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.

Panoramic radiographs and dental patients with Down syndrome: A scoping review.

INTRODUCTION: Life expectancy for people with Down syndrome (DS) has increased to 60 years, although poor oral health affects their quality of life. Panoramic radiographs (PRs) are usually well-tolerated by people with DS and can provide valuable diagnostic data for treatment planning and research. Methods A scoping review of peer-reviewed articles published between 1971and 2021 was conducted in accordance with the PRISMA extension for scoping reviews to determine the scope of use of PRs for people with DS. RESULTS: 937 papers were screened, and 52 papers were included and charted into seven categories in this review. A high prevalence of tooth agenesis (TA) and other anomalies were reported in 45% of papers. Severe periodontal disease was considered characteristic of DS in the 1970s-80s and the benefit of time-consuming treatment was questioned. Since 2000 case reports illustrate that improved oral care, orthodontic treatment, and dental implants under local or general anaesthetic can improve the quality of life for people with DS. CONCLUSION: PRs play an important role in the diagnosis of anomalies, periodontal disease, and implant planning for patients with DS. This review highlights the gaps in research of caries, pathology, TMJ, systemic disease indicators, and guidelines for dentists. Systematic PR viewing, with a knowledge of characteristic features of DS, will assist diagnosis of pathology and improve comprehensive dental care treatment planning for children and adults with DS.

Mitigating the impact of the 'silos' between the disability and aged-care sectors in Australia: Development of a Best Practice Framework.

BACKGROUND: Although a 'person-centred focus' is a legislated objective for both aged-care and disability services sectors in Australia, evidence suggests limited translation into systems and practices due to entrenched silos. This paper proposes a Best Practice Framework to mitigate these silos. METHODS: Mixed-methods research comprising key informant interviews with major stakeholders across both sectors; a survey of people with/without intellectual disability aged 60+ years; qualitative in-depth interviews; and survey of health professionals. RESULTS: There is an urgent need to develop inter-sectoral 'integrated care systems'. Key components include choice in accommodation; regular assessment of health and well-being indicators; development and adoption of nationally consistent policies/standards across integrated aged- and disability-care sectors; improved strategies for workforce planning; and upskilling of existing staff including place-based collaboration. CONCLUSIONS: An integrated service model requires collaboration on broader public policy instruments, appropriate planning and resourcing. A strategic shift is required to ensure better quality person-centred support systems.

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.

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 the 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.

Challenges in providing end-of-life care for people with intellectual disability: Health services access.

BACKGROUND: Increasing life expectancy for people with intellectual disability is resulting in greater need for end-of-life care services. However, limited knowledge is available regarding what barriers to accessing end-of-life care support are evident, particularly comparatively across rural and metropolitan locations. METHODS: Focus group interviews were undertaken with 35 direct-care staff from four rural and two metropolitan locations. A semistructured interview guide was used, with a focus on health service access. All focus group data were independently transcribed, with thematic analysis then performed. RESULTS: Frequency analysis identified 262 statements relating to health services access. Thematic analysis identified four key areas of "isolation," "support from doctors," "general health support access" and "internal staffing issues." CONCLUSIONS: Improved access to end-of-life services is urgently required across both rural and metropolitan areas. Development of specialist training and support models for both disability and general healthcare staff may assist to reduce some identified barriers.

Outdoor areas of Australian residential aged care facilities do not facilitate appropriate sun exposure.

