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Planning for the future: The concerns among older parents of adult children with intellectual disabilities

The Bottom Line

  • Parents of children with intellectual disabilities must sometime provide ongoing care for their children, even during adulthood.

  • These parents face significant challenges, including planning for their children's future care arrangements while anticipating their own aging and death.

  • Various barriers prevent older parents from planning for their children's future care arrangements, such as a lack of trust in existing services, a lack of information about care options, or feelings of mutual dependence.

  • Families who are culturally and linguistically isolated often face additional challenges in finding information on available services.

While children become more independent as they age, a parent’s role is never done. This is especially true for parents of children with serious health problems or disabilities requiring constant care. For example, parents of children with intellectual disabilities must sometimes provide constant care for their children, even during adulthood. This is even more common as the life expectancy of these children has improved overall, partly due to medical and social innovations. For example, more than 40% of people with Down syndrome now live to the age of 60.(1; 2)

These parents often face considerable challenges, including planning for their children's future care arrangements while anticipating their own aging and death. It is important to understand their reality and their concerns in order to better support these older parents and their adult children.

What the research tells us

A recent systematic review examined 14 studies of older parents of adult children with intellectual disabilities living at home or in the community.(3) More specifically, the review explored older parents' perceptions of future care arrangements for their children.

Overall, studies have shown that these older parents are aware of the need to plan the care arrangements for their children or, at least, they have preferences for such arrangements. However, a combination of factors seems to hinder the planning process.

The obstacles
Studies have identified important barriers for older parents that contribute to their lack of planning. These parents often have a sense of helplessness, avoidance, denial and guilt about leaving their child in other people’s care. Sometimes older parents are hopeful that the problem will solve itself when the time comes, or are under the impression that their child will most likely pass away before them.

Studies focusing on adult children living at home highlighted other factors that may explain why older parents do not plan their child's future care arrangements, including: a lack of information, a lack of knowledge regarding services available (for example, available residences or home care options), distrust in available services, and dissatisfaction with the bureaucracy that manages programs and services. These findings appear particularly salient for families who are culturally and linguistically isolated. Other studies also pointed out that older parents do not perceive having professional support to plan future care arrangements; the work of professionals being more focused on crisis management.

Studies focusing on adult children living in an institution in the community indicated that older parents did not feel the pressure to plan future care arrangements. These parents feel that the services are already in place to meet the needs of their child and that the role of caregiver no longer belongs to them.

Various types of "plans"
The review revealed a variety of "plans" and ways to plan future care arrangements. Some parents say they have developed "plans" without talking to their child or other family members. Many others focused only on planning for the social and emotional needs of their child rather than seeking solutions for financial and legal issues, for example.

 

Putting your affairs in order

We never know what the future holds. It is therefore important to get your affairs in order:

- Check with the office of the public guardian and trustee in your province or territory to understand how to protect yourself or your child, or consult a lawyer or notary.(4)
- Communicate your values and wishes for treatment and care for you and your child. If possible, involve your child, their care providers and your loved ones in these conversations.(5)


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Author Details

References

  1. Holland T. Ageing and learning disability. British Journal of Psychiatry, 2000, 176, 26–31.
  2. Torr J, Strydom A, Patti P & Jokinen N. Aging in Down syndrome: Morbidity and mortality. Journal of Policy and Practice in Intellectual Disabilities, 2010, 7(1), 70–81.
  3. Walker R, Hutchinson C. Planning for the future among older parents of adult offspring with intellectual disability living at home and in the community: A systematic review of qualitative studies. Journal of Intellectual and Developmental Disability. 2018;43(4):453-462.
  4. Éducaloi. Incapacity (being unable to care for yourself or your affairs). 2019.
  5. Gauvin FP, Abelson J, Lavis JN. Citizen Brief: Improving End-of-life Communication and Decision-making in Ontario. Hamilton, Canada: McMaster Health Forum, 30 November 2013.

DISCLAIMER: The blogs are provided for informational purposes only. They are not a substitute for advice from your own healthcare professionals.

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