Dementia has been a priority for us since I joined Healthwatch in November 2014. It was one of the things that attracted me to the role, as I have a background working with people with dementia.
Right at the beginning, when I first started to make contact with organisations and support groups about coming to talk to people living with dementia, some of them needed to be persuaded to take part as they thought that people living with dementia wouldn’t want to talk or share their views. But in practice this has never been an issue. Most people, even with quite complex needs, really wanted to give their views and valued the fact that they were being asked.
Since then we have developed some great relationships with many organisations who work with people living with dementia in Wiltshire and have no difficulty in finding places to go and talk to people.
Taking time to listen
A big thing for me has been learning different ways of talking and listening with people living with dementia. It’s about being able to adapt to the situation you’re in. When introducing a new project, I’ve learnt to keep to the point and not to get hung up with trying to explain every detail or give too much background information. On the other hand, when listening to people, I’ve learnt not to worry if the conversation goes ‘off topic’. Just spending a bit more time listening will often uncover some very important views and experiences.
Whenever we have visited a group we always joined in with the activity, as this really helps people open up to you. Our volunteers also enjoy this and it’s a good way of starting a conversation. The process of gathering feedback can be a take more time but you’ll get better quality information as people will relax more if they don’t feel rushed.
We always received a lovely welcome from the groups we’ve visited, sometimes they didn’t know anything about us but were always open-minded, polite and friendly. They shared a huge range of experiences with us, often coupled with strong emotions. Often their main motivation for telling us about improvements they’d like to see is that they didn’t want the things they’ve experienced to happen to others. I have found it very inspiring seeing how people living with dementia and their carers want to be part of improving the quality of dementia services for others.
Getting people involved
In our most recent project, a key part of finding out what people living with dementia thought about dementia friendly services in Wiltshire was to involve them right from the start, to help us design a survey that they could understand and feel able to respond to. We enlisted the help of Laverstock Memory Support Group who shared their views on whether the questions we’d come up with made sense, how they were interpreted and if anything was missing. We then used their responses to inform what we asked and how the questions were phrased.
Overall, I feel like we’ve really captured people’s opinions and brought them to the attention of those who can make a difference. It’s great to see that their views have been taken on board and so many positive improvements have made to services across Wiltshire.