Dementia Help is a year old today. Founder and co-director Christina Macdonald talks about the inspiration behind its launch and why she felt she had something to say.
Dementia Help was a random idea that came to me in December 2016 while I was in the gym. It was six months after I’d lost my mum to vascular dementia and I was thinking about a conversation I’d had with a friend, who called me for advice on her father’s recent diagnosis. I’d spent a few hours with her talking about how to cope with the present and plan for the future. As she described what she’d been through, it made me realise that there are so many common threads with dementia. Yes, we’re all individuals and people will respond to the condition differently. Nonetheless, there are some very distinctive symptoms, such as mood swings, anger, frustration and lack of ability to make decisions. None of which I knew about when mum was first diagnosed. All I knew back then was that dementia affected memory. But as my friend Emma described how her father’s behaviour had changed, I knew I could save her a lot of stress by explaining how she could manage specific situations. So many things she had described with her father were similar to experiences I’d had with my mum. Then I started thinking about mum’s diagnosis in 2009. If I had known then what I know now, life would have been that little bit easier. It would have been easier to cope with the unpredictable days of repeated phone calls, random behaviour and occasional bursts of aggression, because I would have understood why they were occurring. I started to feel that it was very important to get some information out there to help carers cope.
A few days later, a couple of other friends messaged me on Facebook asking for advice, as their parents had been diagnosed with dementia. They asked a lot of specific questions, which I answered in great detail. I decided I wanted to share my experiences with a wider audience. I had the idea to set up a Dementia Help Facebook page for carers. By now it was January 2017. I announced on my personal Facebook page that Dementia Help would launch in the first week of February. Going public with the deadline inspired me to make it happen!
I also knew I had to have a website. It would be a basic WordPress site. I set it up but didn’t have the technical knowledge of how to make it go live. I had a lot of tech support from Dave Collison, now our website editor, who used his considerable skills to get the site ready at very short notice. I posted some blogs and put some tips on the Facebook page. The reaction blew me away. I expected a small following. Before I could blink, we’d reached 1000 page Likes. People were engaging with the page, commenting, sharing their experiences and communicating with each other. I had never expected anything like this.
As a journalist, I was supplying content for clients in the healthcare sector. I told them about Dementia Help. One of them told me in no uncertain terms I should develop it further. I realised that I could help more people and had something very special. I was looking after PR and social media for The Alzheimer’s Show. I suggested to them that Dementia Help had a dedicated networking area for carers at the show in June. They agreed, so the idea of the Dementia Help Carer’s Corner was born. My website editor, Dave Collison, also a professional singer, offered to come along and sing. Carer’s Corner was a huge success. Myself and a few of my friends, who had all experienced what it was like to care for a loved one with dementia, met and spoke to lots of carers. Dave sang his heart out and many people with dementia joined in with the singing. They knew all the lyrics to songs by Elvis, Neil Diamond and Roy Orbison. Some of them even got up and danced. It was an emotional weekend.
In the summer, Dave and I met and interviewed Peter Berry and his wife Teresa. Peter has early onset Alzheimer’s. He was diagnosed at the age of 50. Despite his diagnosis, he remains positive and is keen to provide as much insight as he can on what it’s like to live with the condition. He was intrigued by what we were doing with Dementia Help.
I began driving Peter to various dementia conferences. A conversation in the car one day led to me inviting Peter to join Dementia Help as my co-director. Peter accepted with great enthusiasm. I’m still amazed that a random idea conceived on a treadmill has helped so many people. I’m proud, but not complacent. We have a lot of work to do. We want the Facebook page to continue to offer relevant and useful advice. Unless someone has cared for a loved one with dementia, they won’t understand what it’s like. Friends mean well but they won’t truly appreciate what you’re going through unless they experience it for themselves. And frankly, you wouldn’t want them to go through what you’re dealing with on a daily basis.
I know that practical advice and physical support will make the single biggest difference to carers. And while I can’t help with physical support, I know we can provide a great deal of helpful advice based on our experience. We’re here for you. The more you know about the condition and how it affects a person, the easier it is to cope with the challenges it brings. In a year’s time, I hope we’ll be helping tens of thousands of people affected by dementia.