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Self-reported needs among older persons with intellectual disabilities in an Irish community-based service
Research in Developmental Disabilities 31 (2010) 381–387
Contents lists available at ScienceDirect
Research in Developmental Disabilities
Self-reported needs among older persons with intellectual disabilities in an Irish community-based service Darragh McCausland a, Suzanne Guerin a,*, Janette Tyrrell b, Clare Donohoe c, Isabelle O’Donoghue b, Philip Dodd b,d,e a
School of Psychology, University College Dublin, Belfield, Dublin 4, Ireland Saint Michael’s House, Ballymun Road, Dublin 17, Ireland Our Lady’s Children’s Hospital, Crumlin, Dublin 12, Ireland d Department of Psychiatry, University of Dublin, Trinity College, Dublin, Ireland e Department of Psychiatry, Royal College of Surgeons in Ireland, Dublin, Ireland b c
A R T I C L E I N F O
A B S T R A C T
Article history: Received 29 September 2009 Accepted 1 October 2009
Current research indicates that older persons with intellectual disabilities (ID) are a growing population with very specific needs. There are few existing studies that identify and characterise these needs. This study aimed to assess the health and social care needs of a group of older persons with ID in a community-based service in Ireland. The Camberwell Assessment of Need for Adults with Intellectual Disabilities-Short form (CANDID-S) was used to identify the health and social needs of 75 older persons with ID in a communitybased service who were over the age of 50. The mean age of the sample was 57.6 years (SD = 5.4, range 50–72) and 37.3% had mild ID, 46.7% had moderate ID and 16% had severe or profound ID. The most common ‘unmet needs’ reported were basic education and money budgeting (the ability to independently manage one’s own finances). The top-rated ‘met needs’ were food and daytime activities. Participants with severe or profound ID reported significantly more ‘unmet needs’ than those with mild or moderate ID. The current study identified education and financial skills as unmet needs for older persons with ID, implying that continuing lifelong learning programmes might be a valuable and appropriate addition to service provision and retirement options. Further research should be carried out to inform a comprehensive evidence base of the health and social care needs of this group. ß 2009 Elsevier Ltd. All rights reserved.
Keywords: Aging Intellectual disability Needs Self-report CANDID-S
1. Introduction Advances in medicine, health care and nutrition have resulted in adults with intellectual disabilities (ID) living longer. In one American study, the life expectancy of adults with ID (excluding those with Down’s Syndrome) was found to be between 70 and 74 years (Strauss & Eyman, 1996). A more recent longitudinal study (Patja, Livanainen, Vesala, Oksanen & Ruoppila, 2000) found that Finnish people with mild ID aged between 2 and 10 years old in 1963 had a longer expected life-span than the general population (69.3 versus 67.1 years). Those with moderate, severe and profound ID were given expected lifespans of 58.6, 63.2 and 50.8 years, respectively (Patja et al., 2000). A similar Australian study (Bittles et al., 2002) calculated average life-spans of 74.0, 67.6 and 58.6 for people with mild, moderate and severe ID. According to the National Intellectual
* Corresponding author. Tel.: +353 1 7168490; fax: +353 1 7161180. E-mail address: [email protected] (S. Guerin). 0891-4222/$ – see front matter ß 2009 Elsevier Ltd. All rights reserved. doi:10.1016/j.ridd.2009.10.005
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Disability Database (Kelly, Kelly & Craig, 2007) in Ireland, the combined proportion of people with ID aged over 35 years rose from 28.5% to 48.0% between 1974 and 2007. Also, according to the report, nearly half of those with a moderate, severe or profound ID are over 35 years of age. Taken together these findings demonstrate the increasing age profile of older persons with ID. However, as yet, there is little evidence-based research investigating the age-related needs of this growing population. Xenitidis et al. (2000) describes need as the requirements of individuals to help them achieve acceptable quality of life. These needs can be broken down into health (both physical and mental) and social care needs (Hogg, Lucchino, Wang & Janicki, 2001). It would appear that as adults with ID live longer, their health and social care needs to some extent mirror those of a general ageing population (Evenhuis, Henderson, Beange, & Lennox, 2001; Hogg et al., 2001). Such needs include the need for suitable retirement options, bereavement supports, the need to maintain social networks, the need for quality healthcare and the need for suitable accommodation (American Association on Mental Retardation, 2005; Bigby, 2008; Janicki & Dalton, 1999; Jokinen, 2005; O’Rourke, Grey, Fuller, & McClean, 2004). However, older persons with ID also have needs that differ from the general population, which may be related to risk factors among the population such as a higher prevalence of sensory and motor impairments (Evenhuis et al., 2001), increased risk of dementia (Cooper, 1997), and increased prevalence of psychiatric symptoms such as depression, anxiety and delirium (Chance, 2006; Hogg et al., 2001; Janicki & Dalton, 1999; Tyrrell & Dodd, 2003; Whitaker & Read, 2006). Additionally, older persons with ID are more likely to come from lower socioeconomic backgrounds and are therefore at an increased risk of the poorer health associated with this background (Graham, 2005). Currently, there is an increasing focus on the needs of older persons with ID (Hatzidimitriadou & Milne, 2005; Walsh, 2005). Indeed, in 2001 the World Health Organisation (WHO) made the physical health, mental health and social needs of older persons the focus of a number of reports drawn up in association with the International Association for the Scientific Study of Intellectual Disabilities (IASSID) to inform international policy (Evenhuis et al., 2001; Hogg et al., 2001; Thorpe, Davidson, & Janicki, 2001; Walsh et al., 2001). Although published in 2001, these reports remain the most comprehensive overview of age-related need. In spite of the policy laid out in the WHO reports to date, there are still few studies identifying the needs of older persons with ID (Hatzidimitriadou & Milne, 2005). In one of the few recent studies, Strydom, Hassiotis and Livingston (2005) described the mental health needs as well as general health and social care needs of a group of 23 adults with ID aged 65 and over. As part of their assessment, the authors used the Camberwell Assessment of Need for Adults with Intellectual Disabilities-Short Form (CANDID-S) (Xenitidis et al., 2000) to identify participants’ needs across 25 domains that covered mental health, physical health and social care. The CANDID-S was specifically designed for use with adults with ID and mental health problems (Xenitidis et al., 2000). However, the authors deemed it useful as a measure for use in a general ageing population with ID because of the wide scope of its domains. Additionally, its use was validated as a measure of need for such a population by Strydom et al. (2005) who found it to be a suitable and comprehensive measure of need for this group. It is clear that although increasingly more research describes the needs of older persons with ID, the overall evidence base remains significantly less complete than that for younger persons (Hatzidimitriadou & Milne, 2005). In order to best inform planning decisions and service development for this group it is imperative to continue building a research-informed evidence base identifying their needs. Moreover, in order to best inform person-centred services, it is imperative to include service users’ own perspectives when researching their needs. Using the CANDID-S, the present investigation aims to identify and describe the health and social care needs of a group of 75 adults with ID who are over the age of 50. The study aims not only to identify the areas in which they have needs (whether met or not met by current services), but also to compare the self-reported needs across levels of disability. 