OBJECTIVE: The aim of the present study was to assess whether the outdoor areas of residential aged care facilities used for a sunlight intervention trial had the design features that encouraged participants' use of these spaces. METHODS: The design principles recommended in the 'Vitamin D and the Built Environment in Victoria' guidelines were used to assess the outdoor spaces of residential aged care facilities that were used in a randomised controlled trial (RCT) of sunlight exposure. Attendance rates in the sunlight RCT were analysed in relation to global impression scores of the facilities using one-way analysis of variance. RESULTS: Thirty-six outdoor areas of 31 facilities were assessed. The facilities met the guidelines for sun exposure, and were generally safe and accessible. However, many lacked privacy, security and aesthetic appeal. Most of the outdoor spaces were not used for regularly scheduled activities. Attendance rates were higher in those facilities with the highest global impression scores compared with those with the lowest scores (F(2,367) = 3.262, P = 0.039). CONCLUSIONS: The physical environment of the outdoor areas of residential aged care facilities was associated with their use for sunlight exposure. Suitably designed or modified spaces have the potential to encourage their greater use, and residential aged care facilities should also plan regular activities in those areas. These measures can facilitate safe sun exposure, as well as physical activity and social interaction in older people.

Vitamin D response of older people in residential aged care to sunlight-derived ultraviolet radiation.

UNLABELLED: The aim of this study was to determine the vitamin D response to sunlight ultraviolet radiation in older people. Increases in vitamin D depended on the season of exposure, but the changes were small. Natural sun exposure is not a practical intervention for vitamin D deficiency in this population. PURPOSE: The purpose of this study is to measure the ultraviolet radiation (UVR) exposure of those in residential aged care in an earlier trial of sunlight exposure and to determine its effect on their vitamin D response. METHODS: Attendance data, demographic, clinical and biochemical variables for 248 participants were used for a secondary analysis of a previous cluster randomized trial of sunlight exposure and falls. The ambient solar UV Index data were used to calculate the participants' UVR dose. Multiple linear regression was used to test if UVR exposure over 6 months, as measured by the standard erythemal dose (SED), was a predictor of vitamin D response, controlling for age, gender, BMI, calcium intake, baseline vitamin D and season of exposure. RESULTS: The median 25-hydroxyvitamin D (25OHD) was 32.4 nmol/L at baseline and 34.6 nmol/L at 6 months (p = 0.35). The significant predictors of 25OHD at 6 months were UVR exposures in spring-summer (coefficient = 0.105, 95 % confidence interval (CI) 0.001-0.209, p = 0.05) and autumn-winter (coefficient = 0.056, 95 % CI 0.005-0.107, p = 0.03) and baseline vitamin D (adjusted coefficient = 0.594, 95 % CI 0.465-0.724, p = 0.00). In those starting sunlight sessions in spring, an increase of 1 unit in log SED was associated with 11 % increase in 25OHD. CONCLUSIONS: Natural UVR exposure can increase 25OHD levels in older people in residential care, but depends on the season of exposure. However, due to inadequate sun exposure, 25OHD did not reach optimal levels. Nevertheless, where sun exposure is encouraged in this group, the focus for the start of exposure should be in the months of spring or autumn, as this timing was associated with a vitamin D response.

Influence of the environment on participation in social roles for young adults with down syndrome.

BACKGROUND: The concept of disability is now understood as a result of the interaction between the individual, features related to impairment, and the physical and social environment. It is important to understand these environmental influences and how they affect social participation. The purpose of this study is to describe the social participation of young adults with Down syndrome and examine its relationship with the physical and social environment. METHODS: Families ascertained from the Down syndrome 'Needs Opinion Wishes' database completed questionnaires during 2011. The questionnaires contained two parts, young person characteristics and family characteristics. Young adults' social participation was measured using the Assessment of Life Habits (LIFE-H) and the influences of environmental factors were measured by the Measure of the Quality of the Environment (MQE). The analysis involved descriptive statistics and linear and logistic regression. RESULTS: Overall, participation in daily activities was higher (mean 6.45) than in social roles (mean 5.17) (range 0 to 9). When the physical and/or social environment was reported as a facilitator, compared to being no influence or a barrier, participation in social roles was greater (coef 0.89, 95%CI 0.28, 1.52, coef 0.83, 95%CI 0.17, 1.49, respectively). The relationships between participation and both the physical (coef 0.60, 95% CI -0.40, 1.24) and social (coef 0.20, 95%CI -0.47, 0.87) environments were reduced when age, gender, behavior and functioning in ADL were taken into account. CONCLUSION: We found that young adults' participation in social roles was influenced more by the physical environment than by the social environment, providing a potentially modifiable avenue for intervention.

