Our Member and Trustee Davie McElhinney shares his experiences of disorientation and explains why the Herbert Protocol is an important step in ensuring people with dementia stay safe while out and about...
I generally know where I’m going when I’m out and about but like many people with dementia, I experience moments of disorientation – sometimes being amongst crowds of people or being in an overly noisy environment will cause me to feel very disorientated.
The first time I got lost I was in Erneside, my local shopping centre in Enniskillen, where I was due to meet my wife Alison for coffee. It’s not that big a place but as I stood there, I began to feel agitated and soon realised that I was in the wrong place to meet her. I couldn't identify the place I had to go. All rational thoughts go out the window in these situations and fear and panic takes over. I felt anxious and helpless and worried that I’d never find her. Luckily Alison came to look for me and found me which was a great relief!
The second time it happened was when we were in a shopping centre in Glasgow. I got talking to a guy from Galway in a shop and Alison said she would go on. She told me where she would meet me but I forgot and when I left the shop, the place looked huge and the faces in the crowds began to blur. I felt so alone and overwhelmed, and I had to ask a security guard to help me find Alison.
Although these have only been brief periods of disorientation, it makes me realise that I would hate to get completely lost. In the wrong circumstances it could be very scary – for example, I’d be worried about falling and getting hurt or being out overnight and not being found.
For this reason, the Herbert Protocol is going to be a valuable document for myself and other people with dementia. It won’t be a remedy but it will certainly help the police to know where to look in their search. While it won’t stop people getting lost it will help them to be found more quickly.
It is vital to get quick closure when someone is reported missing and the Herbert Protocol can help provide this. It leaves the family more confident – my wife Alison is all for it as she knows the Herbert Protocol is another step in ensuring I am able to stay safe while out and about.
I sat down and filled my Herbert Protocol document in with details of places I like to visit regularly, such as various places in the local countryside that I enjoy and close neighbours’ houses. I have several copies and keep them in different places at home – there is one in the kitchen and one on the hall table – and I have told my whole family where they are so everyone is aware.
I am very proud that I and other Dementia NI members worked with the PSNI to make recommendations on the information that is gathered on the form. I believe this initiative is something all emergency services should be aware of, not just the police, and something that everyone with dementia should download from the PSNI website and use.
Just knowing I have the form in place makes me feel more confident, on a subconscious level, about being out and about and helps me to continue living a fulfilling, independent life.