Shahin Shooshtari

Care poverty describes situations where people do not receive enough care due to both individual and structural factors. Care poverty, as a novel concept, is gaining traction internationally, and this article is the first to examine care poverty in the Canadian context. Using nationally representative data from Statistics Canada’s 2018 General Social Survey on caregiving and care receiving, we estimate the prevalence of care poverty among Canadians over the age of 15 and examine the independent effects of socio-economic factors. Over one quarter (27.35 per cent) of Canadians with care needs experience care poverty. People living alone, those born outside of Canada and those between the ages of 45 and 64 are more likely to report receiving no support. High levels of self-rated stress, more severe disability and being female increase the odds of receiving some, though not enough, care. Our findings are contextualized in light of Canada’s social-liberal policy landscape and universal healthcare system, suggesting that Canadians whose care needs are perceived as medical and those who are able to rely on their family or the market to meet their needs may be less likely to experience care poverty. Further, our findings suggest that those living in absolute care poverty may only need small amounts of support to live independently at home.

Background: Children and adults with Trisomy 21 are more likely to develop nutrition-related conditions and diseases. The nutrition-related health of Canadians with Trisomy 21 is unknown. We aimed to determine the nutrient intake and physical activity of school-aged children with Trisomy 21 in Manitoba, Canada. Methods: Mothers of 14 school-aged children (n = 7 female, average age 9 years old) with Trisomy 21 completed a 24 h dietary recall and a survey that included questions about their children’s nutrition and physical activity. Nutrient intake analysis was conducted to compare food and beverage consumption with dietary guidelines and nutrient recommendations. Data were analyzed descriptively. Results: Most children with T21 included in this study consumed an adequate average intake of daily protein, carbohydrate, and iron; an inadequate average intake of daily dietary fibre and calcium; and an excessive average daily intake of added sugars and saturated fat. Notably, all children consumed inadequate vitamin D and excessive sodium. Most children consumed a dietary supplement (10/14), engaged in moderate-intensity physical activity (10/14), and were active for more than 60 min per day (12/14). Conclusions: Most children with Trisomy 21 included in this study met daily physical activity recommendations. However, despite a variety of foods reportedly consumed across all food groups, nutrient intake among school-aged children with Trisomy 21 included in this study was mixed, as both deficiencies and excessive amounts of some nutrients were observed. There is a need to improve the nutrient intake of children with Trisomy 21 to reduce their risk of developing nutrition-related conditions and diseases.

Purpose Symptom assessment is key to managing symptom burden following a cancer diagnosis. Adults with intellectual or developmental disabilities (IDD) experience worse outcomes from cancer; disparities may also exist in routine cancer symptom screening. This study investigated whether differences exist in routine cancer symptom assessment between people with and without IDD in a public healthcare system. Methods We conducted a matched retrospective cohort study of adults in Ontario, Canada, with and without IDD who received a cancer diagnosis between 2010 and 2019 using administrative health data. Among people with cancer, those with IDD were hard-matched 1:5 to those without IDD on age at diagnosis, sex, diagnosis year, cancer type and regional cancer centre registration. Cumulative incidence of first symptom assessment accounting for death as a competing risk was estimated. Sub-distribution and cause-specific hazards models were used. Effect modification by age, sex and cancer stage was investigated. Results A total of 1545 people with IDD were matched to 7725 people without IDD. Individuals with IDD experienced a lower incidence of cancer symptom assessment (1-year probability: 0.62 vs. 0.77) and lower rates of symptom assessment (sub-distribution HR: 0.63, 95% CI: 0.59, 0.67; cause-specific HR: 0.69, 95% CI: 0.65, 0.73) relative to those without IDD. Results were most pronounced for those in advanced cancer stages. Conclusion Among persons with cancer, the incidence of symptom assessment is lower for individuals with IDD compared to those without; the magnitude of these findings varied across cancer stages. These findings may indicate systemic barriers to equitable healthcare access for people with cancer and IDD.

Background: Individuals with intellectual or developmental disabilities (IDD) face increased cancer risks and disparities in cancer care accessibility and quality. Despite these concerns, there is limited research on cancer symptomology among individuals with IDD.Aims: This study explored differences in cancer symptoms between individuals with and without IDD.Methods: We conducted a matched retrospective study of adults in Ontario, Canada, with and without IDD who underwent cancer symptom screening using the Edmonton Symptom Assessment Scale‐revised (ESAS‐r), a patient‐reported outcome measure, within 5 years of a new primary cancer diagnosis. Using administrative health data, we performed 1:1 hard matching of individuals with cancer and IDD to those without IDD on age at diagnosis, sex, diagnosis year, cancer type, and registration at a regional cancer center. Conditional logistic regression models compared odds of moderate to severe and severe cancer symptoms.Results: Among 873 matched pairs, individuals with IDD had higher odds of experiencing severe (vs. moderate, mild, or no) cancer‐related symptoms compared to those without IDD. Symptoms included anxiety, depression, drowsiness, pain, shortness of breath, tiredness, and poor well‐being. Largest magnitudes of effect were for anxiety (odds ratio; OR: 2.20; 95% confidence intervals, CI: 1.68, 2.89) and depression (OR: 2.16; 95% CI: 1.54, 3.02). Similar trends were observed for moderate to severe cancer symptoms compared to mild or no symptoms.Conclusions: Patients with both cancer and IDD report higher symptom severity than those without IDD, emphasizing the importance of tailored interventions and support services to address their unique needs and alleviate symptom burden.