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.

Relationship between family quality of life and day occupations of young people with Down syndrome.

PURPOSE: To explore relationships between family quality of life, day occupations and activities of daily living (ADL) of young persons with Down syndrome. METHOD: Data were collected from 150 families with a young person with Down syndrome aged 16-30 years participating in the Down syndrome "Needs Opinions Wishes" database. Data described the young person's characteristics (including functional abilities, behaviour and day occupations) and family characteristics (including income, family and community supports and quality of life). RESULTS: Compared to families of young people attending open employment, families of young people participating in sheltered employment tended to report poorer family quality of life, after adjusting for personal characteristics, behaviour and income (coeff -6.78, 95 % CI -14.38, 0.81). Family supports reduced this relationship (coeff -6.00, 95 % CI -12.76, 0.76). Families of young people with greater functioning in ADL reported better family quality of life regardless of personal and environmental factors (coeff 0.45, 95 % CI 0.05, 0.85) and inclusion of family factors such as family supports reduced this association (coeff 0.29, 95 % CI -0.10, 0.67). CONCLUSIONS: Participation of young people with Down syndrome in open employment may positively influence family quality of life. Services that facilitate functioning in ADL and assist the families in accessing suitable family supports have the potential to positively influence family quality of life.

Building an inclusive research team: the importance of team building and skills training.

BACKGROUND: Inclusive research teams typically describe their experiences and analyse the type of involvement of researchers with disability, but the process of building research teams and the need for research training still remain underexplored in the literature. MATERIALS AND METHOD: Four researchers with intellectual disabilities and four academic researchers developed an inclusive research team. The team conducted 15 research training sessions, focused on investigating the well-being of older women with intellectual disabilities. They used mobile technology to support research skills acquisition. RESULTS: Findings included the experiences of all team members regarding the team building during training. CONCLUSIONS: To become an effective inclusive research team, all team members, regardless of ability, need to bring their own experiences and also learn necessary research skills. This paper highlights the need for team building, joint research training among all members of the research team and strategies supporting the peer-mentoring within the team. We are a team of four researchers with intellectual disabilities and four academic researchers without an intellectual disability. Our aim has been to learn about research together. We want to do this so that we can carry out a research project together about how older women with intellectual disabilities live. We have decided to call our team 'Welcome to our Class'. We have been working together for 9 months. In this time we have had 15 research training meetings. We have learned What research is How to work out a research question, that is what we want to find out about How to get information on what we want to find out. Here we thought of interview questions we could ask older women with intellectual disabilities. We are now meeting once a month, and have just begun our research on finding out how older women with intellectual disabilities live. We are now starting to use what we have learned.

From diminished men to conditionally masculine: sexuality and Australian men and adolescent boys with intellectual disability.

Men and boys with intellectual disability represent a unique group who have hitherto been overlooked by researchers and theorists exploring men and masculinities. Qualitative data from an Australian ethnographic study focused on the sexual health needs of men and adolescent boys with moderate to profound intellectual disability. Findings suggest that masculinity for this group of men is more a biopsychosocial phenomenon than a social construct organised around heteronormative ideals. The conditional masculinity of the men participating in the study was based instead on a number of intrinsic and external factors, which are described in detail.

Masculinity theory in applied research with men and boys with intellectual disability.

Researchers in intellectual disability have had limited theoretical engagement with mainstream theories of masculinity. In this article, the authors consider what mainstream theories of masculinity may offer to applied research on, and hence to therapeutic interventions with, men and boys with intellectual disability. An example from one research project that explored male sexual health illustrates how using masculinity theory provided greater insight into gendered data. Finally, we discuss the following five topics to illustrate how researchers might use theories of masculinity: (a) fathering, (b) male physical expression, (c) sexual expression, (d) men's health, and (e) underweight and obesity. Theories of masculinity offer an additional framework to analyze and conceptualize gendered data; we challenge researchers to engage with this body of work.

