ORIGINAL ARTICLE
Family caregivers’ assessments of caring for a relative with dementia: a comparison of urban and rural areas Kethy Ehrlich
MScN, RN
PhD Student, Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institute, Huddinge, Sweden and Department of Geriatric Medicine, Danderyd Hospital, Stockholm, Sweden
Anne-Marie Bostr€ om
PhD, RN
Associate Professor, Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institute, Huddinge, Sweden and Department of Geriatric Medicine, Danderyd Hospital, Stockholm, Sweden
Monir Mazaheri
BScN, MScN, PhD, RN
Lecturer, School of Health, Care and Social Welfare, Division of Caring Sciences, M€ alardalen University, V€ aster as, Sweden
Kristiina Heikkil€ a
PhD
Senior Lecturer, Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institute, Huddinge, Sweden
Azita Emami
PhD, RN
Professor, Aging Research Center (ARC), Karolinska Institute, Stockholm, Sweden and Biobehavioral Nursing & Health Systems, School of Nursing, University of Washington, Seattle, WA, USA
Submitted for publication: 4 June 2013 Accepted for publication: 29 October 2013
Correspondence: Kethy Ehrlich 23300 Huddinge SE-141 83 Sweden Telephone: 0046 8 524 83907 E-mail: [email protected]
© 2014 John Wiley & Sons Ltd
¨ K. & EMAMI A. (2015) ¨ M A.-M., MAZAHERI M., HEIKKILA EHRLICH K., BOSTRO
Family caregivers’ assessments of caring for a relative with dementia: a comparison of urban and rural areas. International Journal of Older People Nursing 10, 27–37. doi: 10.1111/opn.12044 Aim. This study aimed to describe and compare urban and rural family caregivers’ reactions to caring for a relative with dementia and to examine the associations between caregiving and socio-demographic factors. Background. Most studies on family caregivers’ experiences caring for older people with dementia have been conducted in urban areas, and little is known about the experiences of family caregivers living in rural areas. Design. A cross-sectional study design was used. Methods. A total of 102 caregivers (response rate 85%) from urban (n = 57) and rural (n = 46) areas completed the Caregiver Reaction Assessment (CRA) Scale and demographic information. Data were analysed using descriptive and inferential statistics and linear regression models. Results. Overall, family caregivers reported high satisfaction even if they also reported high impact on finances and daily living. Rural caregivers experienced a higher negative impact on finances but reported more support from family members than urban caregivers. Age, gender and relationship were significantly associated with four of the five CRA subscales. Educational level and geographical setting were not associated with any of the CRA subscales. 27
K. Ehrlich et al.
Conclusions. The results of the study raise questions about the financial situation of older female caregivers and on the expectations of built-in family structures in urban and rural areas. Further studies focusing on the meaning and constitution of a family would help us to understand how these factors influence family caregiving both in rural and urban areas. Implications for practice. To provide person-centred care and to avoid stereotyped caregiving, a better picture of traditions in family caregiving can improve a more differentiated and appropriate professional caregiving pliable with the cultural context in which it is carried out. Key words: Caregiver Reaction Assessment Scale, dementia, family caregiver, regression model, rural and urban areas
What does this research add to existing knowledge in gerontology?
• • •
Both in urban and rural areas family caregivers were highly satisfied caring for relatives with dementia. Financial strain is a women’s issue rather than an issue of location or place of residence. The extent of family involvement in caregiving can reveal differences in the meaning and the demands of the family.
What are the implications of this new knowledge for nursing care with older people?
•
To provide person-centred care, different nursing interventions to support family involvement should be considered with regard to built-in family traditions.
How could the findings be used to influence policy or practice or research or education?
• •
Professional caregiver education needs to challenge the traditional view of the family and family caregiving to develop and implement adequate nursing interventions for each family. Policymakers should consider the requirement of various support strategies for family caregivers tailoring different needs among family caregivers.
Introduction Life in rural areas is different from urban areas with regard to age structure and geographical conditions. There are also differences in access to public transport, professional health 28
care and specialist treatment. This suggests that the conditions of family caregivers in urban and rural areas might also be different. National policymaking, planning and improvements in dementia care are usually based on the results of studies conducted in urban communities. There is a lack of knowledge regarding the rural population’s experiences of family caregiving and needs, which may result in inappropriate care provision for this particular group. Therefore, in this study, we have examined whether caregivers’ reactions in rural settings in any way differ from urban settings. Worldwide, older persons with dementia mostly live in their own homes, often with family support. The financial, social and therapeutic benefits of family care have been extensively documented, not only for the person with dementia but also for society as a whole (Schultz & Martire, 2004). Many cross-national studies show that caring for a person with dementia is stressful (Patterson et al., 1998; Murray et al., 1999; Etters et al., 2008). The burden of caring for such persons is even greater than for other chronic conditions (Ericson et al., 2001; De la Cuesta, 2005). The societal involvement differs throughout Europe and United States with high involvement in Scandinavia, the Netherlands and Switzerland and low involvement in southern and central Europe (Haberkern & Szydlik, 2010). Instead there are extended filial obligations where the family are legally obligated to support their frail older family member both socially and economically. However, among the general public, caregiving is perceived as a responsibility of the family even if caregiving predominantly is a female task (Haberkern & Szydlik, 2010). In Sweden, there are no statutory obligations for family members to provide care or financial support for older parents, partners or relatives (NBHW, 2007a). Instead the local municipalities are responsible for the welfare of older persons, and they are legally obliged to meet the social services and housing needs of this group, as well as relatives © 2014 John Wiley & Sons Ltd
Family Caregivers in Rural and Urban Areas
