When Elizabeth B (not her real name), was diagnosed with vascular dementia in 2013, she immediately began to lose her independence, but thanks to the tutors at her local UK online centre, Age UK South Tyneside, and the online world, she now feels more in control of the aspects of her life which she thought were gone forever.
Before her diagnosis Elizabeth described herself as very organised, but when she found out she had vascular dementia – the most common form of the disease which is estimated to affect more than 135,000 people in the UK alone – things changed very quickly for her. She says: “Every aspect of my life was planned. I was very independent, cooked and cleaned for myself and I was very active – I drove, played bridge competitively and loved puzzles of all sorts.
“When I was diagnosed I was advised to stop driving so I immediately lost some independence. I often struggle to remember the simplest of things which has made things like doing puzzles a struggle. Even when playing bridge there have been a couple of times when I completely forgot how to play which is both frustrating and embarrassing, so I eventually gave it up.
“Because of the dementia I struggle to remember recipes and have become increasingly reliant on others to cook and clean. Even trying to hold a conversation feels like a struggle at times.”
Vascular dementia is caused by reduced blood flow to the brain, which damages and eventually kills the brain cells. In many cases, those who are diagnosed with the disease suffer several symptoms, including slowness of thought, problems with attention and concentration and mood or behavioural changes, most of which are very slight at first.
Elizabeth explains: “When I first started getting symptoms I put it down to getting old. People often start forgetting names and words, so I thought it was the same with me. As things progressed the memory loss got worse and things like my co-ordination suffered. I discussed it with my family and, with all the things that had changed, we came to the realisation.
“My granddaughter joked that it was like I was drunk! Thinking about it, it really seems like it at times. Knowing that things will inevitably get progressively worse is a huge worry.”
When things started to get on top of Elizabeth she moved into a home. She says: “I moved just over a year ago. I know help is always at hand but this is not home to me, and I often worry that I have become moodier because I get frustrated when I can’t do things I used to do.”
In the summer of 2015, Elizabeth met the team from Age UK South Tyneside, who introduced her to all the possibilities that the internet has to offer – it opened up a whole new world for her.
“One of the first things I learned how to do on the laptop was use email and Skype,” says Elizabeth. “This has helped me to stay in touch with family and some of my friends. I was then shown how to use Google to find information and how to use the NHS Choices website. My tutor showed me how I could find out about my type of dementia and about groups that could help me.
“We also found out about activities I could do that would help slow down the progress of the dementia. I was helped to sign up for the Alzheimer’s Society’s ‘Singing for the Brain’ and I also found out about a dementia-friendly café. We looked at YouTube and other sites, so I could find music, tv programmes, radio shows and documentaries.
“In November I started shopping online and I was able to do my Christmas shopping on my laptop from the comfort of my room. We looked at games online and I found a page with jigsaw puzzles that I can do. It’s not quite the same as a proper jigsaw but it keeps me thinking!
“A few of us now play scrabble on the internet too which has been great. We’ve got a team and we can challenge other teams or play each other.
“I was taught to use Word so I can write letters. It helps me with spelling and I can use a thesaurus to write letters at a standard nearly as high as before the dementia.
“I’ve even registered with my local doctor’s surgery, so I can book appointments without having to call first thing in the morning and I can get my medication without having to call during the hour the prescription line is open. It’s been great!”
For Elizabeth, getting online really has helped to increase her independence, allowing her to challenge herself and to better communicate with others. She says: “I can now speak to people when I want and can get in touch even when people are not free to talk on the phone. I can make myself more understood as I can take my time drafting emails or letters without getting flustered and forgetting things.
“I can write down my thoughts so people can see them on screen rather than in a notebook where my handwriting is not always the best and even I struggle with what I have written at times. People can check in with me to make sure things are OK which gives me and them more confidence.”
When Elizabeth first started learning with Age UK she was really nervous, but now she finds learning fun. She says: “I don’t go to a centre – my teacher comes to me and I can keep in touch when I want to. When I first started I was worried that I wouldn’t be able to learn something new, especially with the dementia, but everyone has been really great. They take things slowly and don’t move on until I’m happy and I understand everything.
“My confidence has improved steadily and I’m not scared to take on anything new. My tutors are wonderfully patient and nothing is too much trouble for them. They make learning fun!
“When I’m online I feel empowered to take back control over aspects of my life I thought I had lost. I know how much help is available if I need it and as long as I’m careful I know how to avoid problems online.
“I would like to put all of my photo albums onto my computer and sort them properly, so I can leave them for my family. Some of them have been damaged which upset me but it might be possible to fix them on my laptop! I’ll have to wait and see.”
Would Elizabeth recommend getting online to others who’ve been diagnosed with dementia? “It has helped me with my independence and my confidence,” she says. “It has made it easier to keep in touch with people and I feel part of things again.
“It won’t give you back what you have lost but can help slow any decline, and get you involved and active again. I would definitely recommend it.”