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Adult Day Services

HOLLY DABELKO-SCHOENY

KEITH A. ANDERSON

JEE HOON PARK

INTRODUCTION

Adult day services (ADS), also referred to as adult day care, support the health, nutritional, social, and daily living needs of adults with functional limitations in a group setting during daytime hours. ADS also support family caregivers by enabling them to remain in the workforce and receive respite, a break from providing support for individuals with cognitive and physical limitations. Efforts have been made by groups, such as the National Adult Day Services Association, to encourage providers, consumers, and policy makers to use the term ADS instead of adult day care to distinguish the adult programs from child day-care programs. ADS are not babysitting programs for adults, but instead are important providers of long-term care services in the United States. ADS centers do not operate under a federal definition of care as nursing homes do. Licensure and certification requirements vary from state to state, resulting in considerable differences in programs, participants, and funding sources among centers.

Historically, ADS have been characterized in three ways, as medical models, social models, or combined models of care (Weissert, 1976, 1977). Centers operating medical programs emphasized skilled assessment, treatment, and rehabilitation. Social models focused on socialization and preventive services, and combined models had elements of both social and medical models, depending on individual participant needs. This typology was expanded in 1989 to include special purpose centers that served a single type of participant, such as an individual with dementia, developmental disability, or mental illness (Weissert et al., 1989). Increasing evidence suggests that these distinct models of care no longer exist and that ADS centers are increasingly becoming more medically focused, providing comprehensive care by professionals to individuals with more complex health care needs (Anderson, Dabelko-Schoeny, & Johnson, 2013). These medically focused centers are sometimes referred to as adult day health care centers and are staffed by nurses, social workers, and activity professionals.

The purpose of ADS is to provide individuals with cognitive and physical limitations community-based long-term care services where they can get their health and social needs met in the least restrictive environment possible. The ADS care model is dependent on strong family caregiving support. Participants return to their homes to receive care from family caregivers at night and on weekends, depending on the hours of operation of their particular center. ADS centers support independence and choice for participants.

The intent of ADS largely follows the concept of “aging in place.” Aging in place refers to older adults’ ability to remain in their homes and communities as they face the challenges often associated with growing older. Researchers have found that there is typically a strong attachment to the physical, social, and emotional notions of “home,” and the vast majority of middle-age and older adults would prefer to grow old in their communities and, if possible, their own homes. There is also evidence that aging in place is associated with aspects of successful aging, such as increased socialization and community engagement (Keenan, 2010). A sense of home can also provide meaning and security for older adults, further contributing to their well-being (Rowles & Bernard, 2013). Aging in place also means that older adults and their families can avoid the stress and expense associated with placement into long-term care. The cost of long-term care is also a significant issue for payer sources, such as Medicaid.

BACKGROUND

The ADS sector is in its infancy compared with other long-term care service providers in the United States, such as nursing homes and home health care, which began providing services as far back as the mid-1850s. Originally based on Britain’s model of geriatric day hospitals, ADS did not emerge as a provider of long-term care in the United States until the 1972 amendments to the Social Security Act, which funded about a dozen ADS demonstration programs (Dabelko, Koenig, & Danso, 2008).

As the concern for the high cost of nursing home care grew in the mid-1980s, funding for ADS increased as new sources of government dollars for home- and community-based services (HCBS) were established. Title XX of the Social Security Act and Title III of the Older Americans Act (OAA) provided block grant funding to states for supportive and nutritional services, including ADS. Section 2176 of the Medicaid Home and Community-Based Services waiver program allowed states to receive matching federal funds for poor, nursing home–eligible individuals to receive HCBS at lower costs than institutional care (Dabelko et al., 2008).

The 1980s and 1990s also marked the beginning of growth in the number of providers and of a shift in ADS from “mom and pop shops” delivering socialization services in the basement of churches to medical service providers relying on public funding for services (Dabelko et al., 2008). Also during this time, the Programs of All-Inclusive Care for the Elderly (PACE) became more popular. PACE programs integrate acute (short-term) and long-term care services for persons 55 years and older who meet eligibility criteria for both Medicare and Medicaid. In an effort to control costs, a menu of services is provided at a set rate per person within an adult day setting. In 2010, there were 75 PACE sites in the United States. Not only have PACE sites been successful in managing costs, but programs have also demonstrated a reduction in nursing home and hospital utilization; support for family caregivers; and are associated with improved health, quality of live, and overall life satisfaction for consumers (Chatterji, Burstein, Kidder, & White, 1998; Wieland et al., 2000).

