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PSYCHOGERIATRICS 2015; 15: 26–31
doi:10.1111/psyg.12074
ORIGINAL ARTICLE
Positive appraisal of in-home family caregivers of dementia patients as an influence on the continuation of caregiving Kohei KAJIWARA,1 Hisae NAKATANI,2 Mitsu ONO1 and Yukiko MIYAKOSHI2
1
Department of Health Sciences, Graduate School of Medical Science, Kyushu University, Fukuoka and 2 Division of Nursing Science, Graduate School of Biomedical and Health Sciences, Hiroshima University, Hiroshima, Japan Correspondence: Mr Kohei Kajiwara PhD, Kyushu University Department of Health Sciences, Graduate School of Medical Science, 3-1-1 Maidashi Higashi-ku, Fukuoka 812-8582, Japan. Email: [email protected] Received 27 July 2012; revision received 25 August 2014; accepted 28 August 2014.
Key words: continuation of caregiving, dementia, family caregiver, positive appraisal.
Abstract Background: We attempted to determine the factors that influence the continuation of in-home caregiving for patients with dementia. Methods: The participants were family caregivers of dementia patients who received home care services. Data were collected via a questionnaire completed by caregivers and then returned in the mail. Of the 705 caregivers who received the questionnaire, 405 completed and returned it (response rate: 57.4%). Results: The average age of the caregivers was 63.9 1 11.5 years, and they had been providing care for an average of 5.1 1 4.1 years. The average age of the patients was 84.7 1 7.4 years. We analyzed the path model. Caregivers’ current feelings about continuing caregiving were directly affected by a positive appraisal of caregiving (β = 0.20, P < 0.001) and by the burden they experienced (β = −0.39, P < 0.001). The continuation of caregiving of patients with worsening symptoms was directly affected by a positive appraisal of caregiving (β = 0.15, P < 0.01) and by the burden experienced by the caregivers (β = −0.46, P < 0.001). The continuation of caregiving was indirectly affected by the patients’ cognitive impairment and by the behavioral and psychological symptoms of dementia score. Conclusions: The continuation of in-home caregiving among caregivers of patients with dementia was affected by both positive appraisal and caregiver burden. In addition, the present study revealed that behavioral and psychological symptoms of dementia score indirectly affects the continuation of caregiving by directly affecting caregiver burden.
INTRODUCTION Currently, it is estimated that 24.3 million people over the age of 60 suffer from dementia worldwide (prevalence: 3.9%).1 This number is expected to rise to 81.1 million by 2040. In Japan, in-home caregiving services have been supplemented since 2000 by the nursing care insurance system, but this system still does not fully cover the cost of in-home care, forcing most family caregivers to bear a significant burden in the home care setting. Caregivers of patients with dementia have an especially difficult caregiver burden. For example, increased behavioural and psychological symptoms of dementia (BPSD) scores reflect a greater caregiver burden for in-home caregivers of patients with dementia.2 26
Most studies of caregivers of dementia patients have focused on the negative aspects of caregiving. These studies have revealed the concept of caregiver burden.3,4 Caregiver burden has been used as an outcome in intervention studies.5 In the USA, the National Institute on Nursing Research and the National Institute on Aging established the Resources for Enhancing Alzheimer’s Caregiver Health project in 1995.6 The Resources for Enhancing Alzheimer’s Caregiver Health project revealed both positive and negative aspects of caregiving and underscored the importance of using evaluations and a positive appraisal scale as outcomes of studies.7,8 Studies of the positive appraisal of caregiving have been performed in Japan,9,10 and one study reported an © 2014 The Authors Psychogeriatrics © 2014 Japanese Psychogeriatric Society
Continuation of caregiving
Cognitive impairment
Positive appraisal Continuation of caregiving
Figure 1 Conceptual model. BPSD, behavioural and psychological symptoms of dementia.
BPSD
association between the positive appraisal of caregiving and the continuation of caregiving.11 Studies of caregivers of dementia patients need to evaluate not only the caregiver burden but also the positive appraisal of caregiving in home care. However, few studies in Japan have been designed from the perspectives of both positive appraisal and caregiver burden. The continuation of caregiving in Japan is used as an outcome measure of home care.12 The impact of the caregiver’s intention and outlook is major in Japan, but the factors that affect the continuation of caregiving have been unclear. Theoretical models are useful in designing effective interventions that address the complex process of caregiving within a specific culture.13 The present study attempted to identify factors that influence the continuation of caregiving by caregivers of dementia patients. The major results of previous studies were associated with positive appraisal and the continuation of caregiving.11,14 Particularly in light of the continuing growth of the number of people affected by dementia worldwide, it is vital to fully understand the factors that affect the continuation of caregiving among home caregivers of dementia patients. Lawton et al. stated that subjective appraisals should be evaluated from both positive and negative aspects.15 Therefore, both positive appraisal of caregiving and caregiver burden are thought to significantly affect the continuation of caregiving at home by caregivers of dementia patients. The BPSD of patients with dementia have been reported to be related to caregiver burden,2 and cognitive impairment is thought to be related to BPSD. Yamamoto and Wallhagen reported that it is necessary both to learn about caregivers’ experiences because they affect the caregiving experience and to determine why they continue to be caregivers in order to understand the overall process of caregiving.12 We hypothesize that the conceptual model based on the results of previous research shows the likely relationships among factors that affect the continuation of caregiving among © 2014 The Authors Psychogeriatrics © 2014 Japanese Psychogeriatric Society
Caregiver burden
in-home caregivers (Figure 1).