2. Method 2.1. Research design The study used an independent groups design, which includes the independent variable of levels of ID (mild, moderate and severe/profound). Participants’ identified needs were compared across these groups. 2.2. Research context The current study was conducted in a large urban community-based ID service for individuals with ID, which provides both residential and day services. At the time of study it provided services for over 1500 individuals, 176 of which were over the age of 50 years. 2.3. Sampling and participants At the time of the assessment there were 176 adults over the age of 50 listed on the service provider’s database. A sample of 81 older persons was recruited to take part. The selection process was not purely random. It was stratified in that preference was given to day services or residential services with a higher proportion of service users over the age of 50
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present. This stratification was applied in order to reduce the time involved in conducting the interviews. Service users were selected randomly from within the day and residential services. Six individuals (7.4%) chose not to give their consent, leaving a total of 75 consenting participants. The consenting participants’ mean age was 57.6 years with a standard deviation of 5.4 (range: 50–72 years). A total of 41(54.7%) of the participants were female and 34 (45.3%) were male. In addition, 28 (37.3%) participants had mild ID, 35 participants (46.7%) had moderate ID, while 12 participants (16%) had severe or profound ID. 2.4. Materials The Camberwell Assessment of Needs for Adults with Intellectual Disabilities-Short Form (CANDID-S, Xenitidis, Slade, Thornicroft, & Bouras, 2003) was used to rate participants’ needs. The CANDID-S rates needs across 25 different domains covering quality of life, mental health, physical health and social needs. The current study is concerned only with the first section of the CANDID-S. In this section, for each of the 25 domains, the respondent is classified as having either ‘no serious need’ (where there is no serious problem in the area and no formal and/or informal help required), a ‘met need’ (where there is no problem or only a moderate problem in the area due to the level of formal and/or informal help given) or an ‘unmet need’ (where a serious problem exists in the area in spite of the level of formal and/or informal help given). The CANDID-S has been found to be a valid and reliable measure of need in a population with ID (Xenitidis et al., 2000). 2.5. Procedure To begin, full approval for the study was obtained from the organisation’s research ethics committee. Following this, contact was made with potential participants prior to taking part in the study. A comprehensive consent procedure was designed and adhered to. The potential participants were provided with a large-font information sheet about the study to be read by themselves or, if required, with a key worker. At all stages in the consent process participants were reminded that they were not required to take part. Participants were given two to three days to assimilate the information and to decide whether or not they consented to take part. In cases where service users were unable to understand the information, a key worker who worked with them for more than six months advocated and provided consent on their behalf. Participants were given the option of being interviewed alone, or with a key worker if they wished. Participants were interviewed in either their place of residence or their day service setting. A number of service users (N = 19, 25.3%) who took part in the study had significant verbal communication difficulties. Of these, nine had such difficulties in communicating that the researcher was unable to obtain the relevant information to complete the CANDID-S interview from them alone. In these cases, a key worker who knew the service user closely and who had worked with them for a minimum of six months advocated on their behalf. The key worker signed a consent form which instructed them to answer as honestly as they could while bearing in mind that they were answering from the service user’s perspective rather than their own. In the case of the other 10 service users with communication difficulties, their key worker assisted them to facilitate communication. Here, the researcher reminded key workers that their role was not to answer on the service users behalf, but to ensure the service users understood what was being asked of them and to ensure that what they were communicating, in turn, was understood accurately by the researcher. In order to control for aquiescence, the interviewer phrased questions carefully in accordance with guidelines on interview techniques provided in the CANDID-S manual (Xenitidis et al., 2003). Before conducting the interviews, rapport was established between the researcher and the participants by talking generally about their interests. 3. Results 3.1. Analysis procedures As the data were assumed to be normally distributed within the target population, parametric tests were used to conduct the analyses. Descriptive statistics were used to profile the needs as reported by participants. A series of one-way analysis of variance (ANOVA) tests investigated if there were any significant differences in reported need across level of ID. 3.2. Sample representativeness In order to investigate whether the sample was representative of older persons with ID in the service setting, key demographics of the sample (N = 75) were compared to anonymised demographics for the adults over the age of 50 receiving services within the organisation who did not take part in the study (N = 82). An independent t-test was used to compare the age of the two groups and a significant difference was found (t = 4.486; p < .05). Specifically, those who took part in the study had a higher mean age (57.5 years) than those who did not (53.9 years). A chi-square test was run to investigate if there was a difference in gender breakdown between the two groups. However, no significant difference was found x2(1, N = 157) = 0.016, p > .05. Additionally, a chi-square test investigated whether there was any difference in level of ID of the two groups. Again, no significant difference was found x2(2, N = 157) = 3.806, p > .05. This suggests an acceptable level of comparability between the two groups. While the study sample is older this is not noted as a concern given the focus of the study on the needs of older persons.
