Journal of Gerontological Nursing

ADULT DAY CARE PROGRAMS A SOURCE FOR RESPITE

Vicki Strang, RN, MN; Anne Neufeld, RN, PhD

Abstract

The prevalence of adult day care programs in a variety of settings is increasing. They are being seen by some as a means of providing respite to caregivers and as a "system buffer" to reduce the demand on long-term care institutions.1 An important additional goal of day care programs is to improve the health and quality of life for their older adult clients.

In this article, respite care is defined as planned, intermittent, short-term care that is designed to provide periodic relief to the family and the caregiver.2 Relief from the 24-hour continuous care of a frail family member has been found to be a priority need of caregivers.3

Respite care can be considered an illness prevention and health promotion intervention for both caregivers and the older persons dependent on them. The purpose of respite care is to prevent caregivers' breakdown and promote their quality of life. Caregivers themselves are often older and coping with multiple chronic diseases. Health promotion efforts that relieve the environmental demands on them may achieve prevention of breakdown, maintenance of their personal health, and continuation of their ability to care for the dependent elder. This is consistent with Minkler's view of health promotion, which emphasizes the need to direct health promotion activities to both the individual and the broader social and environmental context.4 The consequence of such intervention is the potential for improved quality of life for both the caregiver and the dependent elder. At the same time, demands on the health-care system are reduced.

The services of adult day care programs also provide illness prevention and health promotion interventions for frail older adults. In the frail elderly population, deterioration in health and functional status over time is anticipated. As a result, interventions (eg, foot care, exercise, physiotherapy, social stimulation, blood pressure monitoring) that prevent or delay this expected deterioration may be an effective contribution to illness prevention and health promotion for these clients. When deterioration in health status is expected, maintenance of the status quo may demonstrate prevention.

Adult day care programs vary in their goals and services. They are usually described in one of three ways.5 Restorative programs offer a relatively high intensity of health services, therapeutic health restorative services, constant health monitoring, and psychosocial services. Maintenance programs provide health maintenance, monitoring, and supervised therapeutic services as well as psychosocial services for a high-risk population of elderly who may expect to be eligible for institutional care in the near future if no services are provided. Social programs focus primarily on socialization activities and maintenance of proper nutrition to prevent or decelerate mental and physical deterioration. These programs for frail elderly are conducted in a protective environment to maintain or enhance social and emotional wellbeing.

The findings of evaluations of adult day care programs suggest that clients' well-being is often improved while they are involved in adult day care.3,611 It is difficult to assess the effects that these programs have on delaying or avoiding institutionalization of the client. It is also difficult to assess the comparative cost of adult day care and institutional care because of the difference in the characteristics of the populations that use each service. There is some evidence that caregivers benefit from the relief of having their elder family member attend adult daycare.12,;13

A study using a randomized control group experimental design found that a 1-year program of respite services resulted in families maintaining their dependent relative significantly longer (22 days) in the community.13 Caregivers' satisfaction with respite and perception of "improved quality of life" were high, although no statistically significant effects were found for caregiver burden and mental health.…

The prevalence of adult day care programs in a variety of settings is increasing. They are being seen by some as a means of providing respite to caregivers and as a "system buffer" to reduce the demand on long-term care institutions.1 An important additional goal of day care programs is to improve the health and quality of life for their older adult clients.

In this article, respite care is defined as planned, intermittent, short-term care that is designed to provide periodic relief to the family and the caregiver.2 Relief from the 24-hour continuous care of a frail family member has been found to be a priority need of caregivers.3

Respite care can be considered an illness prevention and health promotion intervention for both caregivers and the older persons dependent on them. The purpose of respite care is to prevent caregivers' breakdown and promote their quality of life. Caregivers themselves are often older and coping with multiple chronic diseases. Health promotion efforts that relieve the environmental demands on them may achieve prevention of breakdown, maintenance of their personal health, and continuation of their ability to care for the dependent elder. This is consistent with Minkler's view of health promotion, which emphasizes the need to direct health promotion activities to both the individual and the broader social and environmental context.4 The consequence of such intervention is the potential for improved quality of life for both the caregiver and the dependent elder. At the same time, demands on the health-care system are reduced.

