EMPIRICAL STUDIES
doi: 10.1111/scs.12114
Informal and formal care of older people in Iceland Sigurveig H. Sigurdardottir PhD (Associate Professor)1,2 and Ingemar K areholt PhD (Associate Professor)2,3 1
Faculty of Social Work, School of Social Sciences, University of Iceland, Reykjavik, Iceland, 2Institute of Gerontology, School of Health Sciences, J€ onk€ oping University, J€ onk€ oping, Sweden and 3Aging Research Center, Karolinska Institutet and Stockholms University, Stockholm, Sweden
Scand J Caring Sci; 2014; 28; 802–811 Informal and formal care of older people in Iceland
Background: Even if older people in the Nordic countries living in their homes usually have good access to formal help, the family plays an important role. Few studies have looked at the distribution of informal and formal care and the interplay between these spheres. The aim of this study is to shed light on the distribution of care and to analyse the patterns of care depending on the degree of limitations, the gender of the recipient and whether she/he is cohabitating or not. Method and sample: The Icelandic survey ‘Icelandic Older People’ (ICEOLD) is a random nationally representative survey among persons 65+ living in their homes. Of those who participated (n = 782), 341 were men and 441 were women, giving a response rate of 66%. Findings: About 60% of the people investigated in the survey had limitations with instrumental activities of daily living (IADL), and 10% of people had limitations with personal activities of daily living (PADL). The
Introduction As nations get older, the interest on who is providing help and care to those with some limitations is an increasing subject within the gerontological literature (1–3). Older people within the Nordic states usually have good access to formal care provided by the state or the municipalities. The Nordic welfare model emphasises the right of all to services, independent of social status or financial situation. The care of older people holds a central position within the Nordic countries and is based on the principle of citizenship, which guarantees universal health care and personal social services, mostly financed through general taxation (4). But even though formal services are available, the informal care provided by Correspondence to: Sigurveig H. Sigurdardottir, Faculty of Social Work, School of Social Sciences, University of Iceland, Oddi v/Sturlugo¨tu, 101 Reykjavik, Iceland. E-mail: [email protected]
802
majority of the respondents with IADL or PADL limitations received either informal or formal help, but not both. When the IADL limitations increase, the informal care increases for men, but not for women, and the formal care increases for women, but decreases for men. Cohabiting men are much likelier to receive informal IADL help and less likely to receive formal help than men not cohabiting. Among women, corresponding differences are much smaller and not significant. When there is no spouse, the daughters help more than the sons and they help their mothers more than they help their fathers. Conclusion: More persons receive informal care than formal care, which shows the importance of the family. There is a gender difference in receiving care. Cohabitation is important for receiving informal care, especially for men. Keywords: old age, informal care, health and social care, gender, shared care. Submitted 10 October 2013, Accepted 28 December 2013
family and friends is an important factor in the total provision of care for older people (5–7). Informal care provided by family and friends and formal care provided by state and municipalities is often given in a complementary relationship to each other, especially when the need for assistance increases (7, 8). The formal and informal care have different characteristics and qualities, and they play different roles in the lives of older people. Both types of assistance have their place in the care situation, and some actions can better be handled by the informal caregivers and vice versa (9). The likelihood of older people receiving a combination of both informal and formal care depends on the needs of care. The different kinds of needs can be divided into IADL needs (instrumental activities of daily living), which refer to help with household chores such as cleaning and cooking, and PADL needs (personal activities of daily living), which refer to personal care such as clothing and feeding (1). In a study by Hellstr€ om and Hallberg (10), it was found that those receiving a combination of informal and formal care were older and needed significantly more help © 2014 Nordic College of Caring Science
Care of older people in Iceland with IADL and PADL. Those receiving informal care only were younger and more often married, and those receiving formal care only had help mostly with IADL tasks only, had fewer children and were more often living alone. It is more likely that relatives provide support with IADL rather than PADL care, suggesting that when the need for help with PADL increases, the formal care becomes more important (11, 12). Complementarity versus substitution can be discussed both in a macro-perspective (3, 13) and in a micro (individual)-perspective (1, 14). K€ unemund and Rein (15) use the terms ‘crowding out’, when the state displaces the family by taking over some of the tasks the family used to handle, and ‘crowding in’, when the support of the family increases when the welfare system provides more support. Their results indicate that ‘the crowding in’ effects are more likely, meaning that diverse services offered by the welfare state could cause an increase in the family support. Other studies emphasise that well-organised formal services complement rather than substitute, giving the family more time to pursue other kinds of activities such as contacting officials and providing emotional support (7, 16). Results from the European study SHARE (Survey of Health, Ageing and Retirement in Europe) indicate that on the individual level, the informal care is a substitute for