Journal of Gerontological Nursing

ADULT DAY CARE: HOW FAMILIES OF THE DEMENTIA PATIENT RESPOND

Roberta Weybright Graham, MSN, RNC

Abstract

Alzheimer's disease, or Senile Dementia of the Alzheimer's type (SDAT), is known as the most prevalent of the irreversible dementias. The disease is estimated to afflict 5% to 10% of the population over age 65.' Impairment of a person with SDAT progresses gradually, from forgetfulness to total intellectual, emotional, and physical disability. The cause of the illness is unknown, and at present there is no cure.

Few disorders place so much stress on families as SDAT.2-4 As the disease progresses, the patient needs increasing amounts of supportive care. A family member, usually a healthy spouse, sibling, or adult child, most often emerges as the primary caregiver.

Though some families do not have trouble coping,5 the majority, if a caregiving network and/or community support are not available, will experience unmanageable levels of stress and ultimately seek nursing home placement for the patient.6-8

Despite the physical, emotional and financial strains caregivers experience as a result of caregiving,2,5,9 the home remains the preferred setting for care. 10 As a result, research is beginning to focus on the range of services needed by these families as they struggle to cope with their responsibilities. There is a lack of research, however, about ways in which a family caregiving network may be supported or even enhanced, by the use of specific community resources.

Adult day care is a community resource that offers not only an opportunity to improve the quality of life for the patient with dementia but also respite care to the caregiver. Two studies have claimed a decrease in caregiver stress as a result of placement of their relative in an adult day care center.10,11 These studies, however, did not quantify the benefit. The purpose of this study was to measure the effect of placement of a patient with SDAT in adult day care on the family caregiver.

The theoretical background of the present study was developed from Neuman's concept of family as a system, influenced by Stressors experienced as a result of chronic illness in an adult family member. According to Neuman, family stability is dependent on the range of functions in which a family is able to successfully cope with the stressors.

The strength of the Stressors as well as the stability level of the family system are variables that determine whether a Stressor will have a positive or negative outcome affecting family functioning.12 If a family has the resources needed to cope with a Stressor, or is given sufficient direction and support to do so, the stress can be managed more effectively. The community resource in this study, adult day care, has been informally reported to help decrease the stress of a caregiver.

The hypothesis tested by this research study was that the level of caregiver strain would decrease following placement of the patient with dementia in adult day care. In order to determine if there was a decrease in caregiver strain following placement, a pretestposttest, quasi-experimental study design was utilized.

Table

The guilt and defeat described by caregivers about placement of their family members in adult day care appeared to prevent some from utilizing that care to its greatest potential. For example, several families in this study started by "trying out" day care 1 to 2 days per week for a limited time period during the day. Moreover, caregivers relied on feedback from their family members to evaluate the program's effectiveness. As a result of this approach, two potential subjects were withdrawn from day care.

Reluctance to admit feelings of guilt, defeat and uncertainty may also have affected caregiver subjects' responses to questions on the Burden Interview. This reluctance may…

Alzheimer's disease, or Senile Dementia of the Alzheimer's type (SDAT), is known as the most prevalent of the irreversible dementias. The disease is estimated to afflict 5% to 10% of the population over age 65.' Impairment of a person with SDAT progresses gradually, from forgetfulness to total intellectual, emotional, and physical disability. The cause of the illness is unknown, and at present there is no cure.

Few disorders place so much stress on families as SDAT.2-4 As the disease progresses, the patient needs increasing amounts of supportive care. A family member, usually a healthy spouse, sibling, or adult child, most often emerges as the primary caregiver.

Though some families do not have trouble coping,5 the majority, if a caregiving network and/or community support are not available, will experience unmanageable levels of stress and ultimately seek nursing home placement for the patient.6-8

Despite the physical, emotional and financial strains caregivers experience as a result of caregiving,2,5,9 the home remains the preferred setting for care. 10 As a result, research is beginning to focus on the range of services needed by these families as they struggle to cope with their responsibilities. There is a lack of research, however, about ways in which a family caregiving network may be supported or even enhanced, by the use of specific community resources.