The services of adult day care programs also provide illness prevention and health promotion interventions for frail older adults. In the frail elderly population, deterioration in health and functional status over time is anticipated. As a result, interventions (eg, foot care, exercise, physiotherapy, social stimulation, blood pressure monitoring) that prevent or delay this expected deterioration may be an effective contribution to illness prevention and health promotion for these clients. When deterioration in health status is expected, maintenance of the status quo may demonstrate prevention.

Adult day care programs vary in their goals and services. They are usually described in one of three ways.5 Restorative programs offer a relatively high intensity of health services, therapeutic health restorative services, constant health monitoring, and psychosocial services. Maintenance programs provide health maintenance, monitoring, and supervised therapeutic services as well as psychosocial services for a high-risk population of elderly who may expect to be eligible for institutional care in the near future if no services are provided. Social programs focus primarily on socialization activities and maintenance of proper nutrition to prevent or decelerate mental and physical deterioration. These programs for frail elderly are conducted in a protective environment to maintain or enhance social and emotional wellbeing.

The findings of evaluations of adult day care programs suggest that clients' well-being is often improved while they are involved in adult day care.3,611 It is difficult to assess the effects that these programs have on delaying or avoiding institutionalization of the client. It is also difficult to assess the comparative cost of adult day care and institutional care because of the difference in the characteristics of the populations that use each service. There is some evidence that caregivers benefit from the relief of having their elder family member attend adult daycare.12,;13

A study using a randomized control group experimental design found that a 1-year program of respite services resulted in families maintaining their dependent relative significantly longer (22 days) in the community.13 Caregivers' satisfaction with respite and perception of "improved quality of life" were high, although no statistically significant effects were found for caregiver burden and mental health. This evaluation study was done to assess the effectiveness of the program for other caregivers and older adult clients. The strengths and limitations of delivering the program in long-term care institutional settings were also explored.

PROGRAM DESCRIPTION

The Adult Day Health Care (ADHC) program was initiated by the Victorian Order of Nurses (VON) in 1987. Its goals are to assist frail or disabled elderly adults to maintain an optimum level of independent functioning in their home setting in the community, and to provide relief to their caregivers. The clients usually attend the ADHC program 2 days a week. The program is offered 2 days each at two different long-term care facilities. This arrangement of a community-based organization (the VON) offering a day care program within an institutional setting is referred to here as the collaborative model.

The program at both locations begins at 9 AM with informal coffee and socializing as the clients arrive. Most clients use the public disabled adults bus system to come to the program. The morning activities include a current events discussion, group exercises, and various recreational activities. After a hot lunch, the clients participate in individual pursuits, such as crafts or games. Nursing care is carried out throughout the day as needed, and includes such activities as taking blood pressure, blood glucose and medication monitoring, toileting, foot care, individualized therapeutic exercises, client and family health teaching, and some personal care. The program ends at 2:30 PM. It is staffed by a registered nurse, recreational therapist, recreational aide, and program aide.

STUDY METHODOLOGY

A descriptive design was employed for the evaluation. Two purposes of the study will be addressed in this article: to evaluate the achievement of the objectives of the program, and to evaluate the use of the collaborative model. A semi-structured interview survey was used to collect information from the program stakeholders: clients, caregivers, VON staff, staff in the long-term care agency, volunteers, and members of the VON Board were interviewed. Eleven clients (of a possible 16) and 14 caregivers were interviewed. Caregivers were interviewed by telephone; all other interviews were in person. The sample selected provided for inclusion of all relevant groups and presentation of their different viewpoints.