formal low-skilled home help (paid domestic help), but is complementary to high-skilled home care (nursing/ personal care), meaning that the informal help compensates the formal, but there is no substitution effect when the need for assistance increases (8). As the concept of substitution is commonly used at a macro-level and we are analysing data at the micro-level, we prefer to use the verb replacement instead of substitution and contrast that to complementarity. On a micro-level, we define replacement as when either the formal or informal care is taking the place of the other type of care when the other type of care is not sufficient. Replacement can be either when informal care comes as an alternative to formal care or vice versa. Complementarity, on the other hand, is when formal and informal care overlap and unite. Many studies demonstrate that women, spouses and daughters, are considered the main informal caregivers of older people (16–18). Other researchers have pointed out that there is no gender difference in providing care and as men’s mortality declines, their role in caregiving is predicted to increase (19). However, men and women seem to experience their roles as caregivers in different ways, and men get more support from the environment when they are caregivers than women do (20, 21). In a British study, on couples’ provision of help to parents and parents-in-law, it was found that couples provided more help to the wives’ parents and that elderly mothers of the wives were most likely to receive any help, © 2014 Nordic College of Caring Science
803
followed by the husband’s mother, the woman’s father and the husband’s father (22). In this study, the care of older people with disability limitations will be analysed to shed light on who is the main provider of care with different tasks of instrumental activities of daily living (IADL), such as shopping, cleaning, washing and cooking, and the assistance with personal activities of daily living (PADL), such as clothing and feeding. We will also analyse the gender distribution of the main informal caregiver, his/her relation to the older care receiver and if informal and formal care replace or complement each other. The term help will be used when describing assistance with IADL, but the term care will be used when describing assistance with PADL. For further details on the care of older people in the Icelandic society, see Sigurðard ottir, Sundstr€ om, Malmberg and Ernsth Bravell (23). The first aim of this study is to shed light on the distribution of care, the proportion of older persons that receive only informal care, only formal care or both informal and formal care. This is discussed in the terms of replacement and complementarity. The second aim is to analyse the patterns of informal and formal IADL help and PADL care, and how help and care vary depending on the degree of limitations, the gender of the recipient and whether she/he is cohabitating or not. The third aim is to show who the main informal caregiver is, the gender of the care recipient and whether he/she is cohabiting or not.
Methods Sample In this study, the Icelandic Older People (ICEOLD) survey was used. ICEOLD is a nationally representative Icelandic study of home-dwelling persons aged 65 years and older. It was administered via telephone interviews to older individuals from a sample of 700 people aged 65–79 years old and 700 people aged 80+ years old, living in Iceland. After persons living in nursing homes had been excluded, the final sample consists of 1189 persons, to each of whom an introduction letter was sent. Of those who participated (n = 782), 341 were men and 441 were women, giving a response rate of 66%. There were only direct answers from the older person him/herself and no proxy answers. The survey was prepared in the autumn of 2008. Instrumental activities of daily living (IADL) refer to household chores such as shopping, cleaning, washing and cooking, while personal activities of daily living (PADL) refer to personal care such as coming out of bed, toilet visits, clothing and bathing (four IADL activities and four PADL activities). The information regarding IADL and PADL limitations is based on the older
804
S.H. Sigurdardottir, I. K areholt
participants’ responses to questions about how often they need help with the IADL activities and the PADL activities. The response options were coded as follows: (0) never, (1) seldom, (2) sometimes, (3) often or (4) always. To obtain approximate information on the total amount of ADL limitations, two indexes were created: one for IADL and one for PADL. Both indexes were created by adding the score for the amount of help needed for each of the ADL activities, thus obtaining an index ranging from 0 (no need for help with any of the activities) to 16 (always needing help with all activities). Participants with IADL or PADL limitations were also asked who the providers of help were. The question was asked twice: once for IADL help and once for PADL care. The response categories were as follows: (1) spouse, (2) other person living in the same household, (3) daughter not living in the same household, (4) son not living in the same household, (5) daughter-in-law not living in the same household, (6) son-in-law not living in the same household, (7) grandchild not living in the same household, (8) home help/home health care, (9) private home help, (10) neighbour or friend and (11) someone else. Several categories could be marked. The variables were first re-coded into informal caregivers (response categories 1–7 and 10) and formal caregivers (response categories 8, 9 and 11). We also used information about who was the main informal caregiver. The main informal caregivers were combined into the following categories to obtain information on their gender: (1) spouse, (2) daughter/daughter-in-law, (3) son/son-in-law or (4) other. In addition, information about socio-demographic variables such as gender, age, marital status, having children and household structure was used for the analyses.