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Table 1 Average need as reported by participants.
Participants (N = 75)
No serious need
Total need
Met need
Unmet need
13.9 (SD = 2.7) Range 7–19
11.0 (SD = 2.7) Range 6–18
9.7 (SD = 2.3) Range 0–6
1.3 (SD = 1.3) Range 6–16
Table 2 Service user’s top ranked reported needs on the CANDID-S. Ranking
Met need
Unmet need
No serious need
Top ranked No 2 No 3 No 4 No 5
Food (94.7%, n = 71) Daytime activities (89.3%, n = 67) Transport (85.3%, n = 64) Looking after home/ accommodation (82.7%, n = 62)
Basic education (38.7%, n = 29) Money budgeting (21.3%, n = 16) Transport (13.3%, n = 10) Communication (12.0%, n = 9) Daytime activities (8.0%, n = 6)
Substance abuse (100.0%, n = 75) Safety to self (97.3%, n = 73) Caring for someone else (94.7%, n = 71) Safety to others (92.0%, n = 69) Sexual expression/major mental health problems (89.3%, n = 69)
Table 3 Participants’ reported level of need according to level of disability (N = 75). Disability level
No serious need
Total need
Met need
Unmet need
Mild Moderate Severe/profound Overall service users
14.3 14.3 11.8 13.9
10.6 10.5 13.3 11.0
9.6 (SD = 2.5) 9.3 (SD = 2.0) 11.0 (SD = 2.2) 9.7 (SD = 2.3)
1.0 1.3 2.3 1.3
(SD = 2.6) (SD = 2.5) (SD = 2.1) (SD = 2.7)
(SD = 2.7) (SD = 2.5) (SD = 2.1) (SD = 2.7)
(SD = 1.4) (SD = 1.5) (SD = 1.1) (SD = 1.3)
3.3. Descriptive analysis of reported needs For each of the 25 domains on the CANDID-S, participants’ responses were categorised as either ‘no serious need’, a ‘met need’ or an ‘unmet need’ as defined in Section 2. ‘Total need’ was also calculated by adding the met and unmet needs. This variable was useful as an overall need index. Participants’ average number of needs in all four categories are reported in Table 1. These are scored out of a total of 25 (the number of areas examined by the CANDID), and it is clear that across the greatest proportion of areas (almost 14 out of 25) there is no reported need. In addition, of the ‘total need’, the figures suggest that most of these needs are being met by the help that is currently being received. Given that Strydom et al. (2005) also report a mean score for self-reported need (which was 11.8) it is possible to compare the two studies using a one-sample ttest. This difference was found to be significant (t = 2.610, p < .05), with the present study sample reporting significantly fewer needs. However, the confidence interval (CI 95) of 1.43 to 0.19 would suggest the need for caution in interpreting the finding as the lower range of the interval approaches zero, which might suggest no difference between the two studies. In addition to considering average need scores, participants’ top ranked needs in each category were also examined (see Table 2). The top four domains in which ‘met need’ was reported were looking after the home, social relationships, daytime activities and transport. ‘Unmet needs’ were most reported in the domains of basic education, money budgeting, transport, communication and daytime activities. 3.4. Comparisons across disability level In order to investigate differences in the level of self-reported across participants with different levels of ID, one-way ANOVAs were conducted. The breakdown of the level of self-reported needs according to level of ID are reported in Table 3. There were no significant differences in the number of met needs reported across the three groups (F = 2.401, p > .05). However, a significant difference was found for the amount of ‘unmet needs’ reported (F = 4.226; p < .05). Scheffe post hoc analyses revealed that those with severe/profound ID reported significantly more unmet needs than those with mild but not those with moderate ID. Additionally, those with severe/profound ID reported significantly higher ‘total need’ compared to those with mild or moderate ID (F = 5.675; p < .05) and significantly lower levels of ‘no serious need’ than those with mild or moderate ID (F = 5.133; p < .05). These differences are visually outlined in the means plot in Fig. 1. These patterns suggest that where needs are being met, there are no differences with regard to the level of ID. Unsurprisingly however, participants with severe of profound levels of ID reported more needs in general, more ‘unmet needs’, and were less likely to report having ‘no serious need’ in a particular area. While this reflects the additional demands of a severe/profound ID, it also highlights the importance of addressing needs among older persons in this group. 4. Discussion The current study aimed to describe the health and social care needs of a group of 75 older persons with ID using data obtained from participants’ self-reports. It was conducted within the context of the growing population of older
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Fig. 1. Comparing participants’ reported needs according to their level of disability.
