Older and younger family caregivers of adults with intellectual disability: factors associated with future plans.
Older family caregivers of adults with ID carry more stress and less certainty about future care, so start the planning conversation early and make it concrete.
01Research in Context
What this study did
Chou et al. (2009) asked two groups of family caregivers about tomorrow. One group was older. One group was younger. All cared for an adult with intellectual disability.
The team used a survey. They wanted to know who felt more stress and what shaped their future-care plans.
What they found
Older caregivers said life felt harder. They reported lower quality of life, less help, and more worry about who would take over when they could not.
Younger caregivers felt more hopeful and more supported. Age, money, and health needs all guided what each family planned to do next.
How this fits with other research
Ghosh (2023) asked families in India the same question. Four in ten had not started any plan. Fear of the unknown froze them. The India study extends the Taiwan finding: worry crosses cultures and diagnoses.
Marsack-Topolewski (2020) mapped what aging caregivers of adults with ASD actually use. Almost half tap counseling or psychiatry, but only 28% join autism support groups. The survey design matches Yueh-Ching et al., yet the spotlight moves from worry to service uptake.
Rodríguez-Martínez et al. (2020) flipped the lens. They asked adults with ID about their own dreams. Higher self-determination predicted more future goals. Caregiver fear and self-advocate hope look opposite, but both point to the same need: clear transition plans.
Why it matters
When you meet an older parent at an ISP meeting, expect heavier stress and vague answers about "what happens when I’m gone." Build the agenda around concrete next steps: list housing options, name a backup caregiver, and schedule a support-group tour. One clear action lowers the worry today and prevents crisis tomorrow.
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02At a glance
03Original abstract
A structured interview survey was conducted in a major city in Taiwan to explore and compare older and younger family primary caregivers' well being and their future caregiving plans for these adults with intellectual disability. The sample size was 315 caregivers who were 55 years or older and who cared for adults with intellectual disability and 472 similar caregivers who were under 55 years of age. The results indicated that the older caregivers compared with younger ones reported a lower quality of life, less family support, a more negative perception of having a family member with intellectual disability, and greater worries about the future care arrangements of the adult with intellectual disability. Statistical analysis showed that predisposing, enabling, and need factors influenced the caregivers' future caregiving options.
Intellectual and developmental disabilities, 2009 · doi:10.1352/1934-9556-47.4.282