“One does not forget, it all comes back”: elderly people with intellectual disability review adversities and stress-protection in their lives

Abstract

Purpose People with intellectual disability are reported to encounter many negative life events during their increasingly long lives. In the absence of protective elements, these may cause toxic stress and trauma. Given the reported negative effects of such adverse events on their quality of life (QoL), the perspective of older people with intellectual disability themselves may be of relevance. The paper aims to discuss these issues. Design/methodology/approach The authors questioned nine participants with mild intellectual disability, aged 61–88 years old, in four 90-min focus group sessions and thematically analysed the data. Findings Many recent and bygone negative life events still weighed heavily on the participants. Negative interactions, experiences of loss, lack of control and awareness of one’s disability caused stress. Their emotional response contrasted with their contentment, compliance and resilience. Having (had) good relationships, having learnt coping skills, remaining active, talking about past experiences and feeling free of pain, safe, well supported, capable, respected and involved seemed to heighten resilience and protect participants from toxic stress. Research limitations/implications Monitoring and preventing adverse (childhood) experiences, supporting active/emotional coping strategies, psychotherapy and life story work may facilitate coping with negative events and enhance QoL of elderly people with intellectual disability. Originality/value Elderly people with mild intellectual disability run a higher risk of experiencing (early) adverse events in life. They are very capable of talking about their experiences, QoL, and the support they need. Focus groups were a reliable method to capture their insights.