Befriending people living with Dementia

The Volunteero founders were befriending through a lockdown and wanted an easy way of matching, calling and reporting back on their befriending relationships. We have since developed into a full-service volunteer management platform but we never forget our roots. We loved hearing Heather's befriending story so much that we had to share it. A huge thanks go to Heather for writing this touching piece.

My befriending journey with people living with Dementia – Heather Potter

I have a lived experience of being a young carer, my grandmother Kay lived with Lewy Body with dementia and I became her primary carer as a teenager.  In Christmas 2020, I felt I wanted to fulfil a need to help people and searched for something locally I could do from home whilst I was working, something once a week for no more than 1 hour. I saw an advert online for the Alzheimer’s Society Leeds for a service called side by side.

The purpose of this was to speak to people who had been referred to the service from the memory clinic after saying that they felt lonely or alone. There was a series of online training such as safeguarding, data protection, a welcome to volunteering, basic dementia knowledge to do and a DBS check to complete and this took around a month to complete. I had filled in an ‘All about me´ half-a-page sheet for my role manager with all my hobbies, my interests, bands I liked, sports I followed, last book I had read, films I had watched and jobs I had enjoyed and then I waited to be matched to my first person.

This came about 2 weeks later when my role manager called to say that they had spoken to someone about me and that they thought I would be a good match for this person. I was given their name, a couple of facts about their likes, a time and a day of when they would like a call and off we went. We use a secure phone system so I never see their number and they never see mine. After each call, I email my role manager to let them know I have spoken to my person and they then record this on the person’s record. We do have peer-support monthly online sessions too led by our role manager where we share a little about our calls (not names for data protection), things that have gone well and give support to other people when they are struggling with their person. I also have the numbers to call for any safeguarding issue or anything I am concerned with, however small.

Since I started I have now been given a 2nd and 3rd person to call each week so I’m a busy volunteer but I love it. I’m so passionate about volunteering that I left my role as Head of Customer Service to pursue a career in volunteer development.  Back to the side-by-side phone calls, sorry I digressed. We were supplied with a series of introduction and topic cards to get us started, to be honest, I never needed them but they are laminated and filed in a folder should they be of use to someone else. Topics covered such things as hobbies and interests, music, gardening, food, family life, travel, school days and work. What I did find useful was speaking to someone on LinkedIn who was living with dementia themselves and was also a side-by-side volunteer and asking them “what questions would you like to be asked” and “how did you start speaking when you didn’t know the person”.

He shared with me that he starts by sharing a little of himself, people like to know a little about who you are, where you come from, and what’s your story and by doing this people are more likely to start to share and trust you. He said to give people time to answer too and if they don’t understand re-phrase the question and ultimately be their friend. He also recommended making a few notes in an exercise book after the call, just basic things about the topics you discuss so you can pick up on these the next time you call. For example, “you told me last week that your sister was coming to stay, how did you feel about that visit”. Try to avoid asking “do you remember” or asking too many questions that need a factual answer, try leading with feelings and being in the moment with the person. 

I have an example of this recently, I was speaking to a person who lives on her own and lives with a diagnosis of dementia who when I picked up her call said immediately “oh, Heather, I’m watching the TV and I’ve been watching this all afternoon I’m fascinated by this thing. It’s a white wall with black and blue things stuck to it and someone is running up it, it’s the most brilliant thing, I’ve been watching it all afternoon, I don’t know what it’s called but I love it, never see it before”. I said, “well I’ve got a TV in front of me, let me try and find the channel you’re on and see if I can see what you’re watching”. I found it within a few clicks, it was the European championships boulder speed climbing women’s final on BBC1. Funnily enough, I had been watching some of the semi-finals the day before so I had an idea of what she might be watching, I loved it too, never seen it before either. I said to my person “well, instead of our normal chat we could watch this on the TV together instead if you want” she said “you know, I can’t remember the last time I watched TV with anyone it must be over 2 years, oh yes let's do that”...

So we did and she was so excited, more animated than I have ever heard her be in any of her previous chats. We talked about a woman who had pink dye in her hair, was she going to reach for that boulder, that the climber’s fingers must be hurting, that one climber was doing the splits (nearly), who was going to win or fall off. She was giggling and laughing with me. When it got to the last 3 climbers she started to become quieter so I asked if she would like to watch the last 3 climbers on her own so she could concentrate without us talking through it, she agreed she would like that. I told her that I would hang up the call but that I would be watching the final 3 climbers on my TV at the same time and we would discuss it next time. She didn’t remember watching TV with me the next week (a feature of her type of dementia) however she remembered how she felt the last time we spoke, we were happy and giggling and we had fun. 

In my experience, people with dementia won’t always remember what you spoke about on the phone but they will remember how you made them feel.

In my experience, people have dreams, hopes and ambitions that they want to still achieve. I had callers who told me that they wanted to do archery again, go to hear lectures on archaeology, go to the Chelsea flower show in person, visit Paris and see the Mona Lisa, grow potatoes on their balcony, buy a pizza oven for the garden and sing in public again. You should be there supporting them in these dreams, they are still eager for life and what it can still offer them. They don’t conform to any particular type, they are every bit as varied and individual as people in younger generations and so very interesting. I recommend ‘being in the moment’ for that person, giving your full attention, no distractions, listening, showing interest and sharing a little of you with them. In return, you will feel you have made a difference, connected with someone and you will feel you have a meaningful purpose.

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