of
patients
with
dementia
METHODS Participants The participants were in-home family caregivers of dementia patients whose support was supplemented by assistance from caregiving facilities in three regions of Japan. The severity of dementia in their patients was based on the patients’ responses to the Short-Memory Questionnaire (SMQ).16 All participants voluntarily participated in the study. Procedure Between March 2010 and November 2011, questionnaires were distributed to 705 caregivers through caregiving facilities. The caregivers answered the questionnaire anonymously at home and mailed their responses to us. During the study period, 405 questionnaires were completed and returned (response rate: 57.4%). Of those, 354 of the responses were deemed valid (response rate: 87.4%). We also analyzed 343 cases of dementia. The present study was approved by the Ethics Committee of the Hiroshima University Graduate School of Health Sciences. Informed consent was obtained from all of the participants. Measurements Caregiver variables The five caregiver variables were age, gender, years of caregiving, hours per day spent on caregiving, and whether the caregiver lived with the patient. We used the Caregiving Gratification Scale to measure caregivers’ positive appraisal of their caregiving.17 The scale consists of eight items, each with a 4-point Likert scale, and possible total scores range from 0 to 24 points. The reliability and validity of the Caregiving Gratification Scale have been verified in Japan.17,18 Caregiver burden was assessed using a shortened form of the Japanese version of the Zarit Caregiver 27
K. Kajiwara et al.
Burden Interview scale (J-ZBI_8).19 The J-ZBI_8 consists of the same eight items, each with a 5-point Likert scale, and possible total scores range from 0 to 32 points. The reliability and validity of the J-ZBI_8 have been verified in Japan.19 Continuation of caregiving at home used the subjective feelings of the caregiver with regard to the current caregiving situation and the patient’s worsening symptoms. Additionally, caregivers were asked about the continuation of caregiving: ‘Do you want to continue caregiving?’; responses were on a 5-point Likert scale.20 Patient variables The four patient variables that we examined were age, gender, diagnosis of dementia, and activities of daily living score. The patients’ cognitive impairment was assessed using the 14-item SMQ.16 The SMQ was developed to evaluate the degree of cognitive impairment affecting patients’ everyday lives. The total score ranges from 4 to 46 points; a score of less than 40 suggests dementia. The patients’ BPSD were assessed using the Neuropsychiatric Inventory Brief Questionnaire Form (NPI-Q),21 Japanese version.22 The NPI-Q10 is composed of 10 items covering the presence and severity of psychiatric symptoms in elderly individuals with dementia (three levels, 1 to 3) as measured by caregivers. The total score ranges from 0 to 30 points. The reliability and validity of NPI-Q10 have been verified.22 Statistical analyses We first examined the descriptive statistics for the major variables. Next, Spearman’s rank correlation coefficients were calculated across all variables for the factors affecting the continuation of caregiving based on the framework concept. Finally, the path model was evaluated for continuation of caregiving, and the variables of the significant correlations were found to have P-values that were not significant by the χ2 test. The goodness of fit index (GFI) was 0.9, and the goodness of fit was judged to be below the 0.08 higher root mean square error of approximation. An α level of 0.05 was selected for all analyses. Data were analyzed using SPSS ver. 17 (IBM, Armonk, NY, USA) and AMOS ver. 19 (IBM).
RESULTS The demographic variables of the caregivers and patients are given in Table 1. The caregivers were 28
Table 1 Demographic characteristics of caregivers and patients n (%) Caregivers Gender Male Female Relationship to the patient Daughter Spouse Daughter-in-law Son Other Age (years: 29–92) Caregiving years (0.1–26.0) Caregiving hours per day (1–24) Present feelings about the continuation of caregiving (0–4) Continuation of caregiving for patients with worsening symptoms (0–4) J-ZBI_8 (0–32) Caregiving Gratification Scale (0–24) Patients Gender Male Female Diagnosis Not clear Alzheimer’s Vascular dementia Dementia with Lewy bodies Frontotemporal dementia Other Age (63–105) ADL score (1–4) SMQ score (4–39) NPI-Q score (0–30)
Mean
SD
63.9 5.1 12.4 2.7
11.5 4.1 7.7 1.1
1.8
1.3
12.9 13.6
7.9 5.8
84.7 2.6 13.8 5.5
7.4 0.8 9.3 5.2
72 (21.0) 271 (79.0) 107 (31.2) 94 (27.4) 79 (23.0) 45 (13.1) 18 (5.3)
114 (33.2) 229 (66.8) 204 (59.5) 69 (20.1) 44 (12.8) 7 (2.0) 2 (0.6) 17 (5.0)
ADL, activities of daily living; J-ZBI_8, shortened version of the Zarit Caregivers Burden Interview scale, Japanese version; NPI-Q, Neuropsychiatric Inventory Brief Questionnaire Form; SMQ, Short-Memory Questionnaire.
