The heavy burden of caregiving on members of a household providing care for an elderly individual with dementia is widely recognized. A number of scales have been developed to measure and assess these types of burden (Greene, Smith, Gardiner, & Timbury, 1 982,- Lawton, Kleban, Moss, Rovine, & Glicksman, 1989; Montgomery, Gonyea, & Hooyman, 1985; Poulshock & Deimling, 1984; Rabins, Mace, & Lucas, 1982; Robinson, 1983; Vitaliano, Russo, Young, Becker, & Maiuro, 1991; Zarit, Reever, & Bach-Peterson, 1980). Many studies have been conducted concerning the sources of sense of burden among caregivers (Coyne, 1991; George, 1994; Harris, 1993; Keady & Nolan, 1995; Morris, Woods, Davies, & Morris, 1991; Pearlin, Mullan, Semple, & Scaff, 1990; Penning, 1995).
On the other hand, George and Gwyther (1986) state "burden" alone is not adequate to fully explain the complexities of caregiving for an older person with dementia. They assert it is important to grasp the overall sense of well-being of the caregiver as derived from physical health, mental health, participation in society, and economic resources.
In the early 1990s, as studies began to reveal the warmth, comfort, pleasure, and other positive dimensions of caregiving for older adults with dementia, researchers began to suggest the need to study the caregiver's whole life (Cohen, Pushkar-Gold, Shulman, & Zucchero, 1994; Grant & Nolan, 1993; Kinney & Stephens, 1989; Lawton et al., 1989; Motenko, 1989; Teri & Logsdon, 1991). Qualitative studies have begun to concretely show how caregivers view patients with dementia in their care and how they provide care in actual practice (Collins, Given, & Given, 1 994; Harvath, 1994; Kobayashi [Suwa], Masaki, & Noguchi, 1993; Willoughby & Keating, 1991; Wuest, Ericson, & Stern, 1994). In Japan, Kobayashi et al. (1993) proposed a developmental process for the caregiving experience consisting of seven stages (Sidebar). This developmental process suggests the caregiving experience can be improved for both elderly patients with dementia and their caregivers.
THE DEVELOPMENTAL PROCESS OF CARECIViNC
Based on these studies, the following steps were taken in the present study:
* A personal evaluation of an individual's caregiving experience.
* Preparation of an educational program.
* Providing the program to the caregivers.
By monitoring future caregiving experiences, an estimation of the efficacy of the program can be made. However, an assessment scale required for the evaluation of the caregiving experience, has yet to be developed. The present study was aimed at developing an assessment scale based on the caregiver experience model explained in Japan by Kobayashi et al. (1993).
One hundred and sixteen caregivers (32 men and 84 women) of older adults with dementia who were receiving out-patient care at a Senile Dementia Center, located near Tokyo, Japan were recruited for the study. After the author informed the caregivers in detail about the research, they agreed to cooperate with the study by completing a questionnaire.
Senile Dementia Centers were authorized and established at the prefecrural level in general hospitals with departments of psychiatric medicine. These facilities include health, medical, and social service functions, and their services respond to the needs of older individuals with dementia, differential diagnosis, selection of medical regimens, and emergency care.
The purpose of the study was explained verbally to individuals visiting the hospital. Those who agreed to participate were asked to complete the questionnaire. In Japan, this relatively informal way of asking cooperation with research is the general rule. Of the 116, the author collected 90 valid responses. The analysis is based on the responses of those 90 caregivers, so the rate of valid responses was 77.6%. (The sample also includes the 90 older adults with dementia under their care.) The questionnaire consisted of items related to:
* Attributes of the dementiaaffected older adult (caregiver's age, patient's age, and number of years of education received by the caregiver were requested as continuous data; gender, relationship, living situation, and outside employment conditions were requested as nominal data).
* Relationship between the older adult and the caregiver prior to the onset of the dementia (i.e., very good, fairly good, not very good, very bad).
* Number of services caregiver used while caring for the patient.
