Studies have found that families, not institutions, are the primary source of caregiving activities required by demented persons.1,2 The care provided to dementia victims places great demands on family members, and several studies have described the caregiver burden that may result. A distinguishing feature of family caregivers is that the majority are women. In a study by Silliman et al, 84% of primary caregivers interviewed were women,3 and in a study by Scott et al, 65% of the primary caregivers were women.4 George and Gwyther reported 71% of their caregiver subjects were women5; Caserta et al reported 73.5% were women6; Horowitz reported 76% were women7; Gilhooly reported 39 of 48 caregivers were women8; and Zarit et al had 25 women of 29 total caregivers in their study.9
Current trends indicate, however, mat a greater involvement of men may be needed to cope with future demands. These include an expanding need for caregivers for demented elderly persons,10 a drop in die size of me American family wim fewer children available," and an expected increase in the number of women entering professional roles who are also likely to have caregiving responsibilities.12
Yet little is known about the maid caregiving experience. In particular, is unclear what can be done to assis men in taking on more caregiving re sponsibility, and whether there are dif ferent social, economic, and emotiona resources needed by men to perform it this role. Thus, the focus of this study was to explore and describe personal experiences of men who have taken or the role of providing the daily direct care needed for a demented relative. The study also attempted to compare the experiences of these men with another group of men who have decided to institutionalize their demented relative. We were looking for differences in terms of the men's perceptions of stress and burden associated with caregiving tasks, in terms of the responsibility felt for die relative and in terms of their emotional attachment to their relative.
We felt more information was needed on motivating factors of men in the caregiving role. A few descriptions have arisen, mostly through studies mat have dealt with sex differences. Of these, Horowitz examined the role performance and consequences for sons and daughters as caregivers to older parents and concluded that sons only ook on the caregiver role in the abence of an available sister, that they turned to their spouses for the 'hands-on" care needed, and that experiences are less stressul for sons when compared with laughters.7 In their study comparing iusbands and wives, Fitting et al found hat women caregivers were more disressed than men, and younger careivers were lonelier and more resentful their role than older caregivers.13 Snyder and Keefe found that women also seem to cope differently as compared wim men in their use of community resources.14 Women use support groups; men ask for housework assistance from community resources.
Studies focusing exclusively on male caregivers have been slow to evolve. Vinick interviewed 25 elderly widowers, who described the time they spent caring for their disabled wives. 15 The men tended to minimize the hardships they had faced, but did describe feelings of isolation and being tied down by their role. The author described her subjects' accounts as "stoic," often not elaborating on the emotional consequences that one would commonly attach to the care of a dying spouse. In their "Unsung Heroes Project," Kaye and Applegate identified 148 men through national caregiver support groups.16 They found that although the overall scores for burden were low, men expressed more burden when they cared for a demented relative when they lived in the same household as the recipient of care, and if they were employed. Men also tended to give less of the hands-on care needed by the relative, a finding that is consistent with other studies.
There is a need to further describe male caregivers in terms of the contribution they provide, and how and if they can become more involved. Our study attempted to do this.
Subjects interviewed for the study consisted of two groups. Group 1 consisted of men providing direct care for a demented elderly relative at home and who considered themselves the primary caregiver for their relative. In recruiting these subjects, we required that they be actively involved in the care needed by their relative. Group 2 (enrolled for comparison) consisted of men who had placed a demented relative in a nursing home and acknowledged being the primary responsible party, although they were not usually involved in the daily care of the relative.
FAMILY STRUCTURE FOR MALE CAREGIVERS: PERCENT IN EACH GROUP HAVING INDIVIDUAL CHARACTERISTIC
All subjects were required to have been in their current role for a minimum of 4 months. Twenty men participated in the study; 12 men were in Group 1 and 8 were in Group 2. This was a nonrandomly selected sample, coming from the patient population of me Geriatric Clinic of the University of North Carolina Department of Family Medicine, from the population of demented residents of a local nursing home, and from referrals of local Alzheimer's Association support group leaders. Thus, the subjects in Group 1 were male caregivers bringing their demented relatives to the clinic for outpatient care and the subjects of Group 2 were relatives of nursing home residents wim dementia. Support group referrals generated both Group 1 and Group 2 subjects. Eight other men identified and meeting the inclusion criteria refused to participate.
