Having worked in the aged care industry in multiple roles for the past 13 years, I have come across many different people with different conditions. However, I have only just been introduced to conditions relating to Disorders of the Corpus Callosum. My role at Hardi Aged Care is specifically entailed to promote the optimal wellbeing for our residents. This often includes finding strategies to provide best practice care, that is individualised relating to residents who may be experiencing behaviours of concern.

The purpose of this article began upon meeting a gentleman aged 69 years old who was admitted into one of our care homes. He had previously lived in another aged care home with a different Provider however, was asked to leave due to “behavioural concerns”. He had been seen by a multitude of external specialists including mental health teams.

He was admitted into our home on respite and admittedly, there were incidents that occurred that had raised questions as to whether we too could accommodate and care for him.

After discovering his diagnosis of Agenesis of the Corpus Callosum, I began doing additional research into the condition. In the aged care environment, we care for a large population of people who are living with dementia. Generally speaking, any behaviours of concern that are observed are usually due to the individual having an unmet need. This quite often can relate to pain, anxiety, boredom, etc. Without knowing too much about Agenesis of the Corpus Callosum, it was difficult to identify what the unmet needs of this gentleman were. He enjoys participating in activities and has been provided with lifestyle choices specific to him; he has good rapport with staff and has even made friends with other residents living in the home. Yet he would still have moments of sudden emotional distress which would result in him expressing frustration towards staff and residents physically. It was often very impulsive and without warning – or so we thought.

I searched through many articles and websites for more information about this condition but this proved very difficult and often didn’t include information relating to older people with this specific condition. I came across the AusDoCC website and decided to make contact and Maree Maxfield from AusDoCC called me. This conversation was an eye- opening moment and really helped me to understand the condition and the needs of a person experiencing it.

This conversation helped me to identify that the times the incidents of verbal and physical agitation occurred; the gentleman was experiencing anxiety. His anxiety often related to the unknown, other people watching him doing a particular task that he is aware can be difficult for him, and a change in routine that he is used to.

The anxiety came down to communication, as I have learned, communication is also something that can be difficult. I had a conversation with him and when asked if he feels anxious and what makes him feel anxious, he simply replied “I get nervous that I can’t get my words out and that I won’t be understood”. He followed this statement with “I get anxious when I have to talk which makes me more anxious and makes it even harder to talk”. Bingo (excuse the aged care content); knowing this key piece of information allowed me to reflect on each incident that had occurred and made me realise that this did not just include verbal communication, but also body language.

It was identified that anything spoken to this gentleman, he took literally and that included body language and his perception of the body language. So, every joke we shared with him needed to be followed up with “I’m only joking” for him to be able to appreciate the joke and have a laugh.

There are multiple layers to this and yet some still to be revealed. Knowing this key information has guided me to look at the environment and how this could be modified to reduce our resident’s anxiety. Our biggest challenge is making the home comfortable for all living there, not just from a physical aspect, but emotionally. People living with dementia may have more difficulty in verbalising and responding, and their body language or the body language of others will not always provide a response for this gentleman to understand. This contributes to his anxiety and increases the risk of him feeling the need to display agitation physically. For example, when he walks with the physiotherapist to build up his mobility capacity, if he sees a resident walking in front or behind him who he knows can be a little confused or disorientated, he fears that this may interrupt his ability to walk, putting him at risk of falling so his instant reaction is to try and move that person out of his way to avoid it.

Taking on board everything to date I have learnt about this condition, training and education for staff has commenced and will be ongoing as we learn more about this condition. We still need to work very hard at this but knowing the possible contributing factors is a starting point. I was surprised to find out that he himself did not know much about this condition as he was diagnosed later in his life, so he too was very responsive to finding out more information.

Although we still have a long way to go, this gentleman now enjoys working within the facility by cleaning and assisting our maintenance worker. He adores our cat Wendy who lives at the home and feeds her daily. He is also supported by NDIS carers and enjoys our bus outings.

This gentleman has chosen to reside in our home permanently. Hardi Aged Care believes that everyone deserves a home and deserves to feel secure. We feel that awareness of Agenesis of the Corpus Callosum is extremely important, particularly for older people living with the condition. We are striving to better understand this condition and improve practice in aged care so that we can offer a good quality of life for people living with this condition and they can be assured that even later in life they will be cared for and have a place to go where their wellbeing is of the upmost importance and that we are skilled to support them.

We are looking forward to supporting AusDoCC to increase awareness and to work together to provide the care that everyone should have access to. Everyone deserves a home, and to feel safe and loved – regardless of age or condition they may be living with.

Francesca Glamorgan Executive Wellbeing Manager www.hardiagedcare.com.au