Ageing in place together : older parents and ageing offspring with intellectual disability

This is a self-archived version of an original article. This version may differ from the original in pagination and typographic details. Author(s): Title: Year: Version: Copyright: Rights: Rights url: Please cite the original version: CC BY-NC-ND 4.0 https://creativecommons.org/licenses/by-nc-nd/4.0/ Ageing in place together : older parents and ageing offspring with intellectual disability © 2020 Cambridge University Press Accepted version (Final draft) Chou, Yueh-Ching; Kröger, Teppo Chou, Y.-C., & Kröger, T. (2022). Ageing in place together : older parents and ageing offspring with intellectual disability. Ageing and Society, 42(2), 480-494. https://doi.org/10.1017/S0144686X20001038 2022 1 Ageing in place together: Older parents and ageing offspring with intellectual disability Yueh-Ching Chou, PhD1, *, ** and Teppo Kröger, PhD2 1 Institute of Health and Welfare Policy, National Yang-Ming University, Taiwan. 2 Department of Social Sciences and Philosophy, University of Jyväskylä, Finland. *Address correspondence to Yueh-Ching Chou, PhD, Institute of Health and Welfare Policy, National Yang-Ming University, N. 155, Li-Nong St., Sec.2, Peitou, Taipei, 11200 Taiwan. E-mail: [email protected] **ORCID: https://orcid.org/0000-0002-1807-3617 Abstract Limited research has been conducted about ageing in place among older parents who cohabit with their ageing offspring with intellectual disability (ID). This study aims to explore which older parents would choose ageing in place together with their ageing offspring with ID instead of moving and what factors are associated with this choice. A face -to- face interview was conducted using the ‘housing pathways’ framework with older parents (≥ 60 years) cohabiting with their ageing offspring with ID (≥ 40 years) from two local authorities in Taiwan. In total 237 families completed our census survey between June and September 2015. The results showed that 61.6 per cent of the participants would choose ageing in place with their ageing offspring with ID, while 38.4 per cent of the participants would stay in their previous place without their disabled children, move in with their other children or move to a nursing home. Logistic regression analyses revealed that parents who preferred ageing in place together with their offspring with ID were more likely to own a house (‘personal control’), have higher levels of life satisfaction (‘self-esteem’) and satisfaction with their current community (‘self-identity’), and have a lower level of social support than parents who chose another option. To meet the needs of older parents and their ageing offspring with ID, care and housing transitions should be considered as part of long-term care policy. 2 Keywords: intellectual disability, older parents, ageing in place, long-term care, Housing Pathways, Taiwan Introduction Moving in old age, relocation and housing transition have become significant issues in debates about ‘ageing in place’, as they relate not only to research but also to policies on health, social and residential care in an ageing society (Golant 2003; Jolanki and Vilkko 2015; Means 2007; Moore 2000). People with intellectual disability (ID) live much longer than they did in the past, resulting in an expanding population of parents who are continuing to care for a son or daughter into old age (Emerson and Hatton 2004). Despite the policies that exist and the research that has been conducted to date, both health and social service providers typically lack an in-depth understanding of the needs of these older parents and their ageing offspring with ID (Baumbusch et al. 2017; Hubert and Hollins 2000). The choice between moving in old age and ageing in place can be more complex for older parents caring for an ageing son/daughter with ID than for older people who have no offspring with disability, because these older parents need to manage not just their own but also their offspring’s ageing matters, such as transition plans for their offspring’s housing and care needs. With regard to older parents who still live with their offspring with ID, previous studies have mostly focused on these parents’ future care plans of their disabled children (Jokinen and Brown 2005; Walker and Hutchinson 2019). Care and housing transitions among these older parents and their ageing offspring with ID are rarely seen as parts of a whole, taking into account the needs of both generations, older parents and their disabled offspring. In Taiwan, similar to many other countries, the percentage of individuals aged 65 years and over has risen dramatically in recent years, and ageing issues have become key health 3 and social care concerns in society (Chou, Kröger and Pu 2015). Since 2000, ‘ageing in place’ has been a central goal of the long-term care (LTC) policy for older people in Taiwan (Wu and Chuang 