who care for persons with dementia. This support is for the most part financed through taxes (NBHW, 2013b). Municipal support is offered from each local community for persons with dementia and also to their family caregivers. Different forms of care are available, although access to municipal support can vary somewhat from area to area. However, the forms of the support tend to be rather similar throughout Sweden. Common types of support for older persons with dementia and their family caregivers are linked to education on dementia, meeting places for family caregivers, support from nurses trained in dementia care, dementia day care centres and short-term care (NBHW, 2009c). Despite the Swedish welfare system, the average amount of family care is estimated to be approximately 8.5 times more than professional care (Wimo et al., 2002). The largest group of caregivers consists of older female spouses. Adult children, especially daughters, are another large group (Wimo et al., 2002) although they were not especially willing to care for a parent with dementia (Jansson et al., 1997). Burden and strain seem to vary among different socio-economic groups. Low income together with a lower health profile has shown a negative impact on burden both internationally and in the Swedish context (Covinsky et al., 2003; Andren & Elmst ahl, 2007). Throughout the Western world, female family members caring for relatives tend to suffer from stress and exhaustion to a greater extent than male caregivers (Gottlieb & Gignac, 1996; Almberg et al., 1997; Patterson et al., 1998; Williamson & Schaffer, 2001) and are also at greater risk of depression (Beeson et al., 2000; Covinsky et al., 2003; Mahoney et al., 2005). Zwaanswij et al. (2013) show that family caregivers taking care of a person with dementia experienced problems in caring irrespective of the stage of the illness. Studies in other cultural contexts show that a strong focus on the family can both reduce (Knight et al., 2002) and increase (Youn et al., 1999) burden and depression especially combined with a low income (Kim & Lee, 2003). Caregiving for relatives with dementia can also be experienced as a threat against social dignity according to both social norms and expectations in the family and in the surrounding society (Mazaheri, 2013). Despite the physical and psychological pressures, family caregivers and especially spouses want their close relative to live at home for as long as possible (Almberg et al., 2000; NBWH, 2000d; Morgan et al., 2002), as caregiving also gives feelings of gain (Sanders, 2005) and an experience of fulfilment which raised self-esteem and satisfaction (Mazaheri et al., 2011). In a Swedish context, studies show that satisfaction and burden can coexist (Andren & Elmst ahl, 2005) and that burden and perceived health among family caregivers are shown to be dependent on coping capacity combined with a strong sense of coherence (Andren & Elmst ahl, 2007). © 2014 John Wiley & Sons Ltd
International studies show differences in attitudes to caregiving among family caregivers between diverse nationalities (Wallhagen & Yamamoto-Mitani, 2006; Mazaheri, 2013) and among ethnic minorities (Dilworth-Anderson et al., 2002; Kosloski et al., 2002; Mahoney et al., 2005; Sun et al., 2012). Aspects, such as the view of the family and role expectations with different filial obligations (Pyke & Bengtson, 1996; Youn et al., 1999; Killian & Ganong, 2002; Kosloski et al., 2002; Wallhagen & Yamamoto-Mitani, 2006; Mazaheri et al., 2011; Sun et al., 2012) and use of professional care (Kosloski et al., 2002; Kim & Lee, 2003), have been found to play a significant role in understanding family caregiving. In Sweden, Winqvist (1999) showed that family caregivers from a working class background had a more family-focused approach to caring for a parent with needs of assistance, compared with family caregivers from other social classes. However, few studies have focused on the caregiver experiences in rural versus urban areas, and no such studies have been conducted in a Swedish context. In a literature review, no large differences on outcomes such as service use, health promotion behaviours and psychological health and no large differences between urban and rural family caregivers were identified (McKenzie et al., 2010). However, there are important aspects to mention: some studies have focused on rural family caregivers’ use of public health services (Kosloski et al., 2002; Wenger et al., 2002; Kim & Lee, 2003), indicating that the amount of public care services used was dependent on the users’ view of the family (Kosloski et al., 2002). Wenger et al. (2002) found that public health services were used to a lesser extent in rural areas than in urban areas. Nordberg (2007) confirms these results in a Swedish context, where older people in rural areas were greater than three times more likely to receive care from the family irrespective of disability. As there is a commonly held belief (cf. L€ ofgren, 1994; Kosloski et al., 2002) that there are differences in rural and urban life style and living conditions including attitudes and norms, we hypothesised that caregivers’ experiences would also differ. The aim of the present study was to describe and compare family caregivers’ reactions to caregiving for a relative with dementia, in urban and rural areas and to examine the associations between caregiving and socio-demographic factors.
Methods Design We used a cross-sectional and comparative study design to describe and compare family caregivers’ reactions to caregiving in urban and rural areas of Sweden. 29
K. Ehrlich et al.
Settings A convenience sample of municipalities was used to represent urban and rural populations in Sweden. Six of 14 municipal town districts of Stockholm with varying social structures were selected to represent the urban area. These districts represent approximately 308 200 persons, 16% of Stockholm’s inhabitants at the time of the data collection with an income of approximately 247 300 SEK (27 562 €) compared with 264 300 SEK (29 456€) in Stockholm as a whole. Eight of 15 municipalities of the Swedish province of Dalarna with a population density of 1.1 to 13.1 inhabitants per km² were selected to represent a rural area. There were approximately 94 500 persons living in these eight municipalities, 34% of the total population of Dalarna. The majority of the population in this area work with farming, forestry and small industries. The average income for inhabitants in the eight districts was 206 500 SEK (22 981€) and in Dalarna was approximately 220 000 SEK (24 520€) at the time of the study (SCB, 2013a,b).
Participants In this study, family caregiver was defined as an individual with primary responsibility for caregiving for a person diagnosed with dementia-related disease living in their own homes for two or more years. The caregiver required the cognitive capacity to respond to the questionnaires.
