A comparative analysis of the prevalence and predictors of chronic pain in older adults with and without intellectual disability in Australia
Background: There is little research comparatively assessing prevalence of pain between older people either with or without intellectual disability. This paper explores health and social factors associated with chronic pain in these two groups.
Method: A cross-sectional survey was undertaken in New South Wales and Queensland, Australia. Inclusion criteria were adults either with or without intellectual disability, aged 60 years and older, and currently living in community-settings. Univariate and multivariable analyses were undertaken on a sample of 391 adults with intellectual disability and 920 adults without intellectual disability.
Results: Key findings included higher prevalence of pain in the intellectual disability group, along with higher rates of osteoarthritis, falls, oral health problems, and mood disorders.
Conclusions: Mitigating risk factors for conditions that cause chronic pain in older adults is crucial. As longevity increases, the healthcare sector needs to prioritise chronic pain management for people with intellectual disabilities through appropriate treatment strategies.
Keeping my place in the community: Achieving successful ageing-in-place for people with intellectual disabilities
Introduction: Australian aged‐care and disability service reforms and the advent of National Disability Insurance Scheme have changed the policy and funding landscape from service‐centric to individualised funding. However, there are gaps in policy and practices concerning older people with intellectual disabilities (PwID), whose life expectancy now approximates that of general population. Using Bronfenbrenner's ecological systems framework, the study aimed to define a more viable interface between disability and aged‐care sectors to enable integrated community‐based living. Methods: i) A survey of health, quality‐of‐life (QoL) and social disparities of PwID (n = 391) and people without lifelong disability (n = 920) across two states; and ii) key informant (KI) semi‐structured interviews, with a sample of policy makers and senior managers in the disability and aged‐care sectors (n = 36). Results: PwID experience more chronic health conditions than non‐PwID age peers. Social disparities were greater, but mean and median QoL scores were higher for PwID group than their non‐PwID age peers. KI interviews highlighted barriers between disability and aged‐care sectors. Inter‐sectoral silos thwarted coordinated whole‐of‐person operationalisation of policies. Implications: Ageing‐related needs of PwID must be considered when reforming generic ageing policies and practices. Applying a lifelong perspective would better lead to a seamless transition throughout one's life stages. Practice and policy must focus around co‐design, autonomy and decision making ‐ at the personal, organisational, policy and society levels. Keywords: Intellectual Disability, Ageing, Disability reforms, Aged‐care services
Health and Community Service Access: Differences and Similarities for Older People With and Without Lifelong Intellectual Disability
Introduction: Few studies comparatively examine experiences of the mainstream ageing population and people ageing with intellectual disability, and particularly with respect to access to health and community services. This paper reports on the findings of a large-scale Australian study with older people with and without lifelong intellectual disability residing in rural and metropolitan areas.
Methods: Semi-structured interviews were undertaken across New South Wales and Queensland, and included participants from small rural towns through to metropolitan areas. Adults interviewed included those living in their longstanding community home as well as individuals who had over the past few years moved into residential aged care facilities.
Results: Participants with and without intellectual disability reported difficulty in consistently accessing both mainstream and specialist health and community services. Analyses indicated that the greater geographic distance from metropolitan areas had an increasingly greater impact on individuals' capacity to access services than the presence of lifelong disability. While inner-city individuals without intellectual disability reported best access to services, differences in access between individuals either ageing with or without intellectual disability reduced as distance from the capital city increased.
Implications: Specific barriers to service access are related to geography and disability, with most significant limitations related to living in isolated areas. Attention from health and community service providers is required to address this inequality in service availability.
Multimorbidity in older people with intellectual disability
Background
There is paucity of research from Australia about comorbidity in older people with intellectual disability (PwID). This paper examines the burden of chronic diseases and associated sociodemographic correlates in a cohort of PwID aged 60+.
Methods
A cross‐sectional survey was used with community‐dwelling older PwID in urban/rural regions of two Australian states. Recruitment was undertaken via a multi‐prong approach and each subject (N = 391; 236 urban/155 rural) personally interviewed.
Results
Findings show older PwID experience considerable multimorbidity (X = 3.8; 53.5% had 2-6 conditions). Conditions included arthritis (40%), diabetes (26%), cardiovascular diseases (23.6%), asthma (16.1%), carcinomas (10.0%) and mental health disorders (34.5%).
Conclusions
There was significant multimorbidity in older PwID, with evolution of life trajectories of select conditions associated with socioeconomic disadvantage and heath facility access barriers. Greater scrutiny of progressive health debilitation leading into older age and increased engagement by healthcare systems is required earlier in the lives of PwID.
Comparison of Chronic Disease Prevalence in Older Australians With and Without Intellectual Disability
Introduction: Increased longevity has led to a greater burden of chronic diseases. People with intellectual disability (PwID) experience considerable ill-health across the lifespan. We report on comparative prevalence of chronic physical and mental health problems of a cohort of older Australians with and without ID.
Methods: Cross-sectional survey of adults aged 60-87 years (PwID, n = 391; non-ID = 920). Respondents reported on conditions present from a list of 19 options. Additional health problems were assessed through open-response free-text. Access to primary and secondary healthcare practitioners was queried.
Results: The mean number of chronic health conditions was 3.8 (SD, 2.7) for PwID and 2.9 (SD, 2.5) for non-ID group respectively. The prevalence of arthritis, cardiovascular diseases, and cancer was similar. Other chronic physical health conditions (diabetes, asthma, nonrefractive vision problems), and mental health conditions (anxiety, depression) were significantly higher in PwID. Access to healthcare practitioners was high for both groups, though PwID had more gaps in treatment.