persons with ID in Ireland (Kelly et al., 2007) and the research evidence supports the unique needs of this group (e.g. Strydom et al., 2005). The results demonstrate that for this group, an average of 11.0 total needs (both met needs and unmet needs) were identified on the CANDID-S. This finding is similar to that of a previous study (Strydom et al., 2005) where older adults with ID reported 11.8 total needs. However, in spite of built-in checks to control for it, it is possible that service users are under-reported their own needs due to aquiescence. Also, because of a lack of knowledge of opportunities that might be available to them, service users might have not recognised a need when it may have been present. There were also differences in how ‘unmet needs’ were reported across ID level. Unsurprisingly service users with severe ID reported significantly more unmet needs. People with severe/profound ID are less likely to survive into old age than those with mild or moderate ID (Bittles et al., 2002), and as a result might be underrepresented in studies relating to ageing and ID. Yet, this finding implies that for models of service for an ageing population with ID to be comprehensive, they will need to specifically target the unmet needs of this group. Looking more closely at the findings, participants reported basic education (phrased as ‘‘does the person lack basic skills in numeracy and literacy?’’) (Xenitidis et al., 2000) as the top unmet need on the CANDID-S. This finding is noteworthy and unexpected. Findings from earlier research using the CANDID-S indicate that while Basic Education is a top unmet need for younger adults with ID (Xenitidis et al., 2000) older adults with ID seem to have less need in this domain (Strydom et al., 2005). However, the sample used in the earlier study had a significantly older age profile than the current sample (the cut-off was 65 years of age compared to 50), which might go some way to explain the disparity between the findings. Nevertheless, the high rating of basic education as an unmet need demonstrates a potential deficit in lifelong learning programmes at a service provision level for this age group. Additional significant unmet needs described by service users included transport and money budgeting. Top met needs included food, looking after the home and transport. Taken overall, these findings indicate that for this sample, many principal needs are being met by current service provision, but demonstrate potential deficits in supports provided for communication, financial skills, transport and mental health problems that do not meet clinical thresholds. However, before considering the implications of this study, it is important to reflect on the methodological strengths and limitations. This study has a number of strengths, including the use of participants’ own reports as much as possible. However, the views of nine service users with severe communication difficulties were provided on their behalf by key workers who worked closely with them. Ideally, in order to draw entirely valid conclusions about service users’ self-reported needs, the data set would not include proxy reports. Nonetheless, the study did include all levels of disability and a mix of both respondents who live in residential services and those who access day services and live independently of the service provider. Also the sample size is another strength as it represents almost half of the possible sample within the organisation, and analysis showed a high level of comparability between those who participated and those who did not. The authors are confident that the findings provide an important insight into the needs of older persons with ID who are engaged with similar services.
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The usefulness of the scale used (the CANDID-S) must also be considered. It is important to recognise that this tool does not include all needs relevant to this group. For example, there is no item on the CANDID-S relating to employment activities. Many of the individuals who took part in the study were involved in either workshop-based or supported community employment. The CANDID-S therefore would not have been sensitive to perceived needs in this area. Additionally, while the instrument can broadly describe domains in which needs exist, it does not allow for more sensitive discriminations of the types of needs experienced in each domain. For example, the specific physical health needs of the average older person with ID might be quite different to those of a younger adult with ID. However, this concern is minimised by the previous use of the scale with older persons (Strydom et al., 2005). Overall, the authors are confident that the findings provide an important insight into the needs of older persons with ID in Ireland. As such, the findings have implications for the provision of services to successfully meet the needs of older persons with ID. The identification of money budgeting and education as unmet needs for this group implies that appropriate services for them might include lifelong learning, education and training. Such programmes could also be meaningful options in retirement services for older adults with ID. At present the development of specific services for older persons with ID in Ireland is in the early stages, however there is evidence of a commitment to meet both the general and age-specific needs of this group. Research such as the present study provides a basis for considering what elements might be included in such services. Given the relative lack of research in this area both internationally and in Ireland, there is significant scope for further research. On a practical level the authors are conscious that this study has only accessed participants’ self-reports. The addition of family and staff reports, as in Strydom et al. (2005) would provide valuable multiple perspectives on the needs of older persons with ID. Also, to overcome the limitation that the CANDID-S measured needs across a pre-defined set of domains, future research could incorporate a qualitative component to investigate additional needs that service users had but which were overlooked by the instrument. Finally, further studies might try to describe more specific age-related needs, recognising the unique needs that this group may have. When taking the methodological issues discussed into consideration, the study makes an important contribution to our understanding of the needs of those persons who are aging with an intellectual disability. The study has identified basic education and financial skills as high unmet need among this group, implying that continuing lifelong learning programmes might be a valuable and appropriate addition to service provision and retirement options for older persons with an intellectual disability. Acknowledgements The authors would like to thank the service users who took part in this research. We would also like to thank the many staff in the various residential houses and day services who kindly gave their time to help us arrange and complete the assessments. Finally, thanks are due to Dr. Ruth Garvey and Dr. Noel Hannan for their support of this project. References American Association on Mental Retardation. (2005). Fact Sheet: AGING. Older Adults and Their Aging Caregivers. 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Contents lists available at ScienceDirect
