Ageing persons with intellectual disability, health and mortality, healthcare utilization and social welfare: a Swedish national longitudinal population study

It is well-known that the average lifespan among people with mental retardation or intellectual disabilities acquired early in life is increasing and that it is becoming more common for them to reach the retirement age and more. At the same time, it is a group which has difficulties stating their needs and for whom there exists no national research which illuminates their ageing process with focus on their needs of healthcare, social services, usage of medicines on the basis of disease panorama and causes of death. Research on these factors is important in order to increase the knowledge about their situation and to be able to plan, coordinate and execute a good care process. The aim of this project is to investigate health in terms of diseases, utilization of healthcare and social services, usage of medicines and causes of death among older persons with intellectual disabilities acquired early in life compared to older people without these disabilities in the Swedish population. The selection includes nearly 8000 persons with intellectual disabilities (aged 55 or older) and who are registered in the LSS-register. Access to this register has been granted through the National board of health and welfare. These are then matched (one control per case) on the basis of birth year and sex with data from the Swedish population register. Data used is for a ten year period from the LSS-register, Patient register, prescribed drug register, the Social service measures for older people register and Cause of death register. The results will be based on statistical analysis and this is the first national study on this frail group of people. The project will result in nine or ten sub-studies with case control design based on different specific questions which can be answered by these five national registers. The project has received ethical approval from the Regional Ethical Review Board in Lund (reg. no. 2013/15) and has under gone a special secrecy review by the National Board of Health and Welfare and Statistics Sweden. The research group works with anonymous data. The project is performed in close collaboration with the disability organisation FUB and FoU-Malmö City. The incitement for starting the research is implementation of improved healthcare and social services for older persons with intellectual disability.