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.
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.
Down syndrome and dementia: Is depression a confounder for accurate diagnosis and treatment?
The past century has seen a dramatic improvement in the life expectancy of people with Down syndrome. However, research has shown that individuals with Down syndrome now have an increased likelihood of early onset dementia. They are more likely than their mainstream peers to experience other significant co morbidities including mental health issues such as depression. This case study reports a phenomenon in which three individuals with Down syndrome and dementia are described as experiencing a rebound in their functioning after a clear and sustained period of decline. It is hypothesized that this phenomenon is not actually a reversal of the expected dementia trajectory but is an undiagnosed depression exaggerating the true level of functional decline associated with the dementia. The proactive identification and treatment of depressive symptoms may therefore increase the quality of life of some people with Down syndrome and dementia.
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.
Pain management during end-of-life care: Support for individuals with intellectual disabilities
Aim: Examining the provision of end-of-life care for individuals with intellectual disabilities (ID) is a relatively new research area, with limited investigation of how such support is provided. The aim of this study was to identify aspects of current end-of-life care practices considered by carers to be unsatisfactory. Method: Focus groups with a total of 35 participants were conducted in two capital cities and four rural centres in New South Wales and Queensland, Australia. A semi-structured guide was used, with one specific focus being on pain management issues. All focus group data were independently transcribed, and thematic analysis was undertaken. Results: The participants identified problems with pain management for people with ID. These issues included failure to recognise the need for any pain management, poor identification of pain, limited monitoring of pain, communication problems and inappropriate review of treatments. Conclusions: Specific recommendations are made for Australian-based health and community services that support individuals with ID during end-of-life. These recommendations are premised on explicit changes to daily practice that better meet the pain management needs of individuals during their end-of-life.
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.
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.
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.
Personal relationships during end-of-life care: Support staff views of issues for individuals with intellectual disability
Background: Life expectancy for persons with intellectual disability has increased dramatically over the past decade, which has seen an associated rise in the need for end-of-life care. However, little is known regarding how end-of-life affects the individual’s personal relationships with family, friends and staff. Methods: Focus group interviews were undertaken with 35 disability support workers from four rural and two metropolitan locations in NSW and Queensland, Australia. A semi-structured interview guide was used, with a focus on gaining an understanding of the impact that end-of-life has on personal relationships for persons with intellectual disability. Results: The thematic analysis identified three key thematic areas: Relationships with Family, Relationships with Friends and Staff Roles. Relationships with Family had three sub-themes of ‘Active and Ongoing’, ‘Active but Limited’ and ‘After Death’. Relationships with Friends had two sub-themes of ‘Positive Experiences’ and ‘Negative Experiences’, and Staff Roles had two sub-themes of ‘Loss of Contact’ and ‘Default Decision Making’. Discussion: The frequency of family contact was not reported as increasing or decreasing following the diagnosis of a life-ending illness and during an individual’s end-of-life. A lack of counselling support was noted as potentially impairing the individual’s friends’ ability to cope with death. Staff also reported a number of concerns regarding how their relationships with the individual changed, particularly when end-of-life entailed potential movement of the individual with intellectual disability to a new residential setting.