Feb 212014
 

Volunteers – both with and without Alzheimer’s disease – are needed to participate in actively enrolling clinical trials about Alzheimer’s and related dementias. Recruiting and retaining trial participants is one of the greatest obstacles to developing the next generation of  treatments and possibly future cures for Alzheimer’s and other dementias.

TrialMatch® is a free matching service that connects individuals with Alzheimer’s and other dementias, caregivers, healthy volunteers and physicians with current clinical studies. With a database of 130+ Alzheimer’s clinical trials, including both pharmacological (drug) and non-pharmacological (non-drug) studies being conducted across the country, TrialMatch is a unique opportunity to make a difference in your life and the life of others with Alzheimer’s disease.

The Alzheimer’s Association spoke with TrialMatch user Wanda Young regarding the benefits of her participation in these clinical studies. Wanda is caregiver for her husband, mother and brother, all of which have forms of dementia.  She is participating in clinical trials as a healthy volunteer.

Wanda initially called the Alzheimer’s Association to receive information about brain donation and was told about TrialMatch. “I Cwas interested in the opportunity because I wanted to learn; I’m always trying to learn more. I’m actually taking a psychology course right now, studying the brain. My kids think I’m a bit of a geek, always trying to absorb the most I can about a subject… Education is the key to everything.”

“TrialMatch allowed me to plan my days as a caregiver better. It helped me take a look at myself and how I was coping, and how I could better care for my loved ones. TrialMatch prepared me for what to expect and how to respond as my family members progress with their various dementias. The TrialMatch experiences allow me to think further beyond today and into the future.”

Wanda says that she saw the TrialMatch process not only as an outlet, but as a helpful planning tool that allowed her to plan major life decisions. “My time at the computer is my time alone and my time away from everything else I am experiencing. Using the computer on my own schedule is an easy way to receive new information. The studies I participated in helped me write my advance directive and allowed me to look at my own life and health. I also received tips for managing the medications of my family members, as well as helpful information about daily toiletry, tactful ways to redirect, travel to doctor appointments and so many helpful resources for each of them (my husband, mother and now my brother.) These are not easy tasks. They take time to complete, and only someone in my situation knows what it is like.”

Whether you are a caregiver, someone with Alzheimer’s or other form of dementia, or even a loved one of a caregiver or person with dementia, you are needed for future research. “I wish more physicians knew about TrialMatch and could tell their patients and their families about it. I used to have my own business; needless to say, my life is very different from what it used to be. Caregiving takes a major hit on your self-esteem. As a caregiver, I have gained a lot of weight due to the stressors in my life.  Without a support group or outside help, you can begin to feel like a non-entity, like you don’t exist. Thankfully I have been able to join a support group and have participated in groups at the Alzheimer’s Association to help with these feelings.”

Wanda recognizes that the more that she learns, the more she can change her life and the lives of others. TrialMatch educates caregivers and offers researchers valuable information only caregivers and those with Alzheimer’s  and other dementias can provide. “I believe I have become an advocate,” Wanda says. “I read, I experience, I learn, and I take what I know back to the nursing home to help those in need. I share what I have learned with the staff, other caregivers, the residents and their family members. You don’t feel so far-removed from researchers when you are able to participate in a trial. I felt as though someone heard me, and that in itself is empowering. TrialMatch has been a way to de-stress. Being a caregiver is a full-time job. People don’t realize how difficult it is. It is important that caregivers have a voice.  I thank TrialMatch for giving me this platform.”

Ultimately, the goal is always the same. “The TrialMatch studies help caregivers cope with the difficult task of taking care of our loved ones. You feel less alone, and more educated. You feel like someone cares – and understands. Ultimately, the reason anyone should participate is to get us closer to a cure. The goal is always to find a cure.”

 

Wanda Young has been married to her husband Lou, a former teacher, mentor and coach for nearly 30 years. They have two wonderful sons. Wanda participated in the Medications Assistance study and the Relationship between Chronic Stressors and Eating Behaviors in Dementia Family Caregivers study through the Alzheimer’s Association’s TrialMatch® program. She is the primary caregiver for her husband, her mother and her brother.FOTFE12_A

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  39 Responses to “A Caregiver’s Decision to Participate in Clinical Trials”

  1. Is there a new drug trial for alzheimer's starting up soon? What is the name of the Drug co. and the drug and how does it work with the brain?

  2. How do I sign up for the study. My mother has alzheimer. Please let me know how to participate. Thanks, Irene

  3. I would like to sign up and participate in this study. And have support from ones that understand. I am the caregiver of my dad, who is 88.

  4. I'm a caregiver and would like to particate

  5. My husvand has FTD known as frontotemporal dementia. He was diagnosed two years ago. I tried to care for him at
    home but it was unbearable and it was affecting my health. I now have him in a skilled home where some people have
    Alzheimer's and some do not. He is getting the proper care he needs but the cost for each month is out of site. We are
    using monies from an IRA and when that runs out what do I do.??? It is deplorable that we cannot get some financial
    assistance. I go to a support group but nothing seems to get done. We just talk with no action being taken.
    I need to know what other people are doing to pay expenses.

