Our fourth blog in the Research Involvement series is by Lorna Walker who is an NDCAN member. If you are an SDRC member that would like to contribute a guest blog for this series, please get in touch with us.
Research involvement is only possible when people who have ‘lived it’ agree to be involved. The value of research in its many shapes and form are clear. It delivers new understanding and meaning, allows us to define and refine, discover and most importantly helps people affected by dementia.
Enlightenment is not a word we hear often in research labs, but is part of our social history and is part of life. Those ‘light bulb moments’ when something clicks or for family carers we try something that works well in a situation, or suddenly understand and can explain. For many family carers their ‘light bulb’ moments are just that- their moments, their understandings that build day by day, week by week, everyday solutions and expertise in family caring. These experienced based solutions give us merit and worth. They teach us the lessons we need to live the unimagined life of a family carer. With such cumulative and practical know how, it is no wonder that the mantra “Nothing about Us, without Us” has come about.
Top tip: Family caring and wisdom often develops through trial and error. Listen carefully and learn.
I was compelled to arise to my feet, at the Alzheimer International Conference in Puerto Rico in 2014, as a founding member of the National Dementia Carer’s Action Network, I would utter these words “In Scotland we have a simple philosophy, it’s about the Right people, doing the Right thing, at the Right time, that gets it Right. To make a change, be the change. Thank you”.
So are researchers doing the right thing, at the right time and in the right way? To be honest as a family carer I cannot answer all of these questions. But I would like to ask my own question. What can we learn from ‘crying’? This may seem an odd question, but in NDCAN we know a thing or two about crying and crying out.
Reflections on crying
What happens if that crying out no longer feels supportive, and in effect it takes its toll on you, your life, health, wealth, and inner peace. Your physical ‘crying out’ no longer serves any useful purpose in the eyes of other’s, you are swamped by the sense of the constant care, the costs, the cannot, and your ranting only serves to inflict deadly unseen pain and subliminal messages of being lost to the here and now, within you. Trying to fight that semblance of who you are, and have become, shifting the realms of reality that remain. Its retraction, remorse, remonstrated, remembering, re-shuffled, refreshed.
You reach down into the caverns of your mind, your soul, as your body goes into shutdown. Your body is functioning but your mind then concedes into the favour of your disenchanted belonging, we are amid a pandemic. Going forward we need to effectively listen for the cries of those who have endured, to give the time needed to acknowledge the pain, of suffering and the human cost. To be kind to each other and allow personal grief to emanate from source. In the end we are all trying to live our lives, having a human experience.
Lessons for researchers
Top tip: Think carefully and realistically about how you will support people who agree to be involved in dementia research. Some will cry again.
In a nutshell, crying matters, and it matters that researchers understand that those who engage in their projects may still be crying and crying out. It is obvious when a person is crying and shedding tears, but not always obvious when someone is hurting and crying within. When researchers work with family carers they are working with people who have lived with and through tears and have more tears to shed. They have cried out for others and cried out for themselves and of course just cried. When you ask a family carer to become involved in research, you are not simply asking them to give of their time, expertise and experiences. You are asking them to be prepared to cry again.
Thank you to Lorna, and all contributors to this series, for sharing your experiences in research involvement. We are keen to share as many experiences of research participation as possible, and encourage any SDRC member that has a experience of research involvement to write a guest blog. Please email us to discuss this further!