predominately women (n = 271; 79.0%). The average age of the caregivers was 63.9 1 11.5 years, and they had been providing care for an average of 5.1 1 4.1 years. The average age of the patients with dementia was 84.7 1 7.4 years. Sixty-nine patients (20.1%) were diagnosed with Alzheimer’s disease, 44 (12.8%) were diagnosed with vascular dementia, and 204 (59.5%) had no definite diagnosis. Spearman’s rank correlation coefficients were calculated across all variables to determine the relationships between the Caregiving Gratification Scale, the J-ZBI_8, the continuation of caregiving, caregiver age, caregiving years, caregiving time, SMQ score, and NPI-Q score. Significant correlations were found between the continuation of caregiving and the © 2014 The Authors Psychogeriatrics © 2014 Japanese Psychogeriatric Society
Continuation of caregiving
Caregiving Gratification Scale, the continuation of caregiving and the J-ZBI_8, the continuation of caregiving and the NPI-Q, and the SMQ and NPI-Q (Table 2). According to the path model (χ2 = 8.129, P = 0.149, GFI = 0.991, adjusted GFI = 0.972, root mean square error of approximation = 0.043, Akaike’s information criterion = 28.129), the caregiver’s current feelings about continuing caregiving were directly affected by positive appraisal of caregiving and by the burden experienced by the caregiver (Fig. 2). The continuation of caregiving was indirectly affected by the patients’ cognitive impairment and BPSD scores (Fig. 2). All path coefficients (β) showed significant values. According to the path model (χ2 = 7.175, P = 0.208, GFI = 0.992, adjusted GFI = 0.975, root mean square error of approximation = 0.036, Akaike’s information criterion = 27.175), the continuation of caregiving of patients with worsening symptoms showed findings similar to continuation of caregiving based on a caregiver’s current feelings (Fig. 3).
DISCUSSION The present study revealed that the positive appraisal of caregiving and caregiver burden directly affected Table 2 Spearman’s rank correlation coefficients among the Caregiving Gratification Scale, the J-ZBI_8, and caregiver and patient variables
Caregiving Gratification Scale J-ZBI_8 SMQ NPI-Q score Caregiver age Caregiving years Caregiving hours per day Present feelings about the continuation of caregiving Continuation of caregiving for patients with worsening symptoms J-ZBI_8 SMQ NPI-Q score Caregiver age Caregiving years Caregiving hours per day Present feelings about the continuation of caregiving Continuation of caregiving for patients with worsening symptoms
r
P-value
−0.199 −0.095 −0.048 0.164 0.062 0.086 0.295
**
0.238
**
−0.189 0.481 −0.120 0.111 0.087 −0.442
** **
−0.446
**
**
**
**
*P < 0.05 (two-tailed); **P < 0.01 (two-tailed). J-ZBI_8, shortened version of the Zarit Caregivers Burden Interview scale, Japanese version; NPI-Q, Neuropsychiatric Inventory Brief Questionnaire Form; SMQ, Short-Memory Questionnaire.
© 2014 The Authors Psychogeriatrics © 2014 Japanese Psychogeriatric Society
the caregiver’s present feelings about the continuation of caregiving and caregiving for patients with worsening symptoms. In addition, caregiver burden in relation to BPSD score indirectly affected the caregiver’s present feelings about the continuation of caregiving and caregiving for patients with worsening symptoms. The present results indicate that positive appraisal improves the likelihood of the continuation of caregiving and that the caregiver burden decreases the likelihood of the continuation of caregiving. We also found that lower cognitive impairment in the patient increased the BPSD score and that an increased BPSD score increased the caregiver burden. In the continuation of caregiving for patients with worsening symptoms, the effect of positive appraisal was reduced and the effect of caregiver burden was increased. Yamamoto et al. separately examined the relationships between male patients and both their wife and daughter-in-law, and found that each of these relationships affected the continuation of caregiving depending on positive appraisal.14 Kajiwara and Yokoyama reported that satisfaction among caregivers of dementia patients significantly affected the continuation of caregiving.11 However, the influences of positive appraisal and caregiver burden on the continuation of caregiving were not examined in that study, and other relevant studies in Japan have focused solely on caregiver burden and how to concretely support caregivers.23 There has been little research on how positive appraisal and caregiver burden relates to the continuation of caregiving. Regarding the care of dementia patients at home, the present study revealed that positive appraisal is clearly an important focus in assessing the situation of caregivers of patients with dementia. The BPSD score in elderly individuals with dementia indirectly affects the continuation of caregiving by affecting the caregiver burden. Sugiura et al. tried to develop a caregiver burden scale derived from the BPSD scale, and they reported that caregiver burden was affected by patients’ agitation and delusional behaviour.24 Huang et al. reported that the BPSD score was associated with caregiver burden. 2 The results of the present study thus support these previous studies. The BPSD score does not greatly affect the continuation of caregiving directly; rather, it indirectly affects the continuation of caregiving by affecting the caregiver burden. The BPSD scale is important 29