Gendered service delivery: a masculine and feminine perspective on staff gender.

Despite acknowledgement that paid caregivers have a significant impact on the lives of people with intellectual disability, the subjective experience of staff gender is rarely considered in research. Qualitative data from a study on the sexual health needs of men and boys with intellectual disability is presented. We designed this study to determine what impact staff gender has on the sexual health needs of men and boys with intellectual disability. Findings suggest that although staff traverse the same geographies of care, they do it in uniquely gendered ways. Staff gender is an important consideration when dealing with sexual health matters and can enhance the type and quality of relationships between people with intellectual disability.

The longitudinal relationship between behavior and emotional disturbance in young people with intellectual disability and maternal mental health.

Although elevated rates of parent psychosocial distress have been associated with child behavior and emotional problems, little is known about the nature of this relationship over time. This study followed an epidemiological cohort of children and adolescents over 11 years with 4 waves of data collection. Within this cohort, complete data were available on 238 mothers and their children. Behavior and emotional problems were assessed using the DBC, maternal mental health with the GHQ. Multivariate growth curve modelling was used to evaluate the commonality of individual change patterns. High levels of mental health problems were reported, which were stable over time. Higher scores on the DBC were associated with higher rates of mental health problems. Increases in child social relating problems were associated with increases mental health symptoms, particularly depression and anxiety.

A masculine perspective of gendered topics in the research literature on males and females with intellectual disability.

BACKGROUND: A focus on male social pathologies may have evolved within parts of the intellectual disability research literature. This article explores this notion and makes some connections between mainstream gender theory about hegemonic masculinity and the current gendered discourse in intellectual disability research. METHOD: We conducted a thematic analysis of all journal article titles from four prominent intellectual disability journals where "man," "woman," "men," "women," "male," "female," "girl," and "boy" were mentioned in the title. RESULTS: Thematic differences were identified between articles that focused on males or females, with less research attention on male health compared with female health. A strong focus was evident on problematised male sexual behaviour. CONCLUSIONS: There is a distinct difference evident between articles that problematise males and articles for females encouraging health promotion that suggests a disparate focus on male social pathologies. A deeper contextual analysis of unique sex differences in research is proposed.

Correlated and coupled within-person change in emotional and behavioral disturbance in individuals with intellectual disability.

Individual change and variation in emotional/behavioral disturbance in children and adolescents with intellectual disability has received little empirical investigation. Based on 11 years of longitudinal data from the Australian Child to Adult Development Study, we report associations among individual differences in level, rate of change, and occasion-specific variation across subscales of the Developmental Behavior Checklist (DBC) with 506 participants who had intellectual disability and were ages 5 to 19 years at study entry. Correlations among the five DBC subscales ranged from .43 to .66 for level, .43 to .88 for rate of change, and .31 to .61 for occasion-specific variation, with the highest correlations observed consistently between disruptive, self-absorbed, and communication disturbance behaviors. These interdependencies among dimensions of emotional/behavioral disturbance provide insight into the developmental dynamics of psychopathology from childhood through young adulthood.

Service and support needs of Australian carers supporting a family member with disability at home.

BACKGROUND: As part of an international, multicentre project, the service and support needs of Australian family carers were investigated. METHOD: A sample of 1,390, 448 family carers completed a self-report survey, including an adaptation of the Family Needs Survey (FNS) and several open-ended questions. A mixed method design was used, employing quantitative and qualitative analyses. RESULTS: On the FNS the most frequently endorsed items were those relating to the need for information about services and, in particular, future, out-of-home accommodation. Similarly, the need for respite services was endorsed by over 80% of respondents. Comments indicated that access to and the quality of respite, day support, and therapy programs were a priority. CONCLUSIONS: Participants expressed the need for greater access to information. Access to appropriate respite options, together with quality day support and therapy services, remain a priority for family carers.