The CRA is a self-rating and multidimensional instrument designed to assess aspects of the caregiving situation covering 24 positive and negative items. The Swedish version of the CRA has three additional items. In the Swedish version of the CRA, the respondents are asked to rate the responses on a four-point Likert scale [strongly disagree (1), disagree (2), agree (3) and strongly agree (4)] instead of the original fivepoint Likert scale. Factor analyses in previous studies have shown that the items can be divided into five subscales: (i) caregiver esteem measures experiences of caregiving (8 items), (ii) lack of family support measures the extent to which the caregiver perceives a lack of family support and the caregiver’s perception of being abandoned (7 items), (iii) impact on finances measures the extent of financial strain on the caregiver (3 items), (iv) impact on schedule measures the extent to which caregiving interrupts typical daily activities (5 items) and (v) impact on health assesses the caregiver’s own physical health (4 items). The internal consistency of the subscales measured by Cronbach’s alpha values has ranged between 0.57 and 0.90 (Given et al., 1992; Grov et al., 2006a). Factor analysis in the Swedish population has confirmed previous subscale structure, and the Cronbach’s alpha values ranged between 0.76 and 0.86 (Persson et al., 2008). In our study, Cronbach’s alpha values ranged between 0.64 and 0.89. Information on socio-demographic variables such as gender, education level, age and relationship to person with dementia, that is, spouse or adult children was also collected.
Instrument To capture caregiver experiences, we used the Caregiver Reaction Assessment Scale (CRA), developed by Given et al. (1992), to assess caregiver’s reaction for caring. This instrument has been used in at least 15 studies worldwide, mostly in populations with family caregivers of persons with cancer diagnosis (Nijboer et al., 1998, 1999, 2000; Grov et al., 2006a,b; Grov & Lyng as Eklund, 2008; Misawa et al., 2009; Park et al., 2012) , but has been shown to be useful in other populations as well, for example family caregivers to persons with dementia (Meiland et al., 2001), rheumatoid arthritis (Brouwer et al., 2004) and frail older people (Grov & Lyng as Eklund, 2008; Aggar et al., 2011). The scale has shown usefulness in different contexts throughout translations (Bachner et al., 2007; Misawa et al., 2009; Malhotra et al., 2012). The Swedish version of the CRA has been translated and tested in Swedish populations of family caregivers and was shown to be a valid and reliable instrument in this context (Persson et al., 2008). 30
Data collection To enable the recruitment of participants, managers at social service departments and day care units, and specialist nurses in dementia care in the selected areas were mailed and asked to contact known family caregivers and to deliver an information letter about the study to those who met the inclusion criteria. In the urban area, 75 caregivers were identified. The questionnaires were sent to the caregivers by mail including written information about the study and their rights as participants. In the rural area, the questionnaires were distributed to 52 caregivers by the specialist nurses in dementia care.
Ethical considerations Participants were informed about the aim of the study, and that participation was voluntary. They were told that they could cease participation at any time and that their identity would not be revealed. The study was approved by Karo© 2014 John Wiley & Sons Ltd
Family Caregivers in Rural and Urban Areas
linska Institutet’s Regional Ethical Research Committee, Sweden (Dnr 03-069).
Data analysis All statistics were computed by the Statistical Package for Social Sciences (SPSS), version 18.0 for Windows (SPSS Inc., Chicago, IL, USA). Data entry was double-checked, and missing data were not substituted. Descriptive statistics was used to describe the caregivers’ socio-demographic background. Reliability of the subscales in this sample has been tested using Cronbach’s alpha. Differences between two groups were analysed with the Student’s unpaired t-test for continuous data and the chi-squared tests for proportions. Linear regression analysis was performed to assess the associations between the five subscales and the socio-demographic and geographical variables. The level of significance was selected as ≤ 0.05.
Results Respondents In total, 102 family caregivers responded on the questionnaire (overall response rate 85%). In the urban area, 57 caregivers responded (76% response rate), and in the rural area, 45 persons answered the questionnaire (87% response rate). The characteristics of the caregivers are displayed in Table 1. Sixty per cent of the respondents were over 65 years old. The mean age was 66 years (range 38–
Definition
Age Age
Mean (SD) ≤64 ≥65 Female Male Spouses Adult children 6–9 years 9–12 years University Retired Working Others
Gender Relationship
Education
Employment status
Total* (n = 102) (%)
Urban (n = 57) (%)
Rural (n = 45) (%)
66.3 40 (39) 61 (61) 71 (70) 30 (30) 62 (61) 39 (39)
67.4 24 (42) 33 (58) 34 (60) 23 (40) 35 (61) 22 (39)
64.9 16 (36) 28 (64) 37 (84) 7 (16) 27 (61) 17 (39)
0.264 0.959
46 25 25 65 32 2
28 11 16 35 21 1
18 14 9 30 11 1
0.295
(48) (26) (26) (66) (32) (2)
(51) (20) (29) (61) (37) (2)
*Lower figures depend on internal dropouts. © 2014 John Wiley & Sons Ltd
Caregivers’ assessment in urban and rural areas A comparison of single items and subscales of the CRA for urban and rural areas is shown in Table 2. Overall, family caregivers rated high scores on the two subscales caregiver esteem and impact on schedule, indicating that they found satisfaction in caregiving despite a high impact on daily life. No significant differences between caregivers living in rural or urban areas were found in these two subscales. A statistically significant difference between caregivers living in rural and urban areas was found in the subscale impact on finances. Caregivers living in the rural area found their financial situation more burdensome than caregivers living in the urban area. Statistically significant differences were also found in four items in the lack of family support subscale. The caregivers living in the urban area reported more difficulties in getting help from the family and from others and thereby felt more alone than the rural counterparts. However, the caregivers in the rural area experienced more feelings of abandonment from the family. The items about impact on health revealed that the caregivers in the rural area reported less physical strength than the urban caregivers.
Associations between CRA subscales and sociodemographic and geographical variables
Table 1 Caregiver characteristics (n = 102)
Variable
88 years). The majority of the caregivers were female (70%), but there were a significantly greater percentage of men in the urban area. There was a dominance of spouses (61%) in the sample. Most of the respondents were retired, living on a pension (64%) and had a low level of education (45%).