Analyses Logistic regression was used to analyse the odds for informal and formal IADL help and informal and formal PADL care, respectively. SPSS 18.0 (SPSS Inc., Chicago, IL, USA) for Windows was used for statistical analyses. Persons 80+ have a higher probability of being included in the data because of the sampling design with equal number of persons being sampled in the age group 65–79 years old and 80+ years old. To adjust for this and to make the results representative for the Icelandic population 65+, the data have been weighted for the results presented in the Figures and Tables 2–4. The data used in Table 1 are unweighted because it is descriptive, and the data in Table 5 are unweighted because of few observations. Results in Figs 1 and 2 are based on moving averages from weighted data using three adjacent data points among those having a limitation score of two or more. Values for those with no limitations or the score of one on the limitation index are not included in the moving averages. For values from 3 to 10, the central data point
is given the weight 0.5, while the two surrounding data points have the weight 0.25 each. Here, the ‘weights’ are used to multiply with the proportions getting IADL help. For the endpoints, in this case, the scores 2 and 11+ IADL limitations, the moving averages are based on two data points given the weights 2/3 and 1/3, respectively. The moving averages are based on the weighted data (due to the sampling procedure). In Table 2, logistic regression is used to show factors related to informal and formal IADL help for men and women. For the informal IADL help, the factors age, degree of IADL limitation, cohabitation and formal IADL are used. For the formal IADL help, the factors age, degree of IADL limitation, IADL limitations squared (and divided by 10), cohabitation and informal IADL are used. For IADL limitations, both linear and squared terms are used in the models to capture the possibility of curvilinear changes in the odds with an increasing degree of IADL limitations. The linear term shows the linear association to IADL for the lower values of IADL limitation. The squared term shows how this association changes with increasing IADL limitations. This procedure was used because we observe a curvilinear pattern for formal IADL in Fig. 1. We have also tried to include IADL limitations squared for informal IADL, but as expected from Fig. 1, this did not increase the explanatory power of the model. We have also tried to include PADL both linear and squared terms when PADL was analysed, and age squared in all models, but including the squared terms did not improve the models with p < 0.15 for any of these factors.
Ethics The research project was reported to the Icelandic Data Protection Authority (Pers onuvernd) according to regulations (reg.nr. S4522). The older participants were contacted by telephone and informed that data collected would be analysed without identifying participants. After they had been reminded that participation was voluntary, those giving oral consent were included in the study.