The men of both groups had similar backgrounds. Of those in Group 1, 10 of the 12 men were white, with ages ranging from 42 to 80. The mean age was 59.3 years. Nine men (75%) were married, and 6 (50%) of the men were caring for a demented wife. Five of the 12 men were caring for their mothers, and 1 man was caring for a relative who was neither his wife nor mother. Seven (58%) were working and the others were retired. Of those working, all described their type of work as being professional. Five men had college degrees (with 4 of these having advanced degrees) and only 2 men had less than a high school education.
All of the men in Group 2 were white and married, with ages ranging from 35 to 74. The mean age of this group was 65.7 years. Five of me 8 men (62%) were caring for a demented spouse and the other 3 were caring for a mother or another relative. Three men (37%) were working at jobs they described as professional and the others were retired. Half were college educated and none had less than a high school education. Thus, our total sample of 20 men were mostly white, married, had a mean age of 62, were highly educated, had professional backgrounds, and were middle to upper class.
An interview protocol focused on the following areas: demographics; the caregiver's family; the recipient of care; activities of the caregivers; resources that the men used; me relationship between the caregiver and the recipient; and a few open-ended questions on factors influencing the decision to care for the relative.
CHARACTERISTICS OF THE CAREGIVING RELATIONSHIP: DIFFERENCES BETWEEN GROUPS OF MEN
The study was descriptive in nature, but two scales did allow statistical analysis, looking for differences in the two groups. The men were asked to complete the Burden Interview, developed by Zarit et al.9 A total score (ranging from 0 to 88) estimates the degree of burden. The other measure involved the subscale describing activities of daily living (ADLs) from the Functional Dementia Scale, developed by Moore et al.17 This subscale consists of seven items asking about, for instance, whether assistance was needed with eating and dressing. The men were asked these questions about their relatives to measure the functional impairment of the demented person.
Family Relationships of Caregivers
Most of the subjects came from households of one or two persons. The men consequently had few relatives available to assist them in their responsibilities (Table I). No differences were seen between the two groups in weekly contact with family members and satisfaction with this contact. Most of the men stated they were very satisfied or somewhat satisfied with their family contact.
Eighteen of the 20 men described strong feelings of responsibility and taking on leadership roles when it came to matters involving their families. These men expressed a sense of obligation toward family members; they described situations in which they alone would care for someone in need.
The Recipients of Care
Nearly all (92% for Group 1 and 100% for Group 2) of the persons receiving the care were women; their ages ranged from 63 to 89, with a mean age of 76 years (75 years for Group 1, 77 years for Group 2). In Group 1, 50% of the care recipients were wives of the caregivers; in Group 2, 62% were wives. Besides the dementia, relatives had an average of three different medical diagnoses (2.75 for Group 1, 2.5 for Group 2), and had been diagnosed with dementia an average of 4.5 years. Most men stated that they had been in their present situations more than 3 years.
Caregiving Activities of the Men
The men in Group 1 spent more hours on a daily basis (an average of 7.2 hours) with all activities, as opposed to Group 2 (an average of 1.7 hours). Men in Group 1 were also more likely to receive help from wives and daughters and to use outside help, such as visiting nurses and maid service. Table 2 describes characteristics of the caregiving relationship for both groups. The men stated they were not as involved with ADLs as with instrumental activities of daily living (IADLs), such as managing finances or running errands.
Emotional Relationship with the Care Recipient
When asked to rate the closeness oftheir relationship with the relatives, both now and before the relative became ill, 90% of the men described feeling very close or moderately close to their relatives. There was no apparent difference between the two groups (91% for Group 1 and 87% for Group! 2). Findings were similar for both time frames (ie, the present and before the relative became ill).