Implications: There is higher cumulative burden of chronic diseases in PwID. Discrepancies in treatment allude to inadequacy or inequity in appropriate healthcare, along with missed opportunities for early screening of known risk factors. Comparative OECD data reveals commonalities of chronic disease patterns for older PwID. Given this, these findings should serve as stimuli for improving early recognition and management including decreasing inequities in healthcare across disability and aged-care services.
Comparative Quality-of-Life Perspectives of Older Australians With and Without Intellectual Disability
Introduction: Experienced and perceptual evidence on quality-of-life (QoL) of older Australians with and without intellectual disability using comparable validated measurement scales is limited. To examine possible differences, a study was undertaken to compare experienced and perceived QoL across these two groups to better understand their underlying health and social needs.
Methods: Community-based cross-sectional survey of participants aged 60–87 years (ID, n = 391; without-ID, n = 920). QoL was assessed using the Cummins Well-Being Scales (PW-ID for ID and PWA for without-ID) and Medical Outcomes Study:Short Form-12 (MOS-SF- 12). The SF-12 data was categorised into Physical and Mental Component Scores (PCS and MCS).
Results: The mean QoL score was 55.5 (SD ± 9.1) for PW-ID and 50.8 (SD ± 12.7) for PWA. The mean PCS and MCS values were 45.8 (SD ± 9.9) and 50.4 (SD ± 9.9) for the ID group and 42.9 (SD ± 12.1) and 51.2 (SD ± 10.0) for without ID group. For both groups, the range for all three QoL indices was sufficiently large so as to indicate great variability in perceived and experienced QoL between the two groups.
Implications: Our findings of PwID reporting higher QoL is consistent with other studies across various age groups; and reflect a range of underlying perceptual issues. Policy makers and program administrators need to consider the experienced and perceived QoL of older Australians when attempting to customize and coordinate required aging-related supports across both the disability and aged-care sectors.
Securing Personal Input From Individuals Aging with Intellectual Disability: Do Differing Methodologies Produce Equivalent Information?
Research is limited on whether differing methodologies for facilitating personal contributions from individuals aging with intellectual disability produce equivalent knowledge outcomes. Two matched purpose-developed tools examined five quality-of-life domains. Results showed substantial variance between qualitative interview responses and Likert-scale data, and indicate validity concerns for using either methodology in isolation.
Keeping my place in the community: Achieving successful ageing-in-place for people with intellectual disabilities
This report summarises the findings and outcomes of a 4-year Australian Research Council (ARC) Linkage project looking at key policy issues and challenges associated with the health and social disparities across two cohorts of community-dwelling older Australians in two states – New South Wales and Queensland. The two specific population groups of interest were: People with Intellectual Disability (PwID) and those who were Ageing without lifelong disability (PwA).
An inherent underpinning of any framework that supports successful ageing, both of people with lifelong intellectual disability and those who may acquire a disability as they age, needs to take account of the particular circumstances, capacity, resources, experiences, interest, perspective and aspirations of each individual across their lifespan. This research found that the concept of ageing is no different for people with lifelong disability when compared to the general population. However, a significant difference is that people with lifelong intellectual disability experience multi-morbidities at an earlier age than their mainstream peers. A holistic focus is required; each person's needs as they age will be different, depending on their life journey, as every individual has their own story and perceptions of a good life, and their 'authentic' self.
Though a “"person-centred focus" is a legislated philosophy and objective across both the disability and aged-care services sectors in Australia, it does not appear to be translating into systems and practices that consistently deliver personalised service and good individual outcomes across the board. The achievement of successful ageing and an inclusive life is determined by a complex relationship between barriers and facilitators at the individual and systems/organisational levels, and through broader legislative and public policy instruments. A key finding of this research is that there needs to be a "seamless and integrated care system, across health, allied health, age and disability, and preferably across the life span".
The Best Practice Framework provides a set of recommendations to mitigate the present issues and lead to improvements at the policy, programs and individual levels to enable successful community-based ageing of people with disability and those without lifelong disability.
Perspectives about support challenges facing health workers assisting older adults with and without intellectual disability in rural versus urban settings in Australia
Aims: Life expectancy for both sexes in Australia exceeds 80 years, with individuals with intellectual disability also increasingly living into older age. This research aimed to comparatively examine perceptions of staff supporting either older adults or age peers with lifelong intellectual disability. Methods: This project asked 420 medical, health, and support workers about training adequacy, health services access, and trigger points for premature institutionalisation. This paper is based on a subsample of 196 respondents who provided quantitative and qualitative responses. Results: There was considerable variation in confidence in supporting ageing individuals, while only 23.7% of doctors reported their training was adequate to support adults ageing with intellectual disability. A lack of services and poor carer health were identified as triggers for premature institutionalisation. Conclusions: The study revealed key differences in staff perceptions of support provision and training adequacy when comparing ageing individuals with intellectual disability to the general ageing population.
Perceived health and wellbeing among community-dwelling older Australians with intellectual disability: A comparison with age peers
Data specifically comparing outcomes for people with and without intellectual disability is limited. This paper reports perceived health and wellbeing of older Australians resident in metropolitan and rural locations in New South Wales and Queensland. Respondents were community-residing individuals with intellectual disability and mainstream age peers [age ≥ 60]. Measures included SF12; Cummings well-being scales; DSSI; Adverse Life Events; and financial hardship status. The sample was composed of 391 adults with intellectual disability and 920 age peers. Adults with intellectual disability were significantly more likely to note adverse life events, worse mental health, and lower levels of social support, but reported higher mean wellbeing scores and had higher scores for physical health. Results indicated higher likelihood of adults with intellectual disability reporting comparative disadvantage across multiple key areas when compared to age peers.