Research in Developmental Disabilities
Self-reported needs among older persons with intellectual disabilities in an Irish community-based service Darragh McCausland a, Suzanne Guerin a,*, Janette Tyrrell b, Clare Donohoe c, Isabelle O’Donoghue b, Philip Dodd b,d,e a
School of Psychology, University College Dublin, Belfield, Dublin 4, Ireland Saint Michael’s House, Ballymun Road, Dublin 17, Ireland Our Lady’s Children’s Hospital, Crumlin, Dublin 12, Ireland d Department of Psychiatry, University of Dublin, Trinity College, Dublin, Ireland e Department of Psychiatry, Royal College of Surgeons in Ireland, Dublin, Ireland b c
A R T I C L E I N F O
A B S T R A C T
Article history: Received 29 September 2009 Accepted 1 October 2009
Current research indicates that older persons with intellectual disabilities (ID) are a growing population with very specific needs. There are few existing studies that identify and characterise these needs. This study aimed to assess the health and social care needs of a group of older persons with ID in a community-based service in Ireland. The Camberwell Assessment of Need for Adults with Intellectual Disabilities-Short form (CANDID-S) was used to identify the health and social needs of 75 older persons with ID in a communitybased service who were over the age of 50. The mean age of the sample was 57.6 years (SD = 5.4, range 50–72) and 37.3% had mild ID, 46.7% had moderate ID and 16% had severe or profound ID. The most common ‘unmet needs’ reported were basic education and money budgeting (the ability to independently manage one’s own finances). The top-rated ‘met needs’ were food and daytime activities. Participants with severe or profound ID reported significantly more ‘unmet needs’ than those with mild or moderate ID. The current study identified education and financial skills as unmet needs for older persons with ID, implying that continuing lifelong learning programmes might be a valuable and appropriate addition to service provision and retirement options. Further research should be carried out to inform a comprehensive evidence base of the health and social care needs of this group. ß 2009 Elsevier Ltd. All rights reserved.
Keywords: Aging Intellectual disability Needs Self-report CANDID-S
1. Introduction Advances in medicine, health care and nutrition have resulted in adults with intellectual disabilities (ID) living longer. In one American study, the life expectancy of adults with ID (excluding those with Down’s Syndrome) was found to be between 70 and 74 years (Strauss & Eyman, 1996). A more recent longitudinal study (Patja, Livanainen, Vesala, Oksanen & Ruoppila, 2000) found that Finnish people with mild ID aged between 2 and 10 years old in 1963 had a longer expected life-span than the general population (69.3 versus 67.1 years). Those with moderate, severe and profound ID were given expected lifespans of 58.6, 63.2 and 50.8 years, respectively (Patja et al., 2000). A similar Australian study (Bittles et al., 2002) calculated average life-spans of 74.0, 67.6 and 58.6 for people with mild, moderate and severe ID. According to the National Intellectual
* Corresponding author. Tel.: +353 1 7168490; fax: +353 1 7161180. E-mail address: [email protected] (S. Guerin). 0891-4222/$ – see front matter ß 2009 Elsevier Ltd. All rights reserved. doi:10.1016/j.ridd.2009.10.005
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Disability Database (Kelly, Kelly & Craig, 2007) in Ireland, the combined proportion of people with ID aged over 35 years rose from 28.5% to 48.0% between 1974 and 2007. Also, according to the report, nearly half of those with a moderate, severe or profound ID are over 35 years of age. Taken together these findings demonstrate the increasing age profile of older persons with ID. However, as yet, there is little evidence-based research investigating the age-related needs of this growing population. Xenitidis et al. (2000) describes need as the requirements of individuals to help them achieve acceptable quality of life. These needs can be broken down into health (both physical and mental) and social care needs (Hogg, Lucchino, Wang & Janicki, 2001). It would appear that as adults with ID live longer, their health and social care needs to some extent mirror those of a general ageing population (Evenhuis, Henderson, Beange, & Lennox, 2001; Hogg et al., 2001). Such needs include the need for suitable retirement options, bereavement supports, the need to maintain social networks, the need for quality healthcare and the need for suitable accommodation (American Association on Mental Retardation, 2005; Bigby, 2008; Janicki & Dalton, 1999; Jokinen, 2005; O’Rourke, Grey, Fuller, & McClean, 2004). However, older persons with ID also have needs that differ from the general population, which may be related to risk factors among the population such as a higher prevalence of sensory and motor impairments (Evenhuis et al., 2001), increased risk of dementia (Cooper, 1997), and increased prevalence of psychiatric symptoms such as depression, anxiety and delirium (Chance, 2006; Hogg et al., 2001; Janicki & Dalton, 1999; Tyrrell & Dodd, 2003; Whitaker & Read, 2006). Additionally, older persons with ID are more likely to come from lower socioeconomic backgrounds and are therefore at an increased risk of the poorer health associated with this background (Graham, 2005). Currently, there is an increasing focus on the needs of older persons with ID (Hatzidimitriadou & Milne, 2005; Walsh, 2005). Indeed, in 2001 the World Health Organisation (WHO) made the physical health, mental health and social needs of older persons the focus of a number of reports drawn up in association with the International Association for the Scientific Study of Intellectual Disabilities (IASSID) to inform international policy (Evenhuis et al., 2001; Hogg et al., 2001; Thorpe, Davidson, & Janicki, 2001; Walsh et al., 2001). Although published in 2001, these reports remain the most comprehensive overview of age-related need. In spite of the policy laid out in the WHO reports to date, there are still few studies identifying the needs of older persons with ID (Hatzidimitriadou & Milne, 2005). In one of the few recent studies, Strydom, Hassiotis and Livingston (2005) described the mental health needs as well as general health and social care needs of a group of 23 adults with ID aged 65 and over. As part of their assessment, the authors used the Camberwell Assessment of Need for Adults with Intellectual Disabilities-Short Form (CANDID-S) (Xenitidis et al., 2000) to identify participants’ needs across 25 domains that covered mental health, physical health and social care. The CANDID-S was specifically designed for use with adults with ID and mental health problems (Xenitidis et al., 2000). However, the authors deemed it useful as a measure for use in a general ageing population with ID because of the wide scope of its domains. Additionally, its use was validated as a measure of need for such a population by Strydom et al. (2005) who found it to be a suitable and comprehensive measure of need for this group. It is clear that although increasingly more research describes the needs of older persons with ID, the overall evidence base remains significantly less complete than that for younger persons (Hatzidimitriadou & Milne, 2005). In order to best inform planning decisions and service development for this group it is imperative to continue building a research-informed evidence base identifying their needs. Moreover, in order to best inform person-centred services, it is imperative to include service users’ own perspectives when researching their needs. Using the CANDID-S, the present investigation aims to identify and describe the health and social care needs of a group of 75 adults with ID who are over the age of 50. The study aims not only to identify the areas in which they have needs (whether met or not met by current services), but also to compare the self-reported needs across levels of disability. 