Adult day care is a community resource that offers not only an opportunity to improve the quality of life for the patient with dementia but also respite care to the caregiver. Two studies have claimed a decrease in caregiver stress as a result of placement of their relative in an adult day care center.10,11 These studies, however, did not quantify the benefit. The purpose of this study was to measure the effect of placement of a patient with SDAT in adult day care on the family caregiver.

The theoretical background of the present study was developed from Neuman's concept of family as a system, influenced by Stressors experienced as a result of chronic illness in an adult family member. According to Neuman, family stability is dependent on the range of functions in which a family is able to successfully cope with the stressors.

The strength of the Stressors as well as the stability level of the family system are variables that determine whether a Stressor will have a positive or negative outcome affecting family functioning.12 If a family has the resources needed to cope with a Stressor, or is given sufficient direction and support to do so, the stress can be managed more effectively. The community resource in this study, adult day care, has been informally reported to help decrease the stress of a caregiver.

The hypothesis tested by this research study was that the level of caregiver strain would decrease following placement of the patient with dementia in adult day care. In order to determine if there was a decrease in caregiver strain following placement, a pretestposttest, quasi-experimental study design was utilized.

Table

TABLE 1DISTRIBUTION OF AGE OF CAREGIVERS AND ADULT DAY CARE CENTERS

TABLE 1

DISTRIBUTION OF AGE OF CAREGIVERS AND ADULT DAY CARE CENTERS

Table

TABLE 2DISTRIBUTION OF SEX OF CAREGIVERS AND PATIENTS

TABLE 2

DISTRIBUTION OF SEX OF CAREGIVERS AND PATIENTS

Methods

Subjects and Setting

Subjects were primary caregivers of patients with SDAT who were to begin adult day care 2 to 5 days per week. Potential subjects were identified by directors of eight adult day care centers in and around a large midwestem city. Of the 22 potential subjects identified, two refused to participate in the study and five did not continue the placement for the full three weeks, which left a sample size of 15.

Table 1 describes the sample of caregivers and patients according to age. It was expected that caregivers would be younger, their mean age was approximately 19 years less than that of their dependent family members. The majority of both caregivers and patients were females, as shown in Table 2. In fact, nearly three-fourths of the caregivers and three-fifths of the patients were female.

The presence and severity of the patient's memory loss, behavior problems and physical impairment were assessed prior to entry into the day care program, from the perspective of the caregiver. The Memory and Behavior Problems Checklist and the Activities of Daily Living Checklist, developed by Zarit and Zarit,13 were utilized. Table 3 describes the results. Higher scores indicate greater degrees of impairment. The mean score of 63.8 for memory and behavior problems indicates that the clients who would begin day care were cognitively impaired, and also experienced behavior problems. The mean score of 12 for physical labor related to activities of daily living was evidence of the degree of the client's physical dependence.

Instrument

The caregiver level of strain was measured by the Burden Interview, developed and found to be valid and reliable by Zarit, Reever, and BacchPeterson5 and Zarit and Zarit13 (see Appendix A). This 22-item questionnaire was specifically designed to measure the extent to which caregivers perceived their emotional or physical health, social life, and financial status as suffering as a result of caring for their relative with SDAT. Scores on the Burden Interview range from 0 to 88. Higher scores in Table 4 indicate greater degrees of burden.

Procedures

After subject consent was obtained, the Burden Interview, the Memory and Behavior Problem and Activities of Daily Living Checklists, and a demographic questionnaire were administered to the caregiver 1 to 7 days prior to use of adult care. Only the Burden Interview was readministered to the caregiver during the fourth week of patient placement in adult day care.

Results

Of the 15 caregivers studied, postplacement burden scores increased for eight, decreased for six, and did not change for one. Table 4, however, does show a mean decrease in burden reported by caregivers. When tested statistically with the paired f-test for dependent samples, this difference was not significant. The study thus fails to confirm the predicted decrease in caregiver strain.

Discussion

Several explanations may be offered for the failure of this sample of caregivers to benefit significantly from the respite offered by adult day care. A number of factors appear to be involved. First, adult day care alone as a support may not have been enough to make an impact on the Stressors affecting a particular caregiver. The stability of the family system may, in fact, have been further upset by the use of the program.