K. Kajiwara et al.
Positive appraisal
Cognitive impairment
−0.37***
−0.18***
BPSD
0.20***
Continuation of caregiving
Caregiver burden −0.39*** 0.45*** χ2=8.129，GFI=0.991，AGFI=0.972，RMSEA=0.043，AIC=28.129
Figure 2 Path model with the caregiver’s present feelings about the continuation of caregiving. *P < 0.05; **P < 0.01; ***P < 0.001 (all two-tailed). Cognitive impairment was measured by the Short-Memory Questionnaire; BPSD by the Neuropsychiatric Inventory Brief Questionnaire Form; positive appraisal by the Caregiving Gratification Scale; and caregiver burden by the shortened version of the Zarit Caregivers Burden Interview scale, Japanese version. AGFI, adjusted goodness of fit; AIC , Akaike’s information criterion; BPSD, behavioural and psychological symptoms of dementia; GFI, goodness of fit; RMSEA, root mean square error of approximation. [Correction added on 4 February 2015, after first online publication: Figure 2 was replaced to correct asterisk marks.] Positive appraisal
Cognitive impairment
–0.37***
–0.18***
BPSD
Caregiver burden
0.15**
Continuation of caregiving
–0.46***
0.45*** χ2=7.175, GFI=0.992, AGFI=0.975, RMSEA=0.036, AIC=27.175
Figure 3 Path model with continuation of caregiving for patients with worsening symptoms. *P < 0.05; **P < 0.01; ***P < 0.001 (all two-tailed). Cognitive impairment was measured by the Short-Memory Questionnaire; BPSD by the Neuropsychiatric Inventory Brief Questionnaire Form; positive appraisal by the Caregiving Gratification Scale; and caregiver burden by the shortened version of the Zarit Caregivers Burden Interview scale, Japanese version. AGFI, adjusted goodness of fit; AIC , Akaike’s information criterion; BPSD, behavioural and psychological symptoms of dementia; GFI, goodness of fit; RMSEA, root mean square error of approximation. [Correction added on 4 February 2015, after first online publication: Figure 3 was replaced to correct asterisk marks.]
to our understanding of the situation of in-home caregivers. In addition, an exact assessment with the BPSD in patients with dementia may be necessary to determine how the caregiver should be supported. Our finding that subjective appraisals by caregivers were more predictive of continuation of caregiving than patient variables carries important implications for the future development of effective caregiver interventions. Objective aspects of dementia and/or patient variables are difficult to improve.25 Subjective appraisals by caregivers are reversible determinants of continuation of caregiving. Therefore, caregivers may benefit from interventions focused on improving the rate of positive appraisals, and information on positive appraisals will ultimately be able to help caregivers. Specifically, we suppose that in-home medical professionals can put positive appraisals to practical use to develop educational interventions and community support. 30
The present study has limitations that are important to acknowledge. It has a cross-sectional design, and data regarding caregiver states and patient states were obtained at one point only. Therefore, the demographics of the caregivers and dementia patients in the present study do not represent typical features of dementia in Japan. A longitudinal study is needed to address the associations among positive appraisal, caregiver burden, and the intention to continue caregiving. The continuation of in-home caregiving among caregivers of dementia patients was affected by both positive appraisal and caregiver burden. In addition, the present study revealed that BPSD score indirectly affects the continuation of caregiving by directly affecting caregiver burden. The subjective appraisals by caregivers are powerful contributors and add to our understanding of caregiving. Caregiving service providers should develop interventions aimed at © 2014 The Authors Psychogeriatrics © 2014 Japanese Psychogeriatric Society
Continuation of caregiving
improving positive appraisals. Additional research is required to consider such interventions and their clinical adaptions.
REFERENCES 1 Cien LY, Chu H, Guo JL et al. Caregiver support groups in patients with dementia: a meta-analysis. Int J Geriatr Psychiatry 2011; 26: 1089–1098. 2 Huang SS, Lee MC, Liao YC et al. Caregiver burden associated with behavioral and psychological symptoms of dementia (BPSD) in Taiwanese elderly. Arch Gerontol Geriatr 2012; 55: 55–59. doi:10.1016/j.archger.2011.04.009. 3 Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: correlates of the feeling of burden. Gerontologist 1980; 20: 649–655. 4 Baumgarten M, Becker R, Gauthier S. Validity and reliability of dementia behavior disturbance scale. J Am Geriatr Soc 1990; 38: 221–226. 5 Nichols LO, Martindale-Adams J, Burns R et al. Translation of a dementia caregiver support program in a health care system— REACH VA. Arch Intern Med 2011; 171: 353–359. 6 Schulz R, Belle SH, Czaja SJ et al. Introduction to the special section on resources for enhancing Alzheimer’s caregiver health (REACH). Psychol Aging 2003; 18: 357–360. 7 Tarlow B, Wisniewski SR, Belle SH et al. Positive aspects of caregiving. Res Aging 2004; 26: 429–453. 8 Hilgeman MM, Allen RS, DeCoster J et al. Positive aspects of caregiving as a moderator of treatment outcome over 12 months. Psychol Aging 2007; 22: 361–371. 9 Sakurai N. The moderating effects of positive appraisal on the burden of family caregivers of older people. Shinrigaku Kenkyu 1999; 70: 203–210 (in Japanese with an English abstract). 10 Yamamoto-Mitani N, Ishigaki K, Kawahara-Maekawa N et al. Factors of positive appraisal of care among Japanese family caregivers of older adults. Res Nurs Health 2003; 26: 337–350. 11 Kajiwara K, Yokoyama M. A study on the factors of care continuity intention of family caregivers for the elderly with dementia. J Jpn Soc Dement Care 2007; 6: 38–46 (in Japanese with an English abstract). 12 Yamamoto N, Wallhagen M. The continuation of family caregiving in Japan. J Health Soc Behav 1997; 38: 164–176. 13 Liu Y, Insel KC, Reed PG et al. Family caregiving of older Chinese people with dementia. Nurs Res 2012; 61: 39–50.
