Mortality in people with intellectual disabilities in England

Background: People with intellectual disabilities (IDs) die at younger ages than the general population, but nationally representative and internationally comparable mortality data about people with ID, quantifying the extent and pattern of the excess, have not previously been reported for England. Method: We used data from the Clinical Practice Research Datalink database for April 2010 to March 2014 (CPRD GOLD September 2015). This source covered several hundred participating general practices comprising roughly 5% of the population of England in the period studied. General practitioner (GP) records identified people diagnosed by their GP as having ID. Linked national death certification data allowed us to derive corresponding mortality data for people with and without ID, overall and by cause. Results: Mortality rates for people with ID were significantly higher than for those without. Their all‐cause standardised mortality ratio was 3.18. Their life expectancy at birth was 19.7 years lower than for people without ID. Circulatory and respiratory diseases and neoplasms were the three most common causes of death for them. Cerebrovascular disease, thrombophlebitis and pulmonary embolism all had standardised mortality ratios greater than 3 in people with ID. This has not been described before. Other potentially avoidable causes included epilepsy (3.9% of deaths), aspiration pneumonitis (3.6%) and colorectal cancer (2.4%). Avoidable mortality analysis showed a higher proportion of deaths from causes classified as amenable to good medical care but a lower proportion from preventable causes compared with people without ID. International comparison to areas for which data have been published in sufficient detail for calculation of directly standardised rates suggest England may have higher death rates for people with ID than areas in Canada and Finland, and lower death rates than Ireland or the State of Massachusetts in the USA. Conclusions: National data about mortality in people with ID provides a basis for public health interventions. Linked data using GP records to identify people with ID could provide comprehensive population‐based monitoring in England, unbiased by the circumstances of illnesses or death; to date information governance constraints have prevented this. However, GPs in England currently identify only around 0.5% of the population as having ID, suggesting that individuals with mild, non‐syndromic ID are largely missed. Notably common causes of death suggest control of cardiovascular risk factors, epilepsy and dysphagia, management of thrombotic risks and colorectal screening are important areas for health promotion initiatives

Families' experiences of seeking out-of-home accommodation for their adult child with an intellectual disability

Research exploring the experiences of families during the process of seeking out‐of‐home accommodation for an adult son or daughter with intellectual disability is scarce. A study was undertaken to examine this process. Nine families currently seeking out‐of‐home accommodation for their adult son or daughter were interviewed and interview data were analyzed using thematic analysis. Two main themes were identified: (1) reasons for seeking housing and (2) experiences of seeking housing. Parents' aging and increased health problems along with the offspring's wish for greater independence were the main reasons for seeking out‐of home accommodation. Experiences of looking for a house were not straightforward in that parents often wanted to plan ahead but were prevented from doing so as the housing system prioritizes “housing crises.” Findings showed that families experienced seeking housing as stressful and frustrating and would like to see social care and housing professionals acknowledge them as collaborative partners in the process. The authors conclude there also needs to be greater clarity of expectation of the duration of finding suitable accommodation, a process that needs to be started early in a young adult's life

Physical and psychological health of family carers co-residing with an adult relative with an intellectual disability

Background: Providing long-term care to an adult relative with intellectual disability can impact negatively on caregivers’ health and well-being. Methods: Data were collected via online and postal questionnaires on 110 family carers’ physical and psychological health, family stress and perceived positive gains from caring. Psychological adaptation and carers’ satisfaction with available support were also examined. Results: Study participants reported more health problems than general populations. Higher support needs of care recipients were associated with increased family stress. Carers being female were associated with lower family stress. Older age and better socio-economic position were associated with better psychological outcomes. Other associations were consistent with psychological adaption and perceived helpfulness of support buffering negative outcomes and facilitating positive gains from caring. Conclusions: Family carers of adults with intellectual disability appear to experience poorer health outcome than population norms. Adaption to the caregiving role may buffer negative outcomes. Further large scale, population-based,longitudinal research is needed