THIS week (March 5 to 11) is Brain Awareness Week — with events being organised nationwide to support the 13,000 people who acquire a brain injury each year.
Acquired Brain Injury can happen to any of us at any time. Typical causes include a blow to the head, a road traffic accident, a fall, an infection, lack of oxygen to the brain, a seizure, or following brain surgery.
After a brain injury, there are many different changes which take place and these tend to fall into three main categories — physical, cognitive or behavioural.
Physical effects include reduced mobility, speech, or sight damage. Cognitive includes damage to memory, judgment, concentration, or speech and language — and behavioural changes include reduced self-awareness and understanding of social situations, or increased impulsivity and moodiness.
However, people still look the exact same despite the serious changes which have happened. This is why and an ABI is often referred to as a ‘hidden’ condition.
Rarely, if ever, do we get to hear the voice of the person living with ABI, as it is difficult for these people to tell their story, to ‘go public’, or even march on the streets and demand better services.
So what is living with a brain injury like? And what can be done to make experiences better?
ABI Ireland recently carried out research interviewing people affected, their families and their carers.
Five major points emerged from this work and these include:
1) The role of family
Participants emphasised how it was their family that was in it for the long haul and that stayed with them through their long and arduous journey. For the most part, participants told stories of incredible family loyalty and generosity in supporting their needs.
2) The challenges in accessing support
While many respondents talked about excellent care they received within the hospital system, rehabilitation services, ABI Ireland and Headway; many participants reported that they had major difficulty accessing longer term care. These difficulties resulted in extreme gaps in their long term rehabilitation.
3) Variability and complexity of needs
Participants were very varied, which reflected the huge the diversity of needs. Some participants were capable of independent living, while others needed full time care and support.
4) The importance of group activity
Many participants said that the main goal of their days to be able to do activities with others such as cooking, visiting friends or family, or reading and that this reduced their sense that their injury was ‘disabling’.
5) Adaptation and resilience of those living with brain injury.
Many participants framed their injury and recovery in a positive light — more than might be expected. This is not to suggest that there was not major expression of loss and difficulty, but there was also notable evidence of optimism and adaptation.
The research showed that families are the major source of longer term care and support for people affected by an acquired brain injury and that there is a huge shortage of access to long term health and social care services.
Only a very small minority of people with a brain injury receive professional rehabilitation — mainly through ABI Ireland. Most either enter a nursing home, which is not equipped to meet their needs, or are cared for at home by families who have no rehabilitation expertise.
Participants themselves favoured greater access to professional services and to be less reliant on their families.
Families can be disablers as well enablers. They are without the skills to help their loved one reach their optimum level of recovery — and also to respond quickly to their changing needs.
For these reasons we need to plan for, invest in and develop dedicated regional neuro-rehabilitation services, together with specialist community supports across Ireland.
These services would enable people to transition to professional care in the community once discharged from hospital — and to routinely re-access community based care when their family is in need of respite, or their needs change.
Brain injury is devastating. It shatters lives and it is very important to raise awareness of an injury that could happen any of us at any time.
Brain Awareness Week is being organised by Acquired Brain Injury (ABI) Ireland and I am calling on bakers, eaters and donators to join forces. To support the campaign, simply bake for your friends, work colleagues, or school friends and ask them to donate for their cake by visiting www.abiireland.ie. More information on how to get involved is at www.abiireland.ie, or follow #bakeforbraininjury on Twitter.
ABI Ireland is a dedicated provider of community-based neuro-rehabilitation services for people with an acquired brain injury (ABI) and their families.
ABI Ireland gives people a second chance to rebuild their lives and provide support for families to survive and thrive. ABI Ireland also campaigns, educates and advocates for the rights and needs of this hidden group in society.