Increases in public funding for HCBS led to growth in the number of ADS programs from 15 in 1972 to approximately 1,200 by the mid-1990s (Dabelko et al., 2008). Public funding for ADS continued to grow in the 1990s and 2000s as public awareness was raised about the devastating effects of Alzheimer’s disease and related dementias and the financial, physical, and emotional burden of family caregiving. As the number of baby boomers reaching older age increased, consumers began to want more choice in long-term care services and to receive care in the least restrictive environment possible. The Alzheimer’s Disease Demonstration Grants Program and the National Family Caregiver Support Program funneled additional dollars into adult day programs to support respite services, relief for family caregivers from providing support for individuals with functional limitations (see Case Study 7.1). A census conducted in 2002 identified 3,400 centers in the United States (Partners in Caregiving [PIC]; 2001–2002). In a 2010, large-scale national survey, the number of ADS centers was estimated at over 4,600. Serving over a quarter of a million individuals, ADS are a growing source of long-term care for individuals with functional limitations (Anderson et al., 2013). (Note: In the following discussion of the characteristics of ADS participants, centers, and services, 2002 statistics were drawn from the Partners in Caregiving Study, and 2010 statistics were drawn from the MetLife National Study of ADS (MetLife Mature Market Institute, 2010b)

PARTICIPANT PROFILE

ADS typically provide programs and services to individuals with physical and/or cognitive limitations. Although most participants have such limitations, diversity exists in terms of age, gender, race/ethnicity, health status, ability and disability, care needs, and home life. As a result, presenting an aggregate picture of the “average ADS participant” can be rather misleading. It is critical to note that this is not a homogeneous group. More differences than similarities exist among individuals participating in ADS.

ADS participants have traditionally been divided into two groups: younger adults with intellectual and developmental disabilities (IDD) and older adults with care needs primarily related to physical and/or cognitive limitations. In the 2010 MetLife study, 69% of ADS participants were aged 65 and older, 21% were age 41 to 64, and 9% were age 40 and younger. These statistics indicate that ADS continue to serve a distinct group of older adults. Statistics also suggest that the younger adult profile may be becoming more diverse in terms of age, reflective of the increased life expectancy for younger adults with IDD (Long & Kavarian, 2008). It may be the case that younger adults with disability are aging in place in ADS.

Reflective of the general population, particularly the older adult population, women constitute a majority of ADS participants (58%). The race/ethnicity of ADS participants, however, does not directly reflect that of the general population. In 2010, 61% of participants were White, 16% were Black, 9% were Asian, 9% were Hispanic, and 4% were either a combination of races or listed as “other race.” On the other hand, a 5-year estimate of race/ethnicity in the United States lists the general population as approximately 75% White, 12% Black, 4% Asian, and 15% Hispanic (U.S. Census Bureau, 2009). Several reasons help to explain these disparities. First, ADS traditionally have served individuals and families with fewer resources, and Blacks and non-Hispanics are over-represented in this group. Second, there is greater availability of ADS in urban areas where minority populations tend to have the highest concentrations. In addition, ADS have grown from models of care in the Asian community and are a widely accepted care option for this group. Finally, nursing homes, a care alternative, have historically served a greater proportion of White individuals as compared to Black. ADS participants may have grown more diverse since the 2002 PIC study, when 76% of participants were White and non-Hispanic.

FIGURE 7.1 Health status of participants.

Source: MetLife Mature Market Institute (2010a).

As indicated in Figure 7.1, physical and cognitive disability levels remain high among the ADS population. In 2010, approximately half of ADS participants had some form of dementia, and 42% had some form of physical disability. Chronic disease was also prevalent, largely reflective of the growing problem of chronic illness in the general population. Approximately 46% of participants had hypertension, 34% had cardiovascular disease, and 31% had diabetes. Certain conditions have become more prevalent since the 2002 PIC study, including a near doubling of the rate of physical disability and a 70% increase in chronic mental illness. Overall, it appears that the acuity level of ADS participants is increasing. As expected, high levels of acuity are closely correlated with high levels of assistance needed. Just under half of ADS participants required assistance with toileting (45%) and medications (44%). Assistance with other activities of daily living (ADLs) and instrumental ADLs (IADLs) also remained relatively high (bathing, 30%; transferring, 25%; walking or using wheelchairs, 18%; eating, 16%).

