Sweden has closed all institutions and imposed legislation to ensure service and support for individuals with intellectual disability (ID). Understanding mortality among older individuals with ID is ...essential to inform development of health promotion and disease control strategies. We investigated patterns and risk of mortality among older adults with ID in Sweden.
This retrospective cohort study compared older adults aged 55 years and older with ID with a control population. Participants were followed during 2002-2015 or death, and censored if they moved out of Sweden. Individuals with ID were identified from two national registers: one covering all specialist health-care visits (out-patient visits and hospitalisation) and the other covering people accessing social/support services. Individuals with ID (n = 15,289) were matched with a control population by sex, birth year, and year of first hospitalisation/out-patient visit/access to LSS services. Cause-of-death data were recorded using International Classification of Diseases, Tenth Revision. Cox proportional hazards regression were conducted to assess if overall and cause-specific mortality rate among individuals with ID was higher than in the Swedish population.
The overall mortality rate among individuals with ID was 2483 per 100,000 people compared with 810 in the control population. Among those who died, more individuals with ID were younger than 75 years and unmarried. Leading causes of death among individuals with ID were circulatory diseases (34%), respiratory diseases (17%) and neoplasms (15%). Leading causes of death in a sub-sample with Down syndrome (DS) were respiratory diseases (37%), circulatory diseases (26%) and mental/behavioural disorders (11%). Epilepsy and pneumonitis were more common among individuals with ID than controls. Alzheimer's disease was common in the control population and individuals with DS, but not among those with ID when DS was excluded. Individuals with ID had a higher overall mortality risk (hazard ratio HR 4.1, 95% confidence interval CI 4.0-4.3) and respiratory disease death risk (HR 12.5, 95% CI 10.9-14.2) than controls.
Older adults with ID in Sweden carry a higher mortality risk compared with the general population, mainly attributable to respiratory, nervous and circulatory diseases. Care for this group, particularly during the terminal stage of illness, needs to be tailored based on understanding of their main health problem.
The COVID‐19 pandemic has meant a rapid transfer of everyday activities to the online world. Information and communication technologies (ICTs) have become more embedded than ever in people's lives. ...This investigation addresses how this change has affected the lives of people with intellectual disabilities (ID). A two‐step design was used. A rapid review was conducted on empirical studies published between January 2019 and June 2021. Search terms related to ID, ICT use and COVID‐19. A qualitative international bricolage was also conducted corresponding to author nationalities. Data gathered from the review and bricolage were analysed separately using thematic analysis and relationally synthesised. Digital solutions to provide access to COVID‐19 information and guidance seemed inadequate but were seldom empirically studied. Digital poverty, literacy and exclusion remain significant issues for people with ID internationally. People and their carers experienced reduced and removed service provision, loneliness and impoverished daily lives during the pandemic; amelioration of which was facilitated by digital solutions. One solution often used was videoconferencing. Prior experience of digital participation, adequate finances, connection, support and digital literacy mentoring for both people with ID and those providing services and support facilitated digital inclusion. Digital exclusion during COVID‐19 was exacerbated by sociopolitical, structural, individual and support‐related barriers. Although awareness of digital exclusion appears to have been raised, the extent to which this has led to action and change remains unclear. Despite digital exclusion and digital participation benefitting continuation of life, social and emotional well‐being and autonomy, COVID‐19 has not provided the impetus to eradicate digital poverty for people with ID. Governmental support, digital education, creativity and problem solving are required to enable people with ID the human right to be included in the digital world at this essential time and into the future.
Background
People with intellectual disabilities are less physically active and suffer from ill‐health more than the general population. Support staff play an important role in the person's life. ...This study aimed to explore the support staff's experiences regarding the feasibility of adapted web‐based exercise for people with intellectual disabilities.
Method
Participants with intellectual disabilities living in community‐based settings were recruited for a web‐based exercise study. Eight semi‐structured interviews were carried out with their support staff before and after the intervention period.
Results
The main theme, ‘Support staff are crucial for feasibility’ encompasses the importance of communication, structure, and motivation in improving physical activity for people with intellectual disabilities.
Conclusion
The experiences of support staff, indicate that a web‐based exercise program is feasible for the target group, and one way to overcome challenges for PA, where the role of the staff is crucial.
The aim of this study was to describe the social care provided for different age groups of people with intellectual disability, 55 years or above, and to investigate the association between such care ...and frailty factors for those with diagnosed level of intellectual disabilities. Descriptive and logistic regression analyses were used. Commonest forms of social care among the 7936 people were Residential care, Daily activities and Contact person. Home help and Security alarm increased with age. The frailty factors significantly associated with increased social care were age, polypharmacy and severe levels of intellectual disabilities. Persons most likely to be in residential care were in the age group 65–79 with polypharmacy and severe disability. The results indicate a need for further research of how frailty factors are considered in social care and longstanding medication, especially then severe intellectual disability hinders communication. A national strategic plan for preventive interventions should be developed to ensure the best possible healthy ageing.