Information about the clients' mental status, life satisfaction, and activities of daily living was obtained from the client records on admission and at 3 months. The record review was also done to obtain information about the demographic characteristics of all clients in the program, such as age and gender, the sources of referral, and types of medical conditions. Mental status was assessed using the Mini Mental Status Exam developed by FoIstein, Holstein, and McHugh,14 which is widely used in clinical settings. Life satisfaction was assessed by using the Cantril ladder.15 The Cantril ladder involves presenting a picture of a ladder and asking, "If the top rung is the best end the bottom rung is the worst, where would you place yourself right now?" Ability to perform activities of daily living was determined by using the Katz Index. 16 This tool provides an assessment of functional status, such as bathing, feeding, or communication, with descriptors in each category that the nurse uses to rate the client.

Content analysis was conducted on all interview data. Data segments containing similar ideas were grouped together and coded to yield recurring themes and issues. The paired /-test was used to establish the mean difference between Time 1 (admission) and Time 2 (3 months later) for the clients' mental status, life satisfaction, and activities of daily living. A two-tailed evaluation at the P = .05 level of significance was used.

STUDY FINDINGS

Client Profile

The majority of the clients were men, ranging in age from 75 to 84 years. The clients were quite frail and required a significant amount of assistance in their activities of daily living. Most caregivers were women and were the spouses of the clients.

Client Maintenance and Satisfaction

No significant difference between Time 1 and Time 2 was identified in the paired r-test analysis of client functioning. This result is congruent with the program objectives of maintaining the clients' level of functioning.

Clients reported that they attended the program because it provided them with an opportunity to get out of their homes and socialize with others. Many clients mentioned the benefits of receiving blood pressure monitoring and other nursing assessments, foot care, and group exercises. Overall, they found the program enjoyable. They appreciated the time that the staff spent talking with and caring for them. One woman said, "I get respect. The nurses talk to me and it makes me feel happy." Many of the caregivers felt that their relative had improved and was easier to care for since they began attending the program.

Relief to Caregivers

The relief provided to caregivers supported them in remaining in the caregiving role. One woman said that without the relief she got from the program, she did not think that she could keep her mother at home. The program provided the caregivers with time to accomplish tasks that were difficult to do when the dependent elder was at home; for example, some caregivers used their free time to rest. Sleep disturbances are a problem with many caregivers because they are up a number of times a night to assist the family member in some way. Other caregivers reported feeling exhausted because of the constant demands on them to do both their work in addition to that previously done by their disabled spouse. Caregivers who reported feeling isolated at home with a spouse suffering from aphasia sometimes used the relief time to talk to neighbors. The literature on the stresses of caregiving echo the comments made by these caregivers.3'6,17"20

For the caregivers who worked, there were different types of benefits from having the dependent elder attend day care: they found peace of mind on the days that their family member attended the program. As one daughter said, "I knew that she was enjoying herself and I felt less guilty about leaving her at home alone. I had a break from worrying about her." The wife of another client said that when he was at the program she knew he was being well cared for. ror that time, he was someone else's responsibility. Many caregivers reported feeling relieved that there were professionals caring for their family members at the program. Some caregivers felt a peace of mind knowing that if anything was medically wrong with their family member, the ADHC staff would look after it. The guilt associated with having to leave the dependent elders alone at home is supported by other researchers. 17

Some caregivers found the daily custodial care stressful: incontinence, feeding, dressing, and bathing. Although many of the stresses of caregiving that were described by the caregivers were not resolved by having the dependent relative attend the program, the caregivers were able to find temporary relief from these stresses and an opportunity to "recharge the batteries" during the time the clients were at the program.

There is some evidence that the older adults' attendance at the ADHC program improved some of their relationships with their caregivers. As one caregiver stated, "When she attends the program, I have something to ask her about." This opportunity to add to a relationship, even if only in conversation, helps to normalize the life of the dependent person.

Delaying Institutionalization

The families interviewed indicated that they wanted to be able to care for the clients at home for as long as possible. Many felt that as the dependent elder's condition failed, they would have to consider placement in a longterm care setting. This desire to care for a family member for as long as possible is supported in the literature 10,11,17,18,21

Some families had let their longterm care applications expire because they felt that the help they were getting from the ADHC program altered their present need for this form of contingency planning. Still others reported that the deteriorating condition of the client was the most important factor influencing institutionalization. These families did not see the ADHC program as affecting such a move.