Living arrangements and individuals who provide care in the home setting are also important to consider, as both factors influence service usage by ADS participants. In 2010, 27% of ADS participants lived with an adult child, 21% lived with a spouse, 20% lived alone, 18% lived in a communal setting (e.g., group housing, assisted living), and 11% lived with another relative, such as a parent (Anderson et al., 2013). Living arrangements appear to have changed somewhat, with fewer ADS participants living with adult children (35% in 2002) and more ADS participants living alone (11% in 2002). These changes suggest that the improved quality and availability of HCBS may support independent living for ADS participants—an important determinant of quality of life for both the care recipient and the caregiver. In terms of caregiving, over one third of ADS participants listed an adult child as their primary caregiver, 23% listed their spouse, and 13% listed another relative (e.g., parent, sibling, grandchild). Interestingly, 19% of ADS participants listed their primary caregiver as a paid professional, such as a home health aide, and 9% reported that they did not have a primary caregiver. Again, these percentages point to the growing importance and use of HCBS in maintaining the independence of ADS participants. ADS appear to be an important resource within the spectrum of HCBS.

Understanding the precise reasons of how and why participants enroll and eventually leave ADS are also important considerations, particularly from the standpoint of measuring the effectiveness of ADS. Participants and family members take a variety of routes in finding their way to ADS. In the 2010 MetLife study, ADS centers ranked Area Agencies on Aging (AAA) as their primary referral source. AAAs provide information and referral services as established through the OAA to link older adults and families with services. Family and friends, self-referral, and physicians were also listed as important sources of referral. Although it is promising that physicians would understand the benefits of ADS, it is surprising that hospital discharge planners were not mentioned as important referral sources. It may be that ADS have yet to establish or market themselves as a platform for medical care and that the medical community continues to view ADS solely as providers of social services. Alternatively, ADS providers may not be able to enroll individuals as quickly as nursing homes or other alternative care providers, as required by discharge planners.

ENROLLMENT IN ADS

Primary reasons for enrollment in ADS included increased functional needs and increased behavioral problems. Both factors are closely related to caregiver burden and institutional placement (Gaugler, Duval, Anderson, & Kane, 2007). ADS centers also listed caregiver respite and declines in caregiver abilities as primary reasons for enrollment. These reasons may represent the downward cascade that aging, physical decline, and increased care needs can have on the home care situation for both care recipient and caregiver. On average, ADS participants remain enrolled for approximately 2 years. This figure has remained relatively constant since 2002 (Anderson et al., 2013).

Primary reasons for disenrollment from ADS identified in the MetLife study included: (a) placement into a nursing home; (b) death of the participant; and (c) mismatches between the services offered in ADS and the needs of participants (i.e., health declines in participants), an indication that there are limitations to the services that can be effectively provided in the community. Nursing home placement may be necessary and, in some cases, is in the best interest of both care recipient and caregiver. The death of participants could be viewed as a success in allowing a participant to both live and die in a community setting.

ADS CENTER PROFILE

The number of ADS centers has increased dramatically—a 35% growth rate since 2002. Within this growth, there have been significant changes in characteristics of ADS centers. There appears to be diversity in the location, administrative structure, and operating characteristics of ADS centers. Much of the change that has occurred is related to changes in demographics of the United States and policies that determine funding for ADS.

In the past, ADS centers have been characterized as conforming to a medical model, social model, or a combination of both. In 2002, approximately 37% of ADS centers were based on the medical model, 21% on the social model, and 42% on a combination of the medical and social models (PIC, 2001–2002). Though it may be convenient to classify ADS centers in this way, the large majority of centers offer a combination of social and health-related services. For example, in 2010, over 95% of ADS centers offered assistance with toileting, and 89% offered blood pressure monitoring—certainly health-related services (Anderson et al., 2013). Rather than continuing this classification system, it is best to consider ADS centers as facilities that offer a wide range and combination of services contributing to the health and well-being of participants.

ADS centers are often affiliated or located within parent organizations although an increasing number of centers are stand-alone entities. For instance, in 2010, approximately 10% of centers were affiliated with nursing homes, 9% with senior service organizations, 7% with IDD organizations, and 4% with hospitals. At the same time, a considerable percentage of ADS centers (39%) reported that they were not affiliated with a parent organization. Almost one third of ADS centers were a part of multiple-center organizations, a decrease of 9% since 2002. In terms of profit status, the majority of centers were private, nonprofit operations; over one quarter were private, for profit; and the remainder were either public or government operated. Most centers (86%) were state certified; it should be noted that there is variability in the certification standards across the states. This variability results in different centers providing different services, which can make it difficult for consumers to understand what ADS provide. Once again, diversity seems to be the hallmark of ADS centers, which may be indicative of the flexibility and responsiveness of the industry to adapt to the diverse needs of the communities they serve.

