Summary of Survey Results 2002


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 :)

       

1.

What is your sex?


Female


256

89%
Male 31 11%
  287 100%
       

 

2.

What type of caregiver are you?


Family caregiver (non-professional)


218

75%
Facility-based (Nursing Home) 6 2%
Facility-based (Assisted Living) 8 3%
Geriatric Care Manager 8 3%
Financial Professional 0 0%
Legal Professional 0 0%
Other
50 17%
  290 100%
         

3.

In what year were you born?

Average 1930 (for spousal caregivers)

Agerage 1948 (for parnet caregivers)

 

6.

For whom are you caring? (Check all that apply)


Spouse


93

32%
Parent 153 53%
In-Law 15 5%
Grandparent 6 2%
Other relative 8 3%
Friend 3 1%
Neighbor 3 1%
Client 29 10%
Other
29 10%
       

 

7.

What is the sex of the person(s) for whom you are caring?


Female


135

47%
Male 97 34%
Both 55 19%
  287 100%
         

9.

In what year was your care recipient born?

Average 1920 (for parents)

Average 1937 (for spouses)

10.

Where does your care recipient live?


Own home (long distance)


29

10%
Own home (moderate distance) 19 7%
Own home (nearby) 48 17%
Your home 134 47%
Other relative's home 6 2%
Assisted living facility 30 10%
Nursing home 26 9%
Short-term nursing or rehab facility 4 1%
Other
41 14%
       

11.

Which medical conditions does your care recipient cope with? Select all that apply. Note: These responses will remain stricly confidential.


Alzheimer's Disease


164

57%
Other Dementia 96 33%
Arthritis 106 37%
Cancer 39 14%
Cancer (terminal) 17 6%
Heart Disease 90 31%
Chronic Lung Disease (such as Emphysema) 39 14%
Osteoporosis 69 24%
Parkinson's Disease 42 15%
Speech Disorder 34 12%
Stroke 64 22%
Other
104 36%
       

 

12.

Do you participate in a support group? Please select all that apply.


Live group with local Alzheimer's Association


29

15%
Live group with other Alzheimer's support organization 8 4%
Live group with Children of Aging Parents 3 2%
Live group (other) 21 11%
Online group on ElderCare Online/ALZwell 78 41%
Online group on MSN or Yahoo 25 13%
Other
80 43%
       

13.

Please tell us what areas ElderCare Online and ALZwell are doing well at. What distinguishes us from other websites?

  • 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.

14.

Please tell us which areas you think ElderCare Online and ALZwell could improve...

  • 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.

15.

If you are a Stroke Caregiver or a Parkinson's Disease Caregiver: Where do you currently find information and support?

  • 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.

 

16.

Do you read information on Healthy Aging, Senior Lifestyles, Fitness & Nutrition, or other related topics? Would you be interested in reading more on these topics?

Almost everyone responded YES

 

17.

If you could recommend one book, organization, and/or website to a new caregiver (Alzheimer's Disease or other caregiver), what would it be?

  • Your group seems to cover all bases
  • The 36-Hour Day
  • The Bible
  • Share my Lonesome Valley by Doug Manning
  • Alz Association and The Ribbon
  • "Comfort of Home"
  • "A View from Within"
  • ALZwell and ElderCare Online
  • local Office for the Aging
  • Creating Moments of Joy
  • My Turn a Daughter's Perspective
  • Alzheimer caregiver support website
  • Care That Works by Zgola
  • Courage to Care by Joanne Parrent
  • Exercise video by National Institutes of Health
  • Early Atage Dementia by Lorraine West
  • Any book by Wendy Lustbader or Naomi Fiel
  • lovingcaregivers group@yahoo.com
  • "there's still someone in there" [title?]
  • One that I want to purchase myself......' Elder Rage'
  • Molecules of the Mind/NDMDA
  • Scic@yahoogroups.com
  • Washington University Alzheimer's List
  • Today's Caregiver Magazine or Caregiver.com
  • LBDcaring spouses@yahoo
  • Alzheimers daily news
  • Coping With Your Difficult Older Parent : A Guide
  • Beyond Indigo
  • National Family Caregivers Association
  • www.alzheimercentre.ca
  • NIH, NIA website
  • Talking to Alzheimer's by Claudia J. Strauss
  • Therapeutic Caregiving/Barbara J. Bridges, R.N.
  • The Best Friends Approach to Alzheimer's Care
  • Bible-----next, this site.

 

18.

Would you be interested in participating in a research designed to study experimental treatments for Alzheimer's Disease or other illnesses?


Yes


129

48%
No 138 52%
  267 100%
       

19.

Would you like to receive the ElderCare Beacon newsletter in the future?


Yes


259

94%
No 16 6%
  275 100%


 

 

 

 

Available from ElderCare Online™             www.ec-online.net             2002 Prism Innovations, Inc.