| dc.description.abstract | Background: Over the past three decades the life expectancy of people with Down syndrome (DS) has dramatically increased with improvements in health service delivery, better knowledge, health care and advocacy. With increased longevity, comes age related change and complex health comorbidities. These health conditions include dementia, epilepsy, thyroid disorder and sensory impairment, some of which are associated with early mortality in this population. With comorbidities comes functional limitations and service providers throughout Irelands need to be informed of the common health conditions and the implications. Staff in services need to be alert for changes and decline that is seen earlier than expected in people with DS compared to people with ID of other aetiologies.
Aim: The aim of this study is to identify and explore the physical health changes that occur among those with DS as they age.
Methods: This study is situated within The Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS-TILDA) study. Information for this study was extrapolated across the threes Waves of the IDS-TILDA study over a 10-year period. Retention of participants from Wave 1 through to Wave 3 was 86% and this can be attributed to the ‘Keeping in Touch’ strategy that is employed by the IDS-TILDA Team. Using data from the IDS-TILDA study the key health conditions pertaining to people with DS are examined and discussed. All conditions discussed were stratified by age, gender, living circumstances and level of intellectual disability.
Findings: Life expectancy of those with DS remains considerably lower than people with intellectual disability of other aetiologies. Increasing age has revealed a predisposition for the development of complex health conditions with the prevalence of dementia having more than doubled over the ten years of the data collection. The mean age of onset of dementia was 51.6 years. Other chronic health conditions were identified and they too increased substantially over the 10-years study. The impact of decline in heath has had a considerable impact on functional ability, levels of independence and living circumstances, whereby people have had to move from their place of residence as it had outstripped its capacity to offer safe care with increased level of need. Attendance at healthcare specialists low and many individuals are not being assessed sufficiently. The need to understand ageing and related health conditions for people with DS is crucial. Health care providers need to be alert for health deteriorations earlier than anticipated in the general population, and young adults with DS should be given the appropriate information to better recognize, and recommendations to cope with, changes in their own level of ability or health.
Discussion: Mortality rates were higher in people with DS compared to people with ID of other aetiologies. Preventative health screening needs to be operationalised throughout all services in Ireland and a comprehensive health package should be offered to all people with DS from childhood. The lack of knowledge among service providers and staff around the recognition of the common health conditions in this population is notable by the level of under-recognition of the conditions that were presented. The upskilling of staff is critically important as is the collaboration of the multidisciplinary supports available. While some services in Ireland appear to have excellent multidisciplinary supports for people with DS, with clinics that deal exclusively with people with DS, the findings from this study has noted that most services are poorly prepared for an ageing population.
Conclusion: The under recognition of health comorbidities for people with DS in services remains a critical issue in Ireland today. The key areas that must be developed include health management, quality of life and the promotion of successful ageing. | en |
