Polyhandicap and aging.

ABSTRACT

BACKGROUND: Knowledge of the health status and care management of elderly individuals with polyhandicap* is lacking; however, a better understanding of the natural course of ageing in persons with severe and complex disability would help optimize preventive and curative care management strategies. OBJECTIVES: To describe persons with severe and complex disability aged 18-68 years by providing i) a description of their health status and ii) a description of their medications, medical devices and rehabilitation procedures. METHODS: This was an 18-month cross-sectional study including people aged 18-68 years with a combination of severe motor deficiency and profound intellectual impairment. They were recruited from 4 specialized rehabilitation centres, 9 residential facilities, and a neurological department. The following data were collected aetiology of severe and complex disability, health status, medical devices, and rehabilitation procedures. RESULTS: A total of 474 persons with severe and complex disability were included (N = 219 [18-34 years], N = 151 [35-49 years], N = 104 [50-68] years). The aetiology of severe and complex disability was unknown for 13%-17% of persons with severe and complex disability across the 3 age classes. Behavioural disorders and pain were more frequent in the oldest age classes. Elderly persons with severe and complex disability had more severe but less unstable severe and complex disability. Their neurodevelopmental was close to that of a 4-month-old child without progression across age. Gastrostomy was the most frequent device needed by the persons with severe and complex disability. CONCLUSIONS: The longevity of persons with severe and complex disability is improving; some of these persons, among whom are the least unstable and with less comorbidity, can survive for more than 50 years due to the improvement of preventive actions and supportive care.