Through contacts from my social worker, I have received information about a paid caregiver survey you may be eligible to participate in. The money is for YOU. Some of you were generous in sending me the money from the last survey, but this company is paying me a referral fee, so the $50 you will be paid for participating in the survey is for YOU to do something nice for yourself. I always figure that however we can help outsiders understand Alzheimer's caregiving is worth our time. Read below for the details. Please be sure to tell them that you were referred by The Alzheimer Spouse Website, so we can track how many from here participated. The direct link is under the Breaking News section. Thank you.
joang
DoNow Research, a nationwide marketing research firm, would like your help with a nationwide online study of non-professional caregivers of mild-moderate Alzheimer’s patients. As a caregiver of a loved one with Alzheimer’s, you know better than anyone that Alzheimer’s affects more than the just the person who has it; Alzheimer’s also affects the people who love and care for them – people like you. In this study, we seek to understand your experiences caring for a loved one with Alzheimer’s disease – how does your loved one’s Alzheimer’s affect your life? What are your concerns and needs as a caregiver? What is your relationship like with your loved one? What are your experiences with medical professionals and with treating your loved one’s Alzheimer’s? Your opinions and experiences will help researchers in developing better products to benefit Alzheimer’s patients and their families in the future. All who qualify and participate in the 45-minute online survey will receive $50. If you are interested in participating, please call Jeff at 772-232-9295 or go to http://donowresearch.com/welcome.cgi?RL=TROPYELOMDTM to go over a few quick qualifying questions for this important research study or email your contact info to jeff@donowResearch.com and we will call you to discuss the project. The online study is quickly filling up and will only be available for a very limited time; so please respond today.
I filled out the form on-line (which I could barely read). It has an unusually dark background so it's hard to read. Got an e-mail from them that they would either e-mail me or call with more questions.
I'm sitting here at home today with a mild case of strep throat, and I also filled out the form. I agree, Vickie, the color choice was odd. I finished the questionaire, and not 5 minutes later got a call from Jeff, who is spearheading the project. He was delightful, asked me several more questions, and I am going to participate in the survey. As I explained to Jeff, I'm not in any way doing this for the 50 bucks. For the same reason that we drive 2 hours every other month to Los Angeles, DH is participating in a study at the Memory Clinic at the VA that has to do with Viet Nam era vets and EOAD. If it can help anyone in anyway, why not?
Hi all, I took the paid caregiver survey through Donow Research. It took about 45 mins to an hour, but I urge those of you dealing with mild to moderate Alzheimers to participate, too. It never ceases to amaze me when answering these types of questions how much I actually learn about myself, my DH and this disease. It is obviously being done in conjunction with a new drug (so probably a drug company) but that's who would do this research. Since my DH was diagnosed, I've decided to be proactive in the research area of the disease, as there must be progress made in dealing with Alzheimer's. This is the second survey I've participated in (although for different outcomes) and I told you all about the study we are participating in at the VA regarding Viet Nam era Vets and EOAD. I urge those of you who can, be proactive too! It's simple!
Oops, I almost forgot. Jeff put up a new link to get you started, but I don't see it here. It is: http://donowresearch.com/welcome.cgi?RL=TROPYELOMDTM Thanks!
Jeff is really nice. I qualify so will do the survey tonight or tomorrow. He said they need lots of caregivers, so if you know someone not on the site, let them know. There is a minimum/max age for the AD person - think it is 60 - 85. Not sure on the top one. If enough people with spouse under 60 call, he may try to get them to change the age span.
Excellent, Charlotte! Be prepared to spend an hour, but it may be as revealing to you as it was to me. Sometimes when you see your answers to questions in writing in front of you, it made me go "wow". When I was talking to Jeff, he had no idea hat people in their 40's and 50's were being diagnosed. This is how information gets shared and put out there. Post back and let me know what you thought of the survey, I look forward to hearing from you!
I put the new link on the home page announcement last night. I also changed it in the initial post above. I hope everyone reading this will participate. It will help get the word out about Alzheimer's Disease and the amount of caregiving required. Be sure to tell whoever participates that they heard about it through this website.
I signed up last night and immediately received the 1st email. Today, I was told that I was not selected because my demographics and answers did not fit into the research program. I checked YES on almost everything. I wonder if they are looking for YOUNGER victims (dh is 81).. Otherwise, he is totally AD,.. Can't imagine why we didn't "fit" their requirements. Oh well.
I guess I am surprised that someone who is conducting a survey on caregivers would make this statement to Diane V "When she was talking to Jeff, he had no idea that people in their 40's and 50's were being diagnosed." It just shows how the public still views dementia as a old person's disease. Very Sad!