PARTICIPANTS AND MEETING THEIR NEEDS

Participation and enrollment rates provide some indication of the size and capacity of ADS centers. ADS centers have grown in capacity, enrollment, and daily participation since 2002 (PIC, 2001–2002). The total capacity (e.g., the maximum number of participants that a center can physically hold) was approximately 51 participants in 2010 (up from 38 in 2002), the total average enrollment was 57 (up from 42 in 2002), and daily participation averaged 34 (up from 25 in 2002). ADS centers are bigger and serve more people than before. In terms of physical space, most centers were between 1,000 and 5,000 square feet of indoor programming space (office spaces not included) plus an average of almost 200 square feet of outdoor space.

Almost all ADS centers operate from Monday through Friday, approximately 15% are open on Saturday, and approximately 4% are open all weekend. Most centers open between 6:30 to 8:30 a.m. and close between 4:00 and 6:00 p.m. These schedules appear to be closely aligned with typical working hours, thus providing family caregivers with the respite they need to remain employed. Interestingly, a small number of centers are open on a 24-hour schedule, which may be aligned with the working hours of certain industries (e.g., factory workers, service industries). Most ADS participants attend full days, and nearly 50% attend 5 days per week. Those attending 5 days per week may have family caregivers who work fulltime, whereas those attending on partial-week schedules likely have family caregivers who either work parttime or need respite for only a few days per week.

The administrative structure and staffing of ADS centers also contributes to the functioning, capabilities, and overall quality of services offered. Almost 60% of ADS directors have backgrounds and education in the helping disciplines (e.g., nursing, social work, and activities/recreation therapy; Anderson et al., 2013). Approximately 30% of ADS directors came from the business and health care management and administration disciplines. Staffing in ADS often consists of a combination of registered nurses, licensed practical nurses, direct care workers (such as nursing assistants and nurse aides), social workers, activity/recreation therapists, and support personnel. In 2010, almost 80% of ADS centers had either an RN or an LPN on staff. Breaking this down further, 65% reported having at least one RN on staff, and 48% had an LPN on staff. In comparing these staffing levels with past data, professional nursing staff has grown substantially in ADS (53% with an RN and 33% with an LPN in 2002). This increase suggests that ADS centers have an increased capacity to deliver health-related services. In terms of DCWs, the ratio of worker to participant improved from one DCW for every eight participants in 2002 to one DCW for every six participants in 2010. Again, this points toward increased capacity to care for the needs of participants. This trend also allows for more personalized care and for the care of participants with multiple or complex care needs. Other disciplines are also well represented in ADS. Over 90% of ADS centers had activity professionals on staff, and almost 50% employ professional social workers (Anderson et al., 2013; PIC, 2001–2002).

SERVICES OFFERED IN ADS

ADS centers offer a variety of services to meet the needs of participants and their family members. Initially, ADS centers focused on social services, such as monitoring frail older adults and providing sheltered work opportunities for younger adults with IDD. As the ADS model of care evolved, centers began to offer expanded services to meet the social, health, nutritional, and emotional needs of a wide array of participants. Today, most ADS centers offer services that address the holistic needs of participants and family caregivers. Programs work to adapt services to the individual needs of participants and their family caregivers.

Adult Day Participants Involved in Activities.

Source: Pictures used with permission from Heritage Day Health Centers, Columbus, Ohio.

Care plans are the blueprints that outline individual care needs and treatment of ADS participants. As expected, almost every center offered care planning in 2010, and these plans are updated on a regular basis, typically every 3 to 6 months. The most basic care generally revolves around ADLs and IADLs, those activities that occur within the fabric of daily life. Over 90% of ADS centers provided assistance with walking, toileting, transferring and sit-to-stand movements, and meals. These types of services were generally included in the daily rate for care and extra fees are not typically charged. Other basic services, such as bathing, were offered at over half of all ADS centers (see Case Study 7.2). As this type of service is more labor intensive, almost half of facilities charged an extra fee. As indicated in Figure 7.2, most ADS centers also provided nursing and health-related services in addition to basic care services. For instance, over 80% of centers offered blood pressure monitoring, weight monitoring, medication management, and diabetes monitoring. Such services are critical for many participants, particularly those with complicated medical conditions that require frequent monitoring. Other commonly offered services included bowel and bladder training for incontinence and oxygen and breathing therapies. Reflective of the growing capacity of ADS centers to address complex care needs, approximately half of centers offered medication injections, wound care, catheter and colostomy care, and tube feeding. The provision of such services almost invariably requires both advanced clinical skills and licensure, such as those held by RNs. The availability of such services speaks to a number of factors, including the increased prevalence of chronic illness in society, the higher levels of trained health care professionals working in ADS, and the growing desire and expectation of individuals and families to “age in place” and avoid institutionalization.

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