers at the time of service initiation, change, and discharge for all benefits-funded skilled-care patients. Agency administrators completing NHHCS questionnaires used these readily-available OASIS data to inform their answers regarding patient cognitive impairment status. OASIS reporting is based on clinical assessments conducted by trained home health nurses. A recent study of the validity of OASIS measures found the OASIS item for cognitive function to significantly correlate with a valid and reliable measure of cognitive impairment, the Short Portable Mental Status Questionnaire (r=.62, significant at p=.01) [21]. For this study, patients are considered to have moderate-to-severe cognitive impairment if they were scored as 2, 3, or 4 on the scale and little-to-no cognitive impairment if scored 0 or 1. This approach fits with most conceptualizations for the degree and type of cognitive impairment associated with neurocognitive disorder [4,21,22]. When operationally defining the construct in this way, 32% of the home health care sample in the 2007 NHHCS dataset is found to have moderate-to-severe cognitive impairment. This rate of impairment is consistent with the expected range for this type of sample.

The selection of service-related variables for this analysis is built upon a conceptual framework modeled by the behavioral model of health services utilization created by Andersen and Newman in 1973. The original behavioral model of health services utilization details the interrelation of societal factors, health service system factors, and individual attributes in determining utilization of health services [23]. This conceptual model has been used widely in its original and modified forms in recent decades to structure studies demonstrating the association of such factors with the utilization of many types of health services [24-26]. In the Andersen-Newman conceptual framework, individual determinants include predisposing factors (e.g., demographics and beliefs about health care), enabling factors, (e.g., family and community resources), and levels of illness (e.g., perceived and evaluated levels of illness and need for care).

Predisposing components of the service utilization framework are individual characteristics which exist before the onset of illness but contribute to a person’s propensity to use services [23]. Demographic factors such as gender, age, and marital status have been critical to health service utilization in prior studies [23,27]. Race and ethnicity have also demonstrated strong associations with variation in supportive services and health outcomes at the time of discharge from home care and differences in overall costs of care among people with Alzheimer’s disease who have Medicaid insurance [15,28].

Demographic and social-structural characteristics may predispose individuals to use health services, but there must also be some means available for them to do so. Enabling factors include the purchasing power of health insurance and availability and relationships of informal supports [27,29]. These factors are suggested in the studies cited above to play a role in identifying the need for service and in facilitating access to service. However, health insurance programs also structure the services provided by dictating reimbursement approval for only select types of care. Medicare, Medicaid, and private insurance programs each have unique target populations and eligibility requirements. As such, the profiles of service use among health care consumers vary significantly based on the insurance program being billed, and even more so when compared to people who self-pay for home care services and are therefore free to choose the packages of care that best meet their needs and budgets.

In more recent iterations of the health service utilization framework, illness level has been described more accurately as need for service [24]. This may be the most important level of influence on utilization as health services are typically designed to respond to illness-based needs. Several illness level factors have previously been shown to predict health service use for older adults, including physical frailty, ADL limitations and functional disabilities, incontinence, cooccurring chronic illnesses, and severity of cognitive impairment and/ or dementia [10,13,30,31]. Patient characteristics relevant for this study include age, gender, marital status, and race/ethnicity, caregiver status (Does the patient have an informal caregiver?), the relation of informal caregivers to patients, co-habitation status (With whom does the patient live?), and both primary and secondary sources of payment for services. The options for primary and secondary source of payment for services include Medicare, Medicaid, private insurance, and self-pay by the patient or family. Indicators of illness level were also evaluated in this study, including incontinence status for both bladder and bowels, need for assistance with activities of daily living and with taking medications, any episodes of emergency medical care during the current service period, the presence of difficult behaviors, number of medical diagnoses and categories of diagnoses, use of assistive devices and medical devices, and where patients received in-patient care prior to admission into the home health care service. Primary diagnosis is classified using the International Statistical Classification of Diseases and Related Health Problems (ICD-9) and grouped by the 19 ICD-9 diagnostic groups. All of these data were derived from agency health records and therefore rely upon nurse or clinician assessments and validation of information from electronic or printed medical records, and referral sources.


Bivariate analyses of cognitive impairment status and multiple psychosocial and clinical characteristics were used in this study to answer the following research question: Is there a significant difference between moderately-to-severely cognitively impaired patients and patients with mild or no cognitive impairment in terms of service-related patient characteristics (listed above). NHHCS is a stratified two-stage probability sample survey designed to produce national estimates for agencies and current home health care patients. Data analyses must therefore include survey weights to inflate the sample numbers to represent accurate national estimates. This study used Stata 12 software, which allows the user to designate variables that contain information about the survey design and specify the default method for variance estimation, in this case using Taylor linearization and a finite population correction, and then apply that weighting structure to any analysis.

Analysis of the variables used in this study revealed that data were missing on one or more variables for nearly half of all home care patients, but no variables were missing data in more than 10% of cases. Additionally, 29% of home care cases were missing data for just one study variable, 13% were missing data for two study variables, and only 7% were missing data for three or more of these variables. Multiple model-based imputation procedures were used in this study as they offer a satisfactory solution to this problem [32,33]. The data used in this study were determined to be “Missing at Random” and the patterns of “missingness” were generally ignorable. Therefore, conducting multiple imputation procedures to address the missing data in this dataset was fully appropriate [32]. Missing data were addressed through the use of Multiple Imputation by Chained Equations (MICE). Ten complete imputed datasets were generated using the MICE approach, and pooled analyses of these imputed datasets were used in this study. Since multiple imputation procedures are designed to give point estimates only, certain statistics that require nonlinear operations, such as calculating standard deviations from the mean and precise frequencies that are represented by sample proportions, are not available in this report.

Results and Discussion

Cognitive impairment findings

The cognitive impairment status of patients in the NHHCS sample is summarized in Table 1. Those patients with scores ranging from 2 to 4 on this scale, considered to have moderate-to-severe cognitive impairment, represent 32% of the sample. The other 68% of patients have mild-to-no cognitive impairment. These two groups are compared in this study with regard to predisposing, enabling, and illness-level factors.