* Draft scale for evaluation of the caregiving experience in relation to the patient with dementia.
* The Burden Interview developed by Zarit et al. (1980). The Burden Interview was included to confirm whether the scale of caregiver experience can accurately measure aspects other than burden. The Burden Interview is used to measure caregivers' sense of burden while caring for older adults with dementia. The interview is completed by the caregiver and consists of 22 questions with responses chosen from a five-item list of options. The higher the number of points on the scale, the greater the sense of burden felt by the respondent. The reliability and appropriateness of the scale is well established, and it is the most frequently used scale in studies of caregiver stress and sense of burden.
For this study, a previously published Japanese translation of the questionnaire was used. Simultaneously, the physician in charge of each patient with dementia was asked to provide the following information:
* Patient's clinical diagnosis (code was 1 for Alzheimer's-type, 2 for vascular dementia, 3 for mixed type, 4 for other).
* Level of the condition (code was 1 for light, 2 for moderate, 3 for serious)
* Activities of daily living (ADL) (code was 1 for independent, 2 for partly independent, 3 for completely dependent).
* Display problematic behavior (code was 1 for presence or 2 for absence).
The draft scale for assessment of the caregiving experience was created on the basis of a study by Kobayashi et al. (1993). This developmental process of caregiving (Sidebar) occurs in the first through fourth stages of the Beginning Process and the fifth through seventh stages of the Awakening Process. During the Beginning Process, the caregiver tends to be mainly suspicious and disciplinary (e.g., critical, scolding, intolerant) toward the elderly individual with dementia, and attempts to communicate tend to be chiefly through verbal language.
Gradually, the caregiver becomes resigned to the the patient's steadily deteriorating condition. After passing through this Beginning Process, however, caregivers develop the awareness that non-verbal communication with the person with dementia is still possible. As this awareness grows, care becomes more empathetic and considerate, and the relationship with the patient becomes warmer and more intimate.
The draft assessment scale was compiled on the basis of the caregiving developmental process. In this compilation process, to identify the particular experiences of caregivers, 10 questions were prepared for each of the seven stages of the developmental process, resulting in a draft of 70 items.
The 10 questions for each stage were created on the basis of information gathered in interviews with caregivers who participated in previous qualitative research (Kobayashi et al., 1993) showing the developmental process of caring for older adults with dementia. Subsequently, two nursing researchers, with a full understanding of this development process, were asked to consider the conceptual appropriateness of the questions for each stage. Some corrections were made based on their comments.
Three caregivers engaged in home care of older adults with dementia were consulted to determine whether any of the questions were difficult to understand or difficult to answer. After they approved all 70 questions, this list was adopted for the questionnaire. The respondents chose from a 5-scale list of options from "never" (1 point), "very infrequently" (2 points), "sometimes" (3 points), "frequently" (4 points), to "continually" (5 points). The analysis was conducted using the Statistical Package for Social Sciences method (SPSS Inc., Chicago, IL).
Demographic data of the caregivers are listed in Table 1 . Of the 90 caregivers responding to the questionnaire, 25 (27.8%) were men and 65 (72.2%) were women, showing an overwhelming majority of caregivers were women. The relationship of the caregiver to the patient was husband (n = 12, 13.3%), wife (n = 9, 10%), son (« = 13, 14.4%), daughter (n = 22, 24.4%), daughterin-law (n = 33, 36.7%), and other (n = 1, 1.1%). The average age of the caregivers was 51.4 (SD = 11.3), the average age of the male caregivers was 57.6 (SD =12) and of female caregivers was 49 (SD = 10). Eighty caregivers (88.9 %) resided in the same house as the dementia-suffering older adults in their care, 10 (11.1%) lived separately; 80 (88.9%) were not employed, and 10 (11.1%) were employed.
