Adult sons and daughters with a disability

What we know:

  • An estimated 3000 older parents in NSW care for an adult son or adult daughter with a severe or profound intellectual disability. This number will grow exponentially over the coming decade
  • Older parent-carers begin caring as new parents and will continue to do so for five or six decades, unless prevented by death or their own disability. Their caregiving is virtually a life-long 'career' and it is a radical departure from the normal experience in which dependent children develop into independent adults
  • Around 10% of primary carers aged 65 and over (approximately 9,700 Australia wide) are older parents caring for their now adult children. Around 40% of all primary carers in Australia have been in their caring role for at least 10 years. Of these, around 13% have been in the caring role for at least 25 years. Most of these long-term carers are parents of adults with intellectual disability. Their time involvement in caring is substantial; for carers caring for 25 years or over, half (50.2%) spend no less than 20 hours a week caring and the majority of these carers (76.2%) spend over 40 hours a week devoted to caring activities. Their caring is a life long experience substantially benefiting society by caring for their family members who in previous times would have been placed in institutions
  • Typical older parent-carers have well developed protective parental responses, often manage on their own, and are experts on their adult child
  • Parents' embedded sense of parental control and protector of their children becomes destabilised by their own ageing and the ageing of their children. The area of greatest worry for many older parent-carers is the safety, health and well-being of their adult children who, in all probability, will not be directly under their care in the future.
  • The most common difficulties experienced by these parent-carers are the physical demands of caring; feeling helpless/not in control; professional workers seemingly not appreciating the problems they face; and the problematic behaviour and the excessive demands of their adult child
  • Generally, older parent-carers experience poorer physical and mental health than the Australian normative population
  • Older parent-carers generally express positive feelings about their relationships with their adult son or daughter and a high level of satisfaction gained from their caring role
  • Commonly used and helpful coping strategies include a reliance on one's experience and expertise; a belief in one's ability to cope and be a good carer; and a positive reframing of their life situation
  • Older parent-carers can be grouped into one of four categories, pending their engagement with the service system:
    1. Go It Alone - these parents identify strongly as being responsible for determining their adult child's life situation and use health/welfare services as an adjunct to support this responsibility as needed

    2. Reluctant Users - these parents are more intensively involved with the service system, yet dissatisfied with their unwilling dependence on agency support

    3. Tandem Partner - this group of parents negotiate satisfying life situations for themselves and their adult children, based on a shared understanding with service agencies and maintained by trusting and confident relationships with service workers

    4. Services in Charge - these parent-carers have the lowest parental status, being 'divorced' from and outside any sphere of influence over their children's life situation. With all of their adult children living in residential hostels, group homes or semi-independently with agency support, agencies and service systems are in charge and regarded as the decision-makers
  • Key issues facing older parent-carers revolve around:
    • Advancing age - physical and emotional tiredness; deteriorating health; anxiety over who will care for their child after they die

    • Duration of care - a lifetime of care by parents leading to financial interdependence and lives that are inextricably linked.

    • Lone carers - older parent-carers are more likely to be caring alone either through marriage breakdown or the death of their partner. Additionally, they face loss of support, through death or declining health, from family and friends

    • A distancing from professionals and the service system. Service workers are not perceived to have the knowledge and experience to truly understand issues faced by older parent-carers

    • Strong self reliance and reluctance to seek help

    • Decision-making for the future - a reluctance and/or inability to plan for the future

What we can do:

  • Incorporate a personal futures planning program for older parent-carers, their adult sons and daughters with a disability and other family members in service offerings
  • Establish a consultative process with older parent-carers to address the consensus finding in this study that professional workers do not seem to appreciate the problems parents face and develop information, training and resource strategies to overcome this
  • Adopt a family centred approach, taking into consideration the needs and interests of all family members

Want to know more? Check out this publication:

Llewellyn, G., Gething, L., Kendig, H., & Cant, R. (May 2003). Invisible Carers: Facing an Uncertain Future. University of Sydney. Report of a study conducted with funding from the National Health and Medical Research Council, 2000 - 2002.