More Than One in Five Adults Affected by Disability Within Their Family, Ined Study Reveals

Twenty years after its foundational "Families and Employers" survey, the National Institute for Demographic Studies (Ined) has revisited the intricate links between family life and professional careers. The findings from this latest edition, published in June 2026, offer an unprecedented estimation of the number of individuals navigating the complexities of disability within their family circles. The survey underscores a stark reality: social health inequalities are profoundly pronounced in the experience of disability, and parenting a child with a disability significantly impacts professional trajectories.

The pervasive nature of disability extends far beyond common perceptions. Preliminary results from the "Families and Employers" (FamEmp) survey, conducted by Ined in 2024 among over 41,000 individuals aged 20 to 65, reveal that more than one in five adults are affected by severe disability, either their own or that of a parent, spouse, or child. This comprehensive study, the first of its kind to examine disability at the family level, uncovers often-hidden realities: significant social inequalities in the face of parental disability, diverse forms of caregiving dictated by familial ties, and the particular vulnerability of parents of children with disabilities.

An Unprecedented Measure of Family Disability

In France, disability is legally defined, according to the law of February 11, 2025, as "any limitation of activity or restriction of participation in social life experienced by a person in their environment due to a substantial, lasting, or definitive impairment of one or more physical, sensory, mental, cognitive, or psychological functions, a polyhandicap, or an invalidating health disorder." This broad and inclusive definition, while comprehensive, complicates the precise enumeration of affected individuals due to the sheer diversity of situations it encompasses. Crucially, it sets no age criteria, applying equally to children and adults and encompassing age-related loss of autonomy.

The FamEmp survey provides a unique and illuminating perspective on this challenge. By collecting information not only from respondents but also about their parents, spouses, and children, it allows for the first time an estimation of the number of people confronted with disability across their entire family unit. The survey utilizes a global indicator of activity restriction, now integrated into the annual population census questionnaire. Severe disability is identified in individuals experiencing lasting and significant limitations in daily activities due to a health problem.

Under this definition, severe disability affects 22% of individuals aged 20 to 65. Of these, 4% are personally affected, 16% are impacted through a parent, spouse, or child, and 2% fall into both categories. This proportion steadily increases with age, rising from 13% among 20-29 year olds to 28% among those aged 50-65. This finding highlights a critical demographic shift, where the experience of disability is increasingly interwoven with the fabric of family life across all age groups.

Parental Disability: A Socially Marked Reality

Among the various forms of disability impacting families, the presence of a disabled parent is by far the most frequent. Within the 20-65 age bracket, 15% of individuals report having a father or mother with significant limitations in their daily activities. The essential role of filial care in supporting parental autonomy is well-established, yet this support is often conceptualized through the experiences of individuals nearing retirement, whose parents are typically older.

While individuals aged 50-59 are more frequently affected – with 18% reporting a parent with significant limitations, likely due to the increased prevalence of age-related health issues – the survey reveals that younger adults are far from being spared. 11% of 20-29 year olds, 15% of 30-39 year olds, and 17% of 40-49 year olds report having a parent with such limitations.

More significantly, social inequalities are markedly more pronounced at these younger ages. Among 20-29 year olds, individuals from modest backgrounds are three times more likely to have a parent with significant limitations than those from privileged backgrounds (22% versus 7%). This demonstrates how social health inequalities persist into family experiences of disability. This social gradient diminishes with age but is still observed among 30-39 and 40-49 year olds, disappearing only after age 50. This disappearance is not due to an erasure of health disparities but rather to the fact that more profound health issues lead to the earlier mortality of parents from the most modest backgrounds. For instance, among 60-65 year olds who grew up in a modest family, 34% still have at least one living parent, compared to 47% among those from privileged backgrounds. This stark statistic underscores the long-term, intergenerational impact of socioeconomic status on health outcomes.

Near-Systematic Commitment for Young Children

The presence of a disabled family member does not automatically translate into becoming a caregiver, and the intensity of this commitment varies significantly by familial relationship. When disability affects a parent, who is often not living in the same household, nearly two-thirds of individuals aged 20-65 declare themselves as non-caregivers. When they do provide assistance, it is predominantly weekly or occasional.

The situation is markedly different for a disabled spouse, who typically cohabits with the respondent. Here, involvement is far more frequent: 16% of individuals report assisting "all the time or almost" and 36% at least once a day.

However, the most profound level of commitment is observed with young children. When a child under 16 has a disability, over eight out of ten parents (83%) report providing daily or near-constant assistance. The role of accompanying and supporting the child becomes central to family life. When the child is over 16 and more likely to reside in a separate dwelling, parental involvement, while still frequent, is somewhat reduced.

The intensity of this caregiving, particularly when it concerns a child with a disability, is associated with lower participation in the labor market. Among women providing continuous care to a disabled relative, the employment rate is 16 percentage points lower than that of non-caregiving women. A comparable gap is observed among men (14 percentage points). This association can be explained by two mechanisms: firstly, the constraints of caregiving may lead some individuals to reduce or interrupt their professional activities. Secondly, maintaining employment can limit the time available for providing care.

The Debate on Aging Should Not Overshadow Families of Children with Disabilities

According to the FamEmp survey, 2% of parents have a child with a severe disability, a figure that rises to 8% when moderate disabilities are also considered. These families more frequently face cumulative economic and social difficulties: lower educational attainment, higher rates of single parenthood, less common full-time employment, more frequent financial struggles, and lower life satisfaction.

The consequences are particularly pronounced on the professional trajectories of mothers. When a child has a severe disability, 30% of mothers leave their jobs in the year following their birth, compared to 18% when the child is not affected by a disability. More broadly, nearly four out of ten parents estimate that balancing professional activity with their caregiving role is difficult. The disability of a child also influences family planning, reducing the intention to have more children.

The aging of the population and the fragility of formal support systems currently place caregivers of the elderly at the center of public debate. This focus is legitimate, as the needs for support are progressing much faster than the availability of home-based services or residential care for the elderly.

However, the results of the FamEmp survey suggest that this concentration on the elderly should not lead to the invisibility of other caregiving situations. Parents of children with disabilities appear to be the most heavily exposed to the consequences of disability on employment, living conditions, and family trajectories.

This is not about pitting families caring for an elderly parent against those supporting a child or adult with a disability. Instead, it is about constructing public action that encompasses the diversity of caregiving situations. Life trajectories reveal that the boundaries between disability and age-related loss of autonomy are often more porous than current public systems suggest.

At a time when budgetary constraints are increasing the temptation to rely more heavily on familial solidarity, these findings urge for a better articulation of policies concerning disability, aging, and support for informal caregivers. Without this more transversal approach, there is a significant risk of reinforcing already pronounced social inequalities among families facing disability.

Author: Roméo Fontaine, Research Officer, Ined (National Institute for Demographic Studies).

This article is republished from The Conversation under a Creative Commons license. Read the original article.