Degree of Burden Experienced
The Burden Interview scores for the men ranged from 8 to 67 for Group Ii and 19 to 65 for Group 2. Mean scores were 37.9 for Group 1 and 34.3 for Group 2; both groups fell into the mild to moderate burden category. Although the mean score was slightly higher for Group 1 , when the group means were tested, there were no statistically significant differences found between groups. Both groups seemed to be experiencing similar levels of burden, regardless of whether their relative was with them or in a nursing home.
Functional Impairment of the Relative
Total scores for the seven ADL items on Moore's Functional Dementia Scale can range from 7 to 28; a higher score is associated with greater impairment. The total score was divided by 7 to obtain a mean ADL score. The ADL scores for relatives of men in Group 1 ranged from 1 to 4 and had a group mean of 2.71; for relatives of men in Group 2, the scores ranged from 2.7 to 4 and had a group mean of 3.58. When the group means were tested, there was a statistically significant difference found (p<.05), with the demented relatives of the men in Group 2 appearing to be more impaired.
Decision to Become a Caregiver
Four open-ended questions explored the reasons that the men took on the role of caregiver. These questions involved motivating factors, obstacles they faced, and the rewards they perceived. Group 1 was asked what would cause them to end their caregiving role; Group 2 was asked what conditions made them place their relative in a nursing home. For most subjects, the main motivator seemed to be a feeling of love for the person. They often stated that if the situation was reversed, they were certain that the other person would have cared for them. A few men stated that they felt an obligation and there was no one else to care for the individual.
When asked about obstacles, the relative's confusion and loss of the ability to communicate came up most often. Other problems in managing the relative's condition, such as incontinence, the many hours spent in caregiving activities with little help from others, or the relatives wandering away from home, also emerged. Almost all of the men in both groups spoke of a change in their lifestyle; for those still employed, this often affected their professional life as well.
When asked about the rewards, the men described humorous moments that often occurred while caring for their relatives. For many, this was the first time that they were called on to provide care; they reflected on amusing experiences. They also stated that being able to know exactly how the person was being treated was a reward. For those men with relatives in the nursing home, the fact that they were not able to be in control of me care sometimes emerged as a stressor.
The men in Group 1 seemed determined to continue in their role. Several stated that they would do this until their death or the death of the relative. For Group 2, reasons often given for placing relatives in a nursing home were their own poor physical or mental health, the impairment of the relative, or experiencing sadness to see me relative progressively deteriorate.
This study explored the differences in men who care for a demented relative at home as opposed to men who institutionalize a relative. Although the number is small, our findings suggest that there may not be many differences. Both groups had similar demographic characteristics. Support from other family members in terms of daily contact, and satisfaction levels with this contact, also did not seem to differ. Both groups described feelings of responsibility and, especially, love toward their relatives.
Most men had been in meir current living arrangements and caring for meir relatives more than 3 years. Their actual involvement in caregiving activities was most likely to include me performance of IADLs for the relative as opposed to ADLs, a finding concurrent with other studies. In addition, we found that the men in Group 1 were not the sole providers of care although they considered themselves the primary caregiver. Similar to other studies, they received assistance from wives and daughters for the hands-on care.7,16 The men in Group 2 spent little time (Table 2) on the care needed by their relative. It seemed that the term "caregiver" had different meanings.
There was no statistically significant difference in the men's scores on the Burden Interview. This was not expected; we believed that the men taking care of relatives at home would have felt more burden than those who had placed their relatives in a nursing home.
Several possibilities exist to explain why the burden scores were similar. It is possible that both groups of men found it difficult to acknowledge their stress level in general; this would be concurrent with the work by Vinick, who described the reactions of me men she interviewed as stoic.15 Other researchers exploring differences in men and women, such as Fitting et al13 and Horowitz,7 also found men less distressed man women.