(44) (34) (22) (71) (26) (3)
Pvalue
0.005 0.924
0.531
Regression analyses were performed to identify possible associations between the socio-demographic and the geographical variables and the five CRA subscales. The statistically significant results are presented in Table 3. Being a female caregiver was statistically significant associated with the two subscales impact on finances (P = 0.008) and impact on schedule (P = 0.015) indicating more financial problems and higher impact on daily life. Higher age was significantly associated with increased health problems (P = 0.003). Relationship was significantly associated with the two subscales caregiver esteem (P = 0.003) and impact on schedule (P < 0.001). This means that children having a parent in need of support experienced more impact on daily life and lower caregiver esteem than spouses. The geographical variable (urban and rural areas) and education level were not associated with any of the five subscales. 31
K. Ehrlich et al. Table 2 Comparison of single items and subscales of the caregiver reaction assessment
Item
Total Mean (SD) n = 102
Urban Mean (SD) n = 57
Rural Mean (SD) n = 45
P-value
Caregiver esteem 7. Resent having to care 9. Want to care 20. Caring is important to me 23. Enjoy caring 17. Caring makes me feel good 1. Privilege to care 12. Never do enough to repay 25. Never do anything that repays Lack of family support 2. Others dump caring 6. Difficult to get help from family 27. Difficult to get help from others 13. Family works together 26. Feel abandoned by everyone 16. Feel abandoned by family 22. Family left me alone Impact on finances 3. Finances adequate 21. Financial strain 24. Difficult to pay Impact on schedule 4. Activities centred on care 8. Stop work to care 11. Visit Family/friends less 18. Interruptions 14. Eliminate from schedule Impact on health 5. Tired all the time 10. Health has gotten worse 19. Healthy enough to care 15. Physical strength
2.90 3.49 3.17 3.04 3.03 3.01 2.65 2.57 2.16 1.97 2.57 2.39 2.28 1.75 1.52 1.51 1.78 1.90 2.18 1.80 1.76 2.84 3.08 2.81 2.79 2.78 2.75 2.31 2.69 2.22 2.20 2.13
2.92 3.46 3.25 3.17 3.04 3.04 2.70 2.74 1.98 2.06 2.69 2.63 2.56 1.80 1.45 1.34 2.02 1.75 2.09 1.63 1.50 2.86 3.15 2.82 2.74 2.78 2.81 2.20 2.73 2.12 2.04 1.88
2.87 3.53 3.07 2.88 3.03 2.98 2.60 2.35 2.40 1.88 2.42 2.11 1.98 1.70 1.60 1.71 1.49 2.09 2.29 2.00 2.08 2.82 3.00 2.80 2.84 2.79 2.69 2.44 2.64 2.34 2.40 2.42
0.574 0.645 0.257 0.094 0.947 0.699 0.606 0.075 0.065 0.203 0.221 0.020 0.009 0.624 0.356 0.016 0.014 0.018 0.299 0.050 0.002 0.832 0.447 0.933 0.644 0.960 0.570 0.131 0.674 0.266 0.076 0.002
(0.490) (0.775) (0.785) (0.841) (0.832) (0.773) (0.932) (1.036) (1.078) (0.681) (1.072) (1.084) (1.036) (0.996) (0.746) (0.749) (1.031) (0.688) (0.887) (0.906) (0.878) (0.854) (0.981) (1.070) (1.091) (1.020) (1.021) (0.765) (0.971) (0.986) (0.962) (0.858)
(0.485) (0.813) (0.771) (0.706) (0.807) (0.766) (0.972) (1.077) (1.122) (0.699) (1.112) (1.131) (1.035) (1.030) (0.702) (0.658) (1.229) (0.591) (0.925) (0.817) (0.647) (0.805) (0.894) (1.124) (1.103) (1.016) (0.991) (0.805) (1.062) (1.041) (0.968) (0.765)
(0.501) (0.735) (0.799) (0.968) (0.878) (0.790) (0.889) (0.949) (0.982) (0.654) (1.006) (0.970) (0.961) (0.964) (0.798) (0.805) (0.637) (0.756) (0.835) (0.976) (1.023) (0.916) (1.078) (1.014) (1.086) (1.036) (1.062) (0.701) (0.57) (0.914) (0.929) (0.879)
Response alternatives: 1 = strongly disagree; 2 = disagree; 3 = agree, and 4 = strongly agree.
Discussion The hypothesis of this study was that differences in urban and rural lifestyles would have an impact on the caregivers’ assessments of their situation. Furthermore, the hypothesis was that variables such as level of education would have an effect, since this appears to be a factor in other contexts (Winqvist, 1999; Morgan et al., 2002; Killian & Ganong, 2002; Youn et al., 1999; Pyke & Bengtson, 1996; Kjellman, 1984; Jansson et al., 1997). In total, the respondents reported high caregiver esteem regardless of geographical setting, which is supported by Andren and Elmst ahl (2005) who claim that satisfaction could coexist with caregiver burden among family caregivers of a person with dementia. Using linear regression analysis, we did not identify any associations between the CRA subscales and geographical setting or educational level (Table 3). 32
Associations were, however, identified between four of the five CRA subscales and the independent variables age, gender and relationship. Similar associations were also found in the Norwegian study by Grov and Lyng as Eklund (2008) among family caregivers of frail older persons. Focusing on these variables, we found that adult children experience more impact on daily life and lower caregiver esteem compared with the spouses caring for a person with dementia. This seems to be a general finding in Northern Europe, also confirmed by Grov and Lyng as Eklund (2008) and Jansson et al. (1997) who showed that a vast majority of adult children were unwilling to continue to take care of parents when the condition deteriorated. However, in societies with more family-based traditions, Conde-Sala et al. (2010) show the same pattern with high levels of burden among adult-child caregivers, especially among women who lived with their parents and also had their own family duties. From a Swedish societal perspective, the © 2014 John Wiley & Sons Ltd
Family Caregivers in Rural and Urban Areas Table 3 Regression analysis for associations between demographic and geographical variables and the caregiver reaction assessment subscales
Age Gender Relation ship Educational level Geographical setting (Urban/Rural)
Caregiver esteem
Lack of family support
Impact on finances
Impact on schedule
Impact on health
B
B
B
SE
P-value
B
SE
P-value
B
SE
P-value
0.50
0.16
0.003
0.41
0.15
0.008
0.39 0.92
0.16 0.15
0.015
Family caregivers’ assessments of caring for a relative with dementia: a comparison of urban and rural areas Kethy Ehrlich
MScN, RN
PhD Student, Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institute, Huddinge, Sweden and Department of Geriatric Medicine, Danderyd Hospital, Stockholm, Sweden
Anne-Marie Bostr€ om
PhD, RN
Associate Professor, Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institute, Huddinge, Sweden and Department of Geriatric Medicine, Danderyd Hospital, Stockholm, Sweden
Monir Mazaheri
BScN, MScN, PhD, RN
Lecturer, School of Health, Care and Social Welfare, Division of Caring Sciences, M€ alardalen University, V€ aster as, Sweden
Kristiina Heikkil€ a
PhD