Results The mean age of the sample was 77 years (76 years for men and 77 for women, weighted mean), with a range of 65–98 years of age (SD = 7.4). Of the respondents, 94% (n = 731) had children. The number of daughters providing help was 126, the number of daughters-in-law was four, the number of sons was 39, and the number of sons-in-law was two. About 60% of the sample had limitations with one or more instrumental activities of daily living (IADL), more men than women. About 10% had limitations with one or more personal activities of daily living (PADL), more women than men (Table 1). When only considering © 2014 Nordic College of Caring Science
Care of older people in Iceland
805
Table 1 Description of the sample Have IADL limitationsa
No limitations IADL (instrumental activities of daily living) (n = 766) Gender, n (%) Male 126 (37.8) Female 193 (44.6) Age (mean) 74.1 Living alone, n (%) 121 (38.5) Cohabiting, n (%) 198 (43.8) Limitations (mean)a 0 All n (%) 319 (41.6) Per cent among those with IADL limitations Male Female All (%)
No help
Formal help only
Informal help only
Both formal and informal
Total
5 (1.5) 5 (1.2) 80.1 6 (1.9) 4 (0.9) 3.0 10 (1.3) 2.4% 2.1% 2.2%
47 (14.1) 53 (12.2) 80.5 64 (20.4) 36 (8.0) 5.9 100 (13.1) 22.7% 22.1% 22.4%
123 (36.9) 120 (27.7) 76.9 73 (23.2) 170 (37.6) 6.0 243 (31.7) 59.4% 50.0% 54.4%
32 (9.6) 62 (14.3) 82.1 50 (15.9) 44 (9.7) 7.6 94 (12.3) 15.5% 25.8% 21%
333 (100) 433 (100) 76.9 314 (100) 452 (100) 3.6 766 (100) 207(100) 240(100) 447(100)
Have PADL limitationsa
No limitations PADL (personal activities of daily living) (n = 770) Gender, n (%) Male 308 (92.2) Female 386 (88.5) Age (mean) 76.2 Living alone, n (%) 279 (87.7) Cohabiting, n (%) 415 (91.8) Limitations (mean)a 0 All n (%) 694 (90.1) Per cent among those with PADL limitations Male Female All (%)
No help
Formal help only
Informal help only
Both formal and informal
Total
– – – – – – – – – –
11 (3.3) 21 (4.8) 83.1 21 (6.6) 11 (2.4) 4.9 32 (4.2) 42.3% 42.0% 42.1%
9 (2.7) 17 (3.9) 81.0 9 (2.8) 17 (3.8) 4.0 26 (3.4) 34.6% 34.0% 34.2%
6 (1.8) 12 (2.8) 83.1 9 (2.8) 9 (2.0) 5.8 18 (2.3) 23.1% 24.0% 23.7%
334 (100) 436 (100) 76.8 318 (100) 452 (100) 0.5 770 (100) 26(100) 50(100) 76(100)
a Limitations with IADL or PADL, based on the index of 4 variables for each limitation. Results based on the unweighted data.
those having IADL and/or PADL limitations, the mean age of the sample was 78.8 years: 77.2 years for men (n = 211) and 80.0 years for women (n = 246). Of those having IADL limitations, 2% had no IADL help (n = 10). A great majority of the persons with IADL limitations, 77% (n = 343), had either informal or formal IADL help, while 21% had both (n = 94). Among those having IADL limitation, 54% (n = 243) had only informal help with IADL, while those having only formal help with IADL constituted 22% (n = 100). The proportion of those with PADL limitations who received both informal and formal care was 24% (n = 18). Among those having PADL limitation, 34% (n = 26) had only informal help, while 42% (n = 32) received only formal care. Figure 1 shows the informal and formal IADL help provided to men and women separately according to IADL limitations. Persons who receive both formal and informal care are included in both groups. Data are moving © 2014 Nordic College of Caring Science
averages based on three adjacent data points among those having a limitation score of two or more. As shown in the figure, the effect of the amount of IADL limitations is different for men and women. All the men with the score of one on the index of IADL limitations (seldom having help with one IADL activity) received help from an informal help provider, but no help from formal help providers. The figure shows positive association between the degree of IADL limitations and informal IADL for men with a score of more than two on the index of IADL limitations. Among women, the amount of informal IADL help does not change with the degree of IADL limitations. There is a negative association between the degree of IADL limitations and formal IADL for men with a score of more than two on the index of IADL limitations. Among women, the association between the degree of IADL limitations and the formal IADL is positive. For men, the informal help increases with a higher degree of IADL limitations, while the formal help decreases.