Several subjects in the study acknowledged guilt about placing their family members in day care. They viewed their decision as evidence of failure to manage and successfully care for loved ones. For three or four, this step also brought the stark realization that nursing home placement may be next. Two subjects, it should be noted, were utilizing the adult day care as a temporary respite while waiting for nursing home placement.

Table

TABLE 3UNIVARIATE ANALYSIS OF FREQUENCY OF MEMORY, BEHAVIOR, AND PHYSICAL PROBLEMS OF PATIENTS

TABLE 3

UNIVARIATE ANALYSIS OF FREQUENCY OF MEMORY, BEHAVIOR, AND PHYSICAL PROBLEMS OF PATIENTS

Table

TABLE 4DISTRIBUTION OF CAREGIVER BURDEN SCORES PREPLACEMENT AND POSTPLACEMENT OF FAMILY MEMBER IN ADULT DAY CARE

TABLE 4

DISTRIBUTION OF CAREGIVER BURDEN SCORES PREPLACEMENT AND POSTPLACEMENT OF FAMILY MEMBER IN ADULT DAY CARE

The guilt and defeat described by caregivers about placement of their family members in adult day care appeared to prevent some from utilizing that care to its greatest potential. For example, several families in this study started by "trying out" day care 1 to 2 days per week for a limited time period during the day. Moreover, caregivers relied on feedback from their family members to evaluate the program's effectiveness. As a result of this approach, two potential subjects were withdrawn from day care.

Reluctance to admit feelings of guilt, defeat and uncertainty may also have affected caregiver subjects' responses to questions on the Burden Interview. This reluctance may have been somewhat dissipated, however, following placement, because the caregivers often received considerable support from both the adult day care personnel and the relatives of other dementia patients at the center. Thus, caregivers may have more freely admitted to burden or strain after three weeks of interaction with people who could understand their problems.

Another possibility is that a crisis within the family system precipitated the use of respite care and formal community resources. If so, the time frame of the study may not have been long enough to allow the family to regain stability in the manner described by Neuman.12 Since family caregiver strain with SDAT patients has been shown to decrease over time even without major interventions, that seems likely. In the analysis of their two-year study, Zarit, Todd, and Zarit,14 attributed this decreased strain to a) the caregivers' improved ability to manage patient problems effectively and b) the increased capacity of caregivers to accept the particular problems associated with management of the family members involved.

Also, subjects in this study were initially interviewed prior to adult day care placement, but after the decision to utilize adult day care had been made. Anticipation of respite may have influenced caregivers' preplacement Burden scores. Another factor may be that some patients did not adjust well to day care. Stress caused by a difficult adjustment may have precluded reduction in the caregiver's strain after a three-week period.

Another factor was that adult day care was not available for several subjects on the days and times a caregiver needed. Some centers were open just three days weekly, while others were open daily, but had limited hours of operation not compatible with caregivers' schedules. A few caregivers were unable to use adult day care as frequently as they desired because of financial constraints. In addition, some families had difficulty coordinating transportation to and from the center. Many of these problems have also been reported by other day care centers.11,15

When caregivers were asked how adult day care affected their daily lives, responses were quite varied but suggested most of the possibilities mentioned earlier.

"I was so fearful I would have to place my dad in a nursing home. I'm just not ready for that yet, nor is he. Since Dad started day care, we are both doing much better."

"It [day care] doesn't help as much as you'd think it would. Sometimes, bathing Mom, getting her dressed and to the day care is more work than keeping her home. I'm exhausted."

"Day care definitely made a big difference. When my husband is there Ï can just feel the tension leave my body, and I am better able to cope when I am with him."

"You know, my response [to questions on the Burden Interview] depends on what day you ask them. Yesterday, my wife had a bad day, and I felt nothing would work. Today, her mind is so clear. I am very hopeful the day care will work out well."

"Two days a week of day care is great. If I could afford five days, things would really be looking up."

"Mom doesn't seem to remember anything about being at the day care from day to day. She is always ready to come home when I get there. I wish I knew if she was happy."

