These survey results are not for public consumption and publication is strictly by
permission only. We do not permit the revealing of personally identifiable information and
will prosecute violations of our members' privacy. These results are aggregate data and
may or may not be scientifically valid. The survey and its results are intended for the
improvement of our online community and to help guide us to develop better information and
support services.
Not all survey responses will be published here in the interest of
conserving space, however we will share a fair sampling of all responses: the good, the
bad, and the ugly.
The final question (Number 20 in the original survey) allowed for general
comments. Positive and negative comments have been posted to the appropriate earlier
question. I appreciate the personal messages, condolences on the loss of my father, and
continued wishes of "Good Luck." Thank you :)
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13. |
Please tell us what areas ElderCare Online
and ALZwell are doing well at. What distinguishes us from other websites? |
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- Substantial and reliable information
and data.
- I also work part-time for
County Government. We case manage clients with various medical problems. I have found
several things which were helpful to us.
- Variation in topics and the emphasis
on self-care
- Very informative. Sometimes I feel
that someone is actually reading my mind as many times my questions have been answered in
various articles.
- 1. User-friendly website
2. Caring moderators
3. Useful information for daily caregiving
- The folks in your community are
sincerely caring and supportive.
- Your message board, i get help with
my questions almost immediatly.
- This is the only newsletter I get.
It makes me more informed.
- The main feature of your web site
which makes you an EXCELLENT one is your professionalism. I particularly enjoy the feature
articles and book reviews. I do not use the chat rooms at all. You provide a very
comprehensive and valuable service.
- ALZwell was a major influence when I
was caring for my Mom. Thanks.
- I like the format and it was
relativly easy to get started in the forum of my choice.
- Support from your website helped me to adjust to the
tragic reality of the situation I am dealing with.
- Your information is up to date
- Interesting, timely articles, you
understand and are sincere.
- Only one I use. I like it very much.
- you care about what you do for
others and as i read what you have to say i can feel it in your words
- Extremely accurate and
informative..i love it and recommend it to others who are in the same category
- I haven't been to other sites...I
just know that at Eldercare Online there are other people coping with some of the same
problems I face. I'm encouraged.
- Mostly I use the online chat - that
is a tremendous support for me and I go there most every evening.
- You get to the "heart" of
things!
- The caregivers that participate are
experienced and knowledgeable so they can offer real solutions or suggestions.
- The monthly newsletter and the
positive outlook on the disease is a welcome relief from all the bad news that comes with
Alzheimers disease.
- I like reading about the personal
experiences, it give me ideas on how to better cope, and also any progress in prevention
and treatment.
- Practical information. Personal
involvement. You talk from inside the problem, not as outsiders.
- I enjoy all the articles on every
subject. I am a professional speaker and speak on aging (and other topics) so it is very
helpful to use you as a resource.
- Support,validation,friendship,information,letting
me vent my frustrations in a safe place, my new family.Have not gone to any other support
group websites as this one has been so helpful to me in some very difficult times.
- Highlighting significant and
pertinent topics. No advertising distractions. Easy links. Comprehensive with news, forums
and chats. Has an intimate, warm, caring component.
- Common sense ideas for helping care
for those in need.
- From the start of my caring for Mom
before we placed her in an alf the support I got from chat and info was the thing I most
depended on.. perfect
- I am getting great support from the
ElderCare site. Any questions or problems are addressed immediately. I tried another site
that used emails and I got so many that my box was bouncing emails from family and I had
to cancel. I am homebound and cannot get out to attend support groups in person, so
ElderCare is my only means of support.
- I enjoy Rich O'Boyle's writings. If
I had more time I would read more of the individual articles. I haven't found the chat
groups to be very useful for me... but I understand why others would want to use them.
- Your site has been a godsend for me
in a totally unexpected way. My friend's elderly mom was ill and asked me to do some
research. She had been to very competent physicians up and down the east coast. Browsing
through one of your forums, "the light came on" and I had her diagnosis
(Parkinson's) -- later confirmed by a new specialist in this area. She is now on
appropriate medication -- feels better and is eating more. She is 87!
- Your website is a tremendous
resource for caregivers. I also work for a local Area Agency on Aging and use it to get
information for our clients and their families as well.
- I would like to see a live
interactive journaling group in the chat room, or as an added activity. I do this when I
am in Florida at the Wellness Community, and have found it the most helpful thing in
learning about myself and how I deal with life's issues (not just the caregiving).
- I am so tired at the end of the day I hardly ever have
time to myself. When I do feel energetic and spend time at the ALZwell site I always feel
better, knowing there are others going through the same daily struggle as I am.
- My mom was diagnosed only 6 weeks.
This is scary, overwhelming, and heartbreaking. I am an only child, Mom is a widow, and I
am feeling that I need to to it all. She is a 3-hour drive away, which certainly is
do-able for now. Getting your newsletter was a God send!