1.12 (
doi: 10.1111/scs.12114
Informal and formal care of older people in Iceland Sigurveig H. Sigurdardottir PhD (Associate Professor)1,2 and Ingemar K areholt PhD (Associate Professor)2,3 1
Faculty of Social Work, School of Social Sciences, University of Iceland, Reykjavik, Iceland, 2Institute of Gerontology, School of Health Sciences, J€ onk€ oping University, J€ onk€ oping, Sweden and 3Aging Research Center, Karolinska Institutet and Stockholms University, Stockholm, Sweden
Scand J Caring Sci; 2014; 28; 802–811 Informal and formal care of older people in Iceland
Background: Even if older people in the Nordic countries living in their homes usually have good access to formal help, the family plays an important role. Few studies have looked at the distribution of informal and formal care and the interplay between these spheres. The aim of this study is to shed light on the distribution of care and to analyse the patterns of care depending on the degree of limitations, the gender of the recipient and whether she/he is cohabitating or not. Method and sample: The Icelandic survey ‘Icelandic Older People’ (ICEOLD) is a random nationally representative survey among persons 65+ living in their homes. Of those who participated (n = 782), 341 were men and 441 were women, giving a response rate of 66%. Findings: About 60% of the people investigated in the survey had limitations with instrumental activities of daily living (IADL), and 10% of people had limitations with personal activities of daily living (PADL). The
Introduction As nations get older, the interest on who is providing help and care to those with some limitations is an increasing subject within the gerontological literature (1–3). Older people within the Nordic states usually have good access to formal care provided by the state or the municipalities. The Nordic welfare model emphasises the right of all to services, independent of social status or financial situation. The care of older people holds a central position within the Nordic countries and is based on the principle of citizenship, which guarantees universal health care and personal social services, mostly financed through general taxation (4). But even though formal services are available, the informal care provided by Correspondence to: Sigurveig H. Sigurdardottir, Faculty of Social Work, School of Social Sciences, University of Iceland, Oddi v/Sturlugo¨tu, 101 Reykjavik, Iceland. E-mail: [email protected]
802
majority of the respondents with IADL or PADL limitations received either informal or formal help, but not both. When the IADL limitations increase, the informal care increases for men, but not for women, and the formal care increases for women, but decreases for men. Cohabiting men are much likelier to receive informal IADL help and less likely to receive formal help than men not cohabiting. Among women, corresponding differences are much smaller and not significant. When there is no spouse, the daughters help more than the sons and they help their mothers more than they help their fathers. Conclusion: More persons receive informal care than formal care, which shows the importance of the family. There is a gender difference in receiving care. Cohabitation is important for receiving informal care, especially for men. Keywords: old age, informal care, health and social care, gender, shared care. Submitted 10 October 2013, Accepted 28 December 2013
family and friends is an important factor in the total provision of care for older people (5–7). Informal care provided by family and friends and formal care provided by state and municipalities is often given in a complementary relationship to each other, especially when the need for assistance increases (7, 8). The formal and informal care have different characteristics and qualities, and they play different roles in the lives of older people. Both types of assistance have their place in the care situation, and some actions can better be handled by the informal caregivers and vice versa (9). The likelihood of older people receiving a combination of both informal and formal care depends on the needs of care. The different kinds of needs can be divided into IADL needs (instrumental activities of daily living), which refer to help with household chores such as cleaning and cooking, and PADL needs (personal activities of daily living), which refer to personal care such as clothing and feeding (1). In a study by Hellstr€ om and Hallberg (10), it was found that those receiving a combination of informal and formal care were older and needed significantly more help © 2014 Nordic College of Caring Science
Care of older people in Iceland with IADL and PADL. Those receiving informal care only were younger and more often married, and those receiving formal care only had help mostly with IADL tasks only, had fewer children and were more often living alone. It is more likely that relatives provide support with IADL rather than PADL care, suggesting that when the need for help with PADL increases, the formal care becomes more important (11, 12). Complementarity versus substitution can be discussed both in a macro-perspective (3, 13) and in a micro (individual)-perspective (1, 14). K€ unemund and Rein (15) use the terms ‘crowding out’, when the state displaces the family by taking over some of the tasks the family used to handle, and ‘crowding in’, when the support of the family increases when the welfare system provides more support. Their results indicate that ‘the crowding in’ effects are more likely, meaning that diverse services offered by the welfare state could cause an increase in the family support. Other studies emphasise that well-organised formal services complement rather than substitute, giving the family more time to pursue other kinds of activities such as contacting officials and providing emotional support (7, 16). Results from the European study SHARE (Survey of Health, Ageing and Retirement in Europe) indicate that on the individual level, the informal care is a substitute for formal