© 2014 The Authors Psychogeriatrics © 2014 Japanese Psychogeriatric Society
14 Yamamoto-Mitani N, Ishigaki K, Kuniyoshi M et al. Impact of the positive appraisal of care on quality of life, purpose of life, and will to continue care among Japanese family caregivers of older adults: analysis by kinship type. Nihon Koshu Eisei Zasshi 2002; 49: 660–671 (in Japanese with an English abstract). 15 Lawton MP, Kleban MH, Moss M. Measuring caregiving appraisal. J Gerontol 1989; 44: 61–71. 16 Maki N, Ikeda M, Hokoishi K et al. The validity of the MMSE and SMQ as screening tests for dementia in the elderly general population—a study of one rural community in Japan. Dement Geriatr Cogn Disord 2000; 11: 193–196. 17 Nishimura M, Suda R, Campbell R et al. Scale Development of Caregiving Gratification Scale – positive appraisal assessment in family caregivers care experience. Kouseino Shihyo 2005; 52: 8–13 (in Japanese). 18 Kajiwara K, Ono M. A study on positive appraisal and characteristics of caregivers of elderly with dementia. J Jpn Soc Dement Care 2012; 11: 487–495 (in Japanese with an English abstract). 19 Kumamoto K, Arai Y. Validation of ‘personal strain’ and ‘role strain’: subscales of the short version of the Japanese version of the Zarit Burden Interview (J-ZBI_8). Psychiatry Clin Neurosci 2004; 58: 606–610. 20 Saito E, Kunisaki C, Kanagawa K. Positive perceptions encouraging continued caregiving at home among family caregivers. Nihon Koshu Eisei Zasshi 2001; 48: 180–189 (in Japanese with an English abstract). 21 Kaufer DI, Cummings JL, Ketchel P. Validation of the NPI-Q, a brief clinical form of the Neuropsychiatric Inventory. J Neuropsychiatry Clin Neurosci 2000; 12: 233–239. 22 Matsumoto N, Ikeda M, Fukuhara R et al. Validity and reliability of the Japanese version of the Neuropsychiatric Inventory Caregiver Distress Scale (NPI-D) and the Neuropsychiatric Inventory Brief Questionnaire form (NPI-Q). No To Shinkei 2006; 58: 785– 790 (in Japanese with an English abstract). 23 Mizuno E, Hosaka T, Ogihara R et al. Effectiveness of stress management program for family caregivers. Jap J Stress Sci 1999; 14: 191–199 (in Japanese with an English abstract). 24 Sugiura K, Ito M, Mikami I. Family caregiver burden caused by behavioral and psychological symptoms of dementia: measurement with a new original scale. Nihon Ronen Igakkai Zasshi 2007; 44: 717–725 (in Japanese with an English abstract). 25 Takai M, Takahashi M, Iwamitsu Y et al. Subjective experiences of family caregivers of patients with dementia as predictive factors of quality of life. Psychogeriatrics 2011; 11: 98–104.
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PSYCHOGERIATRICS 2015; 15: 26–31
doi:10.1111/psyg.12074
ORIGINAL ARTICLE
Positive appraisal of in-home family caregivers of dementia patients as an influence on the continuation of caregiving Kohei KAJIWARA,1 Hisae NAKATANI,2 Mitsu ONO1 and Yukiko MIYAKOSHI2
1
Department of Health Sciences, Graduate School of Medical Science, Kyushu University, Fukuoka and 2 Division of Nursing Science, Graduate School of Biomedical and Health Sciences, Hiroshima University, Hiroshima, Japan Correspondence: Mr Kohei Kajiwara PhD, Kyushu University Department of Health Sciences, Graduate School of Medical Science, 3-1-1 Maidashi Higashi-ku, Fukuoka 812-8582, Japan. Email: [email protected] Received 27 July 2012; revision received 25 August 2014; accepted 28 August 2014.
Key words: continuation of caregiving, dementia, family caregiver, positive appraisal.
Abstract Background: We attempted to determine the factors that influence the continuation of in-home caregiving for patients with dementia. Methods: The participants were family caregivers of dementia patients who received home care services. Data were collected via a questionnaire completed by caregivers and then returned in the mail. Of the 705 caregivers who received the questionnaire, 405 completed and returned it (response rate: 57.4%). Results: The average age of the caregivers was 63.9 1 11.5 years, and they had been providing care for an average of 5.1 1 4.1 years. The average age of the patients was 84.7 1 7.4 years. We analyzed the path model. Caregivers’ current feelings about continuing caregiving were directly affected by a positive appraisal of caregiving (β = 0.20, P < 0.001) and by the burden they experienced (β = −0.39, P < 0.001). The continuation of caregiving of patients with worsening symptoms was directly affected by a positive appraisal of caregiving (β = 0.15, P < 0.01) and by the burden experienced by the caregivers (β = −0.46, P < 0.001). The continuation of caregiving was indirectly affected by the patients’ cognitive impairment and by the behavioral and psychological symptoms of dementia score. Conclusions: The continuation of in-home caregiving among caregivers of patients with dementia was affected by both positive appraisal and caregiver burden. In addition, the present study revealed that behavioral and psychological symptoms of dementia score indirectly affects the continuation of caregiving by directly affecting caregiver burden.