Conclusion

Results from this study should be used with caution. They do make it clear, however, that gerontological nurses who counsel family caregivers should help them to be realistic about their expectations of adult day care. Caregivers must also be helped to understand the variability of patient and family reactions to placement. More realistic expectations should lead to a better choice of strategies and more successful coping.

Nurses who are aware of the complex nature of the strain family caregivers may experience can also use this information in deciding whether to recommend adult day care as an option. The importance of a thorough nursing assessment of patient and family is dramatized by the many influences on success suggested by this research.

Finally, further study should be done, particularly a larger, more comprehensive study over a longer time frame. That should help to define key factors more clearly and thus enable identification of those caregivers who would most likely benefit from adult day care for their family members, A control group would guarantee information on the effectiveness of adult day care on caregivers' coping abilities free from changes due solely to the passage of time and the natural acquisition of more skills.

References

  • 1. Mortimer J, Shuman L, & French L: Epidemiology of dementing illness. In Mortimer J & Shuman L (eds): The Epidemiology of Dementia. New York, Oxford University Press, 1981.
  • 2. Ory MG, Williams TF, Emr M, Lebowitz B, et al: Families, informal supports and Alzheimer's disease: Current research and future agendas. Res Aging 1985; 7(4):623-644.
  • 3. Rabins PV. Mace NL, & Lucas M: The impact of dementia on the family. JAMA 1982; 248(3):333-335.
  • 4. Zarit SH & Zarit JM: Families under stress: Interventions for caregivers of senile dementia patients. Psvchotherapy 1982; 19:461-471.
  • 5. Zarit SH, Reever KE. & Bacch-Peterson J: Relatives of the impaired elderly: Correlates of feelings of burden. Gerontologist 1980; 20(6):649-655.
  • 6. Bergmann K, Foster EM, Justice AW, & Mathew V: Management of the demented elderly patient in the community. Br J Psychiatry 1978; 132:441-449.
  • 7. Branch L & JeH A: A prospective study of long-term care institutionalization among the aged. Am J Pub Health 1982; 72(12): 1373-1379.
  • 8. Morycz RK: Caregiver strain and the desire to institutionalize family members with Alzheimer's disease. Res Aging 1985; 7(3):329-361.
  • 9. Sainsbury P & Grad de Alarcon: The psychiatrist and the geriatric patient: The effects of community care on the family of the geriatric patient. J Gerialr Psychiatry 1970; 4(1):23-41.
  • 10. Sands D & Suzuki T: Adult day care for Alzheimer's patients and their families. Gerontologist 1983; 23(1):21-23.
  • 11. Ranella JJ, Lilliston BA, Brush D, & McDowell FH: Day care for dementia patients: An analysis of a four year program. J Am Gerialr Soc 1984; 32:883-886.
  • 12. Neuman B: Family intervention using the Betty Neuman health care system model in family health, in Clements D & Roberts F (eds): A Theoretical Approach to Nursing Care. New York, John Wiley & Sons, 1983.
  • 13. Zarit S & Zarit J: The memory and behavior problems checklist and the burden interview. Unpublished paper. The Pennsylvania State University, University Park. PA, 1983.
  • 14. Zarit SH, Todd PA, & Zarit JM: Subjective burden of husbands and wives as caregivers: A longitudinal study. Gerontologist 1986; 26(3): 260-266.
  • 15. Osterman HM: In nursing's future: Establishing adult day health centers. Nursing Management 1986; 17(4):50-54.

TABLE 1

DISTRIBUTION OF AGE OF CAREGIVERS AND ADULT DAY CARE CENTERS

TABLE 2

DISTRIBUTION OF SEX OF CAREGIVERS AND PATIENTS

TABLE 3

UNIVARIATE ANALYSIS OF FREQUENCY OF MEMORY, BEHAVIOR, AND PHYSICAL PROBLEMS OF PATIENTS

TABLE 4

DISTRIBUTION OF CAREGIVER BURDEN SCORES PREPLACEMENT AND POSTPLACEMENT OF FAMILY MEMBER IN ADULT DAY CARE

10.3928/0098-9134-19890301-08

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