low-skilled home help (paid domestic help), but is complementary to high-skilled home care (nursing/ personal care), meaning that the informal help compensates the formal, but there is no substitution effect when the need for assistance increases (8). As the concept of substitution is commonly used at a macro-level and we are analysing data at the micro-level, we prefer to use the verb replacement instead of substitution and contrast that to complementarity. On a micro-level, we define replacement as when either the formal or informal care is taking the place of the other type of care when the other type of care is not sufficient. Replacement can be either when informal care comes as an alternative to formal care or vice versa. Complementarity, on the other hand, is when formal and informal care overlap and unite. Many studies demonstrate that women, spouses and daughters, are considered the main informal caregivers of older people (16–18). Other researchers have pointed out that there is no gender difference in providing care and as men’s mortality declines, their role in caregiving is predicted to increase (19). However, men and women seem to experience their roles as caregivers in different ways, and men get more support from the environment when they are caregivers than women do (20, 21). In a British study, on couples’ provision of help to parents and parents-in-law, it was found that couples provided more help to the wives’ parents and that elderly mothers of the wives were most likely to receive any help, © 2014 Nordic College of Caring Science
803
followed by the husband’s mother, the woman’s father and the husband’s father (22). In this study, the care of older people with disability limitations will be analysed to shed light on who is the main provider of care with different tasks of instrumental activities of daily living (IADL), such as shopping, cleaning, washing and cooking, and the assistance with personal activities of daily living (PADL), such as clothing and feeding. We will also analyse the gender distribution of the main informal caregiver, his/her relation to the older care receiver and if informal and formal care replace or complement each other. The term help will be used when describing assistance with IADL, but the term care will be used when describing assistance with PADL. For further details on the care of older people in the Icelandic society, see Sigurðard ottir, Sundstr€ om, Malmberg and Ernsth Bravell (23). The first aim of this study is to shed light on the distribution of care, the proportion of older persons that receive only informal care, only formal care or both informal and formal care. This is discussed in the terms of replacement and complementarity. The second aim is to analyse the patterns of informal and formal IADL help and PADL care, and how help and care vary depending on the degree of limitations, the gender of the recipient and whether she/he is cohabitating or not. The third aim is to show who the main informal caregiver is, the gender of the care recipient and whether he/she is cohabiting or not.
Methods Sample In this study, the Icelandic Older People (ICEOLD) survey was used. ICEOLD is a nationally representative Icelandic study of home-dwelling persons aged 65 years and older. It was administered via telephone interviews to older individuals from a sample of 700 people aged 65–79 years old and 700 people aged 80+ years old, living in Iceland. After persons living in nursing homes had been excluded, the final sample consists of 1189 persons, to each of whom an introduction letter was sent. Of those who participated (n = 782), 341 were men and 441 were women, giving a response rate of 66%. There were only direct answers from the older person him/herself and no proxy answers. The survey was prepared in the autumn of 2008. Instrumental activities of daily living (IADL) refer to household chores such as shopping, cleaning, washing and cooking, while personal activities of daily living (PADL) refer to personal care such as coming out of bed, toilet visits, clothing and bathing (four IADL activities and four PADL activities). The information regarding IADL and PADL limitations is based on the older
804
S.H. Sigurdardottir, I. K areholt
participants’ responses to questions about how often they need help with the IADL activities and the PADL activities. The response options were coded as follows: (0) never, (1) seldom, (2) sometimes, (3) often or (4) always. To obtain approximate information on the total amount of ADL limitations, two indexes were created: one for IADL and one for PADL. Both indexes were created by adding the score for the amount of help needed for each of the ADL activities, thus obtaining an index ranging from 0 (no need for help with any of the activities) to 16 (always needing help with all activities). Participants with IADL or PADL limitations were also asked who the providers of help were. The question was asked twice: once for IADL help and once for PADL care. The response categories were as follows: (1) spouse, (2) other person living in the same household, (3) daughter not living in the same household, (4) son not living in the same household, (5) daughter-in-law not living in the same household, (6) son-in-law not living in the same household, (7) grandchild not living in the same household, (8) home help/home health care, (9) private home help, (10) neighbour or friend and (11) someone else. Several categories could be marked. The variables were first re-coded into informal caregivers (response categories 1–7 and 10) and formal caregivers (response categories 8, 9 and 11). We also used information about who was the main informal caregiver. The main informal caregivers were combined into the following categories to obtain information on their gender: (1) spouse, (2) daughter/daughter-in-law, (3) son/son-in-law or (4) other. In addition, information about socio-demographic variables such as gender, age, marital status, having children and household structure was used for the analyses.
