The bulk of caregiver research to date has been conducted with older individuals living with conditions that are often associated with older age (e.g., Alzheimer’s Disease, stroke). Although the knowledge gained through this work has been tremendously valuable, it offers few insights into working with the families of younger individuals who incur severe physical and neurological disabilities and require a lifetime of assistance.
Individuals in these situations typically experience sudden and dramatic changes in income levels, living arrangements, roles, and routine behaviors. They are also markedly out of sync with their peers in terms of typical problems and concerns.
These care recipients may have pronounced mental health disorders that co-occur with the onset of their physical or cognitive disabilities (e.g., Post-Traumatic Stress Disorder among war veterans with mild traumatic brain injuries) or that develop over time (e.g., substance abuse, pain). Some care recipients may demonstrate problems adhering to rigorous self-care regimens necessary for promoting health and avoiding secondary complications (e.g., routine skin care to prevent pressure sores).
In general, there is considerable variability across these scenarios. These caregivers may require strategies, resources and supports that are specific to the behavioral and physical problems they encounter and that are pertinent to their relationships with the care recipients.