DEMOGRAPHIC DATA OF THE SUBJECTS AND ELDERLY DEMENTIA PATIENTS
Thirty-four (38.8%) caregivers were the sole care providers and the same number and proportion shared the burden with one other person. Twenty-two caregivers (24.4%) relied on two or more other individuals. The average education of the caregivers was 11.6 years (SD = 2.8): 1 1 .6 years (SD = 2.7) for men and 1 1.6 years (SD = 2.8) for women (virtually the same for men and women).
The overwhelming majority of caregivers (n - 56, 62.2%) had not used any caregiving service. Nineteen caregivers (21.1%) had used one such service, 9 (10%) used two services, 5 (5.6%) used three services, and 1 (1.1%) used four services. Twenty-three caregivers (25.6%) previously had very good relationships with the patient, 54 (60%) said they had good relationships, 11 (12.2%) said they did not have a good relationship, and 2 (2.2%) said they had a very bad relationship. Thus, 85% of the caregivers had good relationships with the individuals they cared for prior to the onset of dementia.
Attributes of Older Adults with Dementia
Demographic data of the elderly individuals with dementia are listed in Table 1.
ROTATED FACTOR LOADINGS OF CAREGIVER'S EXPERIENCE WITH ELDERLY DEMENTIA PATIENT (VARIMAX METHOD)
There were 20 men (22.2%) and 70 women (77.8%) patients, making women the overwhelming majority. The average age of the patients was 74.9 years (SD = 7.5), 74.9 years for men (SD = 6.6) and 75 years for women (SD = 7.7). There were 64 patients with Alzheimer's-type conditions (71.1%), 17 with vascular dementia (18.9%), mixed-type dementia (8.9%), and 1 other (1.1%), showing that the overwhelming proportion displayed Alzheimer-type symptoms. Of the sample, 41 patients (45.6%) suffered from light cases of dementia and 40 (44.4%) from moderate cases. Nine patients (10%) had serious cases of dementia.
Thirty patients (33.3%) were independent in ADLs, 53 (58.9%) were partly independent, and 7 (7.8%) were completely dependent. Fifty-eight patients (64.4%) exhibited problematic behaviors, and 32 (35.6%) exhibited no problematic behavior.
Scoring Caregiver Burden
The average score for all the caregiver's measured using the Burden Interview was 58.2 points (SD = 15.4). For male caregivers it was 57.4 (SD = 16.6) and for female caregivers 58.5 (SD = 14.8), showing little disparity existed between male and female caregivers.
Development of Assessment Tools
When the survey consisting of 70 questions was conducted among a sample of 116 caregivers, 90 valid responses were received. To confirm the unidimensionality of the scale using the data collected, items showing noticeably anomalous figures in the response distribution would be eliminated. However, no such items were found. Next, the correlation coefficients were computed for each of the 10 items at all seven stages. Then, 35 items were selected (5 items each for the seven stages), using those with item-total correlation coefficients of greater than .4 to create logically justifiable subscales to measure the development process of caregiving.
The remaining 35 items were subjected to factor analysis (varimax rotation) and 3 factors were extracted. Twenty-four of the 35 items factor loading showed high values of .5 or greater. On this basis, 24 items were judged to be significant as assessment tools for evaluating the experience of caregivers of demented elderly individuals and adopted for the survey.
To check the results of the factor analysis, a cluster analysis of the 35 items was conducted. Three clusters were found. The three clusters were confirmed as coinciding with those resulting from the factor analysis. ,
A factor analysis (varimax rotation) was conducted for the 24 items (Table 2). Factor 1 consisted of a subscale of 1 1 items for which the factor loading was between .57 and .81. These Factor 1 items of the subscale corresponded to Stage 5 through Stage 7 of the developmental process in caregiving, or what is called the "empathetic caregiving experience."
Factor 2 consisted of a subscale of 7 items for which the factor loading was between .54 and .8. These corresponded to Stages 1 and 3 of the developmental process in caregiving, or what is called the "disciplinary caregiving experience."
