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Transitions in Aging

Supporting Individuals with Developmental Disabilities as Caregivers

Plan Ahead

Photo: man and woman looking at home computer screen together

  • When more care is needed, steps to be taken include:
      - Work through hesitations and concerns
      - Determine decision-making needs


NEXT: In conclusion


Notes and References

Having conversations about finances and healthcare wishes can be difficult.



Some people would rather receive care from a close family member than someone with unrelated ties, such as an in-home nurse.1 As one ages, both the caregiver and the recipient may require more support. Individuals with developmental disabilities may need to transition their caregiving responsibilities to siblings or other family members. If this is not an option, the family may need to discuss other options. While most people prefer to receive care and support at home, we should still discuss with individuals with developmental disabilities and their family members the possibility of other options.

Several concerns and hesitations can come into the equation affecting the decision-making process about transitioning care. Individuals with developmental disabilities and their older parents may have developed a mutually interdependent relationship, in which both parties are providing and receive care in some respect. Therefore, older parents and individuals with developmental disabilities may not want to give up "caregiving" responsibilities or might feel "we are doing just fine", even though he/she may not be able to properly care for their loved one. Families may need help in navigating systems and discussing options for arranging in-home care services or a transfer to a facility. If possible, we could involve family members and make a clear list of caregiving responsibilities/needs. Having all of the information written down can help paint the larger picture of what it looks like to care for the loved one. That way, the family can assess their situation and make an informed decision. We can also act as a mediator during family meetings to guide the discussion and be sure the family stays on track with what needs to be accomplished. Finally, if the family is unable to transfer care among family members, we can help assist the family in finding a proper facility for their loved one. We can also prepare the caregiver for their future role in their loved one's life once they are no longer living in their home.

Advance planning for decision-making is helpful in preventing difficulties that could occur later. Discussions should be soon after diagnosis.

References:

  1. Horwitz, A. & Reinhard, S. (1992). Family management of labeled mental illness in deinstitutionalized era: An exploratory study. Perspectives on Social Problems, 4.