    • Mary Ann- You can find assistance and tips here: http://www.alz.org/care/alzheimers-dementia-commo… and you can also call the Alzheimer's Association 24/7 helpline at 1.800.272.3900.

    • You may call dept of aging in your area and ask for name of residential assistant living that specializes in residents with dementia they are more personal, licensed and they are cheaper

    • Hi Mary Ann:

      Unless you are just about destitute, or very wealthy and can afford to pay out of pocket, I was told, and I learned myself, there is very little to no help for the middle class. Alarming, since the middle class would most likely be the largest in numbers for both caregivers and dementia patients, and it is this class that donates, contributes, pays taxes for the less fortunate to get the help they need, but this help is out of site for the middle class. And even worse? No one addresses this issue.

    • There is a way to help out, possibly, of depleting your IRA. I am a retired military member, 26 years, and was advised by my attorrney to have a Irrevocable Trust. By doing this your assets is in your Trustee name but still your many and set up as to how to you He or She will take care of it. This way the state or goverment can't touch it. Find an atttoreny who specialises in this and ask for a briefing on this. It may help you and not lose every penny you have and some for the kids. This way the county, state or GOV with your attorney will support a lest some if not all. Attorrney's are not cheap but a conciltion should not cost anything. This is the road I went and don't regret. I am a Cargiver of over 3years.

  6. My wife has moderate to severe Alzheimer's. I would love to get her into a trial drug program where I knew she was getting a new drug. I would love to know about new promising drugs, especially ones that help and not keep things from progressing. . Thanks.

    Ron Bliss
    Maize, Kansas

  7. I am a care giver to an alzheimer patient (I live in the home). I also carry another alzheimer patient to church on Sunday. Please let me know how to participate. Thank you for your help. Linda

  8. I used to be an advocate for abused women and had to stop working to take care of my parent. I also feel like a non-entity and I don't exist. Idont know how I went from a strong women to this and it hurts

    • Carlene,

      The work you do is very important and can be very stressful. We have many resources at alz.org/care/alzheimers-dementia-healthy-caregiver.asp and you can speak to someone for support at our 24/7 helpline: 800.272.3900. Please feel free to reach out to speak to someone.

    • much as I hate to hear someone else is feeling as low and bad as me….. it means I may not be crazy and am not alone. . my husband and I have 10 yr old twins. My Mom has been with us since Jan 2011. She is probably stage 5 now. Today she came to me and said I need my Mother. She was proud that she called me mother.
      I though I would draw the line at bathroom assistance, then it was, she still knows who I am. Well, we are crossing that one now. I think we did a while back, I just didn't want to admit it, she always knows my name, just not who I am.

      I so feel that I don't count unless being counted on take care of it.

      • Hi Lisa…Thank you for reaching out. If you would like to speak to a professional, you can call our 24/7 helpline at 800.272.3900.

  9. I truly appkaud Wanda. I, myself, and our now deceased daughter tried taking care of my husband. After Chris's passing I tried to care formy husband but he contracted Cdef and was hospitalized, it was at that time I had to make the dificult decision to place him in a nursing home. I made the mistake of bring him home and even with help could not keep him safe from himself and had to once again place him in another nursing home. It's so hard to visit him because he plays me against staff and I never know if he is being truthful with me so I call staff to alert them to possibility he may be planning on leaving and he no longer knows how to get around town by

  10. I too have quit work to stay home and care for my mother-in-law who has Alzheimer's. In 1999-2000 I was also a primary caregiver for my Dad who passed in a quick 6 months from lung cancer. This is almost debilitating for the caregiver. I am only 44 and never dreamed we would be losing our parents this fast. Giving up a career is one thing, but family members are devastating.

    • I have been a caregiver for my dad for 2 yrs now. I am 50 and I feel like I"m falling apart..I know there is help out there but I also work full time and have a caregiver when I am at work. There is no financial support out there for people who are middle class. I put my dad in a home and it was $5000 a month. They did nothing for him. Just glorified babysitters. He is back home now. I am so physically and mentally drained. Sometimes I can't even think right. My daughters are upset with me because they feel he should be in a home. How do I make my daughters understand that I have my dad's best interest at heart and that with help from hospice. I made the right decision? Thanks for a place to vent

  11. My mother had a doctors visit today regarding her dementia we've noticed in her behavior recently. He suggested to begin the drug Namenda. Anyone out there a caring for their parent with dementia taking Namenda that can share some insights on the affects of the drug?

    Thank you

    • My father now deceased, Took Namenda with aricept. Believe me it worked wonders. He was able to call his family members by there names for the first time in several years.

    • My wife has been on Namenda for about 3 years, her progression is slow-perhaps as a result of Namenda. She is now in step 7 of Alzheimers and Namenda is for mild to moderate dementia, so it is no longer effective, but her doctor said to stop giving it to her would cause her to become very ill.