2. Method 2.1. Research design The study used an independent groups design, which includes the independent variable of levels of ID (mild, moderate and severe/profound). Participants’ identified needs were compared across these groups. 2.2. Research context The current study was conducted in a large urban community-based ID service for individuals with ID, which provides both residential and day services. At the time of study it provided services for over 1500 individuals, 176 of which were over the age of 50 years. 2.3. Sampling and participants At the time of the assessment there were 176 adults over the age of 50 listed on the service provider’s database. A sample of 81 older persons was recruited to take part. The selection process was not purely random. It was stratified in that preference was given to day services or residential services with a higher proportion of service users over the age of 50
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present. This stratification was applied in order to reduce the time involved in conducting the interviews. Service users were selected randomly from within the day and residential services. Six individuals (7.4%) chose not to give their consent, leaving a total of 75 consenting participants. The consenting participants’ mean age was 57.6 years with a standard deviation of 5.4 (range: 50–72 years). A total of 41(54.7%) of the participants were female and 34 (45.3%) were male. In addition, 28 (37.3%) participants had mild ID, 35 participants (46.7%) had moderate ID, while 12 participants (16%) had severe or profound ID. 2.4. Materials The Camberwell Assessment of Needs for Adults with Intellectual Disabilities-Short Form (CANDID-S, Xenitidis, Slade, Thornicroft, & Bouras, 2003) was used to rate participants’ needs. The CANDID-S rates needs across 25 different domains covering quality of life, mental health, physical health and social needs. The current study is concerned only with the first section of the CANDID-S. In this section, for each of the 25 domains, the respondent is classified as having either ‘no serious need’ (where there is no serious problem in the area and no formal and/or informal help required), a ‘met need’ (where there is no problem or only a moderate problem in the area due to the level of formal and/or informal help given) or an ‘unmet need’ (where a serious problem exists in the area in spite of the level of formal and/or informal help given). The CANDID-S has been found to be a valid and reliable measure of need in a population with ID (Xenitidis et al., 2000). 2.5. Procedure To begin, full approval for the study was obtained from the organisation’s research ethics committee. Following this, contact was made with potential participants prior to taking part in the study. A comprehensive consent procedure was designed and adhered to. The potential participants were provided with a large-font information sheet about the study to be read by themselves or, if required, with a key worker. At all stages in the consent process participants were reminded that they were not required to take part. Participants were given two to three days to assimilate the information and to decide whether or not they consented to take part. In cases where service users were unable to understand the information, a key worker who worked with them for more than six months advocated and provided consent on their behalf. Participants were given the option of being interviewed alone, or with a key worker if they wished. Participants were interviewed in either their place of residence or their day service setting. A number of service users (N = 19, 25.3%) who took part in the study had significant verbal communication difficulties. Of these, nine had such difficulties in communicating that the researcher was unable to obtain the relevant information to complete the CANDID-S interview from them alone. In these cases, a key worker who knew the service user closely and who had worked with them for a minimum of six months advocated on their behalf. The key worker signed a consent form which instructed them to answer as honestly as they could while bearing in mind that they were answering from the service user’s perspective rather than their own. In the case of the other 10 service users with communication difficulties, their key worker assisted them to facilitate communication. Here, the researcher reminded key workers that their role was not to answer on the service users behalf, but to ensure the service users understood what was being asked of them and to ensure that what they were communicating, in turn, was understood accurately by the researcher. In order to control for aquiescence, the interviewer phrased questions carefully in accordance with guidelines on interview techniques provided in the CANDID-S manual (Xenitidis et al., 2003). Before conducting the interviews, rapport was established between the researcher and the participants by talking generally about their interests. 3. Results 3.1. Analysis procedures As the data were assumed to be normally distributed within the target population, parametric tests were used to conduct the analyses. Descriptive statistics were used to profile the needs as reported by participants. A series of one-way analysis of variance (ANOVA) tests investigated if there were any significant differences in reported need across level of ID. 3.2. Sample representativeness In order to investigate whether the sample was representative of older persons with ID in the service setting, key demographics of the sample (N = 75) were compared to anonymised demographics for the adults over the age of 50 receiving services within the organisation who did not take part in the study (N = 82). An independent t-test was used to compare the age of the two groups and a significant difference was found (t = 4.486; p < .05). Specifically, those who took part in the study had a higher mean age (57.5 years) than those who did not (53.9 years). A chi-square test was run to investigate if there was a difference in gender breakdown between the two groups. However, no significant difference was found x2(1, N = 157) = 0.016, p > .05. Additionally, a chi-square test investigated whether there was any difference in level of ID of the two groups. Again, no significant difference was found x2(2, N = 157) = 3.806, p > .05. This suggests an acceptable level of comparability between the two groups. While the study sample is older this is not noted as a concern given the focus of the study on the needs of older persons.