Factor 3 consisted of a subscale of 6 items for which the factor loading was between .62 and .78. These included 5 items belonging to Stage 4 and 1 item ("I don't take the patient seriously") belonging to Stage 2. In content, this is the same as the items in Stage 4 reflecting resignation, so this is called the "resigned caregiving experience." The contribution rates were 23.3% for the Factor 1 (empathetic caregiving experience), 15.9% for the Factor 2 (disciplinary caregiving experience), and 12.3% for the Factor 3 (resigned caregiving experience), for a total contribution rate of 51.4% for the three factors. These figures show the construct validity of the scale.
On the basis of this analysis, an assessment scale for the experience of caregiving for older adults with dementia can be identified as comprising 24 items in three subscales. This scale is called the Assessment Scale for Caregiver's Experience with Dementia (ASCED). Because the ASCED is conducted by the self-rating method on a 5-point scale of agreement, the higher the total score for the three subscales, the more intense the caregiving experience for the caregiver.
When the Cronbach's alpha was computed for each ASCED scale, it was found that the empathetic caregiving experience scale was a = .89, the disciplinary caregiving experience scale was a = .78, and the resigned caregiving experience scale was a = .81. This calculation assures the internal consistency of the ASCED.
A test-retest reliability was calculated based on responses from 30 caregivers 1 to 4 weeks later. The correlations of the test-retest results were r = .34 for the empathetic experience, r = .75 for the disciplinary experience, and r = .71 for the resigned experience. These results confirmed the test-retest reliability of the latter two subscales.
Correlation Between ASCED Scores and Burden Scale Scores
To determine whether the ASCED scores offer a scale that can be used to evaluate aspects of caregiving for older adults with dementia other than sense of burden, an analysis was conduced correlating sense of burden with the three degrees of the ASCED scale. The correlation between the empathetic caregiving experience and burden is a low .08, suggesting little correlation. However, the correlations between the disciplinary and resigned experiences were moderate at .38 and .41, respectively. These results indicate the sense of burden is different for the empathetic caregiving experience.
Classification of Types of Caregiving Experience Using the ASCED
Because the number of items for each of the three subscales of the ASCED differ, the scores for the three scales for each individual caregiver cannot be compared simply. In the attempt to discern which of the three experiences was strongest for each caregiver, the percentages of scores for each of the three subscales was computed for each caregiver. When the types of caregiving experiences for individual caregivers were classified according to which of the ratios was the largest, it was found that the experiences fell into six types.
Type 1 represents the distinctly disciplinary caregiving experiences by disciplinary-oriented caregivers (4 individuals), for whom scores decrease in the order resignation to empathetic. Type 2 represents caregiving experiences markedly characterized by resignation at a low level, equivalent to the other two scores by resignation-oriented caregivers (n = 13). Type 3 represents distinctly empathetic caregiving experiences at a low level, equivalent to the other two scores by empathyoriented caregivers (n = 43). Type 4 represents caregiving experiences characterized by both the disciplinary and empathetic modes by caregivers who are both disciplinary and empathetic (n = 26). Type 5 represents those for whom the ratios for all three subscales were uniformly very low (n = 2). Type 6 represents those for whom the ratios for all three subscales were uniformly very high.
Reliability and Validity of the ASCED
This study examined the possibility of developing assessment tools for the caregiving experience in Japan. The ASCED was developed on the basis of the developmental process of caregiving demonstrated in qualitative studies. It logically consists of seven stages, and can be described in terms of three subscales when sorting the seven stages into larger groupings. Stages 5 to 7 can be categorized as the Awakening Process, and Stages 1 to 3 can be categorized as the Beginning Process. Stage 4 represents the transition process between the Awakening and Beginning processes. In this way, the developmental process is linked to the three scales of the ASCED.
Cronbach's alpha and cumulative contribution rate values demonstrated that the ASCED, which was developed on the basis of the developmental process of caregiving revealed through qualitative studies, has high internal consistency and construct validity. The question items were compiled from the accounts of caregivers from their experiences and reviewed by specialists in professional nursing. Thus, the questions were shown, after coefficient analysis, to appropriately express the stages of the caregiving process from the time they were compiled as a scale. This confirms content validity.
