Home > Uncategorized > What the Internet Can Teach Us About Dementia

What the Internet Can Teach Us About Dementia

As those who read this site on a regular basis are undoubtedly aware, I am currently working on a major revision/update that will hopefully provide a useful service to persons with dementia, and their families and care partners. I know that most of these readers are not prone to comment on what they read, but I’m asking everyone to take a few minutes to answer some questions that will help me know exactly what services are desired, and what priority is placed on their availability. (You see, I can guess what I think is wanted/needed in this area, but it would help me to know what the people who actually use this site want.)

So please take a moment to answer the following questions, in the comments section. If you don’t want your answers seen by others, feel free to send them to me privately at dustiladi@hotmail.com. Again, this is your website. Please help me to know what you’re looking for, and what you’d like to see in the future.

1. Tell me a little bit about yourself. What is your approximate age and location? Are you a person with dementia, or a family member or care partner, a profesional, or someone who is just curious and would like to know more?

2. List the 3 most important reasons you go onto the internet (and not just this website), related to dementia. This could be things like:
~ I have a particular form of dementia, or my family member has it, or I take care of someone who has it, or some other reason. Iwould like to know more about it.
~ My doctor used this really big word, and I don’t understand what it means.
~ I have a problem with something, or the person I care for has a problem, and I would like to know what to do about it.
~ Is there a cure or a treatment for my disorder? What is being done to find one?
~ I would like to be able to communicate with others who have my problem, for information and support.
~ I wish I could talk to a professional about my disorder, without having to make a doctor’s appointment.
~ I want to know how to find a nursing home for my loved one.
~ I found something that works really well to help with a particular problem, and I would like to share it with others.
~ And so on.

3. What is one of the biggest things that bothers you about websites that claim to give information about dementia?

Thank you for your help and support. I look forward to hearing from you.

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Categories: Uncategorized
  1. February 16, 2015 at 8:54 AM

    Hi, Saw your post on the Blog Marketing Academy FB page this morning and felt compelled to check out your site. Hubby and I are 60 years “young” and had been taking care of my 82 year old mom in our home until just before Christmas when she got a bad cold and ended up in the hospital for 5 days. From there she was transferred to a rehab facility for some PT. Praise the Lord she still recognizes everyone and her long term memory is good. it’s her short term memory and her lack of wanting to participate in ANY PT whatsoever that is holding her back from any progress and being able to come back home to live. She won’t even stand up long enough to transfer from the wheelchair to the car. It is a very sad situation. When we try to encourage her to participate in the PT so she can come back home she doesn’t even remember that she had been yelling at the therapists to leave her alone. We have been caring for her since Dad passed away in December of 2011. I realize now that the man was a saint… never complaining about a thing… just taking life one day at a time caring for her and living up to his marriage vows (sickness and health, etc). Unfortunately he passed after a very short (3 months) battle with an extremely aggressive form of brain cancer.

    Anyway hubby and I have been working on http://www.thismonthinsocal.com in our “free” time and hope that David and his staff can eventually help us get it off the ground.

    Meanwhile I wanted to give you some encouragement and let you know that there are people out here in cyberspace interested in hearing what you have to say about dementia. Keep up the good work!

    • February 17, 2015 at 9:54 AM

      Thanks so very much for sharing. I hope you continue to follow the work I’m doing here.

  2. February 17, 2015 at 9:00 AM

    Hi, Jami!
    I am a french woman of 60. My mother has vascular dementia. She was diagnosed 5 years ago. Her short term memory is very capricious. She is a bit difficult at times, impatient, often hostile when we don’t agree with her, kind of like a child, quite jealous of other people when I am with her… And she wants to be the center of my attention. But she likes to play with words, to laugh and tell me about old times. She lives in a nursing home close to where I live. I go and see her every day after work. On sundays, I wheel her to my place after lunch and we watch films. She dozes off a bit. Then back to the nursing home for the evening.
    I read your blog because I wish to understand how the mind works. And the brain. Which are not the same things. I read when I can The NYTimes; their Health section is very rich. And I read books about dementia, getting old, what it feels like from the inside in order to make less mistakes with my mother.
    Cécile Charbonnier

    • February 17, 2015 at 9:56 AM

      Thanks for your input. It’s people like you who are helping me to determine what shape my new site will take, and what it will offer

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