Joan, did they give you much info re: the kind of caregivers they were looking for? Not old, not young.. you mentioned "early onset/mild to moderate. There was one question re: Actual Diagnosis of ALZHEIMER's Disease.. Many doctors don't give out ACTUAL diagnosis of AD when they are in Stage 2/3. Or that was our case, ...they looked at effect of multiple TIA's - or: the after effect of two severe hemorrhages from an aneurism requiring multiple tranfusions, OR: possible Parkinson's Dementia, ..etc.etc. By the time they completed the 2nd Neuropsychological exams, - blood work - PET Scans, and the rest...and compared them to the first ones, he was in Stage 4-5. I'm sure it was the same for all of you. The above time span was about 3 years total...to the point of actual diagnosis 4 years ago. Researchers.... you may be looking for a rare bird...that was diagnosed (with Alz.) at Stage 2/3 .
I think I want to become the poster boy for eoad, sort of the example for the "Alzheimer's for dummies" book. Wrong diagnosis, wrong ages, wrong caregiving, wrong attitude, wrong medications, wrong tests, wrong doctors, wrong friends, and right children!!!!!!!!!!!!!!!!!!!!!!
I haven't spoken to Jeff yet, so I don't know the exact criteria. I won't talk to him until I return home next week. He did e-mail me to say that 9 people from this site qualified so far. I don't even know if I qualify to take the survey. If you want to participate, but don't want to fill out the form on the computer, you can call him.772-232-9295
this is what Jeff told me: the first email is generic. He will call those who fit the criteria. I do know the lower age limit is 60, and think the higher was 85 (could be wrong). He said if someone gets a rejection to phone him and talk with him. I do know if the AD spouse is under 60 they do not qualify. So do not be afraid to call him. He is on the east coast - it was 11pm his time when we spoke last night.
My impressions: he does numerous studies for various organizations. He is sort of the middle man. He does not know why they picked the age bracket they did. He feels it should include the younger ones, too. IF there are enough that apply, he would call whoever is doing the study and ask if they can include the younger ones. He told me they usually just have the first questionnaire so short (like was first posted) so he can personally talk to people and weed out the fakes. People will actually pretend they have or are caregivers of someone with a disease to get the money. I was the second one he spoke with and said he has enjoyed the first two and if the rest of us are as good, would prefer talking to all of us that participate.
I said I was interested in his project, and simply curious about what disqualified us. Two things. One question re: ability to speak. Sometimes!! Foster cannot remember words or names of people. I checked he DOES have trouble. (That would disqualify me) I said he CAN speak and does speak, but on occasion he has trouble remembering a specific word or name. OH! HE SAID...that's OK then. Second point was re: dilusions, seeing things that aren't there!...He had this when he was coming out of the anesthesia...and for about a month afterward...and the latter was due to the drugs the doctor gave him for pain. When he stopped the drug, the delusions ceased. OH, HE SAID, ... that's OK then. He said he needed to re-do his survey to say "Do they have delusions when he is not on specific medications etc.
So, we fit the criteria and he is going to move me along to the next questionaire. I may regret I called, but any thing we can do to help others understand this disease is worth it. For EXAMPLE, he didn't realize the effect different drugs had on our LO's. Or how difficulty in speaking begins with single words...then moves along to total inability to speak. Phases...it's not black and white. (As we all say, Alzheimer's is not JUST losing one's memory!!!!) Jeff proved once again, that most people don't understand this disease, not even Research people!) (nancyb)
After I completed the short questioner this morning, Jeff called me and asked me to clarify one of my answers. He then said that I qualified and e-mailed me the link for the full survey. It took me about one hour to complete.
Nancy B, I don't think you'll regret it. Taking part in this may help someone down the line. In all fairness, Jeff doesn't claim to have any knowledge of AD. He owns a Market Research Company, and his client is the one who developed the survey. If it is for a new drug, I guess the criteria would be rather specific, and our loved one's in moderate to severe AD may not be able to reap the benefit of their particular drug. Just as a silly fyi, Jeff did tell me that the part of the questionaire that asked if your loved one has (fill in the blank) disease(s), some of them were made up by him, and they aren't real diseases. Anyone who answered yes to any of those was dis-qualified.
Diane V., your last post reminded me of my daughter's college apartment mate. She had medicines on every shelf in the door of the refrigerator - and was sooooo proud. She was, and IS STILL a hypocondriac. She reads about a new disease and immediately believes she has it. One night a few years ago she called my daughter to meet her in the Emergency Room of the local hospital, because she had called 911. During triage, the doctor asked if she had this pain (yes) that pain (yes) shortness of breath (yes) chest pains (yes) up to and including difficulty swallowing. Her reply was "NOT YET!".... DH used to comment that some people truly enjoy poor health. She is one who does! She finally admitted to the doc that she was exhausted and just wanted to be admitted for a day or two to get some rest from her children.
I googled the research company and it seems they are a survey/market research type entity for any and all so it's understandable that Jeff would not have much knowledge of AD. Good that he was willing to listen and learn.
There are question at the end about 'Product X'. The description of it sounds like the BAP infusion. I wonder if the drug company is trying to get a general feel as to how people will react if the drug gets approved even with the potential side effects.
