Parental Age and Stress in Caregivers of Individuals with Angelman Syndrome: Insights from the LADDER Cohort

TL;DR

This study explores how the age of caregivers affects stress levels in parents of children with Angelman syndrome.

Contribution

The study identifies specific stress domains linked to maternal age in caregivers of individuals with Angelman syndrome.

Findings

Older maternal age correlates with increased stress in adaptability, reinforcement, and mood domains.

Child age also significantly correlates with stress in adaptability and mood.

Age-responsive interventions are recommended for caregivers of children with Angelman syndrome.

Abstract

Angelman syndrome (AS) is a rare neurogenetic disorder characterized by severe developmental delay including minimal speech and motor impairments. As individuals with AS grow older, many parents provide intensive support into their own later life. Using data from the Angelman Syndrome Natural History Study, via the Linking Angelman and Dup15q Data for Expanded Research (LADDER) Database, we examined how maternal age relates to stress domains. Our sample included 268 participants (591 observations), with maternal ages of 23–64 years (baseline mean = 36, SD = 7.1). Mixed-effects REML regression models assessed associations between child and maternal age and 16 stress domains from the Parenting Stress Index. Maternal age was significantly linked to increased stress in child adaptability (β = 0.574, p = .014), reinforcement (β = 0.566, p = .008), demandingness (β = 0.692, p < .001), mood (β = 0.864, p < .001), isolation (β = 0.653, p = .005), and total stress (β = 0.548, p = .012). These effects held after adjusting for child age, which also correlated with stress in adaptability (β = 1.007, p < .001) and mood (β = 1.269, p < .001). Older caregivers face compounding stress from aging children’s behavioral challenges and their own age-related vulnerabilities. Age-responsive interventions are needed to support long-term caregivers and guide future research into late-life caregiving in rare neurodevelopmental disorders.