Analyses Logistic regression was used to analyse the odds for informal and formal IADL help and informal and formal PADL care, respectively. SPSS 18.0 (SPSS Inc., Chicago, IL, USA) for Windows was used for statistical analyses. Persons 80+ have a higher probability of being included in the data because of the sampling design with equal number of persons being sampled in the age group 65–79 years old and 80+ years old. To adjust for this and to make the results representative for the Icelandic population 65+, the data have been weighted for the results presented in the Figures and Tables 2–4. The data used in Table 1 are unweighted because it is descriptive, and the data in Table 5 are unweighted because of few observations. Results in Figs 1 and 2 are based on moving averages from weighted data using three adjacent data points among those having a limitation score of two or more. Values for those with no limitations or the score of one on the limitation index are not included in the moving averages. For values from 3 to 10, the central data point
is given the weight 0.5, while the two surrounding data points have the weight 0.25 each. Here, the ‘weights’ are used to multiply with the proportions getting IADL help. For the endpoints, in this case, the scores 2 and 11+ IADL limitations, the moving averages are based on two data points given the weights 2/3 and 1/3, respectively. The moving averages are based on the weighted data (due to the sampling procedure). In Table 2, logistic regression is used to show factors related to informal and formal IADL help for men and women. For the informal IADL help, the factors age, degree of IADL limitation, cohabitation and formal IADL are used. For the formal IADL help, the factors age, degree of IADL limitation, IADL limitations squared (and divided by 10), cohabitation and informal IADL are used. For IADL limitations, both linear and squared terms are used in the models to capture the possibility of curvilinear changes in the odds with an increasing degree of IADL limitations. The linear term shows the linear association to IADL for the lower values of IADL limitation. The squared term shows how this association changes with increasing IADL limitations. This procedure was used because we observe a curvilinear pattern for formal IADL in Fig. 1. We have also tried to include IADL limitations squared for informal IADL, but as expected from Fig. 1, this did not increase the explanatory power of the model. We have also tried to include PADL both linear and squared terms when PADL was analysed, and age squared in all models, but including the squared terms did not improve the models with p < 0.15 for any of these factors.
Ethics The research project was reported to the Icelandic Data Protection Authority (Pers onuvernd) according to regulations (reg.nr. S4522). The older participants were contacted by telephone and informed that data collected would be analysed without identifying participants. After they had been reminded that participation was voluntary, those giving oral consent were included in the study.