  12. What are some of the basic things family and friends should know about a person with Dementia?

  13. My uncle was diagnoised with dementia about 7 years ago. He is 78 years old. I've been staying with him and my aunt since September 2015. He has been so sweet but slowly fading more and more. He can't tell you where he lives or his phone number. He's now to the point of not wanting to eat. It's so heartbreaking to see him getting worse. You can tell him if he doesn't eat he will die but it doesn't register. If we try to feed him, he spits it out. He and my aunt have been married 56 years and she has stage 4 kidney cancer and only one lung left.
    I am emotionally drained, as my 96 year old grandfather lives with them also. He has alzhiemers. I've worked with alzhiemers and dementia patients for years but never at end stage and seeing one slowly die. All three of these people need help and I'm the only one who helps. My aunt is just physically not able to help much. She barely eats herself. It breaks my heart and don't know what else I can do to help. Thanks for allowing me to say something.

    • Hi Dianna, I have been caring for my boyfriends Mum for 5 years ago, at the point when she could no longer look after herself and so we moved in with her to look after her. It hasn't been easy, but I have learnt so much about her illness (she has Vascular dementia and Alzheimer's ) and we've also fought to get help as carers, because we need help too sometimes. You need to take care of yourself because you're no use to your loved ones if you make yourself I'll. If you need any help or advice on what support you could be entitled to, please don't hesitate to contact me, I'm happy to share any knowledge I have and would love to help if I can. Take care, Sarah x

    • Hi Dianna, You are doing way too much caring for three people. It's hard enough to care for one. If you haven't already reached out to the Department for the Aging in your area, you need to do that and see what type of help is available. Respite or something. You may also want to reach out to local churches in the area to see if they have any volunteer programs. I don't know what state you're in , but there are programs through community Medicaid in some states where you can get in-home health care aides.

  14. I recently moved to CO to care for my 92 year old Mother with Alzheimer's. She has had the disease for about 2 years….the doctor says it is slow progression. When I would visit, I could see small changes, but when she told me on the phone one day that she had walked out of her apt. and didn't know where she went, but she was now back home, that really concerned me. My brother has been living with her until I arrived, but he works full time. He has been monitoring her medicine, buying groceries, preparing some meals, but making sure food is in clear view in the fridge. She makes herself sandwiches and eats nuts and a lot of fruit like grapes, apples, and oranges.
    I've given up working full time, and thought I'd look for part-time work, but now I'm not sure that is going to work given the needs I feel my Mom needs for her safety and well being.
    Is there care giver training that one can take or other programs that qualify family care givers living with the patient to receive financial consideration as a care giver?

  15. Where can this trialMatch be found in the Rio Grand Valley of Texas under the supervision of "The South Texas Chapter (That doesn't exist)

  16. Where can trial Match be found in the Inland Empire, Chino, Chino Hills, Claremont, San Bernardino, LomA linda, etc.?

  17. I have been caring for my husband for a little over 2 yrs now with traumatic dementia, caused from an accident when he was age 16 with no problems until about 3 yrs ago. He began having little fender benders but while he had just found out he had glaucoma after never even wearing glasses, we thought this caused his auto accidents. But he stopped driving. He had scheduled glaucoma surgery and in the meantime had a Urinary track blockage and had to have surgery for it. The glaucoma surgery was 2 wks later. No one said not to go ahead with it. They gave him proponoyl both times as anesthesia. So this jump started his demntia. Since then it has worsened fast. He requires 24 hour care. That is me. The big shame to our country is that there is no assistance to caregivers through Medicare. If he goes in hospital for a fall or UTI they will pay for 3 wks of Home Health care which amounts to little: a LVN comes out once a week to check his vitals, an aid comes twice a week to help with bathing or shaving. So both of these people are in the house less than 45 minutes. There is nothing else. I average 2 hours sleep a night because my husband walks the floor all night long. Any medications for sleep would allow him to fall more so we cannot use that. He is still very strong. I often cannot change his pullup diapers because he won't let me. I am having such a hard time and there is no help. He is in very good health. Mine is going down all the time, blood pressure fluctuating all the time. I was previously very healthy and atheletic. I ran my own business and now cannot do that any more. Friends have abandoned us. They are afraid of seeing him this way. Even my sister who lives closeby does not ever come by to check on us or anything else. I feel so cut off from the world. I cannot even watch tv much as he wanders in the house and I must keep on checking on him. I do not want to place him in a nursing home. Memory Care at the nursing home is about $ 6000 up to $ 15,000 a month. Please write to your members of Congress to ask them to expand the Medicare rules to include custodial care. All dementia patients should have continuing home health care with caregiver assistance.

  18. Hi, I'm Ruthann Harnett, daughter of my 861/2yr. Mom, that has been diagnosed with Signs of Dementia 3-4mnths. ago. I have worked with Elder Care many years ago, as I had a traumatic brain injury from a car accident 37yrs. ago and that was
    my rehab. to learn new material and Remember, Act accordingly to it. I want to do anything for Mom, but some how it seems different when its your mother. I am so Glad that there is Much Help for this Disease, but I will Always Trust God to be the Physician, as He has done a Miraculous Healing for me, I Leave it all to HIM.

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