Intellectual and/or Developmental Disabilities: Flexibility, Aging and Long-Term Caregiving

April 24, 2024
Eileen Lawless, MSW
Teenage boy with disability on wheelchair in cooking with mother

The term Intellectual and Developmental Disabilities encompasses encompasses different intellectual, sensory, and/or functional challenges that may require life-long support.    I/DD disabilities can range from intellectual, cerebral palsy, autism, and neurological impairments.  The lifelong commitment of I/DD caregiving requires pivoting to changes and adjustments to daily care activities, social interactions, safety, physical functioning, cognitive learning, language, and behavioral development.  Nearly one million households in the United States include adults with I/DD who live with a family member or parent. 

Lifetime Caregiving: Distinct Challenges 

Family caregivers have much in common: emotions, work-life balance, stress, day-to-day coordination, and devotion to a good quality of life.  With a lens on caring for someone (and caring for ourselves) throughout life, here are some important considerations:

  • Changes in care with long-term caregiving may increase caregiver stress over extended periods.  For example, Alzheimer’s dementia is common in older adults with Down Syndrome.  Alzheimer’s dementia may require more cognitive support along with other care needs. 
  • IDD caregivers may provide care for more than 25 years, which is more than six times longer than the national average duration of caregiving, which is four years.
  • IDD caregivers provided 57.4 hours per week of caregiving, more than twice the national average of 24.4 hours per week.
  • IDD caregivers face high-stress levels and are at greater risk for mental distress (anxiety and depression) and increased negative economic consequences related to the caregiving experience. Managing stress was mentioned more often among caregivers who provided longer hours of care (51%).   
  • Family caregivers of children with autism, family caregivers report less time spent with family, friends, and spouses. 
  • Caregivers who provide intense, long-term care can often experience chronic stress, which may contribute to poor health conditions, including anxiety, muscle pain, high blood pressure, and a weakened immune system.

Insight: Dr. Yumi Shirai 

Dr. Yumi Shirai is the Assistant Professor of Applied Intercultural Arts Research and Family and Community Medicine.  Dr. Shirai is the Director of ArtWorks at the Sonoran Center for Excellence in Disabilities. ArtWorks promotes mutual learning through creative and expressive arts interactions between adults with intellectual and developmental disabilities and University of Arizona students. Dr. Shirai's passion is supporting aging individuals with intellectual and developmental disabilities and their family members during late life transitions.  

As Dr. Shirai states, “The I/DD community is very good at adapting to collective (caregiver and person receiving care) challenges at all stages of life.  Some of these changes may be physical (our ability to provide hands-on care, changes in function, the ability to care for ourselves), medical (changes with medical needs both for the caregiver and the person receiving care), income (retirement, changes in benefits or resources) or emotional (relationship changes, burnout, grief).  Dr. Shirai identifies the skills and qualities of the I/DD long-term caregiver:

In her work, research, advocacy, and experiences, Dr. Shirai notes these observations on aging and long-term I/DD caregivers. 

Advocacy

One big challenge is navigating the world outside I/DD or where community space can be a “mutual living space/aging space or world. The I/DD community continues to advocate for understanding and support in community life, health care, advance directives, and financial and legal considerations. [by advocating unique needs as well as shared challenges]

For instance, such as specific medical issues, poli pharmacy, diagnostic overshadowing where clinician or care team attribute health conditions or behavioral challenges to their life-long condition of I/DD, causing delayed or misdiagnosis.

Adaptation 

“As the IDD community ages, caregiving requires a quick change to different community-based services, residential transitions, and legal and financial options,” said Shirai. She noted that I/DD caregivers diligently adapt to formal systems and education to support their families and themselves, especially with milestones that change life plans. Dr. Shirai notes that agencies that support the I/DD community adapt to and offer flexible and well-organized services for these life changes.   

Shared Knowledge and Planning 

Dr. Shirai states, “Members of the I/DD community have a voice and acquire a great deal of knowledge in decision-making, autonomy, and quality of life.” Therefore, advocates, professionals, and educators need to acknowledge, understand, and “listen” to the expertise and needs of the I/DD community. 

I/DD caregivers are highly skilled at preventative and flexible planning. However, they should prepare, get information, have conversations, and make backup plans to designate people who can help or take over if something should happen to the caregiver(s) for different types of changes, from small to big, e.g., emergency hospitalization of caregiver, traveling, changes in primary caregiver, death of a family member.

These decisions may include the care that needs to be offered and the professional, emotional, financial, educational, and social life paths to choose. 

Connection and Belonging 

Most I/DD adults receive support from their parents and families. Dr. Shirai points out the vital role of siblings and extended and “kinship” families when talking about families.  The American Association of Intellectual and Developmental Disabilities states that family I/DD caregivers can include (and are not limited to) adoptive parents, foster parents, uncles, aunts, cousins, grandparents, grandchildren, and people in spousal or partner relationships. 

The IDD community is no exception to our human need to connect and belong to our community. Dr. Shirai is a social and behavioral scientist, a trained modern dancer, and a movement therapist with over 30 years of experience in Movement Therapy and dance. She sees great potential for connection with the arts and culture (vocational, social, spiritual, etc.).

Some excellent resources are available to I/DD community members and their caregivers at the local, state, national, and international levels.