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The New Normal

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Topics: 
communication, dementia awareness, technology

In 2018, I came to work at Trent Dementia, a small charity based at Nottingham University working with people diagnosed with dementia. My role was to lead on an innovative project to facilitate the charity to design and deliver local networks of peer support for people living with dementia. Fundamental to such work is in developing meaningful relationships with people living with dementia. I have been fortunate in working directly with people for over 30 years as a social sector practitioner, a counsellor and a researcher and have been a staunch advocate of working directly, face to face, with people as the only way to build meaningful connections.

Starting with a core group of six people living with dementia, meeting monthly, the group members decided which area to start promoting the idea of peer led groups and offered open invitations to people living in those communities to share coffee, biscuits and information. In this way those who were interested began to meet more regularly in their local communities and the first groups gradually became established. The members of the peer support groups relish the opportunities peer support groups present; getting together and share experiences, sometimes weekly, sometimes monthly but, always in person. However, as COVID-19 became a stark reality it became clear that many people in the peer support network would be in lockdown for an unknown amount of time as the national approach to suppressing the spread of the virus. I, like so many others, had to quickly adapt to a completely virtual world of online interactions which, quite honestly, felt impossible. In comparison to my son and his friends who were au-fait with this world and shifted seamlessly into zoom, facetime, and online gaming to maintain their contact. I wondered how this might work for people living with dementia in the peer support groups who were expressing fear about what was happening to them in an already confusing world.

Despite my concerns and with little time to ponder as even before the need to lockdown was announced the first request for an online meeting came in. So, from week one we started facilitating one meeting; by week two we had three meetings. As the number of virtual meetings grew, they have been consistently attended to date enjoying attendance of between 12 and 15 members in each meeting. What has happened for me is a profound shift in appreciating how we can also experience a true sense of human connection even in this online space. An example of this I offer is in sharing video calls with the backdrop of our own homes has in some way further humanised us all and set us within a tangible and personal context. I am pleased to report that relationships not only survived but have continued to develop and many made anew. Each being in our own homes yet ‘together’ has allowed people to share aspects of their lives previously unseen. It is one thing for a group member to say they like gardening and completely another to be able to see their garden on screen. We have had the opportunity to look at models people have made, jigsaws they have completed or sewing projects half done. This is curious as in the face to face meeting format craft projects were previously met with disinterest often because of a wish to remain productive following their diagnosis and not to be sat in the corner of a room ‘sticking and pasting’ (quote). The ‘new normal’ for the peer support groups seems to embrace and share a person’s lived life. Communicating on screen with other members whilst sat in their garden, having a sandwich and a cup of coffee, and offering peer support with someone who is shielding alone have, at times, been a very moving experience. The virtual context has allowed members to strengthen their relationships with each other in other ways too, such as, sharing wedding or holiday photographs, describing, and sharing favourite walks. For me this has been the epitome of Maya Angelou’s – ‘We are all more alike than different’.

As someone who teaches ethics in social research, and so a staunch advocate of personal boundaries, this pandemic has given me a gift and an even deeper insight into my own life but also the complex lives of those I support. Unlike my son and his friends, our members may need weekly reminders on how to log in and use Zoom but, people living with dementia across the network are using it with very little support. They are able to voice their fears, raise questions and concerns from the safety of their own homes, and even engaging in craft projects with no fears about productivity or judgement.

Dr Jane Rowley

Twitter handle @janerowley02 @deep_notts

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