Senior Lecturer, Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institute, Huddinge, Sweden
Azita Emami
PhD, RN
Professor, Aging Research Center (ARC), Karolinska Institute, Stockholm, Sweden and Biobehavioral Nursing & Health Systems, School of Nursing, University of Washington, Seattle, WA, USA
Submitted for publication: 4 June 2013 Accepted for publication: 29 October 2013
Correspondence: Kethy Ehrlich 23300 Huddinge SE-141 83 Sweden Telephone: 0046 8 524 83907 E-mail: [email protected]
© 2014 John Wiley & Sons Ltd
¨ K. & EMAMI A. (2015) ¨ M A.-M., MAZAHERI M., HEIKKILA EHRLICH K., BOSTRO
Family caregivers’ assessments of caring for a relative with dementia: a comparison of urban and rural areas. International Journal of Older People Nursing 10, 27–37. doi: 10.1111/opn.12044 Aim. This study aimed to describe and compare urban and rural family caregivers’ reactions to caring for a relative with dementia and to examine the associations between caregiving and socio-demographic factors. Background. Most studies on family caregivers’ experiences caring for older people with dementia have been conducted in urban areas, and little is known about the experiences of family caregivers living in rural areas. Design. A cross-sectional study design was used. Methods. A total of 102 caregivers (response rate 85%) from urban (n = 57) and rural (n = 46) areas completed the Caregiver Reaction Assessment (CRA) Scale and demographic information. Data were analysed using descriptive and inferential statistics and linear regression models. Results. Overall, family caregivers reported high satisfaction even if they also reported high impact on finances and daily living. Rural caregivers experienced a higher negative impact on finances but reported more support from family members than urban caregivers. Age, gender and relationship were significantly associated with four of the five CRA subscales. Educational level and geographical setting were not associated with any of the CRA subscales. 27
K. Ehrlich et al.
Conclusions. The results of the study raise questions about the financial situation of older female caregivers and on the expectations of built-in family structures in urban and rural areas. Further studies focusing on the meaning and constitution of a family would help us to understand how these factors influence family caregiving both in rural and urban areas. Implications for practice. To provide person-centred care and to avoid stereotyped caregiving, a better picture of traditions in family caregiving can improve a more differentiated and appropriate professional caregiving pliable with the cultural context in which it is carried out. Key words: Caregiver Reaction Assessment Scale, dementia, family caregiver, regression model, rural and urban areas
What does this research add to existing knowledge in gerontology?
• • •
Both in urban and rural areas family caregivers were highly satisfied caring for relatives with dementia. Financial strain is a women’s issue rather than an issue of location or place of residence. The extent of family involvement in caregiving can reveal differences in the meaning and the demands of the family.
What are the implications of this new knowledge for nursing care with older people?
•
To provide person-centred care, different nursing interventions to support family involvement should be considered with regard to built-in family traditions.
How could the findings be used to influence policy or practice or research or education?
• •
Professional caregiver education needs to challenge the traditional view of the family and family caregiving to develop and implement adequate nursing interventions for each family. Policymakers should consider the requirement of various support strategies for family caregivers tailoring different needs among family caregivers.
Introduction Life in rural areas is different from urban areas with regard to age structure and geographical conditions. There are also differences in access to public transport, professional health 28
care and specialist treatment. This suggests that the conditions of family caregivers in urban and rural areas might also be different. National policymaking, planning and improvements in dementia care are usually based on the results of studies conducted in urban communities. There is a lack of knowledge regarding the rural population’s experiences of family caregiving and needs, which may result in inappropriate care provision for this particular group. Therefore, in this study, we have examined whether caregivers’ reactions in rural settings in any way differ from urban settings. Worldwide, older persons with dementia mostly live in their own homes, often with family support. The financial, social and therapeutic benefits of family care have been extensively documented, not only for the person with dementia but also for society as a whole (Schultz & Martire, 2004). Many cross-national studies show that caring for a person with dementia is stressful (Patterson et al., 1998; Murray et al., 1999; Etters et al., 2008). The burden of caring for such persons is even greater than for other chronic conditions (Ericson et al., 2001; De la Cuesta, 2005). The societal involvement differs throughout Europe and United States with high involvement in Scandinavia, the Netherlands and Switzerland and low involvement in southern and central Europe (Haberkern & Szydlik, 2010). Instead there are extended filial obligations where the family are legally obligated to support their frail older family member both socially and economically. However, among the general public, caregiving is perceived as a responsibility of the family even if caregiving predominantly is a female task (Haberkern & Szydlik, 2010). In Sweden, there are no statutory obligations for family members to provide care or financial support for older parents, partners or relatives (NBHW, 2007a). Instead the local municipalities are responsible for the welfare of older persons, and they are legally obliged to meet the social services and housing needs of this group, as well as relatives © 2014 John Wiley & Sons Ltd
Family Caregivers in Rural and Urban Areas