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Table 1 Average need as reported by participants.
Participants (N = 75)
No serious need
Total need
Met need
Unmet need
13.9 (SD = 2.7) Range 7–19
11.0 (SD = 2.7) Range 6–18
9.7 (SD = 2.3) Range 0–6
1.3 (SD = 1.3) Range 6–16
Table 2 Service user’s top ranked reported needs on the CANDID-S. Ranking
Met need
Unmet need
No serious need
Top ranked No 2 No 3 No 4 No 5
Food (94.7%, n = 71) Daytime activities (89.3%, n = 67) Transport (85.3%, n = 64) Looking after home/ accommodation (82.7%, n = 62)
Basic education (38.7%, n = 29) Money budgeting (21.3%, n = 16) Transport (13.3%, n = 10) Communication (12.0%, n = 9) Daytime activities (8.0%, n = 6)
Substance abuse (100.0%, n = 75) Safety to self (97.3%, n = 73) Caring for someone else (94.7%, n = 71) Safety to others (92.0%, n = 69) Sexual expression/major mental health problems (89.3%, n = 69)
Table 3 Participants’ reported level of need according to level of disability (N = 75). Disability level
No serious need
Total need
Met need
Unmet need
Mild Moderate Severe/profound Overall service users
14.3 14.3 11.8 13.9
10.6 10.5 13.3 11.0
9.6 (SD = 2.5) 9.3 (SD = 2.0) 11.0 (SD = 2.2) 9.7 (SD = 2.3)
1.0 1.3 2.3 1.3
(SD = 2.6) (SD = 2.5) (SD = 2.1) (SD = 2.7)
(SD = 2.7) (SD = 2.5) (SD = 2.1) (SD = 2.7)
(SD = 1.4) (SD = 1.5) (SD = 1.1) (SD = 1.3)
3.3. Descriptive analysis of reported needs For each of the 25 domains on the CANDID-S, participants’ responses were categorised as either ‘no serious need’, a ‘met need’ or an ‘unmet need’ as defined in Section 2. ‘Total need’ was also calculated by adding the met and unmet needs. This variable was useful as an overall need index. Participants’ average number of needs in all four categories are reported in Table 1. These are scored out of a total of 25 (the number of areas examined by the CANDID), and it is clear that across the greatest proportion of areas (almost 14 out of 25) there is no reported need. In addition, of the ‘total need’, the figures suggest that most of these needs are being met by the help that is currently being received. Given that Strydom et al. (2005) also report a mean score for self-reported need (which was 11.8) it is possible to compare the two studies using a one-sample ttest. This difference was found to be significant (t = 2.610, p < .05), with the present study sample reporting significantly fewer needs. However, the confidence interval (CI 95) of 1.43 to 0.19 would suggest the need for caution in interpreting the finding as the lower range of the interval approaches zero, which might suggest no difference between the two studies. In addition to considering average need scores, participants’ top ranked needs in each category were also examined (see Table 2). The top four domains in which ‘met need’ was reported were looking after the home, social relationships, daytime activities and transport. ‘Unmet needs’ were most reported in the domains of basic education, money budgeting, transport, communication and daytime activities. 3.4. Comparisons across disability level In order to investigate differences in the level of self-reported across participants with different levels of ID, one-way ANOVAs were conducted. The breakdown of the level of self-reported needs according to level of ID are reported in Table 3. There were no significant differences in the number of met needs reported across the three groups (F = 2.401, p > .05). However, a significant difference was found for the amount of ‘unmet needs’ reported (F = 4.226; p < .05). Scheffe post hoc analyses revealed that those with severe/profound ID reported significantly more unmet needs than those with mild but not those with moderate ID. Additionally, those with severe/profound ID reported significantly higher ‘total need’ compared to those with mild or moderate ID (F = 5.675; p < .05) and significantly lower levels of ‘no serious need’ than those with mild or moderate ID (F = 5.133; p < .05). These differences are visually outlined in the means plot in Fig. 1. These patterns suggest that where needs are being met, there are no differences with regard to the level of ID. Unsurprisingly however, participants with severe of profound levels of ID reported more needs in general, more ‘unmet needs’, and were less likely to report having ‘no serious need’ in a particular area. While this reflects the additional demands of a severe/profound ID, it also highlights the importance of addressing needs among older persons in this group. 4. Discussion The current study aimed to describe the health and social care needs of a group of 75 older persons with ID using data obtained from participants’ self-reports. It was conducted within the context of the growing population of older
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Fig. 1. Comparing participants’ reported needs according to their level of disability.
