Ghazal Mazloumi is a development worker for Trent Dementia working on the Notts DEEP support hub her role is to support people living with dementia to establish peer support groups and activities across the East Midlands. In October 2019, the hub launched a virtual walking group inspired by Country Walking Magazines #walk1000miles challenge. We decided to set an individual and collective goal for people in the DEEP network who can register their steps or miles online or by phone. People in the East Midlands can join organised walks and we have fitness trackers for people living with dementia to use every day to track their steps. Ghazal writes here about needing courage to start organising these walks and what has helped her to overcome her own fears about taking risks.
– Dr Jane Rowley – Project Manager
When our Project Manager proposed #Walk1000Miles initiative for people living with dementia in collaboration with DEEP and Country Walking magazine, it seemed to be something that people living with dementia might enjoy. I remembered images of people in care homes, sitting isolated in their own rooms. I thought that this would be an opportunity to laugh and talk and socialise with people in the community and in their own care homes.
But to be honest with you, when I tried talking to people about this initiative, suddenly it turned from an interesting enjoyable activity to something with legal jargons and unsafe. When I was training for support worker / healthcare assistant role for an agency, they talked about risk assessment. If you want to start any projects, one thing the insurers ask is if you had done risk assessment. I guess this is related to what Shelagh talked about in Life with Dementia 2019 event, about helping and allowing people with dementia to take risks. For people with dementia to live well with dementia and have a better quality of life, I think those who work for them at services also need to have the spirit of taking risks. I didn’t at the beginning. I need to admit. I became afraid.
People were talking to me about public liability, counting the walkers at the beginning and at the end of walk. It turned to something too big to shoulder. During Christmas break I thought, what is this big deal. I can go to one of the walks and shadow the walk leader to see what they do. Of course, they counted the attendees when they started walking and when they finished. The back marker and the walk leader were wearing same colour caps in order to be able to pace their walk so that it’s not too fast nor too slow for the attendees. I am not experienced, but after talking to the walk leader and receiving her guidance and advice, I felt more at ease.
I think those who could ultimately help people living with dementia to have a higher quality of life in the community, be it the shopkeeper, the walk leader, the nurse, the insurer, the lawyer, etc., hold assumptions about people with dementia. These assumptions might eventually lead to asking people living with dementia to prioritise safety over social mingling and physical activity. After consultation with the Project Manager, after looking at advice on the dementia voices website and after consulting with the Trustees and the insurer, I thought yes, we need to think about liability, insurance, training, etc. But these challenges are not too big to the point that I think I need to cancel this activity.
For people living with dementia to be supported to take risks, I think service providers need to develop courage. This courage for me, comes from consultation with specialists, supervisors, managers, people living with dementia and their carers. People can accompany each other to feel supported and learn skills. So, I think collaboration within the community between different sectors can help increase the courage of service providers for people living with dementia and ultimately support people living with dementia to take risks, become physically active, socialise and have a higher quality of life.
Our project manager reminded me that that DEEP groups are independent and this is what we need to promote, we are not giving people permisssion to do things we are supporting people to continue to get outside and enjoy the world if they choose to do so. With my new courageous attitude, I have launched a weekly walk in Wollaton Park around the lake. I visited first to find a quiet route that is easy and flat for those people living with dementia who may also have mobility issues.
So, I hope activity gains momentum and I can #walk1000miles with people living with dementia who I am sure will support me too. I also plan to start other walks in different areas and if people are interested, we can support a new DEEP walking group to become established. So, ultimately Notts DEEP support hub will continue to help people living with dementia and their supporters to get empowered and organise their own independent walking groups.