who care for persons with dementia. This support is for the most part financed through taxes (NBHW, 2013b). Municipal support is offered from each local community for persons with dementia and also to their family caregivers. Different forms of care are available, although access to municipal support can vary somewhat from area to area. However, the forms of the support tend to be rather similar throughout Sweden. Common types of support for older persons with dementia and their family caregivers are linked to education on dementia, meeting places for family caregivers, support from nurses trained in dementia care, dementia day care centres and short-term care (NBHW, 2009c). Despite the Swedish welfare system, the average amount of family care is estimated to be approximately 8.5 times more than professional care (Wimo et al., 2002). The largest group of caregivers consists of older female spouses. Adult children, especially daughters, are another large group (Wimo et al., 2002) although they were not especially willing to care for a parent with dementia (Jansson et al., 1997). Burden and strain seem to vary among different socio-economic groups. Low income together with a lower health profile has shown a negative impact on burden both internationally and in the Swedish context (Covinsky et al., 2003; Andren & Elmst ahl, 2007). Throughout the Western world, female family members caring for relatives tend to suffer from stress and exhaustion to a greater extent than male caregivers (Gottlieb & Gignac, 1996; Almberg et al., 1997; Patterson et al., 1998; Williamson & Schaffer, 2001) and are also at greater risk of depression (Beeson et al., 2000; Covinsky et al., 2003; Mahoney et al., 2005). Zwaanswij et al. (2013) show that family caregivers taking care of a person with dementia experienced problems in caring irrespective of the stage of the illness. Studies in other cultural contexts show that a strong focus on the family can both reduce (Knight et al., 2002) and increase (Youn et al., 1999) burden and depression especially combined with a low income (Kim & Lee, 2003). Caregiving for relatives with dementia can also be experienced as a threat against social dignity according to both social norms and expectations in the family and in the surrounding society (Mazaheri, 2013). Despite the physical and psychological pressures, family caregivers and especially spouses want their close relative to live at home for as long as possible (Almberg et al., 2000; NBWH, 2000d; Morgan et al., 2002), as caregiving also gives feelings of gain (Sanders, 2005) and an experience of fulfilment which raised self-esteem and satisfaction (Mazaheri et al., 2011). In a Swedish context, studies show that satisfaction and burden can coexist (Andren & Elmst ahl, 2005) and that burden and perceived health among family caregivers are shown to be dependent on coping capacity combined with a strong sense of coherence (Andren & Elmst ahl, 2007). © 2014 John Wiley & Sons Ltd
International studies show differences in attitudes to caregiving among family caregivers between diverse nationalities (Wallhagen & Yamamoto-Mitani, 2006; Mazaheri, 2013) and among ethnic minorities (Dilworth-Anderson et al., 2002; Kosloski et al., 2002; Mahoney et al., 2005; Sun et al., 2012). Aspects, such as the view of the family and role expectations with different filial obligations (Pyke & Bengtson, 1996; Youn et al., 1999; Killian & Ganong, 2002; Kosloski et al., 2002; Wallhagen & Yamamoto-Mitani, 2006; Mazaheri et al., 2011; Sun et al., 2012) and use of professional care (Kosloski et al., 2002; Kim & Lee, 2003), have been found to play a significant role in understanding family caregiving. In Sweden, Winqvist (1999) showed that family caregivers from a working class background had a more family-focused approach to caring for a parent with needs of assistance, compared with family caregivers from other social classes. However, few studies have focused on the caregiver experiences in rural versus urban areas, and no such studies have been conducted in a Swedish context. In a literature review, no large differences on outcomes such as service use, health promotion behaviours and psychological health and no large differences between urban and rural family caregivers were identified (McKenzie et al., 2010). However, there are important aspects to mention: some studies have focused on rural family caregivers’ use of public health services (Kosloski et al., 2002; Wenger et al., 2002; Kim & Lee, 2003), indicating that the amount of public care services used was dependent on the users’ view of the family (Kosloski et al., 2002). Wenger et al. (2002) found that public health services were used to a lesser extent in rural areas than in urban areas. Nordberg (2007) confirms these results in a Swedish context, where older people in rural areas were greater than three times more likely to receive care from the family irrespective of disability. As there is a commonly held belief (cf. L€ ofgren, 1994; Kosloski et al., 2002) that there are differences in rural and urban life style and living conditions including attitudes and norms, we hypothesised that caregivers’ experiences would also differ. The aim of the present study was to describe and compare family caregivers’ reactions to caregiving for a relative with dementia, in urban and rural areas and to examine the associations between caregiving and socio-demographic factors.
Methods Design We used a cross-sectional and comparative study design to describe and compare family caregivers’ reactions to caregiving in urban and rural areas of Sweden. 29
K. Ehrlich et al.
Settings A convenience sample of municipalities was used to represent urban and rural populations in Sweden. Six of 14 municipal town districts of Stockholm with varying social structures were selected to represent the urban area. These districts represent approximately 308 200 persons, 16% of Stockholm’s inhabitants at the time of the data collection with an income of approximately 247 300 SEK (27 562 €) compared with 264 300 SEK (29 456€) in Stockholm as a whole. Eight of 15 municipalities of the Swedish province of Dalarna with a population density of 1.1 to 13.1 inhabitants per km² were selected to represent a rural area. There were approximately 94 500 persons living in these eight municipalities, 34% of the total population of Dalarna. The majority of the population in this area work with farming, forestry and small industries. The average income for inhabitants in the eight districts was 206 500 SEK (22 981€) and in Dalarna was approximately 220 000 SEK (24 520€) at the time of the study (SCB, 2013a,b).
Participants In this study, family caregiver was defined as an individual with primary responsibility for caregiving for a person diagnosed with dementia-related disease living in their own homes for two or more years. The caregiver required the cognitive capacity to respond to the questionnaires.