INTRODUCTION Currently, it is estimated that 24.3 million people over the age of 60 suffer from dementia worldwide (prevalence: 3.9%).1 This number is expected to rise to 81.1 million by 2040. In Japan, in-home caregiving services have been supplemented since 2000 by the nursing care insurance system, but this system still does not fully cover the cost of in-home care, forcing most family caregivers to bear a significant burden in the home care setting. Caregivers of patients with dementia have an especially difficult caregiver burden. For example, increased behavioural and psychological symptoms of dementia (BPSD) scores reflect a greater caregiver burden for in-home caregivers of patients with dementia.2 26
Most studies of caregivers of dementia patients have focused on the negative aspects of caregiving. These studies have revealed the concept of caregiver burden.3,4 Caregiver burden has been used as an outcome in intervention studies.5 In the USA, the National Institute on Nursing Research and the National Institute on Aging established the Resources for Enhancing Alzheimer’s Caregiver Health project in 1995.6 The Resources for Enhancing Alzheimer’s Caregiver Health project revealed both positive and negative aspects of caregiving and underscored the importance of using evaluations and a positive appraisal scale as outcomes of studies.7,8 Studies of the positive appraisal of caregiving have been performed in Japan,9,10 and one study reported an © 2014 The Authors Psychogeriatrics © 2014 Japanese Psychogeriatric Society
Continuation of caregiving
Cognitive impairment
Positive appraisal Continuation of caregiving
Figure 1 Conceptual model. BPSD, behavioural and psychological symptoms of dementia.
BPSD
association between the positive appraisal of caregiving and the continuation of caregiving.11 Studies of caregivers of dementia patients need to evaluate not only the caregiver burden but also the positive appraisal of caregiving in home care. However, few studies in Japan have been designed from the perspectives of both positive appraisal and caregiver burden. The continuation of caregiving in Japan is used as an outcome measure of home care.12 The impact of the caregiver’s intention and outlook is major in Japan, but the factors that affect the continuation of caregiving have been unclear. Theoretical models are useful in designing effective interventions that address the complex process of caregiving within a specific culture.13 The present study attempted to identify factors that influence the continuation of caregiving by caregivers of dementia patients. The major results of previous studies were associated with positive appraisal and the continuation of caregiving.11,14 Particularly in light of the continuing growth of the number of people affected by dementia worldwide, it is vital to fully understand the factors that affect the continuation of caregiving among home caregivers of dementia patients. Lawton et al. stated that subjective appraisals should be evaluated from both positive and negative aspects.15 Therefore, both positive appraisal of caregiving and caregiver burden are thought to significantly affect the continuation of caregiving at home by caregivers of dementia patients. The BPSD of patients with dementia have been reported to be related to caregiver burden,2 and cognitive impairment is thought to be related to BPSD. Yamamoto and Wallhagen reported that it is necessary both to learn about caregivers’ experiences because they affect the caregiving experience and to determine why they continue to be caregivers in order to understand the overall process of caregiving.12 We hypothesize that the conceptual model based on the results of previous research shows the likely relationships among factors that affect the continuation of caregiving among © 2014 The Authors Psychogeriatrics © 2014 Japanese Psychogeriatric Society
Caregiver burden
in-home caregivers (Figure 1).
of
patients
with
dementia
METHODS Participants The participants were in-home family caregivers of dementia patients whose support was supplemented by assistance from caregiving facilities in three regions of Japan. The severity of dementia in their patients was based on the patients’ responses to the Short-Memory Questionnaire (SMQ).16 All participants voluntarily participated in the study. Procedure Between March 2010 and November 2011, questionnaires were distributed to 705 caregivers through caregiving facilities. The caregivers answered the questionnaire anonymously at home and mailed their responses to us. During the study period, 405 questionnaires were completed and returned (response rate: 57.4%). Of those, 354 of the responses were deemed valid (response rate: 87.4%). We also analyzed 343 cases of dementia. The present study was approved by the Ethics Committee of the Hiroshima University Graduate School of Health Sciences. Informed consent was obtained from all of the participants. Measurements Caregiver variables The five caregiver variables were age, gender, years of caregiving, hours per day spent on caregiving, and whether the caregiver lived with the patient. We used the Caregiving Gratification Scale to measure caregivers’ positive appraisal of their caregiving.17 The scale consists of eight items, each with a 4-point Likert scale, and possible total scores range from 0 to 24 points. The reliability and validity of the Caregiving Gratification Scale have been verified in Japan.17,18 Caregiver burden was assessed using a shortened form of the Japanese version of the Zarit Caregiver 27
K. Kajiwara et al.
Burden Interview scale (J-ZBI_8).19 The J-ZBI_8 consists of the same eight items, each with a 5-point Likert scale, and possible total scores range from 0 to 32 points. The reliability and validity of the J-ZBI_8 have been verified in Japan.19 Continuation of caregiving at home used the subjective feelings of the caregiver with regard to the current caregiving situation and the patient’s worsening symptoms. Additionally, caregivers were asked about the continuation of caregiving: ‘Do you want to continue caregiving?’; responses were on a 5-point Likert scale.20 Patient variables The four patient variables that we examined were age, gender, diagnosis of dementia, and activities of daily living score. The patients’ cognitive impairment was assessed using the 14-item SMQ.16 The SMQ was developed to evaluate the degree of cognitive impairment affecting patients’ everyday lives. The total score ranges from 4 to 46 points; a score of less than 40 suggests dementia. The patients’ BPSD were assessed using the Neuropsychiatric Inventory Brief Questionnaire Form (NPI-Q),21 Japanese version.22 The NPI-Q10 is composed of 10 items covering the presence and severity of psychiatric symptoms in elderly individuals with dementia (three levels, 1 to 3) as measured by caregivers. The total score ranges from 0 to 30 points. The reliability and validity of NPI-Q10 have been verified.22 Statistical analyses We first examined the descriptive statistics for the major variables. Next, Spearman’s rank correlation coefficients were calculated across all variables for the factors affecting the continuation of caregiving based on the framework concept. Finally, the path model was evaluated for continuation of caregiving, and the variables of the significant correlations were found to have P-values that were not significant by the χ2 test. The goodness of fit index (GFI) was 0.9, and the goodness of fit was judged to be below the 0.08 higher root mean square error of approximation. An α level of 0.05 was selected for all analyses. Data were analyzed using SPSS ver. 17 (IBM, Armonk, NY, USA) and AMOS ver. 19 (IBM).