Results The mean age of the sample was 77 years (76 years for men and 77 for women, weighted mean), with a range of 65–98 years of age (SD = 7.4). Of the respondents, 94% (n = 731) had children. The number of daughters providing help was 126, the number of daughters-in-law was four, the number of sons was 39, and the number of sons-in-law was two. About 60% of the sample had limitations with one or more instrumental activities of daily living (IADL), more men than women. About 10% had limitations with one or more personal activities of daily living (PADL), more women than men (Table 1). When only considering © 2014 Nordic College of Caring Science
Care of older people in Iceland
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Table 1 Description of the sample Have IADL limitationsa
No limitations IADL (instrumental activities of daily living) (n = 766) Gender, n (%) Male 126 (37.8) Female 193 (44.6) Age (mean) 74.1 Living alone, n (%) 121 (38.5) Cohabiting, n (%) 198 (43.8) Limitations (mean)a 0 All n (%) 319 (41.6) Per cent among those with IADL limitations Male Female All (%)
No help
Formal help only
Informal help only
Both formal and informal
Total
5 (1.5) 5 (1.2) 80.1 6 (1.9) 4 (0.9) 3.0 10 (1.3) 2.4% 2.1% 2.2%
47 (14.1) 53 (12.2) 80.5 64 (20.4) 36 (8.0) 5.9 100 (13.1) 22.7% 22.1% 22.4%
123 (36.9) 120 (27.7) 76.9 73 (23.2) 170 (37.6) 6.0 243 (31.7) 59.4% 50.0% 54.4%
32 (9.6) 62 (14.3) 82.1 50 (15.9) 44 (9.7) 7.6 94 (12.3) 15.5% 25.8% 21%
333 (100) 433 (100) 76.9 314 (100) 452 (100) 3.6 766 (100) 207(100) 240(100) 447(100)
Have PADL limitationsa
No limitations PADL (personal activities of daily living) (n = 770) Gender, n (%) Male 308 (92.2) Female 386 (88.5) Age (mean) 76.2 Living alone, n (%) 279 (87.7) Cohabiting, n (%) 415 (91.8) Limitations (mean)a 0 All n (%) 694 (90.1) Per cent among those with PADL limitations Male Female All (%)
No help
Formal help only
Informal help only
Both formal and informal
Total
– – – – – – – – – –
11 (3.3) 21 (4.8) 83.1 21 (6.6) 11 (2.4) 4.9 32 (4.2) 42.3% 42.0% 42.1%
9 (2.7) 17 (3.9) 81.0 9 (2.8) 17 (3.8) 4.0 26 (3.4) 34.6% 34.0% 34.2%
6 (1.8) 12 (2.8) 83.1 9 (2.8) 9 (2.0) 5.8 18 (2.3) 23.1% 24.0% 23.7%
334 (100) 436 (100) 76.8 318 (100) 452 (100) 0.5 770 (100) 26(100) 50(100) 76(100)
a Limitations with IADL or PADL, based on the index of 4 variables for each limitation. Results based on the unweighted data.
those having IADL and/or PADL limitations, the mean age of the sample was 78.8 years: 77.2 years for men (n = 211) and 80.0 years for women (n = 246). Of those having IADL limitations, 2% had no IADL help (n = 10). A great majority of the persons with IADL limitations, 77% (n = 343), had either informal or formal IADL help, while 21% had both (n = 94). Among those having IADL limitation, 54% (n = 243) had only informal help with IADL, while those having only formal help with IADL constituted 22% (n = 100). The proportion of those with PADL limitations who received both informal and formal care was 24% (n = 18). Among those having PADL limitation, 34% (n = 26) had only informal help, while 42% (n = 32) received only formal care. Figure 1 shows the informal and formal IADL help provided to men and women separately according to IADL limitations. Persons who receive both formal and informal care are included in both groups. Data are moving © 2014 Nordic College of Caring Science
averages based on three adjacent data points among those having a limitation score of two or more. As shown in the figure, the effect of the amount of IADL limitations is different for men and women. All the men with the score of one on the index of IADL limitations (seldom having help with one IADL activity) received help from an informal help provider, but no help from formal help providers. The figure shows positive association between the degree of IADL limitations and informal IADL for men with a score of more than two on the index of IADL limitations. Among women, the amount of informal IADL help does not change with the degree of IADL limitations. There is a negative association between the degree of IADL limitations and formal IADL for men with a score of more than two on the index of IADL limitations. Among women, the association between the degree of IADL limitations and the formal IADL is positive. For men, the informal help increases with a higher degree of IADL limitations, while the formal help decreases.
1.12 (