The CRA is a self-rating and multidimensional instrument designed to assess aspects of the caregiving situation covering 24 positive and negative items. The Swedish version of the CRA has three additional items. In the Swedish version of the CRA, the respondents are asked to rate the responses on a four-point Likert scale [strongly disagree (1), disagree (2), agree (3) and strongly agree (4)] instead of the original fivepoint Likert scale. Factor analyses in previous studies have shown that the items can be divided into five subscales: (i) caregiver esteem measures experiences of caregiving (8 items), (ii) lack of family support measures the extent to which the caregiver perceives a lack of family support and the caregiver’s perception of being abandoned (7 items), (iii) impact on finances measures the extent of financial strain on the caregiver (3 items), (iv) impact on schedule measures the extent to which caregiving interrupts typical daily activities (5 items) and (v) impact on health assesses the caregiver’s own physical health (4 items). The internal consistency of the subscales measured by Cronbach’s alpha values has ranged between 0.57 and 0.90 (Given et al., 1992; Grov et al., 2006a). Factor analysis in the Swedish population has confirmed previous subscale structure, and the Cronbach’s alpha values ranged between 0.76 and 0.86 (Persson et al., 2008). In our study, Cronbach’s alpha values ranged between 0.64 and 0.89. Information on socio-demographic variables such as gender, education level, age and relationship to person with dementia, that is, spouse or adult children was also collected.
Instrument To capture caregiver experiences, we used the Caregiver Reaction Assessment Scale (CRA), developed by Given et al. (1992), to assess caregiver’s reaction for caring. This instrument has been used in at least 15 studies worldwide, mostly in populations with family caregivers of persons with cancer diagnosis (Nijboer et al., 1998, 1999, 2000; Grov et al., 2006a,b; Grov & Lyng as Eklund, 2008; Misawa et al., 2009; Park et al., 2012) , but has been shown to be useful in other populations as well, for example family caregivers to persons with dementia (Meiland et al., 2001), rheumatoid arthritis (Brouwer et al., 2004) and frail older people (Grov & Lyng as Eklund, 2008; Aggar et al., 2011). The scale has shown usefulness in different contexts throughout translations (Bachner et al., 2007; Misawa et al., 2009; Malhotra et al., 2012). The Swedish version of the CRA has been translated and tested in Swedish populations of family caregivers and was shown to be a valid and reliable instrument in this context (Persson et al., 2008). 30
Data collection To enable the recruitment of participants, managers at social service departments and day care units, and specialist nurses in dementia care in the selected areas were mailed and asked to contact known family caregivers and to deliver an information letter about the study to those who met the inclusion criteria. In the urban area, 75 caregivers were identified. The questionnaires were sent to the caregivers by mail including written information about the study and their rights as participants. In the rural area, the questionnaires were distributed to 52 caregivers by the specialist nurses in dementia care.
Ethical considerations Participants were informed about the aim of the study, and that participation was voluntary. They were told that they could cease participation at any time and that their identity would not be revealed. The study was approved by Karo© 2014 John Wiley & Sons Ltd
Family Caregivers in Rural and Urban Areas
linska Institutet’s Regional Ethical Research Committee, Sweden (Dnr 03-069).
Data analysis All statistics were computed by the Statistical Package for Social Sciences (SPSS), version 18.0 for Windows (SPSS Inc., Chicago, IL, USA). Data entry was double-checked, and missing data were not substituted. Descriptive statistics was used to describe the caregivers’ socio-demographic background. Reliability of the subscales in this sample has been tested using Cronbach’s alpha. Differences between two groups were analysed with the Student’s unpaired t-test for continuous data and the chi-squared tests for proportions. Linear regression analysis was performed to assess the associations between the five subscales and the socio-demographic and geographical variables. The level of significance was selected as ≤ 0.05.
Results Respondents In total, 102 family caregivers responded on the questionnaire (overall response rate 85%). In the urban area, 57 caregivers responded (76% response rate), and in the rural area, 45 persons answered the questionnaire (87% response rate). The characteristics of the caregivers are displayed in Table 1. Sixty per cent of the respondents were over 65 years old. The mean age was 66 years (range 38–
Definition
Age Age
Mean (SD) ≤64 ≥65 Female Male Spouses Adult children 6–9 years 9–12 years University Retired Working Others
Gender Relationship
Education
Employment status
Total* (n = 102) (%)
Urban (n = 57) (%)
Rural (n = 45) (%)
66.3 40 (39) 61 (61) 71 (70) 30 (30) 62 (61) 39 (39)
67.4 24 (42) 33 (58) 34 (60) 23 (40) 35 (61) 22 (39)
64.9 16 (36) 28 (64) 37 (84) 7 (16) 27 (61) 17 (39)
0.264 0.959
46 25 25 65 32 2
28 11 16 35 21 1
18 14 9 30 11 1
0.295
(48) (26) (26) (66) (32) (2)
(51) (20) (29) (61) (37) (2)
*Lower figures depend on internal dropouts. © 2014 John Wiley & Sons Ltd
Caregivers’ assessment in urban and rural areas A comparison of single items and subscales of the CRA for urban and rural areas is shown in Table 2. Overall, family caregivers rated high scores on the two subscales caregiver esteem and impact on schedule, indicating that they found satisfaction in caregiving despite a high impact on daily life. No significant differences between caregivers living in rural or urban areas were found in these two subscales. A statistically significant difference between caregivers living in rural and urban areas was found in the subscale impact on finances. Caregivers living in the rural area found their financial situation more burdensome than caregivers living in the urban area. Statistically significant differences were also found in four items in the lack of family support subscale. The caregivers living in the urban area reported more difficulties in getting help from the family and from others and thereby felt more alone than the rural counterparts. However, the caregivers in the rural area experienced more feelings of abandonment from the family. The items about impact on health revealed that the caregivers in the rural area reported less physical strength than the urban caregivers.
Associations between CRA subscales and sociodemographic and geographical variables
Table 1 Caregiver characteristics (n = 102)
Variable
88 years). The majority of the caregivers were female (70%), but there were a significantly greater percentage of men in the urban area. There was a dominance of spouses (61%) in the sample. Most of the respondents were retired, living on a pension (64%) and had a low level of education (45%).
