Alzheimer disease support group characteristics: A comparison of caregivers
Article Outline
Abstract
Although family members are known to continue to be involved in care after admitting a loved one with Alzheimer disease into a long-term care (LTC) facility, little research has been done regarding the psychosocial support requirements of these caregivers. Of the 55 caregivers surveyed in this study, 13 had care recipients living in LTC, and 42 had recipients living at home. Results were studied to see if differences arose in the needs of these two groups and if current support groups met those needs. Data indicated that caregivers with relatives in LTC facilities were older and had less interest in receiving information on a variety of subjects. However, both groups indicated having feelings of reassurance after attending support group meetings. (Geriatr Nurs 2003;24:32-5)
Although family caregivers are known to continue to be involved in care after admitting a loved one with Alzheimer disease (AD) into a long-term care (LTC) facility, little research has been done regarding the psychosocial support issues of these caregivers. To this end, the author developed a survey and collected data at 11 AD caregiver support groups. This article presents the preliminary findings and discusses the possible differences in needs of these caregivers compared with caregivers whose relatives remain at home.
Research has shown that the long-term task of caregiving can be associated with increased risk of physical and mental health problems. Depression, impaired immune response, anxiety, family discord, and social isolation are just a few of these problems.1, 2 The rate of depression among AD caregivers varies; however, research is consistent that caring for these individuals is psychologically distressing.3
Evidence supports the fact that family members remain involved in care after admission of the relative into a LTC facility.4 Few studies, however, have looked at caregiver issues after LTC placement. The misconception among researchers that these issues diminish when institutionalization commences and the anticipation of “burden” removal may be reasons for the lack of research.5 Government and health care agencies have focused their attention on the caregiver whose care recipient remains at home. Consequently, little research has been done to examine or address the issues that may result from LTC placement.
The act of institutionalizing an individual with dementia may remove the physical strain of caretaking, but it may not relieve the caregiver's stress. In actuality, support for the caregivers may become more important. Feelings of guilt, grief, anger, and depression may increase; anxiety about the quality of care and well-being of the care recipient may be added. Support groups and group therapy have been recommended to help address these issues.6
Current research acknowledges the necessity to develop interventions that meet caregivers' individual needs, and the development of support groups is one way to do this.2, 7, 8, 9 Literature is scant on support groups used exclusively as an intervention. A review found one research study with a focus on caregivers whose care recipients lived in LTC facilities.10 Three articles referred to the need for research in this area.4, 5, 6 Therefore, this article discusses the exploration of the needs of caregivers whose recipients were residing in LTC facilities compared with the needs of caregivers whose recipients live at home. Selye's stress theory1 was used as a basis for both survey development and discussion of support group dynamics and further recommendations.
Selye's stress theory
Current research, published literature, health care professionals, and facilitators of support groups struggle to completely define or explain the interpersonal dynamics that occur in support groups. No one theory or one intervention completely fits all caregivers. The unique and personal experience of caring for someone with AD necessitates the individualization of caregiver interventions.
The basic model of stress theory appears to accommodate this individualization. The model consists of stressors, outcomes, and moderators. Stressors are identified as the difficult situations faced by caregivers. Outcomes include the possible consequences related to the physical and emotional health of both the caregiver and the care recipient. Moderators consist of the social, personal, and material resources available to help regulate the relationship between stressors and outcomes.1 Acknowledgment should be made that the three components of stress theory are as individual to each caregiver as each caregiver's set of circumstances is distinctive to that person.
Method
The purpose of this survey was to look at the possible differences in needs, specifically pertaining to support groups, of caregivers whose relatives lived at home compared with those who resided in LTC facilities. The goal was to determine whether or not support groups in this sample were meeting the needs of both groups.