Because most of the men had been in the same situation for more than 3 years, anomer possibility is that they had settled into their current lifestyle and had adjusted to (or had improved in) their roles as caregivers. This group of men may have been similar to caregivers in a study conducted by Gilhooly, who found that mental health improved the longer the caregiver had been in the role.8
Finally, these men were older (with a mean age of 62), and similar to the findings of Gilleard et al,18 may have been less inclined to describe their experience as burdensome or stressful, when compared with a younger group of caregivers who seemed to be seeking relief from their role.
Only two differences actually emerged between the two groups. Time spent on a daily basis on caregiving activities and the likelihood of receiving assistance from women and visiting nurses were characteristics separating the two groups of men. As might be expected, the men caring for relatives at home spent more time in these activities. The other difference found, which is worthy of further exploration, is that the demented relatives who were in nursing homes were more functionally impaired than those at home. It is possible that the men in Group 2, not unlike family members in general, institutionalized their relatives at the point when they were perceived to be severely impaired. Perhaps the men in Group 1 had not yet reached that point.
The findings of this project also help explain why men often represent a minority in studies on caregivers. Our small sample size reflects this: the men were difficult to identify, they hesitated to give consent, and their responses were, at times, brief. Future studies enrolling male subjects will need to be flexible yet persistent in their approach.
Why do men find it difficult to become caregivers? Our results suggest that a combination of factors could be considered. The lack of support described by these men, especially the men who had placed relatives in nursing homes, may influence their ability to be caregivers. The impairment of the demented relative was a significant factor. Poor physical health of the men also emerged as a possible deterrent to caregiving. These factors have been described before in the caregiver literature. Perhaps a more noteworthy issue to consider is the demented relatives' need for assistance in ADLs, and the men's lack of involvement with this need.
The difficulties described by these men have important implications for nurses wanting to address both the cognitive and affective needs of male caregivers. Nurses may find it useful to offer instructional sessions, planned especially for men, on how to care for an infirm elderly person at home. If men (especially older men) have not been expected to feed, bathe, or dress a relative, this activity becomes a new learning experience with which they may need assistance. Nurses running support groups may want to hold sessions aimed directly at men to work through emotional problems they face in their caregiver role. Regularly assessing their level of burden (such as through the Burden Interview) will give an indication of relief felt by the group. Individual sessions may prove helpful for those men unable to express concerns in the group.
Future nursing research on the male caregiving experience would be assisted by a more precise definition of a caregiver; studies will need specific criteria to apply findings. Perhaps caregivers could be ranked in some order according to the actual number of hours spent on a daily basis, or placed in categories based on the types of assistance they provide. In addition, leaders forming support groups designed for men should strongly encourage and consider their involvement in research; they are difficult to find and are important to study on a longitudinal basis. It is only through these efforts that we can gain a better understanding of why some men find it too difficult or strenuous to become a caregiver.
Yet, some of the men in this study remained diligent in their caregiving roles. Because few differences emerged between the two groups, we conclude that there are other, unknown reasons for this diligence. We suspect that the men who persisted in their role did this out of love and commitment; they had made a conscious decision at some point to care for their relative. The emotional strength and determination we sensed from these men may have been the only personal attribute separating the two groups. In describing his commitment, one man stated, "we took marriage vows. . . I promised to care for her in sickness and in health. . . I will do this until I die." It is possible that this tenacity to care for a loved one, even under stressful conditions, is more of a feminine trait and might explain why more caregivers are women. Our study cannot test that theory, but it can provide evidence that some men do assume the role, even in adverse situations, and deserve recognition for their devotion. The challenge to us, as advocates for the elderly, is to provide them with the support they need to continue as caregivers.
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FAMILY STRUCTURE FOR MALE CAREGIVERS: PERCENT IN EACH GROUP HAVING INDIVIDUAL CHARACTERISTIC
CHARACTERISTICS OF THE CAREGIVING RELATIONSHIP: DIFFERENCES BETWEEN GROUPS OF MEN