(44) (34) (22) (71) (26) (3)
Pvalue
0.005 0.924
0.531
Regression analyses were performed to identify possible associations between the socio-demographic and the geographical variables and the five CRA subscales. The statistically significant results are presented in Table 3. Being a female caregiver was statistically significant associated with the two subscales impact on finances (P = 0.008) and impact on schedule (P = 0.015) indicating more financial problems and higher impact on daily life. Higher age was significantly associated with increased health problems (P = 0.003). Relationship was significantly associated with the two subscales caregiver esteem (P = 0.003) and impact on schedule (P < 0.001). This means that children having a parent in need of support experienced more impact on daily life and lower caregiver esteem than spouses. The geographical variable (urban and rural areas) and education level were not associated with any of the five subscales. 31
K. Ehrlich et al. Table 2 Comparison of single items and subscales of the caregiver reaction assessment
Item
Total Mean (SD) n = 102
Urban Mean (SD) n = 57
Rural Mean (SD) n = 45
P-value
Caregiver esteem 7. Resent having to care 9. Want to care 20. Caring is important to me 23. Enjoy caring 17. Caring makes me feel good 1. Privilege to care 12. Never do enough to repay 25. Never do anything that repays Lack of family support 2. Others dump caring 6. Difficult to get help from family 27. Difficult to get help from others 13. Family works together 26. Feel abandoned by everyone 16. Feel abandoned by family 22. Family left me alone Impact on finances 3. Finances adequate 21. Financial strain 24. Difficult to pay Impact on schedule 4. Activities centred on care 8. Stop work to care 11. Visit Family/friends less 18. Interruptions 14. Eliminate from schedule Impact on health 5. Tired all the time 10. Health has gotten worse 19. Healthy enough to care 15. Physical strength
2.90 3.49 3.17 3.04 3.03 3.01 2.65 2.57 2.16 1.97 2.57 2.39 2.28 1.75 1.52 1.51 1.78 1.90 2.18 1.80 1.76 2.84 3.08 2.81 2.79 2.78 2.75 2.31 2.69 2.22 2.20 2.13
2.92 3.46 3.25 3.17 3.04 3.04 2.70 2.74 1.98 2.06 2.69 2.63 2.56 1.80 1.45 1.34 2.02 1.75 2.09 1.63 1.50 2.86 3.15 2.82 2.74 2.78 2.81 2.20 2.73 2.12 2.04 1.88
2.87 3.53 3.07 2.88 3.03 2.98 2.60 2.35 2.40 1.88 2.42 2.11 1.98 1.70 1.60 1.71 1.49 2.09 2.29 2.00 2.08 2.82 3.00 2.80 2.84 2.79 2.69 2.44 2.64 2.34 2.40 2.42
0.574 0.645 0.257 0.094 0.947 0.699 0.606 0.075 0.065 0.203 0.221 0.020 0.009 0.624 0.356 0.016 0.014 0.018 0.299 0.050 0.002 0.832 0.447 0.933 0.644 0.960 0.570 0.131 0.674 0.266 0.076 0.002
(0.490) (0.775) (0.785) (0.841) (0.832) (0.773) (0.932) (1.036) (1.078) (0.681) (1.072) (1.084) (1.036) (0.996) (0.746) (0.749) (1.031) (0.688) (0.887) (0.906) (0.878) (0.854) (0.981) (1.070) (1.091) (1.020) (1.021) (0.765) (0.971) (0.986) (0.962) (0.858)
(0.485) (0.813) (0.771) (0.706) (0.807) (0.766) (0.972) (1.077) (1.122) (0.699) (1.112) (1.131) (1.035) (1.030) (0.702) (0.658) (1.229) (0.591) (0.925) (0.817) (0.647) (0.805) (0.894) (1.124) (1.103) (1.016) (0.991) (0.805) (1.062) (1.041) (0.968) (0.765)
(0.501) (0.735) (0.799) (0.968) (0.878) (0.790) (0.889) (0.949) (0.982) (0.654) (1.006) (0.970) (0.961) (0.964) (0.798) (0.805) (0.637) (0.756) (0.835) (0.976) (1.023) (0.916) (1.078) (1.014) (1.086) (1.036) (1.062) (0.701) (0.57) (0.914) (0.929) (0.879)
Response alternatives: 1 = strongly disagree; 2 = disagree; 3 = agree, and 4 = strongly agree.
Discussion The hypothesis of this study was that differences in urban and rural lifestyles would have an impact on the caregivers’ assessments of their situation. Furthermore, the hypothesis was that variables such as level of education would have an effect, since this appears to be a factor in other contexts (Winqvist, 1999; Morgan et al., 2002; Killian & Ganong, 2002; Youn et al., 1999; Pyke & Bengtson, 1996; Kjellman, 1984; Jansson et al., 1997). In total, the respondents reported high caregiver esteem regardless of geographical setting, which is supported by Andren and Elmst ahl (2005) who claim that satisfaction could coexist with caregiver burden among family caregivers of a person with dementia. Using linear regression analysis, we did not identify any associations between the CRA subscales and geographical setting or educational level (Table 3). 32
Associations were, however, identified between four of the five CRA subscales and the independent variables age, gender and relationship. Similar associations were also found in the Norwegian study by Grov and Lyng as Eklund (2008) among family caregivers of frail older persons. Focusing on these variables, we found that adult children experience more impact on daily life and lower caregiver esteem compared with the spouses caring for a person with dementia. This seems to be a general finding in Northern Europe, also confirmed by Grov and Lyng as Eklund (2008) and Jansson et al. (1997) who showed that a vast majority of adult children were unwilling to continue to take care of parents when the condition deteriorated. However, in societies with more family-based traditions, Conde-Sala et al. (2010) show the same pattern with high levels of burden among adult-child caregivers, especially among women who lived with their parents and also had their own family duties. From a Swedish societal perspective, the © 2014 John Wiley & Sons Ltd
Family Caregivers in Rural and Urban Areas Table 3 Regression analysis for associations between demographic and geographical variables and the caregiver reaction assessment subscales
Age Gender Relation ship Educational level Geographical setting (Urban/Rural)
Caregiver esteem
Lack of family support
Impact on finances
Impact on schedule
Impact on health
B
B
B
SE
P-value
B
SE
P-value
B
SE
P-value
0.50
0.16
0.003
0.41
0.15
0.008
0.39 0.92
0.16 0.15
0.015
