Carers & family members
Impact of brain injury on families & carers
Caring for a person with a
disability is one of the most difficult challenges that can
confront a family especially for those providing direct care.
Carers often feel that their life is not their own. Some feel
that due to the demands of the caring role they have very little
time alone to pursue their own interests and social life. Carers
often have to do everything on their own where prior to the injury
they may have relied upon their loved one's support for everyday
pressures such as housework and managing finances. Following the
injury the workload increases while at the same time there is
reduced support to help the carer cope.
There are many types of brain injury - brain tumour,
meningitis, Alzheimer's disease,
encephalitis, traumatic brain injury, and
epilepsy to name just a few - but the difficulties faced by carers
remain the same.
They may have difficulties accessing therapy for intensive
rehabilitation for their loved one. Over time carers often become
their own advocates and even act as case managers to ensure that
their loved one receives the much needed care.
& behavioural changes
Families may be confronted many changes in this area,
- egocentric behaviour
- poor social skills
- challenging behaviours
- emotional outbursts
- an apparent lack of gratitude
- depression and/or anxiety
- impulsivity and financial irresponsibility
- increased or decreased libido
- alcohol and drug abuse
- poor frustration and stress tolerance.
When self-awareness has been affected, this places further
stress on family as the family member disagree that they are acting
inappropriately and respond angrily to feedback.
Lack of understanding
outside the family
People who are somewhat distanced from the person with the
injury often have little understanding of what they are going
through. The person with the injury may be able to act 'normally'
for short periods in front of visitors or publicly, so that many
won't believe the difficult home situation as described by the
family. Rather than offer support, friends or members of the
extended family may make judgements about how a person cares for
Common reactions for
All carers respond to the demands of caring for their loved one
in their own way. Common reactions are feeling overwhelmed,
confused and shocked. There are no right or wrong feelings. These
feelings are a natural and normal reaction to caring.
Guilt can be a common feeling. Carers
may feel responsible for the brain injury occurring, not wanting to
be a carer, losing their temper or being embarrassed by the person
being cared for. Carers may particularly feel guilty about taking a
break from caring or placing the person in residential care.
Anger can arise when someone is the
sole carer or others in the family don't do their fair share. They
may become frustrated when faced with regular challenging
behaviours, angry outbursts, self-centredness or many of the other
issues that can arise after a traumatic brain injury.
Resentment can arise from lack of
support when friends don't make contact any more, support services
don't provide enough help and the focus always is on the person
with a traumatic brain injury or other type of brain
Fear and anxiety
about the future are common? How much with the injured family
member recover? What will happen if the family can't cope? Legal
issues such as a compensation claim can be very stressful.
experienced by many families. Personality changes often result in
feeling they have lost their loved one but being unable to say
'goodbye'. Caring duties can be so overwhelming that there is also
the loss of one's former lifestyle when life starts to revolve
purely around the person with the brain injury.
Stress may bring physical symptoms such as
headaches, difficulty sleeping, fatigue, anxiety and frequent
illness. Carers may also find themselves feeling out of touch with
reality, forgetful, not looking after themselves, crying easily and
not eating properly.
Carers need to maintain their health and wellbeing to provide
the best frame of mind to care for another individual. See our
fact sheets on respite and self-care tips for carers and family
References and further information