persons with ID in Ireland (Kelly et al., 2007) and the research evidence supports the unique needs of this group (e.g. Strydom et al., 2005). The results demonstrate that for this group, an average of 11.0 total needs (both met needs and unmet needs) were identified on the CANDID-S. This finding is similar to that of a previous study (Strydom et al., 2005) where older adults with ID reported 11.8 total needs. However, in spite of built-in checks to control for it, it is possible that service users are under-reported their own needs due to aquiescence. Also, because of a lack of knowledge of opportunities that might be available to them, service users might have not recognised a need when it may have been present. There were also differences in how ‘unmet needs’ were reported across ID level. Unsurprisingly service users with severe ID reported significantly more unmet needs. People with severe/profound ID are less likely to survive into old age than those with mild or moderate ID (Bittles et al., 2002), and as a result might be underrepresented in studies relating to ageing and ID. Yet, this finding implies that for models of service for an ageing population with ID to be comprehensive, they will need to specifically target the unmet needs of this group. Looking more closely at the findings, participants reported basic education (phrased as ‘‘does the person lack basic skills in numeracy and literacy?’’) (Xenitidis et al., 2000) as the top unmet need on the CANDID-S. This finding is noteworthy and unexpected. Findings from earlier research using the CANDID-S indicate that while Basic Education is a top unmet need for younger adults with ID (Xenitidis et al., 2000) older adults with ID seem to have less need in this domain (Strydom et al., 2005). However, the sample used in the earlier study had a significantly older age profile than the current sample (the cut-off was 65 years of age compared to 50), which might go some way to explain the disparity between the findings. Nevertheless, the high rating of basic education as an unmet need demonstrates a potential deficit in lifelong learning programmes at a service provision level for this age group. Additional significant unmet needs described by service users included transport and money budgeting. Top met needs included food, looking after the home and transport. Taken overall, these findings indicate that for this sample, many principal needs are being met by current service provision, but demonstrate potential deficits in supports provided for communication, financial skills, transport and mental health problems that do not meet clinical thresholds. However, before considering the implications of this study, it is important to reflect on the methodological strengths and limitations. This study has a number of strengths, including the use of participants’ own reports as much as possible. However, the views of nine service users with severe communication difficulties were provided on their behalf by key workers who worked closely with them. Ideally, in order to draw entirely valid conclusions about service users’ self-reported needs, the data set would not include proxy reports. Nonetheless, the study did include all levels of disability and a mix of both respondents who live in residential services and those who access day services and live independently of the service provider. Also the sample size is another strength as it represents almost half of the possible sample within the organisation, and analysis showed a high level of comparability between those who participated and those who did not. The authors are confident that the findings provide an important insight into the needs of older persons with ID who are engaged with similar services.
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The usefulness of the scale used (the CANDID-S) must also be considered. It is important to recognise that this tool does not include all needs relevant to this group. For example, there is no item on the CANDID-S relating to employment activities. Many of the individuals who took part in the study were involved in either workshop-based or supported community employment. The CANDID-S therefore would not have been sensitive to perceived needs in this area. Additionally, while the instrument can broadly describe domains in which needs exist, it does not allow for more sensitive discriminations of the types of needs experienced in each domain. For example, the specific physical health needs of the average older person with ID might be quite different to those of a younger adult with ID. However, this concern is minimised by the previous use of the scale with older persons (Strydom et al., 2005). Overall, the authors are confident that the findings provide an important insight into the needs of older persons with ID in Ireland. As such, the findings have implications for the provision of services to successfully meet the needs of older persons with ID. The identification of money budgeting and education as unmet needs for this group implies that appropriate services for them might include lifelong learning, education and training. Such programmes could also be meaningful options in retirement services for older adults with ID. At present the development of specific services for older persons with ID in Ireland is in the early stages, however there is evidence of a commitment to meet both the general and age-specific needs of this group. Research such as the present study provides a basis for considering what elements might be included in such services. Given the relative lack of research in this area both internationally and in Ireland, there is significant scope for further research. On a practical level the authors are conscious that this study has only accessed participants’ self-reports. The addition of family and staff reports, as in Strydom et al. (2005) would provide valuable multiple perspectives on the needs of older persons with ID. Also, to overcome the limitation that the CANDID-S measured needs across a pre-defined set of domains, future research could incorporate a qualitative component to investigate additional needs that service users had but which were overlooked by the instrument. Finally, further studies might try to describe more specific age-related needs, recognising the unique needs that this group may have. When taking the methodological issues discussed into consideration, the study makes an important contribution to our understanding of the needs of those persons who are aging with an intellectual disability. The study has identified basic education and financial skills as high unmet need among this group, implying that continuing lifelong learning programmes might be a valuable and appropriate addition to service provision and retirement options for older persons with an intellectual disability. Acknowledgements The authors would like to thank the service users who took part in this research. We would also like to thank the many staff in the various residential houses and day services who kindly gave their time to help us arrange and complete the assessments. Finally, thanks are due to Dr. Ruth Garvey and Dr. Noel Hannan for their support of this project. References American Association on Mental Retardation. (2005). Fact Sheet: AGING. Older Adults and Their Aging Caregivers. 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