Further, using the ASCED to evaluate aspects of caregiving other than sense of burden in the empathetic caregiving experience, was considered significant for evaluating the caregiver as a whole person. As far as re-testing, however, reliability for the empathetic caregiving subscale was markedly lower than for the other two subscales, leaving some questions unanswered.
Questions related to the empathetic caregiving experience failed to indicate whether or not the experiences were based on an understanding of the mental functional condition of elderly patients with dementia (e.g., memory, orientation, recognition) because of the test-retest reliability problem. Understanding the mental functions of each elderly individual, and assessing the influence of those functions in daily life, form the foundation for proper caregiving of elderly patients with dementia. These factors are essential for empathetic caregiving. However, because these factors were not included in the ASCED questions, it was not possible to evaluate only the caregivers who were able to provide empathetic care in a stable environment.
Although the scale was developed based on a linear model in which caregiving experience was believed to develop through the caregiving process, some caregivers scored high on both the disciplinary caregiving experience subscales and the empathetic caregiving experience subscales. This may be because of the aforementioned problems with the questions. Questions that properly assess not only the caregiving experience, but also how caregivers understand the mental functions of elderly patients with dementia, are needed.
Tasks for Further Research
One of the remaining tasks is related to the use of the ASCED as an assessment tool is the test-retest reliability of the empathetic subscale. Question items that help to discriminate caregivers able to provide stable empathetic care based on a proper understanding of the mental functions of elderly patients with dementia should be studied.
In addition, it is inconvenient that the number of items in the three subscales is not equal. The ASCED should be further refined, increasing the number of respondents surveyed and making it an assessment tool based on ample data that will be easy to use. Furthermore, the type of caregiving experience and related factors should be studied. The findings can be used to develop an educational program for caregivers.
The ASCED was created on the basis of the developmental process, and the present research is based on a cross-sectional survey of the caregivers of individuals with dementia. Because of this, the present study does not realistically address the changes in the caregiving experience over time. An important task of those in the nursing profession is to work closely with caregivers in their caregiving experience and to provide instruction and support in their efforts to provide empathetic, sympathetic care for older adults with dementia in everyday life. By using the ASCED assessment tools in the course of evaluating nursing intervention, it should be possible to develop further improved intervention methods by concretely identifying the process of change in the experience of individual caregivers.
This study was directed at the evaluation of the caregiving process in Japan. Future study is needed to determine if the ASCED could be applied to the caregiving experience in other countries where care for elderly individuals with dementia is an issue.
This study was conducted to aid in the development of assessment tools to evaluate how caregivers view those they care for and how they conduct care (i.e., the caregiving experience), and is based on the caregiving experience model developed by the author. This made it possible to develop the reliable and valid ASCED assessment scale and classify caregivers into six types based on the caregiving experience. Further research will be conducted to refine the ASCED, examine qualitative and quantitative changes in the caregiving experience, and study the nature of care for elderly patients with dementia and of the caregivers themselves.
- Cohen, CA., Pushkar-Gold, D., Shulman, KJ, & Zucchero, CA. (1994). Positive aspects in caregiving: An overlooked variable in research. Canadian Journal of Aging, 13(3), 378-391.
- Collins, CE, Given, B.A, & Given, CW. (1994). Interventions with family caregivers of person's with Alzheimer's disease. Nursing Clinics of North America, 29(1), 195-207.
- Coyne, A.C. (1991). Information and referral service usage among caregivers for dementia patients. The Gerontologist, 31, 384-388.
- George, L.K.. (1994). Caregiver burden and well-being: An elusive distinction. The Gerontologist , 34, 6-7.
- George, L.K, & Gwyther, L.P. (1986). Caregiver well-being: A multidimensional examination of family caregivers of demented adults. The Gerontologist, 26, 253-259.
- Grant, G, & Nolan, N.R. (1993). Informal carers: Sources and concomitants of satisfaction. Health and Social Care in the Community, 1(4), 147-159.
