What other People with Dementia Say

It may be quite confusing to listen to what other people with Dementia say so it’s refreshing to listen to the people who really know and are professionally involved in treatment for Alzheimer’s. Just let’s listen to this rather unconventional video about a highly unconventional but at the same time highly effective therapeutic treatment for Alzheimer’s Disease patients. It’s so great to listen to Dr. Mary Newport speak at this TEDxUSF meeting:

Steven Newport, Dr. Mary Newport’s husband, was diagnosed with Alzheimer’s and Mary explored various available routine treatment options. However, when Steven’s symptoms became more severe and he couldn’t participate in clinical trials any longer. That’s when Dr. Newport’s scientific deductions were leading her to coconut oil and this application ed to the most amazing results.

Now let’s look at Jim’s story: “My computer is one of my best friends,” says Jim from his home near Guelph, Ontario. When he started using a computer for his work 15 years ago, Jim never thought he would be relying on it as much as he does now. But then again, he never thought about being diagnosed with dementia.

When Jim’s computer skills started to deteriorate, just like his memory, he set out to search help from an experienced occupational therapist instead of finding excuses for his memory slips. Together with his wife, they put systems and reminders in place that allow him to use his computer independently.

As an engineer, Jim solved problems throughout his career. He draws on those skills to help him with the new challenges he faces. He has three techniques. “I overcome, compensate and redirect. All of these things help me keep my head above water.” Though many people think Alzheimer’s Disease is inherited, Jim has his doubts. “You also hear also many experts say that it could be brain inflammation-related.”

Using his computer, Jim developed a “Reminder Chart” to set goals for himself and cue himself throughout the day. For example, his chart may remind him to drink more water each day, attend aquafit classes three times a week and call his daughter once.

Using the chart has aided his memory by making some tasks routine. It has helped him to keep in touch with family and friends and made him feel more in control of his life. This all adds to his self-confidence.

Jim now assists the Alzheimer Society both locally and nationally in looking at ways to help other people with dementia develop “Reminder Charts” that work for them. In the past, people hardly spoke about the disease but fortunately, these days, many Alzheimer’s patients speak out about the disease. Such a good thing!

Asked about searching for information on dementia on the Internet, Jim said: “I don’t look for it, it comes to me.” He subscribes to a site that sends him notices of news with the word dementia in it. He can choose to look at it, link to the original source’s website, or just ignore it.

We asked Jim if he worries about the accuracy or quality of the information on the disease that affects so many families. Most of the time he doesn’t worry, he said, because mostly the information comes from reliable sources. “However, if in doubt, I follow the advice of Ronald Reagan, who said ‘Trust but verify.'”

Jim is a DASN (Dementia Advocacy Support Network) member. This organization is helping people suffering from dementia from all across the world to connect and exchange ideas and information. When you subscribe to DASN you can get information in three ways:

  • You can receive all of the e-mail messages sent by members to the group. This can be a large number of messages each day and can be overwhelming.
  • You can get a summary of the exchanges that happened during the day. This still can be a large amount of information.
  • You can access the information on the DASN website. This allows you to look at what you want to look at and not have to figure out what to do with all of the other information you are not interested in.

Jim has tried all three methods. He finds that accessing the website directly works for him, but encourages everyone to find their own best way.

To those with dementia who are thinking about using a computer, Jim says “Right now is definitely the best time for trying it all out.” You can get help getting started from family, friends, books, videos and training courses. When you’re just starting out with your online activities, Jim has the following advice: “Check out the website of the Canadian Alzheimer Society. That is really a great resource that’s getting better and better all the time and you know that it’s trustworthy.”

One word of caution from Jim: make sure you don’t get consumed with looking only for information on dementia if you think you could have Alzheimer’s. “There is a lot of information out there on all kinds of things — you need to find a balance.”