Synapse - reconnecting lives

As one reaches adulthood, independence is a natural goal. However, to resume an independent lifestyle safely after a brain injury, independence should be approached in stages and based on the individual's recovered physical and cognitive abilities.

For some individuals with severe cognitive deficits, achieving complete independence may be an unrealistic goal after a traumatic brain injury or similar brain disorder. 

Determining when it is safe to let go after brain injury can be a heart-wrenching decision for families. All too frequently, families expect that discharge from a hospital or completion of a rehabilitation programme indicates the person is "well" or "cured", but most individuals will experience some ongoing problems with cognition. There is a delicate balance between protecting an individual from potential harm of their actions and promoting their opportunity to attempt independent actions and learn from the results of their efforts.

Involving The Family in the Rehabilitation Process

It is helpful for family members to witness first-hand how deficits impact on the individual's ability to perform certain tasks. It also prepares the family to assume their role as the support system once rehabilitation is completed.

People with a traumatic brain injury function best within a structured environment. It is important for everyone with whom the individual interacts to be aware of compensation strategies used for deficits, as well as the need to reinforce those strategies on a consistent basis. Ideally, individuals should not use stimulants or depressive agents after a brain injury due to the exaggerated effect these substances have on the injured brain. It is much easier to monitor and prevent the use of addictive substances than to deal with them after they have become a troubling issue.

Additionally, family members should consider the need for guardianship and familiarise themselves with these protective tools.

Neuropsychological Assessment

The neuropsychological evaluation is a task-oriented assessment of cognitive functioning and the key piece of information that will help determine the extent of assistance a person may need to function in society. Many individuals injured as a result of acceleration/deceleration forces experience damage to the frontal lobes. Damage in this area usually results in a reduction or loss of ability to exercise good judgment, reason things through, problem-solve, inhibit inappropriate behaviours, organise and structure time, control impulsiveness and follow through with tasks.

If a neuropsychological evaluation was not completed in conjunction with a rehabilitation programme, school systems, vocational rehabilitation agencies and other state-supported programmes may be a good place to start looking for ways to obtain this information.

Watch for Increased Awareness

Some people with frontal lobe damage lack awareness about their own impairments and may take unnecessary risks affecting safety. Over time this may change and increased insight may create a negative reaction to the new "self." Although this change in awareness can be a positive sign of improvement, dealing with it emotionally can be quite challenging. Families must be alert to these changes to prevent self-injury, disruption of cooperation and/or increased demands for independence.

It is helpful to gradually establish some "safe" activities for the individual to manage independently like a programme at a local gym where there are individuals trained to monitor and provide assistance to the individual.

Recreational activities are good for reestablishing community involvement. Whatever services your family member decides to participate in, ensure the persons in charge know the individual's impairments and the extent of help he/she will need to participate effectively. Your local Brain Injury Association should be able to put you in contact with these services.

Identification

With each step toward independence, it becomes more important to have proper identification at all times. In the event of seizures, ensure that the individual has information in the form of a bracelet, necklace and/or wallet card that accesses medical instructions. If the person could become lost then maps or a record of the address should be carried at all times.

Dignity of Risk

Sometimes it can be helpful to support the person in an activity where there is concern about safety. Denial-whether organic denial or lack of awareness of one's deficits-can be a persistent problem. Sometimes it is useful to take risks to reach a goal. For example, an individual with balance problems who wants to ride a bike again can start off on a stationary bike. After the individual has been evaluated getting on and off safely, allow him/her to progress to a two-wheel bicycle and-using good protective equipment such as elbow pads and helmets-allow him/her to practice skills in a relatively "safe" area with footpaths and grass in the event the rider falls.

Holistic Independence

When policy changes moved people from institutional care back to the community, there was not enough funding allowed to ensure high quality services. This is particularly the case with Acquired Brain Injury when there is little awareness of it as a disability.

Promoting independence among many persons with a brain injury is a huge undertaking that may last a lifetime. Too often service providers foster the expectation that a person can become medically stabilised, learn a few compensatory strategies and live happily ever after. This may occur, but as we all know it is far too seldom the case.

Those involved in providing assistance to people with acquired brain injury need to organise their collective efforts in a way that is most likely to produce the desired results. Goal development activities have been part of rehabilitation activities for years, but what is most important is that everyone who is involved with the individual shares the identification of those goals.

Another important aspect of goal development activities has to do with the social relevance of the identified goals - where a person lives, how they will be occupied, how they will relate to others, how they perceive their quality of life.

People with a disability must have some interest in interacting with persons who can provide assistance to them in promoting independence. When this interest does not exist, it must be established.

Promoting independence can lead to their increased likelihood of safety, opportunities to exercise choice and an enhanced sense of self-esteem. Unfortunately the existing technology to promote self-sufficiency skills in persons with brain injury has been borrowed from other areas. We assume it is effective, but more research on life skill development, use of rehabilitation technology and life outcomes as a result of specialised treatments is needed.

Finally, a great deal more work needs to be done to prepare communities to accept individuals with a brain injury. The major area of concern here has to do with accommodating persons who behave in ways that are considered "disruptive". Obviously such individuals need to learn ways to interact more effectively, but in some cases the ability to interact more effectively is no more controllable than another's ability to walk. Great modifications have been made to create a world that accommodates many persons with a disability. Now we need to continue to extend this possibility for all of them.

Conclusion

It is easier for the family to be in a position of control at the onset of the community re-entry phase of recovery rather than experience a sense of failure when the individual with TBI is unable to resume his/her exact pre-injury lifestyle. Gradual re-entry can provide a measure of safety and protection that can move the individual from dependence to interdependence and, for many, complete independence. Focusing on what a person does well is an enriching experience for all family members. When letting go is a safety issue, it often is best to err on the side of caution rather than relinquish too much control too early. It is important to keep in mind that independence is not a virtue and dependence is not a vice.

Finding the proper balance between control by the family and gradual relinquishing of control are the stepping stones to greater independence, with many families finding the journey can be a satisfying partnership.

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