Families and Other Caregivers

Screen for caregiver needs

Regularly screen for and proactively attend to the support needs of caregivers.36, 37 Recommend interventions that reduce behaviours that challenge in people with IDD (eg, positive behaviour support38, 39 ) and increase coping and reduce stress experienced by caregivers (eg, mindfulness40, 41).

Strongly Recommended

Empirical Ecosystem Expert Experiential

Families and other caregivers often experience considerable mental, physical, or economic stress in balancing the person with IDD’s support needs with other responsibilities.34, 35

Monitor family or caregiver stress

When concerns arise, assess and monitor family or caregiver stress (eg, through the Brief Family Distress Scale46) and advocate for respite or additional supports.47

  Strongly Recommended

Empirical Ecosystem Expert Experiential

An increase or change in needs or a negative life event can lead to a crisis situation.42-44 Families’ need for respite has been increasing.45

Brief Family Distress Scale

The Brief Family Distress Scale, developed by Dr. Weiss and Dr. Lunsky (2011), offers a quick way of measuring levels of family distress.

Learn how to implement these guideline recommendations into your practice from selected articles in the special issue on primary care of adults with intellectual and developmental disabilities in Canadian Family Physician, Vol 64 (suppl 2): S1-78, April 2018:

Hello from the other side: Parental reflections on the patient-family-physician triadic relationship

  1. Williamson HJ, Perkins EA. Family caregivers of adults with intellectual and developmental disabilities: Outcomes associated with U.S. services and supports. Intellectual and Developmental Disabilities. 2014;52(2):147-59.
  2. Dawson F, Shanahan S, Fitzsimons E, O’Malley G, Mac Giollabhui N, Bramham J. The impact of caring for an adult with intellectual disability and psychiatric comorbidity on carer stress and psychological distress. Journal of Intellectual Disability Research. 2016;60(6):553-63.
  3. Perkins EA, Hewitt A. Chapter 164: Coping with caregiver stress. In: Rubin IL, Merrick J, Greydanus DE, Patel DR, editors. Health Care for People with Intellectual and Developmental Disabilities across the Lifespan. Springer International Publishing; 2016. p. 2165-83.
  4. Taggart L, Truesdale-Kennedy M, Ryan A, McConkey R. Examining the support needs of ageing family carers in developing future plans for a relative with an intellectual disability. J Intellect Disabil. 2012;16(3):217-34.
  5. Gore NJ, McGill P, Toogood S, Allen D, Hughes JC, Baker PA, et al. Definition and scope for positive behavioural support. International Journal of Positive Behavioural Support. 2013;3(2):14-23.
  6. MacDonald A, McGill P. Outcomes of staff training in positive behaviour support: A systematic review. Journal of Developmental and Physical Disabilities. 2013;25(1):17-33.
  7. Lunsky Y, Robinson S, Reid M, Palucka A. Development of a mindfulness-based coping with stress group for parents of adolescents and adults with developmental disabilities. Mindfulness. 2015;6(6):1335-44.
  8. Hwang Y-, Kearney P. Mindful and mutual care for individuals with developmental disabilities: A systematic literature review. J Child Fam Stud. 2014;23(3):497-509.
  9. James N. The formal support experiences of family carers of people with an intellectual disability who also display challenging behaviour and/or mental health issues: What do carers say? Journal of Intellectual Disabilities. 2013;17(1):6-23.
  10. Mckenzie K, Ouellette-Kuntz H, Blinkhorn A, Démoré A. Out of school and into distress: Families of young adults with intellectual and developmental disabilities in transition. Journal of Applied Research in Intellectual Disabilities. 2016;30(4):774-81.
  11. Ryan A, Taggart L, Truesdale-Kennedy M, Slevin E. Issues in caregiving for older people with intellectual disabilities and their ageing family carers: A review and commentary. Int J Older People Nurs. 2014;9(3):217-26.
  12. Lunsky Y, Tint A, Robinson S, Gordeyko M, Ouellette-Kuntz H. System-wide information about family carers of adults with intellectual/developmental disabilities-A scoping review of the literature. Journal of Policy and Practice in Intellectual Disabilities. 2014;11(1):8-18.
  13. Weiss JA, Lunsky Y. The brief family distress scale: A measure of crisis in caregivers of individuals with autism spectrum disorders. journal of child and family studies, 20, 521-528. Journal of Child and Family Studies. 2011;20:521-8.
  14. Sullivan WF, Cheetham T, Forster-Gibson C, Kelly M, Grier E, McDonell S, et al. Advocacy role of family Physician/Advanced practice nurse in caring for patients with developmental disabilities (DD). In: Sullivan WF, Developmental Disabilities Primary Care Initiative Scientific and Editorial Staff, editors. Tools for the primary care of people with developmental disabilities. Toronto ON Canada: Surrey Place & MUMS Guideline Clearing House; 2011. p. 26-7.
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