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.
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.
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.
Patterns of co-morbidity in older people with intellectual disabilities
Aim: This paper reports on an ongoing large-scale Australian study with concurrent comparative assessment of prevalence of various co-morbid health conditions in older people with and without intellectual disabilities (ID). Method: Information was elicited using a structured survey form with multimodal methods of delivery across the two population groups of interest. Study sites included metropolitan and rural regions in New South Wales, Australia. Results: Older people with ID were more likely to have select functional and physical impairments (e.g., depression [28% vs 19%] and falls [37% vs 16%]), but both minimal and notable differences among select age-related diseases or health conditions (e.g., equal rates among cardiovascular disorders and greater rates of arthritis [63.1% vs 47%]). Conclusions: It is important to understand differentials in patterns of co-morbidity by biological and systemic issues as well as ascertain variations in access to health services and other social equity issues in tracking functional and health comorbidities among adults with ID.
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.
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.
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.
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.
Supporting participation: Facilitating inclusion of rural Australians aging with intellectual disabilities in research using validated survey tools
Aim: To determine the feasibility and costs of supporting rural people aging with intellectual disabilities (ID) to complete validated survey tools. Method: Community-based organisations in rural New South Wales identified eligible survey participants, defined as people aged over 59 living in the community either with or without life-long ID. Tools included SF12, Duke Social Support Index (DSSI) and Cummins' Personal Wellbeing Index. Online and paper-based surveys were completed by the mainstream cohort. A pilot indicated participation by people with ID was only feasible through 1:1 interviews due to language complexity in some tools. Results: Researchers surveyed 70 people with ID from 12 geographically diverse towns, with 164 age-peer surveys independently completed. Costs of survey administration were calculated for each mode. Excluding researcher salaries, the average cost of collecting the rural ID cohort was $101.33 and $11.96 for age-peer paper surveys. Conclusions: Supporting the inclusion of rural people aging with ID in research using validated survey tools is both feasible and desirable. Recommendations include that projects consider the cost and methodological impacts of each mode during design.
Ageing-in-Place: Perceptions of people with intellectual disability and those without lifelong disability in rural and metropolitan NSW
Purpose of the Presentation: • Part of wider study that aimed to provide an assessment of gaps currently preventing the successful ageing in place of both people with and without life-long intellectual disability in rural and urban areas of NSW. • Study funded by the Illawarra Research Trust Research Foundation Grant. • This focus of this paper is an exploration of the individual's own understanding of ageing-in-place and the features that facilitate or impede the achievement of this goal.