Observation of 11 AD caregiver support groups in New Jersey was performed in May and June 2001. A total of 55 caregivers participated. Thirteen caregivers (group A) had care recipients living in LTC facilities, and 42 caregivers (group B) had care recipients living at home. Four LTC facilities and 7 community organizations participated. Two nurses acted as facilitators—1 in a community-based group and 1 in a facility-based group. All the other groups were facilitated by social workers. The groups ranged in size from 1 to 11 caregivers. All participants filled out a brief survey form, developed by the author, before they left the support group meeting. They were instructed not to sign the forms to ensure anonymity. Quantitative and qualitative data were collected from this survey form.
Preliminary findings
The survey contained both demographic and subjective questions and an area for individual comments. Frequency distribution was used to compare the responses of the two groups. The data presented in the quantitative section represent results gathered from the survey filled out by the caregivers. The material presented in the qualitative section represents selected verbatim comments that caregivers wrote on the survey form.
Quantitative data
The mean age of group A (care recipients living in LTC facilities) was 68.8, and the mean age of group B (care recipients living at home) was 62.5. A national survey11 gives an average age of 46 years for caregivers. The results of this survey may reflect the trend that caregivers of individuals diagnosed with AD are much older than the national average and that the age of caregivers with care recipients living in LTC facilities is higher than that of caregivers with AD individuals living at home.
In comparing support group attendance, the results indicated that 69.3% of group A had attended a group for more than 6 months versus 45.2% in group B. This finding may reflect an increased need in caregivers with relatives in LTC facilities to use support groups as a coping mechanism.
More than half in both groups said they found a combination of talking with others and outside speakers to be of most benefit in a support group. Not all support groups offer outside speakers, however. The small size of the support group and the expense of outside speakers are reasons given by support group facilitators in this sample for the decision not to include speakers.
All participants completing the survey expressed greatest interest in learning more about nutrition, exercise, and current research on AD. The specific interests of the two groups appear in Table 1.
Table 1. Subjects of interest identified by Caregivers
| Factor Interests | Frequency Home | % Home | Frequency Facility | % Facility |
|---|---|---|---|---|
| Nutrition | 3 | 23.0 | 13 | 31.0 |
| Exercise | 3 | 23.0 | 14 | 33.3 |
| Aromatherapy | 0 | 0 | 3 | 7.1 |
| Computers | 1 | 7.7 | 2 | 4.8 |
| Research on AD | 4 | 30.8 | 25 | 60.0 |
| Gardening | 0 | 0 | 1 | 2.4 |
| Crafts | 0 | 0 | 4 | 9.5 |
| Music | 0 | 0 | 2 | 4.8 |
| Literature | 0 | 0 | 3 | 7.1 |
| No response | 2 | 15.4 | 9 | 21.4 |
Typically, individuals who are in LTC facilities are in the later stages of AD, and the disease progresses to multiple psychosocial losses for both the caregiver and the AD patient. These caregivers may have a more focused agenda for support group attendance, or a general lack of interest may demonstrate a greater feeling of hopelessness.
More than 70% of all participants (84.6% in group A and 73.8% in group B) said they felt reassured after attending a support group meeting. Emotions are subjective and not easily quantified within a group of individuals. However, taking into consideration the individual differences in situations of the sample caregivers, it would appear from the preliminary data that support group attendance resulted in a positive emotional response from the caregivers.
The quantitative survey data indicated three discernible differences between the groups. Caregivers whose care recipients were in LTC facilities were older, had attended support groups longer, and said they had less interest in learning about subjects proposed to be offered at support groups. The data also indicated similarities between the groups. A comparison of the two groups in selected areas appears in Table 2.
Table 2. Comparison of Caregivers
| Age | Caring at Home 40% older than 70 | Caring in Long-Term Care 54% older than 70 |
|---|---|---|
| Relationship to care recipient | More often a child | More often not related |
| Length of attendance at support groups | Short; often stays with one group | Long; more likely to have attended more than one group |
| Distance traveled to a group | More likely to stay close to home | More likely to travel farther |
| Found most helpful at group | Talking with others | Combination of speakers and others more useful |
| Interest in information offered at support groups | More interested in AD research, prefer variety of topics | Less interested in AD research, prefer narrow interesting topics |
| Feelings after attending support group | Higher rate of happiness | Higher rates of sadness, depression, and being upset; conversely, higher rate of reassurance |
Qualitative data
The survey form included an area for the participants to add additional comments. Caregivers' individual experiences are an essential component to understanding caregiving. The following selected comments are from caregivers who completed the survey:
Professionals working with this population may find it difficult to offer the effective emotional and practical support that these individuals need without the recognition of the qualitative component. Statistics should not be the sole factor in determining the construct of support groups.