Many people with an intellectual and developmental disability (IDD) are biologically, socially, and economically/politically vulnerable to developing SARS‐COV‐2 (COVID‐19) compared to the general ...population. Most governments have developed public‐health policies and strategies to address the challenges that COVID‐19 has presented. These policies and strategies have been based upon the general population and in fact could be detrimental to the health and well‐being of people with IDD. This paper provides a review of the key learning points emerging from the COVID‐19 literature, together with guidance for the provision of services and government interventions for people with an IDD for future pandemics. Using guidance from the Joanna Briggs Institute, a scoping review was used to explore the current literature (scientific and grey) on IDD and COVID‐19. Three core themes emerged from the review. Prevention/protection: User‐friendly accurate accessible information, handwashing and social distancing, Personal Protective Equipment, shielding, track and trace, testing, vaccine compliance/hesitancy, and training. Mitigation: Making reasonable adjustments both to where people live, and to community healthcare/clinical practice; and the use of technology as a pandemic‐response strategy. Treatment/Management: Access to acute hospitals and lifesaving equipment, using a suitable clinical fatality assessment instrument, stopping Do Not Resuscitate notices, individualised care plans and hospital passports, family/paid carers to support people in hospitals; and use of telehealth in clinical care. This is the first international scoping review that provides a narrative synthesis of emerging themes related to the COVID‐19 pandemic and people with an IDD. This paper highlights themes related to preventing, mitigating, and treating/managing the care of this population during the COVID‐19 pandemic, which can inform future public‐health policies. This paper also exposes the negative impacts of public‐health interventions in both High‐Income Countries and Low‐Middle Income Countries for this population including lapses in upholding human rights. These data provide a basis for learning from the COVID‐19 pandemic in planning for future pandemics.
This study sought to explore different understandings of participation in daily activity services among people with intellectual disabilities. Using a pedagogical sociocultural perspective, the ...research focused on individuals’ perspectives and understandings as well as their account of social interaction, working and learning. In all, 17 people working in daily activity services were interviewed once, and, of these, 14 were interviewed a second time. Using qualitative content analysis, two themes and three categories were singled out. The results show that participation can be understood in two major ways: social interaction and performing work tasks.
This paper aims to give a short description of Swedish healthcare provision for persons with intellectual and developmental disabilities (IDD). Swedish persons with IDD should have access to the ...general healthcare system on the same terms as the general population, and thereby enjoy equal opportunities for healthcare of good quality. Reports from government agencies and interest groups, however, describe a decentralised and fragmented healthcare system that requires significant coordination; a lack of adjustments; a lack of specialised healthcare professionals; and gaps in healthcare provision. Research in recent years has reported unequal access to planned healthcare; excess mortality and premature deaths; and insufficient or inadequate support in end‐of‐life care. We conclude that health inequalities and healthcare challenges faced by Swedish persons with IDD might be caused by obstacles at several structural levels. Allowing persons with IDD to access timely and adequate healthcare requires the development of better opportunities for coordination of healthcare and social services, as well as training for healthcare professionals and direct support staff.
This study evaluates a multifactorial school-based intervention with the aim of decreasing cardiometabolic risk factors by means of a healthy lifestyle, primarily with daily physical activity and ...healthy food during school hours, at an upper secondary school for students with intellectual disabilities. The outcome is measured in terms of cardiometabolic risk factors and cardiovascular fitness, both known to increase the risk of future cardiovascular disease, type 2 diabetes and cancer. Two years of intervention resulted in a positive trend in several measured cardiometabolic risk factors, with no increase in fat mass. Cardiovascular fitness levels were unchanged. We conclude that a healthy school environment can contribute to a deceleration of both fat mass gain and loss of cardiovascular fitness.
Adults with intellectual disabilities (IDs) have poor lifestyle‐related health compared with the general population. Our aim was to study whether such differences are present already in adolescents.
...Aim: To compare the prevalence and severity of cardio‐metabolic risk factors and cardio‐vascular fitness in adolescents with and without IDs.
Methods: Intellectual disability (ID) students (n = 66) and non‐intellectual disability (non‐ID) students from practical (non‐ID‐p) (n = 34) and theoretical (non‐ID‐t) (n = 56) programmes were recruited from three upper secondary schools. Anthropometric data, blood pressure, body composition, fasting‐insulin, fasting‐glucose, fasting‐lipids and cardio‐vascular fitness were measured.
Results: Participants with and without ID differed significantly in the prevalence of cardio‐metabolic risk factors with participants with ID having a higher percentage of total fat mass, wider waist circumferences (WCs), lower levels of fat‐free mass (FFM), lower bone mineral density (BMD) and higher insulin and homeostasis model assessment of insulin resistance (HOMA) levels and poorer cardio‐vascular fitness. The healthiest levels were found in the non‐ID‐t group compared to the group with ID and the group with non‐ID‐p in between.
Conclusion: The prevalence of cardio‐metabolic risk factors and poor cardio‐vascular fitness was found to be high in this young population with intellectual disabilities. Measures should be taken to improve the health messages directed towards children and adolescents with intellectual disabilities.
Mental health disorders are prevalent among individuals with intellectual disabilities (ID). However, there is a lack of research on the impact of concomitant autism spectrum disorders (ASD) or ...attention deficit hyperactivity disorder (ADHD) on the mental health within this population. We aimed to investigate the prevalence of mental health disorders and registered healthcare visits due to self-harm among individuals with ID.
We used administrative data for all healthcare with at least one recorded diagnosis of mental health disorder or self-harm during 2007-2017 among people with a diagnosis of Down syndrome (DS; n = 1298) and with ID without DS (IDnonDS; n = 10,671) using the rest of the population in Stockholm Region (n = 2,048,488) for comparison.
The highest odds ratios for a mental health disorder were present in females with IDnonDS (9.01) followed by males with IDnonDS (8.50), compared to the general population. The ORs for self-harm among individuals with IDnonDS were high (8.00 for females and 6.60 for males). There were no registered cases of self-harm among individuals with DS. The prevalence of an anxiety or affective disorder was higher among individuals with ID including DS with concomitant ASD or ADHD. Neighbourhood socio-economic status was associated with a lower occurrence of mental health disorders and self-harm in wealthier areas for all outcomes and for all groups.
Self-harm and psychiatric comorbidities were common among individuals with ID without DS with an attenuated difference among those with concomitant ASD or ADHD, which calls for attention.
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