Enablers and impediments to successful ageing-in-place
Objective: The life expectancy of both the mainstream population and of people with intellectual disabilities has increased significantly in the past 100 years. However, there are research gaps regarding the comparative experience of ageing with and without a lifelong intellectual disability, and differences that are evident between metropolitan and rural localities. Methods: The current study examined the main factors that supported or hindered successful ageing for both people with and without lifelong intellectual disability across both metropolitan and rural regions of NSW and Queensland. The project utilised a qualitative design in which 40 semi-structured interviews were undertaken with individuals ageing both with and without an intellectual disability and their carers. The sample was comprised of participants who were still living in their local community and those who had transitioned into a permanent residential aged care placement. The purpose of the interviews was to gauge what different factors were enablers or impediments to the successful ageing process. Key Findings: The paper will present the findings, with a focus upon the social, environmental, political and personal health factors that underpin successful ageing. The key similarities and any differences for individuals both with and without lifelong intellectual disabilities residing in rural and metropolitan areas will be discussed. Conclusions: There is an increasing need for support structures that meet the often complex individual needs of people ageing with an intellectual disability. These models need to be based upon information gained from inclusive research to ensure that the disparate needs of people with intellectual disabilities are met in both rural and metropolitan localities. Learnings from the mainstream ageing communities can further assist in the development of appropriate systems of support. The results have also informed ways in which bridges can be built between disability and aged care policies and practices.
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.
Theories of ageing: Do people with lifelong cognitive impairments fit in?
Theories of successful ageing emerged in the early 1960s, prompted by the need for the nascent discipline of gerontology to be grounded in a theory base. Over successive decades various theories have been proposed, none of which has specifically addressed the ageing of people with lifelong disabilities, specifically those with cognitive or intellectual disabilities. It is now established that the adult life expectancy of this population approximates that of the general population, owing to enhanced access to health care, better nutrition, and improved life style. Difficulties encountered by this population include the lack of clear transition markers throughout their adult life. The lack of inter-sectorial collaboration between ageing and disability support services, exemplified by the two Australian Productivity Commission Reports, has resulted in an isolation of people with lifelong disabilities from mainstream gerontological developments. Recent theories of ageing, which incorporate psychosocial concepts, need to be refined in the context of people with cognitive impairments. We argue that such adults can experience an enhanced lifestyle in older age as witnessed by data gathered from them, indicating their understanding of their ageing. We note that this understanding has implications for the development of a more inclusive theory of successful and positive ageing.
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.
Supporting ageing-in-place for people with intellectual disability: A rural and metropolitan comparison
Dramatic improvements in life expectancy have led to a large cohort of people with an intellectual disability who are ageing. This emerging phenomenon presents a considerable challenge for carers and service providers as they have not previously had to manage a substantial number of individuals with the concurrent issues of ageing and intellectual disability. To date, there is limited comparative research across metropolitan and rural regions with respect to understanding issues faced by individuals and their carers in coping with health and well-being issues. The purpose of the current study was to explore key dimensions that enable or impede community-based independent ageing-in-place options, and specifically how they differ in metropolitan and rural regions. These dimensions include the understanding complex range of issues in healthy ageing and interplay of health, social and support factors from onset of ageing through to end-of-life care. This project utilised a mixed-methods study design aligned with principles of inclusive research. The preliminary findings of the research will be presented, with a focus upon the identification of factors that facilitates or hinder successful ageing in place for people with intellectual disabilities. The key similarities and differences for individuals residing in rural and metropolitan areas will be discussed.
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.
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.
Ageing-in-a-chosen-place: commonalities and dissonance in life choice-making in elders with and without intellectual disability
Aim: The past century has seen a significant increase in the life expectancy of both people with and without lifelong disabilities. The purpose of the current research was to examine the respective experiences of people ageing with and without intellectual disability across both rural and metropolitan locations. Methods: This project utilised semi-structured interviews with participants who were still living in the community and also those who had moved into residential care facilities. The focus of these interviews was to gain an understanding of the experience of ageing both with and without an intellectual disability and to contrast the similarities and differences across both cohorts. Results: The paper will report the findings of the research, with a particular focus on the concept of "ageing-in-a-chosen-place" rather than "ageing-in-place". The key similarities and differences in the life experience of ageing individuals with and without intellectual disabilities will be discussed. Conclusion: As the life expectancy of people around the world continues to rise, we need to ensure that support structures are based around assessed individual need. Such models need to be based upon accurate information and ensure that the informed decision-making capacity of all individuals is supported.
It's different in the country: Supporting ageing-in-place for people with intellectual disabilities
Background: Dramatic improvements in life expectancy have led to a large cohort of people with intellectual disabilities (ID) who are ageing. To date, there is limited comparative research across metropolitan and rural regions with respect to understanding issues faced by ageing individuals with disabilities and their carers. Method: The purpose of the current study was to explore key dimensions that enable or impede ageing-in-place options in metropolitan and rural regions. This included understanding the complex range of issues in healthy ageing and the interplay of health, social and support factors. This project utilised a mixed-methods study design aligned with principles of inclusive research. The study consists of 2 distinct stages: Stage A saw semi-structured interviews undertaken with individuals with ID and their carers. The sample comprised of participants who lived in the community and those who had moved to residential care facilities. The focus of these interviews was to assess the "enablers and impediments" to successful ageing-in-place for people with ID. Stage B was a semi-structured survey of health professionals. The questionnaire covered information on demographics, training and training needs (both pre-service and in-service), knowledge on issues ranging from disability, ageing, bereavement, as well as mental and emotional well-being. Results: Preliminary findings of the research detail the factors that have supported or hindered successful ageing-in-place for people with ID. There were key similarities and differences for individuals residing in rural and metropolitan areas. Conclusions: As the life expectancy of people with ID continues to rise, there is an increasing need for support models that meet individual needs. Models need to be based upon information gained from inclusive research to ensure the complex needs are appropriately addressed in both rural and metropolitan localities.
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