Current support and anticipating future needs of ageing caregivers and their ageing adult children with intellectual disability

Abstract

Aim: To describe current support received and anticipated future needs of ageing caregivers of ageing adult children with intellectual disability (ID) in order to help inform the development of appropriate services and interventions to enable them to continue to live comfortably.

Methods: A qualitative interview study was conducted on 60 ageing family caregivers of their adult children with mild or moderate ID who were using sheltered workshops in Hong Kong. Audio-taped interviews lasting for 45-90 minutes were content-analyzed.

Results: Sheltered workshop was the major source of service and relief for the caregivers and their adult children with ID. While many caregivers described the reliance on the family and social support to release caring stress and emotions, some of them faced the difficulties and hardships alone owing to the loss of spouses or poor family relationships. It was the sheer personal strengths and positive coping strategies that moved them on and delayed contemplating long-term care. To embrace the situation of ‘double ageing’ in the near future, hopes for supportive services in the medical, financial and accommodation aspects shall be discussed.

Conclusion: Findings can provide understanding of current support and future needs of ageing caregivers and their offsprings with ID. Listening to the caregivers can gain insights into the authentic daily life issues, and identify timely and appropriate services to target at their actual needs in the long-term care journey, especially to be better prepared for the ‘double ageing phenomenon’ that involve both parties.