RESULTS The demographic variables of the caregivers and patients are given in Table 1. The caregivers were 28
Table 1 Demographic characteristics of caregivers and patients n (%) Caregivers Gender Male Female Relationship to the patient Daughter Spouse Daughter-in-law Son Other Age (years: 29–92) Caregiving years (0.1–26.0) Caregiving hours per day (1–24) Present feelings about the continuation of caregiving (0–4) Continuation of caregiving for patients with worsening symptoms (0–4) J-ZBI_8 (0–32) Caregiving Gratification Scale (0–24) Patients Gender Male Female Diagnosis Not clear Alzheimer’s Vascular dementia Dementia with Lewy bodies Frontotemporal dementia Other Age (63–105) ADL score (1–4) SMQ score (4–39) NPI-Q score (0–30)
Mean
SD
63.9 5.1 12.4 2.7
11.5 4.1 7.7 1.1
1.8
1.3
12.9 13.6
7.9 5.8
84.7 2.6 13.8 5.5
7.4 0.8 9.3 5.2
72 (21.0) 271 (79.0) 107 (31.2) 94 (27.4) 79 (23.0) 45 (13.1) 18 (5.3)
114 (33.2) 229 (66.8) 204 (59.5) 69 (20.1) 44 (12.8) 7 (2.0) 2 (0.6) 17 (5.0)
ADL, activities of daily living; J-ZBI_8, shortened version of the Zarit Caregivers Burden Interview scale, Japanese version; NPI-Q, Neuropsychiatric Inventory Brief Questionnaire Form; SMQ, Short-Memory Questionnaire.
predominately women (n = 271; 79.0%). The average age of the caregivers was 63.9 1 11.5 years, and they had been providing care for an average of 5.1 1 4.1 years. The average age of the patients with dementia was 84.7 1 7.4 years. Sixty-nine patients (20.1%) were diagnosed with Alzheimer’s disease, 44 (12.8%) were diagnosed with vascular dementia, and 204 (59.5%) had no definite diagnosis. Spearman’s rank correlation coefficients were calculated across all variables to determine the relationships between the Caregiving Gratification Scale, the J-ZBI_8, the continuation of caregiving, caregiver age, caregiving years, caregiving time, SMQ score, and NPI-Q score. Significant correlations were found between the continuation of caregiving and the © 2014 The Authors Psychogeriatrics © 2014 Japanese Psychogeriatric Society
Continuation of caregiving
Caregiving Gratification Scale, the continuation of caregiving and the J-ZBI_8, the continuation of caregiving and the NPI-Q, and the SMQ and NPI-Q (Table 2). According to the path model (χ2 = 8.129, P = 0.149, GFI = 0.991, adjusted GFI = 0.972, root mean square error of approximation = 0.043, Akaike’s information criterion = 28.129), the caregiver’s current feelings about continuing caregiving were directly affected by positive appraisal of caregiving and by the burden experienced by the caregiver (Fig. 2). The continuation of caregiving was indirectly affected by the patients’ cognitive impairment and BPSD scores (Fig. 2). All path coefficients (β) showed significant values. According to the path model (χ2 = 7.175, P = 0.208, GFI = 0.992, adjusted GFI = 0.975, root mean square error of approximation = 0.036, Akaike’s information criterion = 27.175), the continuation of caregiving of patients with worsening symptoms showed findings similar to continuation of caregiving based on a caregiver’s current feelings (Fig. 3).
DISCUSSION The present study revealed that the positive appraisal of caregiving and caregiver burden directly affected Table 2 Spearman’s rank correlation coefficients among the Caregiving Gratification Scale, the J-ZBI_8, and caregiver and patient variables
Caregiving Gratification Scale J-ZBI_8 SMQ NPI-Q score Caregiver age Caregiving years Caregiving hours per day Present feelings about the continuation of caregiving Continuation of caregiving for patients with worsening symptoms J-ZBI_8 SMQ NPI-Q score Caregiver age Caregiving years Caregiving hours per day Present feelings about the continuation of caregiving Continuation of caregiving for patients with worsening symptoms
r
P-value
−0.199 −0.095 −0.048 0.164 0.062 0.086 0.295
**
0.238
**
−0.189 0.481 −0.120 0.111 0.087 −0.442
** **
−0.446
**
**
**
**
*P < 0.05 (two-tailed); **P < 0.01 (two-tailed). J-ZBI_8, shortened version of the Zarit Caregivers Burden Interview scale, Japanese version; NPI-Q, Neuropsychiatric Inventory Brief Questionnaire Form; SMQ, Short-Memory Questionnaire.