- I was very lucky to find the
ElderCare site. It has been an absolute lifesaver to me. I can't imagine how I could have
managed to survive this rollercoaster ride without the friends I have made on ElderCare.
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14. |
Please tell us which areas you think
ElderCare Online and ALZwell could improve... |
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- I do think more about chronic
illness other than Alzheimers is useful. I myself have a chronic disabling illness, which
complicates life even futher.
- More input from other caregivers on
how they solved small problems such as my wife always in the fridge!!
- Maybe a more concise way to show the
contents of each issue for those of us who only have time to scan our emails and not read
an entire pageful before we delete, sometimes I just give up and delete.
- I used to think you message board
was helpful, but mostly it is people ranting and raving. I realize that there is a need to
do that but it is in every catagory. Also, when you post, the newest post should go
on the bottom. I have to scroll to the end to find if there is any useful information for
me.
- More articles on Alzheimer's, access
to chat transcription.
- Visual presentation of website is
not attractive.
- Keeping topics "subject specific"--I find
that threads often wander off subject way too much from the original topic.
- More in-depth feature articles.
Also....I think more articles are needed to reach those parents about-to-become
caregivers, who do not have a clue about what journey they are about to enter. And yes,
your ideas of fitness,etc. for caregivers are excellent.
- Could be easier to register and log
in.
- I would enjoy more info about
alzheimer's and not so much talk about nothing.
- Talking more about intergenerational
living and the impacts it has on all involved, from small children to elders.
- I'd like to see more statistics on
early age (50's) alzheimers disease victims and more articles.
- I would like to know of some resources for help. Who
pays for what? What is she entitled to?
- Would like to see more on FTD
(Frontaltemporal Dementia). How to deal with behavior problems. How to deal with
embarrassing behavior, sexual behavior...
- Chat rooms are a challenge
- Recently there are times when the
hosts of the chat lose control of what is happening and it gets really silly. It's one
thing if there's no one new, or people that have questions; but it happens even then. The
other thing is that although there are topics listed in the calendar, they are always just
"open topics."
- A way to be able to buy other caregivers used
books.
- More information regarding Lewy Body
Dementia.
- More info for those of us caring for
non-alzheimer's family members, and for those whose parents are a little younger, but
still need help.
- More on depression.
- All web sites need to curtail the
information dispensed. Most give too much information. I appreciate the information but I
really need it to be cut back. I can't spend the entire day reading e-mails. Many messages
wind up being deleted because I don't have time to read them. Too much information
becomews overwhelming!
- If there were people in the chat
room at times other than at night-that would be good.
- Website is difficult to read... too
much information presented in a way that is hard to read... maybe boxes, or color or
different backgrounds to divide the information up.
- I'm not in to chat rooms, so I would
like to see more information in the main newsletter.
- More information on the medical
system.political advocacy no more pussy footing " non-partisan ship" Do you want
your kids to have to ruin their futures and give up the present for the privilege of care
giving be honest now!
- More variety and information on
"caring for the caregiver"
- Directions for using the chat part
- Board crashing
- Need some legal advice articles.
- Too much advertisement.
- Improve the form. I think its a
great way to get information if you can post new entrys at the end as have people go off
on a tangent on another form
- Let me chose my own password since i
keep forgetting the one sent me!
- More information and sharing
regarding terminal stages of Alzheimers/Dementia relating to physical care, etc..,
- More information about strokes and
there effects on both caregiver and family.
- It is very pointed to caregivers who
are dealing with Alzheimer's and Dementia.
- I try to read and keep up with
things but have just too much to read and do. Many articles seem to be repetitive.
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15. |
If you are a Stroke Caregiver or a
Parkinson's Disease Caregiver: Where do you currently find information and support? |
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- Stroke magazine
- Don't
- A local group called "Strokes
of Support" and American Stroke Foundation. I have also attended some educational
meetings for alheizemers patients.
- www.stroke.org
- Your web site,web.md is a good site
for info on illness symtoms etc options,google search engine works for me for info search
- From his gen. physician,
neurologist, psychiatrist, neuropsychologist. YOU
- Have two best friends that are
nurses.
- I am member of Parkinson's Assoc
speakers bureau and obtain information directly. Obtain information on other concens from
various sites on internet and from reference materials within my office obtained directly
from the association in question; occasionally from AARP or others.
- find the information on the web. I don't have any
support, per se.
- Parkinson's foundation, Physician,
internet, reading, family
- alz, bottomlesscoffeepot
cafe,doctor, online,lovingcaregivers group
- Parkinson's Society local group and
online groups, library, word of mouth, friends and fellow carers
- I haven't looked for any information
yet because she was just diagonised this morning
- Most of my support comes from - SCIC
on Yahoo
- Stroke Assn. of S. CA, American
Parkinson's Disease Assn.
- American Stroke Assoc., National
Stroke Assoc.,S.A.F.E., The Stroke Network, Aphasia Hope Foundation, etc.
- Mayo clinic web site, caregivers
alliance and national parkinson's assc.
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