Caregiving is an issue which could affect us all at some point in our lives. It is important to remember that primary care professionals in our healthcare system do not provide care in a vacuum, but interact with the families they serve. Nevertheless, in practice caregiving is often ignored in the planning or delivery of healthcare services. Professionals may react to caregivers who are struggling, but they do not proactively plan with caregivers ways for them to cope effectively and protect their own sense of wellbeing.
Opportunities to enable the caregiving role to continue in a more satisfactory manner for both care recipient and caregiver are often missed. The caregiver might not even receive a carer assessment. This can leave caregivers feeling that their input is taken for granted or that they are viewed as unimportant in the management of the cared for’s healthcare needs.
At the same time as caregiving is overlooked, it is gradually becoming a substitute for expensive formal care.
The contribution carers make is often forgotten or taken-for-granted. Services are difficult to access and complicated to understand. Carers can also feel isolated by their caring role and this was made apparent at the QNI Annual Conference on 28 September through the Scottish voice of Tommy Whitelaw, project engagement lead with the Scottish Alliance’s Dementia Carer Voices Project. Tommy spent five years caring for his mother Joan, having previously worked for 20 years in the music industry.
Tommy explained that dementia did not define his mum but it had played a part in her life. The eloquent and passionate speaker described his campaign to raise awareness among carers of people affected by dementia. I am proud to say that his words touched me emotionally and through my tears I was transfixed on his every word. Tommy described his personal journey of love, caring for his mum, the amazing lengths that carers go to through, and how he has met the most inspirational people who have made a difference during his carer journey.
A specific group was mentioned by Tommy. A district nurse who had helped them had, he said, a beautiful gift. It is obvious that caring means ensuring that your loved one has the best and finding the time to give it. It is less obvious that our role as nurses is to support carers, listening and understanding their care journey. In this way, nurses can make an incredible difference during what can be a difficult and lonely journey. As nurses we must remember that we have the potential to transform the lives and experiences of people and their carers.
Marina Lupari, professional lead for primary and community care, RCN