© 2014 The Authors Psychogeriatrics © 2014 Japanese Psychogeriatric Society
the caregiver’s present feelings about the continuation of caregiving and caregiving for patients with worsening symptoms. In addition, caregiver burden in relation to BPSD score indirectly affected the caregiver’s present feelings about the continuation of caregiving and caregiving for patients with worsening symptoms. The present results indicate that positive appraisal improves the likelihood of the continuation of caregiving and that the caregiver burden decreases the likelihood of the continuation of caregiving. We also found that lower cognitive impairment in the patient increased the BPSD score and that an increased BPSD score increased the caregiver burden. In the continuation of caregiving for patients with worsening symptoms, the effect of positive appraisal was reduced and the effect of caregiver burden was increased. Yamamoto et al. separately examined the relationships between male patients and both their wife and daughter-in-law, and found that each of these relationships affected the continuation of caregiving depending on positive appraisal.14 Kajiwara and Yokoyama reported that satisfaction among caregivers of dementia patients significantly affected the continuation of caregiving.11 However, the influences of positive appraisal and caregiver burden on the continuation of caregiving were not examined in that study, and other relevant studies in Japan have focused solely on caregiver burden and how to concretely support caregivers.23 There has been little research on how positive appraisal and caregiver burden relates to the continuation of caregiving. Regarding the care of dementia patients at home, the present study revealed that positive appraisal is clearly an important focus in assessing the situation of caregivers of patients with dementia. The BPSD score in elderly individuals with dementia indirectly affects the continuation of caregiving by affecting the caregiver burden. Sugiura et al. tried to develop a caregiver burden scale derived from the BPSD scale, and they reported that caregiver burden was affected by patients’ agitation and delusional behaviour.24 Huang et al. reported that the BPSD score was associated with caregiver burden. 2 The results of the present study thus support these previous studies. The BPSD score does not greatly affect the continuation of caregiving directly; rather, it indirectly affects the continuation of caregiving by affecting the caregiver burden. The BPSD scale is important 29
K. Kajiwara et al.
Positive appraisal
Cognitive impairment
−0.37***
−0.18***
BPSD
0.20***
Continuation of caregiving
Caregiver burden −0.39*** 0.45*** χ2=8.129，GFI=0.991，AGFI=0.972，RMSEA=0.043，AIC=28.129
Figure 2 Path model with the caregiver’s present feelings about the continuation of caregiving. *P < 0.05; **P < 0.01; ***P < 0.001 (all two-tailed). Cognitive impairment was measured by the Short-Memory Questionnaire; BPSD by the Neuropsychiatric Inventory Brief Questionnaire Form; positive appraisal by the Caregiving Gratification Scale; and caregiver burden by the shortened version of the Zarit Caregivers Burden Interview scale, Japanese version. AGFI, adjusted goodness of fit; AIC , Akaike’s information criterion; BPSD, behavioural and psychological symptoms of dementia; GFI, goodness of fit; RMSEA, root mean square error of approximation. [Correction added on 4 February 2015, after first online publication: Figure 2 was replaced to correct asterisk marks.] Positive appraisal
Cognitive impairment
–0.37***
–0.18***
BPSD
Caregiver burden
0.15**
Continuation of caregiving
–0.46***
0.45*** χ2=7.175, GFI=0.992, AGFI=0.975, RMSEA=0.036, AIC=27.175
Figure 3 Path model with continuation of caregiving for patients with worsening symptoms. *P < 0.05; **P < 0.01; ***P < 0.001 (all two-tailed). Cognitive impairment was measured by the Short-Memory Questionnaire; BPSD by the Neuropsychiatric Inventory Brief Questionnaire Form; positive appraisal by the Caregiving Gratification Scale; and caregiver burden by the shortened version of the Zarit Caregivers Burden Interview scale, Japanese version. AGFI, adjusted goodness of fit; AIC , Akaike’s information criterion; BPSD, behavioural and psychological symptoms of dementia; GFI, goodness of fit; RMSEA, root mean square error of approximation. [Correction added on 4 February 2015, after first online publication: Figure 3 was replaced to correct asterisk marks.]
to our understanding of the situation of in-home caregivers. In addition, an exact assessment with the BPSD in patients with dementia may be necessary to determine how the caregiver should be supported. Our finding that subjective appraisals by caregivers were more predictive of continuation of caregiving than patient variables carries important implications for the future development of effective caregiver interventions. Objective aspects of dementia and/or patient variables are difficult to improve.25 Subjective appraisals by caregivers are reversible determinants of continuation of caregiving. Therefore, caregivers may benefit from interventions focused on improving the rate of positive appraisals, and information on positive appraisals will ultimately be able to help caregivers. Specifically, we suppose that in-home medical professionals can put positive appraisals to practical use to develop educational interventions and community support. 30
The present study has limitations that are important to acknowledge. It has a cross-sectional design, and data regarding caregiver states and patient states were obtained at one point only. Therefore, the demographics of the caregivers and dementia patients in the present study do not represent typical features of dementia in Japan. A longitudinal study is needed to address the associations among positive appraisal, caregiver burden, and the intention to continue caregiving. The continuation of in-home caregiving among caregivers of dementia patients was affected by both positive appraisal and caregiver burden. In addition, the present study revealed that BPSD score indirectly affects the continuation of caregiving by directly affecting caregiver burden. The subjective appraisals by caregivers are powerful contributors and add to our understanding of caregiving. Caregiving service providers should develop interventions aimed at © 2014 The Authors Psychogeriatrics © 2014 Japanese Psychogeriatric Society
Continuation of caregiving
improving positive appraisals. Additional research is required to consider such interventions and their clinical adaptions.
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