I’m always amazed at what I learn (or maybe finally admit) about our situation when I take one of these surveys. A couple of times while I was taking this one, I just had to stop and think about what it had shown me. Sometimes things sneak up on me very gradually, and I don’t realize what a big change it is until I compare where we are to what some of the answers to the questions could have been. A couple of the pages of questions on this survey I printed out to answer again in six months or so, for another reality check.
Hoooo Boy! Just finished the survey. I took longer than the 45 minutes..more like 1 hour 15 minutes, but I was interrupted several times. I also took extra time reading the questions carefully. It's an in depth survey, wish there were places where I could 'explain' my answer... Somethings are not just yes or no. I hope our input makes a difference. If any of you get to participate, make sure you have a designated free hour before you begin.
Glad I was able to participate. If any of you were declined, try calling Jeff. Chances are, one of your earlier answers just needs to be clarified.
The survey is an eye opener. I did email Jeff about a few questions needed more options. One was insurance - we don't have any but he gets medical thru the VA. Would that be considered an HMO? Don't think so. A couple others I can't remember. But, i did realize none of the doctors have made any attempt to educate me on this disease, nor recommend options or studies in progress. Last neuro visit in July, when I asked her, she would not recommend any. Got the idea she doesn't see any that are going on at OHSU as being hopeful but couldn't say anything negative since her boss is the head of the group that does them. And, no one has ask how I am doing. All my education and knowledge I have has been learned from this site and other internet sites.
Charlotte, YOU are so correct. I realized that his neuro has never taken the time to tell me what to expect, or what I could do to help him at all. Never a discussion about options or studies. I heard from this site about studies and when I asked them, they said they had determined he was not a candidate. PERIOD. No explanation as to why.
I also said that all I knew I learned from other Spouses and caregivers as well as the internet and books. NOTHING from the doctor.
That really makes me realize how we're just a chart, not people, to her.
Last time we went to see the Neuro I had asked the assistent whether I could talk to him alone first (this had never happened) and after consulting with the doctor she said it would be all right if dh would be OK in the waiting room for a while. I can understand that this might be an issue for them. So I was reporting to him all my info on dh's progress and also talking about how much better things were going since I had been using the approach outlined in "Learning to Speak A". He was taking notes directly into the computer on all this. All of a sudden he said "But haven't you ever talked with our care consultant?" No, I had never heard that such a person existed. So he got hold of her and I was shunted over to her immediately while he talked to dh. So I have no idea what happened during the consult with dh, except what he said: they asked him some hard questions, so I suppose they gave him the test again. When I got through dh was waiting impatiently in the waiting room. It was moderately useful to talk to the care consultant (and to know that she is there). At the time I had not found this site yet, but had been doing a lot of reading, and I did have some questions. She turned out to also be the leader of an AD support group for early onset in that part of Rotterdam, and she said I was welcome so I went there once. I won't go back, though, it was not worth the extra travel.
joang, I filled out the first form, and then got the email to take the survey, but dummy me, I couldn't find where to say this site referred me, but it did. Anyway, thanks for the info. Linda
I just got information about a survey ($50) from ORCAS - is this the same one - I did sign up for the other but hadn't heard from "Jeff" in recent days.. This one at the end asked if I would find an ONLINE course on how to manage stress useful. I said yes.
No, Briegull, I got an invitation to this one too; just went on-line, completed the survey and submitted it and they are sending the $50.00. Doesn't take long at all to complete it. Go for it.
I received the invitations too. I, too, completed it. They are the same company that the other survey was set up with, so that may be how they received our email. If I am not wrong, Kathi went to a caregiver management class at OHSU. Maybe they are trying to improve it or find a way to make it more helpful. I did comment that if the class were targeted for dementia caregivers I would be more likely to consider taking it.
I didn't sign up for the one from Jeff, but ORCAS invited me to theirs and I did it this afternoon. My impression from the original description of the one fom Jeff was they wanted caregivers dealing with Alz in early to mid stages, and my DH's Dx is Vascular Dementia and he is at or near the far end of stage 6. The ORCAS one today asked specifically what kind of Dementia I was caregiving. Definitely worth the time.
I, too, submitted the answers to the ORcAS survey. It was less intensive as Jeff's. I wrote that I could NOT attend weekly 2 hour meetings (plus drive time) but would be interested in on line program.
I also submitted the ORCAS survey. I'm thinking of a new career - filling out surveys. Fifty dollars per hour isn't bad pay!
Seriously, I hope some of this research helps someone, but like Nancy, I don't know how I would attend the meetings or if they would really be helpful.
Hello Everyone... I am VERY new here.. this is my first posting and since I saw PAID survey I went straight to it... lol... I can always use a few extra dollars. I hope I am one of the ones who get picked.. this is a very nice site for a person to meet others and carry on conversations about what they do to help their Loved one. Thanks for such great info! I am off to look at other posts... I read one from Sunshyne about some oil and want to read up on that... nice to meet you ALL!