Supporting Individuals with Developmental Disabilities as Caregivers
Caregiving Roles and Demands
- Direct vs. indirect care
- Types of disability and illness
- Living locations
Notes and References
Family caregivers provide care in a wide range of activities, including assisting with the activities of daily living, helping with medications, making medical appointments, and providing emotional support.
Depending on the strengths of the caregiver and the characteristics of family members, individuals with developmental disabilities can provide direct (hands-on) and/or indirect care to their loved ones.1 Their involvement in direct and indirect care can change over time, in response to the stage of illness and the needs of the care recipient. Generally, providing care to someone with Alzheimer's or dementia, is seen as more stressful than caring for someone with a physical impairment, due to the level of caregiving demands.2 For example, caring for a family member with dementia is different than caring for a person with physical healthcare needs such as arthritis. Individuals with dementia are more likely to exhibit unpredictable behaviors, such as forgetting to turn off stoves, taking too many or little medication, and wandering into the street; therefore, they require a higher level of supervision over time.
Where people live can also affect the complexity of caregiving responsibilities. When the caregivers and the people they support do not live in the same area, it is more difficult for the caregivers to provide hands-on care. Living in a rural or urban area can also affect the complexity of caregiving demands; as rural areas may have fewer formal services, less public transportation options, and are farther from stores, caregivers and recipients may experience more challenges in obtaining the necessary care and require more planning, especially during harsh winters.
Finally, some people assume caregiving responsibilities gradually; starting with making weekly phone calls to check on the care recipient, and gradually becoming more involved and taking on more caregiving duties, such as grocery shopping and providing direct supervision. Others may face a crisis situation and assume the caregiving role suddenly. As we cannot predict when we might be needed as a caregiver, becoming familiar with some common issues and challenges can help us be more prepared for the caregiving role.
- Taggart, L., Truesdale-Kennedy, M., Ryan, A. & McConkey, R. (2012). Examining the support needs of ageing family carers in developing future plans for a relative with an intellectual disability. Journal of Intellectual Disabilities, 16, 217-234.
- Family Caregiver Alliance. (2016). Caregiver's guide to understanding dementia behaviors. Retrieved from https://www.caregiver.org/caregivers-guide-understanding-dementia-behaviors