Two similarities were noted after all the qualitative statements were reviewed. First, each group expressed a great deal of anger that this disease should even exist. Second, both groups presented the façade of laughter brought on by a shared story relating an incident that contained both humor and pathos. This author observed that, although laughter formed on the lips of all these caregivers, it never reached their eyes.
Discussion
Given the acute social and financial impact of caregiving in society and the impact of AD on the health care system, the focus of this project is timely. The sample size of 55 participants, although small, provided some interesting information. The survey form could have included many more questions. Researchers have inundated society with surveys to the point of disinterest in participation. The author's goal was to develop a survey whose brevity would encourage participation and completion. This goal was achieved. No participants in the groups observed refused to complete the survey.
Another limitation was a lack of ethnic diversity among the participants. All participants listed English as their primary language. Research has indicated the impact of culture on caregiver attitudes and coping skills. The inequity in the numbers between the groups made it difficult to compare them. Despite these qualifying factors, the differences between the groups in this sample indicate the need for further research in this aspect of AD and caregiving.
Recommendations
Stress theory accommodates the individualization of needs that nursing recognizes as a successful approach to health care. Many geriatric nurses who work with individuals diagnosed with AD and their caregivers have come to understand that the only rule is that there are no rules. These caregivers live, at best, on a roller coaster existence of emotion and physical activity; at worst, they live lives of quiet desperation.
This kaleidoscope of emotions was evident in both groups of caregivers in this sample. Selye's stress model relates stressors and coping mechanisms to handle or adapt to stressors. Social support groups may provide a coping mechanism to deal with caregiver stressors. The preliminary data indicated that caregivers of individuals in LTC facilities and the community benefit from support groups, even though specific needs may differ. Further research is needed to investigate stress reduction of caregivers as a result of caregiver support groups compared with stress reduction through other modes.
A review of the preliminary findings from this project indicated that both types of caregivers continue to reside in the community, there appear to be more community-based support groups than facility-based ones, the sample lacked cultural diversity, and nurses had limited involvement in the support groups.
Geriatric nurses working with people with AD and their caregivers are particularly aware of the emotional toll of those involved. Recognizing, developing, and implementing groups for the social support needs of all caregivers of people with AD, including those who no longer have their loved ones at home, can improve stress levels of caregivers and, indirectly, the person with AD. Increased involvement by geriatric and community health nurses in AD support groups would be a positive response to the American Nurses Association position paper12 objective to support the development of community-wide resource networks to assist caregivers.
Furthermore, preliminary data indicated interest from both groups on the subjects of AD research, nutrition, exercise, and computers. Including information on these topics in the form of speakers or written materials might appeal to support group participants. It is important to be responsive to the support group as unique. Being aware of the subjects mentioned is important, yet it also is recommended that support group facilitators survey their groups to assess interests and needs. For example, when AD research is identified as a topic for presentation in the support group, it would be advisable to ask the members of the group if they have any time limitations, whom they would like to hear speak on the topic, and about what specific areas they would like to learn. This allows support group participants to have ownership in their group and encourages positive coping and decision-making skills.
Thus, based on the literature and data from this project, specific areas for further inquiry might include the varying needs and interests of participants, the impact of cultural diversity on the needs of AD caregivers, community needs assessments of AD caregivers by geriatric and community health nurses, LTC facility response to the needs of AD caregivers, and interdisciplinary research with geriatric and community health nurses and social workers related to the efficacy of support groups.
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PII: S0197-4572(02)09017-1
doi:10.1067/mgn.2003.17
© 2003 Mosby, Inc. All rights reserved.
