Using Help to Pinpoint Proper Care Following Brain Injury
After a brain injury, many survivors require help in one form or another. Some people require extensive support, while others need only a limited amount of services. This is often reduced with time and rehabilitation, but chronic complications with some injuries may create an increased need for assistance years after a diagnosis is made. Identifying the help that is needed is often a fluid, unfolding process; but being aware of the different categories of caregiving options can provide guidance when searching for the correct level of support.
In persons with brain injury, the amount of outside assistance required to carry out essential functions in everyday life is formally known as acuity. An interdisciplinary team of neurological professionals can help determine a person’s acuity by identifying what, if any, supports are needed. By reviewing documentation and collaborating with caregivers who provide supporting information about behaviors they observe from their clients or loved ones, risks, and care needs are identified relating to three specific areas:
- Tasks of Self-Care: Personal care activities like dressing and bathing are often referred to as basic activities of daily living (BADL). More advanced tasks that require deeper thinking elements, such as scheduling or budgeting, are considered independent activities of daily living (IADL). If an individual needs assistance when carrying out either — or both — of these categories of self-care tasks, they are in need of what’s called attendant care. Attendant care provides hands-on assistance with physically managing daily routines that may be limited by weakness, fatigue, or thinking problems like memory or attention. Generally, attendant care is hands-on care provided to make up for physical limitations of an injury.
- Replacement Services: Some survivors struggle with effectively carrying out typical responsibilities around the home, such as yard work, childcare, or home repairs. In these cases, they may need to assign or purchase these services for others to do. These needs are called replacement services, and are considered another category of caregiver support.
- Protective Supervision: Brain injury can create an inability for individuals to recognize problems or advocate for help. Protective supervision is care that stands in reserve, monitoring for emerging risks, and stepping in with support when an injured person demonstrates behaviors that might lead to harm if left unchecked. Protecting a person from fall risk when he or she is unaware of poor motor skills, monitoring a meal for choking risks, or providing orientation support for a person with confusion are examples of why protective supervision is often necessary.
Acuity isn’t only about identifying the type of help an individual needs, however. Acuity also determines the coverage and intensity of this assistance. In other words, it identifies how much and how demanding the support can be.
Coverage refers to the portion of the day or specific times when help is needed. This may be expressed as supervision hours (e.g. up to six hours daily), or for specific events or portions of the day, like during mealtimes or supervision during waking hours only.
Intensity considers the demand of a caregiver’s attention. In hospitals and rehab facilities alike, this is often referred to as a ratio of supporting persons to the number of people they are helping. People with severe injuries may need someone to provide assistance exclusively to them (1:1 support), while others may be safe with an assistant who helps them along with two others at the same time (3:1 support). Intensity also factors in the distance these caregivers can be from their patients; whether that be to stay within an arm’s length at all times, or simply making sure an individual is within their line of sight.
Being familiar with each category of care — and identifying exactly where a patient falls within them — can greatly help when advocating for the correct and necessary support an individual needs. Professional assessments that pinpoint the precise what, when, and how much help a person requires, as well as careful documentation by healthcare providers and caregivers that support these findings, not only improves opportunities for ongoing coverage from funders, but also allows a person the best chance at success and fulfillment in their lifestyle following brain injury.
Martin J. Waalkes, Ph.D., ABPP(rp), CBIS-T
Director of Neuro Rehabilitation
Hope Network Neuro Rehabilitation