Collaborative Model

The data provided overall evidence that delivering the ADHC service in an institutional setting was not detrimental to the program. The clients and their family members generally responded that they saw no problem with the program being held in a long-term care institution. One caregiver was concerned that her mother might become depressed by seeing the very disabled residents, but indicated that, to date, this had not been a problem for her mother. One family member indicated that it was good for her husband to see people who were worse off than he was. Two program participants mentioned that they would prefer not to have the program run in a long-term care institution, but felt that this situation was tolerable.

The long-term care agency staff found that the increased stimulation of noise and motion was beneficial for the residents and they appreciated the opportunity to share ideas with the ADHC staff. The ADHC staff identified that the institutional facility was able to provide equipment and services, such as the century tub and dietary and laundry services, that would not be available in other settings. They also identified the back-up support that would be available in a medical emergency as a benefit of this collaborative model.

The biggest disadvantage that was identified by all staff of both organizations was the limited space available. The ADHC staff felt that a private location was needed for them to make phone calls to family members, to perform nursing care (such as foot care), and to hold meetings with the program staff. The long-term care agency staff also mentioned the difficulties of sharing the space in the institution.

DISCUSSION

The focus of the VON ADHC program is maintenance of health status. The finding of no significant difference in level of client functioning between Time 1 and Time 2 provides some evidence that the maintenance objective of the program was achieved. By maintaining clients' level of functioning, the process of deterioration is delayed and a degree of health promotion is achieved.

Similarly, it could be argued that the relief of caregivers' burden reported in this study, although minimal, sustains them in their role. The program may thus contribute to preventing or delaying deterioration in the caregivers' situation. There is evidence in the literature that support to caregivers from other family members diminishes over time. At the same time, support services from the health-care system also diminish because of the assumption that the family is coping and that caregivers have acquired the essential skills.22 A service such as the VON ADHC program provides minimal respite care. If such a service contributes to a delay in deterioration in the caregiver's situation and helps to maintain them in their caregiving role, then their health is promoted through the day care program.

To evaluate whether the ADHC program delayed institutionalization is difficult because moves to long-term care facilities occur for many reasons, only one of which is the caregivers' inability to cope any longer. Dependent older adults tend to suffer from progressively deteriorating conditions that may mean that, for some, institutionalized care is inevitable. By completing an application form for a long-term care facility, caregivers do not necessarily indicate that they are ready to institutionalize the client at that time, in this study, there is some evidence that the ADHC program delayed institutionalization. This is congruent with the study by Lawton, Brody, and Saperstein,13 which found that families using a program of respite services for more than 1 year maintained their relative significantly longer (22 days) in the community than those who received no respite services.

Finally, a number of authors3,11 have supported a community-based mode of providing adult day care, particularly because community nurses are wellsuited to supporting family care-givers. The data from this study outline a number of advantages of a community-based organization delivering the program in a long-term care institutional setting. Therefore, it seems logical to take advantage of both of these concepts to implement the use of the collaborative model wherever possible.

FUTURE IMPLICATIONS

This study suggests that the VON Adult Day Health Care program provided some relief for caregivers and contributed to health maintenance of dependent older adults. In view of the expected increasing dependency of the frail elderly, these outcomes may constitute a form of illness prevention and health promotion for both caregivers and the dependent older adults.

Further research is needed, however, to assess the specific effectiveness of day care programs for both caregivers and frail older persons. The adequacy of the respite provided to caregivers and of the benefits received by the older adults needs to be more clearly identified. The effectiveness, economy, and efficiency of using the collaborative model to deliver adult day care programming also requires further investigation. To establish the effectiveness of adult day care programs in delaying institutionalization for the frail elderly, more rigorous studies (such as the one conducted by Lawton, Brody, and Saperstein13) are necessary.

An implication of the findings of this study is recognition of the benefit of ongoing evaluation. Results of this evaluation study made an important contribution to the improvement of the VON ADHC program.

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10.3928/0098-9134-19901101-06

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