2001). However, similar to other countries, older people with ageing sons/daughters with ID are overlooked by Taiwan’s LTC policies, although, as in many countries (Braddock et al. 2001; Weeks et al. 2009), the overwhelming majority (93%) of Taiwanese citizens with ID live with their family in the community (Ministry of Health and Welfare, Taiwan 2018). Nevertheless, while national surveys of people aged 55+ years are conducted regularly in Taiwan, there is no empirical data available concerning ageing issues and living arrangements for ageing adults with ID and their older parents. For the general population of older people, several Western and Taiwanese studies have discussed ageing in place and residential options. Based on Western studies (Means and Evans 2012; Robison and Moen 2000; Schmertmann et al. 2000), variables that are related to older people’s choices in housing transitions (ageing in place, coresidence with children or relocating) include the following: age, gender, presence of a spouse in the household, education level, living environment (urban vs. rural), ownership of housing, community participation, health and culture. In Taiwan, despite the ongoing decline in coresidence with children among older people, over half of older people still prefer living with their children later in life, which is a higher proportion than seen in Europe, Japan and South Korea (Directorate-General of Budget, Accounting and Statistics, Executive Yuan, Taiwan 2006). In addition to the variables identified in Western studies, financial condition is another strong predictor of housing transitions among older Taiwanese people (Chang and Chang 2010; Chen and Lin 2010; Tseng, Chang and Chen 2006). For people with ID in old age, the following moving alternatives exist: moving to a nursing home for older people (Thompson, Ryrie and Wright 2004; Bower and Bigby 2014), moving to a residential setting for people with ID, moving to a siblings’ home, moving to 4 somewhere else or ageing in place and staying with their parents. Care and housing transitions for ageing adults with ID and their older parents need to be considered as a whole, meaning as a transition for an ‘older two-generation family’, in order to meet the needs of both the older parents and their ageing offspring with ID. Recently, the needs of older parents with ageing offspring with ID have received attention from parental groups concerned with limited housing options for both parents and their ageing offspring with ID in Taiwan. Terms such as ‘older two-generation apartments’ (Wang 2011) or ‘same institutions for people with ID and the elderly’ (Cheng, Chen and Yen 2004) have been raised in this discussion. A qualitative study (Chou, Lee and Wang 2018), which interviewed older parents cohabiting with an ageing son/daughter with ID in Taiwan, found that these older parents’ preferences to either age in place or move were connected to the family and cultural contexts. However, quantitative data on these connections has been lacking in Taiwan, as in many other countries. To analyse the decision-making process regarding moving or not moving, Clapham (2005) developed the concept of ‘housing pathways’, which includes the following four domains: personal control, identity and self-esteem, social support and inequality. According to Clapham (2002, 2010), personal control can be defined as ‘feeling in control of one’s housing circumstances and the process of achieving one’s goals’ (p. 260). The meaning of home for people is linked to their individual experiences of security, positive identity and self-esteem, which are associated with a sense of the ability to cope and a sense of ownership; identity comprises both self-identity and social identity. Social support can be provided by family and close friends but also by health and social care professionals. In the framework, inequality is seen as social exclusion and a lack of resources, which have an effect on the chance to be in control of one’s life and self-esteem. 5 In this study, the ‘housing pathways’ framework (Clapham 2002, 2010) is employed to explore which older parents would choose ageing in place together with their ageing offspring with ID instead of other options and what factors are associated with this choice. We hypothesise that older parents’ choice of ageing in place together with their ageing offspring with ID is associated with the four domains of the housing pathways framework. Methods A survey was completed through a face-to-face interview in this study, and all potential participants were invited to take part. Data collection and Participants The participants in this survey study were older parents from older two-generation families that included parents aged ≥ 60 years and their ageing offspring with ID aged ≥ 40 years who were cohabiting in the same household. The families were recruited from two local authorities, H City and W County, which are located in the