This article synthesizes findings, from the Autism/Dementia Work Group of the 2nd International Summit on Intellectual Disabilities and Dementia, on the nature of autism/autism spectrum disorder and later-age neuropathologies, particularly dementia. The convened group of experts explored genetic, neurobiological, and environmental risk factors that may affect the lifespan and lived experiences of older adults with autism. A review of current literature indicates a lack of comprehensive information on the demographics and factors associated with aging in autistic adults. However, our understanding of autism is evolving, challenging traditional views of it as a static, inherited neurodevelopmental disorder. The relationship between autism and other neurodevelopmental conditions—such as Down syndrome, fragile X syndrome, and tuberous sclerosis complex—reflects the complex genetic landscape of neurodevelopmental disorders. These genetic and familial factors may contribute to progressive health challenges and cognitive decline in later life. Key findings reveal a complex link between autism and dementia, despite limited research on this relationship, particularly among older adults. The overall prevalence of dementia in this population appears to be influenced by co-occurring intellectual disabilities, particularly Down syndrome. While the association between autism and specific types of dementia is still not well understood, the reviewed evidence suggests a notable connection with frontotemporal dementia, although causality has not been established. Exploration of biomarkers may offer further insights. Currently, the relationship between autism, cognitive health, and cognitive decline in older adults remains a complex and underexplored area of research.

We conducted a survey to learn what guides current dementia-related practice to support community-dwelling adults with intellectual and developmental disabilities who may be experiencing dementia in Canada. We invited organizations working in health, disability, or senior sectors in 4 Canadian provinces to complete an online cross-sectional survey between April and July 2023. A total of 173 people completed the survey, representing 125 unique organizations, and nearly half resided in Ontario. The most common support and services provided to adults with intellectual and developmental disabilities and their families were related to residential care, day programming, and group home living. Half of our survey respondents reported that they followed dementia-related practice guidelines. The most common guideline followed and early detection tool used were from the National Task Group on Intellectual Disabilities and Dementia Practices and the National Task Group-Early Detection and Screen for Dementia, respectively. Lack of awareness about guidelines and detection tools, challenges to implement the same, and organizational needs for future training and service provision were identified. Commitment to resources to monitor adults with IDD who may be experiencing dementia is recommended to provide meaningful support and service to them and their families.

There is abundant evidence that, following community transition or deinstitutionalization, persons with intellectual and developmental disabilities experience improvements in quality of life and well-being. However, very little research in this area has been conducted in the Canadian context. In this qualitative study, individual in-depth interviewing was used to explore the perspectives of eight Canadian mothers of adults with intellectual and developmental disabilities regarding their children’s residences and access to services after community transition. Within an interpretive description framework, narrative data collected during semi-structured interviews with participating mothers were analyzed using thematic analysis. Three main themes portraying a combination of positive and negative maternal perspectives emerged from the data: (1) quality of care, (2) quality of life, and (3) health status and behavior. The study findings bring attention to the importance of offering individualized community living options that are person- and family-centered to all persons with intellectual and developmental disabilities.

Worldwide, the community transition process away from institutions has increased in the past 30–50 years among persons with severe intellectual and developmental disabilities. This process, also known as “deinstitutionalization”, could potentially impact problem behaviors and communication. This study examined the impacts of community transitions on behavioural and communication outcomes in Canadians with intellectual and developmental disabilities. Data were collected using the Comprehensive Health Assessment Program and medical chart reviews. Descriptive, aggregate-level, and individual-level analyses were conducted for 32 adults who transitioned to community living. Descriptive analyses and the McNemar Chi-Square Test were conducted. Following community transitions, the study group experienced a significant decrease in problem behaviours and changes in communication. The study findings suggest that deinstitutionalization could provide effective strategies for addressing problem behaviors and fostering improvements in communication, promoting the well-being and quality of life of persons with intellectual and developmental disabilities.

In this case study, we described the challenges our interdisciplinary team of researchers faced in conducting a mixed-methods longitudinal study evaluating c