Joyce: Getting online and ‘getting involved’ again
14 Jul 2016
When Joyce was diagnosed with Alzheimer’s, she began to feel very alone. She was always a social lady, but when her symptoms meant that she struggled to remember names and faces, she started falling more and more into isolation. But now, thanks to local UK online centre Age UK South Tyneside, she’s been able to develop her digital skills and ‘get involved’ again.
Joyce is a 69-year-old ex-nurse who lives alone following the death of her husband. Before her diagnosis she was already finding it quite difficult to keep in touch, due to her family being scattered all over the world in different time-zones, and her friends moving into sheltered accommodation. When she began to experience a lot of the classic symptoms associated with Alzheimer’s, she didn’t want to admit to herself that there was a problem.
She says: “Because I worked as a nurse, mainly with older people, I had some idea of dementia and was aware of the symptoms, but I also knew that these symptoms could be caused by a multitude of other things. I guess I was in denial for a while until it became impossible to ignore it any longer.”
As her memory began to deteriorate, Joyce became less and less social. She says: “I often struggled to remember names and faces. Then I began to forget even the simplest of day-to-day words, so to try and hide this I spoke less and less to others. I’ve always been a people person and been able to hold my end up in a conversation - but I guess because of pride I didn’t want people to think I was stupid or forgetful.
“One of the key things that forced me to seek help was constantly mixing up my granddaughter with my daughter, and sometimes having no recognition at all of my own daughter. I have accepted it now and they both understand, but when it first started happening it was confusing and upsetting to us all. I don’t see them often so it was terrible that when they did visit I barely knew who they were.
“The best way I can describe it is like being in a film where you start forgetting the plot, some of the characters and some of the script. You try to piece things together as much as you can.”
Joyce decided to attend a pop-up Age UK event in a local GP surgery, to see how they might be able to help her. They did a demonstration for her, showing her how to use a tablet to access health information, book GP appointments, and order repeat prescriptions, as well as how to use Skype.
Joyce says: “I had used a computer a little at work, but basically I was new to it. The screen looked cluttered at first and very daunting to try to learn, but I was able to have a go and realised how easy it was to use. After speaking to a volunteer, I saw the potential of using digital to improve things for myself.”
The Age UK team arranged to visit Joyce at home, to teach her more about all the things she could do online. She says: “They cleared off all of the programs I wouldn’t use and left me with just a few things to click on. I even got to pick which pictures to use, so I would best remember which button did what.
“They showed me everything. Now I can use email and Skype, so I can speak to the family who are all over the place. I feel that I can pick up my tablet and catch up at any time. I have all the web pages I go to all the time starred, so I can find them easily. I can get in touch with my doctor easily, read the newspaper and do puzzles whenever I want.
“I have been shown how to use Google as well, so I started looking up things to help with my Alzheimer’s. I have been able to join a couple of social groups and have signed up to ‘Singing for the Brain’ and go bowling once a month. I can also get in touch with my tutor any time I want if I get stuck and he will help me.”
Learning to communicate with others online has been a big help for Joyce, especially with the large phone bills associated with calling family abroad. She says: “The tablet is so much more convenient than a phone. Everyone works so even trying to ring on a mobile is not always possible but email, Skyping and messaging helps a lot. I have even started helping one of my grandsons to research our family tree. That’s one of my favourite things to do online because it gives me a chance to do something with my grandson.
“I would, of course, recommend getting online to other people with dementia. If only for the communication alone but you actually get so much more – information, support, entertainment and convenience. It lets you work at your own pace and you can do it when you want. It really helps people with dementia to clarify their thoughts and to gain more knowledge about and control over their health.
“Before I was worried that I would just get worse, end up in a home and then I wouldn’t be me any more. I have met so many positive people and now I am determined to make the best of things. I feel free to explore, able to ‘network’ and get involved again.”
To find out more about Good Things Foundation’s work on the NHS Widening Digital Participation Programme please visit: http://nhs.tinderfoundation.org.