northwestern and northeastern parts of Taiwan, respectively. In general, H City is a wealthy city with a relatively younger population and better welfare system than the rest of Taiwan. In contrast, W County is a more remote area and has a higher proportion of ageing population than other local authorities in Taiwan. In Taiwan, disability welfare benefits are available only to those who are assessed by the local government, determined to have a disability and provided with a disability certificate. From the two local governments, based on their disability assessments, we received a list of people with ID, including information on their age, sex, address, telephone number, level of ID, whether they used residential service and whether they had multiple disabilities (MD) in addition to their ID. However, we were not told which of them were cohabiting with older parents. 6 Because of this limitation, we screened all those citizens in the two local authorities who were listed as having ID or MD + ID, being aged ≥ 40 years and not using residential service. In order to attain the participants’ trust, first, the principal researcher’s university and the city/county government posted a notification and invitation letter to all these families. The screening involved making a telephone call to each individual with ID (or MD + ID) aged ≥ 40 years. Through the phone conversation, we confirmed whether the individual with ID (or MD + ID) was living with at least one parent aged ≥ 60 years. If this was the case, the family fit the criteria and was invited to join our study and asked whether they would allow us to interview them at home. In those families where both the father and the mother were aged ≥ 60 years and cohabitating with their offspring with ID, only the mother was invited to participate in our survey as most often mothers were primary family carers in these families. Structured interviews were then conducted at the participants’ home by one of the trained interviewers (15 working in H City and 13 working in W County) who read through the questionnaire and recorded the answer to each question. All of the interviewers had completed six hours of interviewer training prior to beginning the survey interviews. During the data collection, three senior social workers working with people with ID were employed to supervise the interviewers, review the data, check for missed questions or answers, and make corrections to the questionnaires that the interviewers completed. Ethical approval for the study was obtained from the Research Ethics Board at the National Yang-Ming University (IRB: YM103016F); all participants were informed of the study’s details and signed an informed consent form. In H City, there were 589 individuals listed with ID (517 with ID and 72 with MD + ID) aged ≥ 40, and of those, 195 fit the criteria of our study; 161 (45 fathers and 117 mothers) of them completed the study (response rate 82.6%). In W County, 795 individuals were listed, and 102 met the sampling criteria; 76 (13 fathers and 63 mothers) completed our study 7 (response rate 74.5%). Overall, 237 older parents of ageing people with ID took part in this survey between June and December 2015 (response rate 79.8%) (for details, see Figure 1). Among the participants, 45.6 per cent were married, the family having both the father and the mother alive. 75.9 per cent of the interviewees were mothers and 24.1 per cent were fathers. The mean age of their offspring with ID was 48.6 years (SD = 6.5, range: 40-74), and 62.0 per cent were male. The mean age of the parents who were interviewed was 75.4 years (SD=8.0, range: 60-99), and 84.4 per cent had received no formal education or attended only primary school. Among the families, 73.8 per cent lived in an urban area, 11.4 per cent hired a live-in migrant care worker, and 83.5 per cent owned the house/flat where they lived. A very small proportion of the older parents (4.6%) and their ageing offspring with ID (14.8%) were using any social services (e.g. daycare, home care). Most (82.7%) of these older parents reported that they did not have any formal or informal social support or that if they did, it was not helpful. Half of the older parents (50.2%) reported that they had a poor or very poor health condition. Over half (56.9%) of the families had a monthly income of less than US$700. In general, the participants were satisfied with their living community (74.0%) but not with their life (11.0%) (see Table 1). <Please insert Table 1 about here> Dependent Variable Ageing in place together was measured by two questions. The first question was, ‘What will be your future living arrangement when you are disabled?’ (1 = not moving, 2 = move in with a sibling (of the offspring with ID), 3 = move in with more than one sibling, 4= move to a place close to siblings, 5 = move to residential setting, 6 = never thought about it, and 7 = have thought about it but have no idea). The participants who replied 1 (not moving) to the first question were then asked the following question, ‘You have replied that you will not 8 move when you are disabled. What about your son/daughter with ID? Will she/he continue to stay with you here when she/he gets old?’ (1= yes, 2= no). If the parent replied ‘yes’, the answer was coded as ‘ageing in place together’. All the other answers to the above questions were coded as ‘other’. Explanatory Variables The explanatory variables include the four domains of Clapham’s (2010) housing pathways framework as discussed above. Personal control was defined by the following questionnaire item: ‘Does the house/apartment belong to your family (i.e. the participants or their children)?’, and the answer was coded as ‘yes’ and ‘no’ (the latter includes ‘It is rented’ and ‘It belongs to other relatives or an employer’). Positive self-identity was measured by the following question: ‘Are you satisfied with your current living community, e.g. the area and the image of it?’ and was rated by five ordinal categories from very dissatisfied (1) to very satisfied (5). Positive social identity was defined by a question that asked, ‘Are you willing to tell people where you live?’ and was rated by five ordinal categories from very unwilling (1) to very willing (5). The participants’ self-esteem was measured by the following question: ‘In general, are you satisfied with your current life?’ and was rated by five ordinal categories from very dissatisfied (1) to very satisfied (5). Social support, including formal and informal support, was measured using a translated local version of the Family Support Scale (Dunst, Jenkins and Trivette 1984). A higher score indicates greater support (α = .71 in this study). Inequality was defined based on the participants’ demographic and socioeconomic variables including the level of disability of the offspring with ID (based on the assessment 15 detect certain effects, for example, correlations between the explanatory variables and ageing in place together with ageing offspring with ID. Third, this study was cross-sectional and is unable to reveal cause-and-effect relationships; therefore, the results cannot show the direction of the association between the explanatory variables and the dependent variable. A longitudinal study is desirable in the future. Last, the definitions of the four domains of housing pathways in this study could be discussed in future studies, in particular by studies conducted in other countries with different cultural contexts. Despite the above limitations, the findings of this study contribute to knowledge related to moving or ageing in place among the group of older people who cohabit with their ageing offspring with ID. Furthermore, these findings extend beyond the housing pathways approach, which focuses on individual older persons’ decision making about moving or ageing in place and suggest that older parents cohabiting with their ageing offspring with ID should be viewed as a whole in terms of both policies and research on ageing. Consequently, LTC policy should pay special attention to those older two-generation families that cannot afford formal care or the cost of a migrant care worker and who are now ageing in place together. For these families, ageing in place may not be the best choice but rather the only available choice. Acknowledgements The authors would like to thank all the parents who have generously given their time to our research. Author contribution Y-CC designed the study, collected and analyzed the data and wrote the paper; TK assisted in designing the study, discussing, writing and revising the paper. 16 Financial support This work was supported by the Ministry of Science and Technology, Taiwan (MOST 104- 2410-H-010-008-SS2) and the Academy of Finland (CoE AgeCare 312303). Conflict of Interest The authors declare no conflicts of interest. Ethical standards Ethical approval for the study was obtained from the Research Ethics Board at National Yang-Ming University (IRB: YM103016F). References Aldwin, C. M., Sutton, K. J., Chiara, G. and Spiro, A. III. 1996. Age differences in stress, coping, and appraisal: findings from the normative aging study. 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Journal of Long-Term Care, 18, 95-112. doi:10.6317/LTC.18.95 [in Chinese] Wu, S. C. and Chuang, K. Y. 2001. Aging in Place: the direction of Taiwan long-term care policy in the 21st century. Taiwan Journal of Public Health, 20, 192-201. doi.org/10.6288/TJPH2001-20-03-05 [in Chinese] Yang, P. S. 2005. The institutional care for older persons and the related social services in Taiwan. Taiwanese Social Work, 4, 148-169. doi:10.29814/TSW.200507.0006 [in Chinese] Address for correspondence : Yueh-Ching Chou, Institute of Health and Welfare Policy, National Yang-Ming University, N.155, Li-Nong St., Sec.2, Peitou, Taipei, 11200 Taiwan E-mail: [email protected]