- Greene, J.G, Smith, R, Gardiner, M., & Timbury, GC. (1982). Measuring behavioral disturbance of elderly demented patients in die community and its effects on relatives: A factor analytic study. Age and Aging ,11, 121-126.
- Harris, PB. (1993). The misunderstood caregiver? A qualitative study of die male caregiver of Alzheimer's disease victims. The Gerontologist, 33, 551-556.
- Harvath, T. A. (1994). Interpretation and management of dementia-related behavior problems. Clinical Nursing Research, 3, 7-26.
- Keady, J-, & Nolan, M.R. (1995). A stitch in time: Facilitating proactive interventions with dementia caregivers. The role of community practitioners. Journal of Psychiatric and Mental Health Nursing, 2(1), 33-40.
- Kinney, J.M, & Stephens, M.A.P. (1989). Hassles and uplifts of giving care to a family member with dementia. Psychology and Aging, 4, 402-408.
- Kobayashi [Suwa], S, Masaki, H, & Noguchi, M. (1993). Developmental process: Family caregivers of demented Japanese. Journal of Gerontological Nursing, 19(10), 7-12.
- Lawton, M. P., Kleban, M.H., Moss, M, Rovine, M., & Glicksman, A. (1989). Measuring caregiver appraisal. Journal of Gerontology, 44, 61-71.
- Montgomery, RJ. V, Gonyea, J.G., & Hooyman, N.R. (1985). Caregiving and experience of subjective and objective burden. Family ReUtions, 34(1), 19-26.
- Morris, RG, Woods, RT, Davies, K.S, & Morris, L. W (1991). Gender differences in carers of dementia sufferers. British Journal Psychiatry, 158, 69-74.
- Motenko, A.K. (1989). The frustrations, gratifications and well-being of dementia caregivers. The Gerontologist, 29, 166-172.
- Pearlin, L.I, Mullan, JT, Semple, SJ, & Scafi, M.M. (1990). Caregiving and the stress process: An overview of concepts and their measures. The Gerontologist, 30, 583-594.
- Penning, MJ. (1995). Cognitive impairment, caregiver burden and the utilization of home healdi services. Journal of Aging and Health, 7(2), 233-253.
- Poulshock, S.W., & Deimling, GT. (1984). Families caregivers for elders in residence: Issues in the measurement of burden. Journal of Gerontology, 39, 230-239.
- Rabins, D, Mace, N, & Lucas, M. (1982). The impact of dementia on the family. Journal of The American Medical Association, 248, 333-335.
- Robinson, B.C. (1983). Validation of a caregiver strain index. Journal of Gerontology, 38, 344-348.
- Teri, L, & Logsdon, R.G. (1991). Identifying pleasant activities for Alzheimer's disease patients: The pleasant events schedule-AD. The Gerontologist, 31, 124-127.
- Vitaliano, P.P., Russo, J, Young, H.M, Becker, J, & Maiuro, R.D. (1991). The screen for caregiver burden. The Gerontologist, 31, 76-87.
- Willoughby, J., & Keating, N. (1991). Being in control: The process of caring for a relative with Alzheimer's disease. Qualitative Health Research, 1(1), 27-50.
- Wuest, J, Ericson, PK, & Stern, PN. (1994). Becoming strangers: The changing family caregiving relationship in Alzheimer's disease. Journal of Advanced Nursing, 20(3), 437-443.
- Zarit, SJt, Reever, KE, & Bach-Peterson, J. (1980). Relatives of die impaired elderly: Correlates of feeling of burden. The Gerontologist, 20, 649-655.
THE DEVELOPMENTAL PROCESS OF CARECIViNC
DEMOGRAPHIC DATA OF THE SUBJECTS AND ELDERLY DEMENTIA PATIENTS
ROTATED FACTOR LOADINGS OF CAREGIVER'S EXPERIENCE WITH ELDERLY DEMENTIA PATIENT (VARIMAX METHOD)