Katie Klink is a PhD student doing research on Young Onset Alzheimer’s impact on the family. Please read her letter below and help her to better educate healthcare providers. Share this with others who qualify. Someday, you may be the beneficiary of her research. TCV Ed.
Hello, my name is Katie.
I am a distance Nursing PhD student at Rush University in Chicago working on my dissertation research and live in Southeastern Wisconsin.
I am interested in how Alzheimer’s disease affects the family when it occurs with someone in their 40s, 50s, and early 60s.
There is little research or information in the literature about Young Onset Alzheimer’s Disease, or AD that occurs before the age of 65.
I am looking for a small number of Young Onset Alzheimer’s spousal caregivers willing to answer questions about their experiences with the process that led up to diagnosis.
QUALIFICATIONS: You must be less than 70 years old, have a spouse diagnosed with Young Onset AD, and currently or recently have cared for them in your home.
You can choose to answer questions in person, over the phone, or via email.
The more information you share, the more I can include in my publication in hopes to better educate other healthcare providers.
Katie Klink, MSN, RN, CNL
414-559-2101 (cell)
klink14@wi.rr.com
Katie Klink’s GROUP page on FACEBOOK
(Edited slightly. TCV Ed.)
Rebecca and Linda,
First, let me commend you on the strength and determination that it takes to deal with Young Onset Alzheimer’s Disease. Although you may feel defeated at times, you have given both your husband’s an amazing gift and that is your commitment to the best care; whether in your home or at a facility. From my research and interviews with Young Onset caregivers thus far, I have continued to hear a similar pattern in regards to the support out there. In some cases there is no support. In many cases, there is only support for those dealing with AD at older ages and this leaves caregivers like you floundering and feeling very alone.
Since I am located in SE Wisconsin, I have been in touch with those around the Chicago area where a Young Onset support group called “Without Warning” provides the needed respite and support missing. Although I realize this is very far from you, it may be a resource you can share with the local Alzheimer’s Association, Aging Centers, or MD groups to formulate a similar type of group. In the meantime, you may want to continue to use the internet to reach out to others. There is a Facebook group called “Memory Makers” who’s members are all dealing with Young Onset AD. Several of the caregivers I have talked with voiced that being in contact with others who are dealing with similar obstacles in the disease process is a life saver.
Part of my goal as a Nurse and a Phd student, it to help spread the word about this disease and continue to stress the importance of support and resources for those dealing with AD at younger ages. Although a small effort, I hope it helps people like you who are struggling, exhausted, and feel isolated. Remember that there are people out there like you who are dealing with the same frustrations and feelings and connecting with them may be helpful.
I wish you both the best and continued strength. If you would like to participate formally in my research, I would be honored to hear your stories. Feel free to email me: klink14@wi.rr.com
Warmly, Katie
Linda, thank you for sharing. I have alerted Katie about your comment.
Nursing home placement is is the most difficult decision I made as a caregiver.
We need to do a better job of educating people about this disease.
It’s sad you must deal with this on your own.
Please do reach out for online support opportunities.
My husband was diag April 2008 He was 57. I was 47.
I cared for him at home till Dec of 2011. Due to him getting voilence with me and hitting and throwing things. Plus I was at the point I had not slept in four days that I had to make a change and place him in a nursing home. I was the hardest thing I had to ever do. Here in the town we live in there is no support groups for my age. And no help from anybody that is family are friend and even church members. People act like they are scared to come around or they afraid they might get it. Or they say they do not know what to say or do. Well I can tell you if they would just come and visit and talk to him that would be great. I live alone now and it is so hard and heartbreaking. I want my husband back the way he was. Thanks hope this help. God help all of us caregivers.
My husband was diagnosed at he age of 54. We have no children and have been married 26 years. He was a finical adviser until April 2011. I am a RN , I am the practice manager of New York Spine and Wellness Center in Syracuse Ny . There is no support in Syracuse for the spouses of young onset. There is nothing for the the victim. There is day care for but it is geared for the elderly . There are support groups, but again for the elderly, they are at a different stage in their lives. I am now the bread winner and carry all responsibilities. All my friends work – so I get no respite. It will kill us both. I am not saying this to give you a sense of pity on my part, I am very driven and have tried to get help , begged for my doctors to start a support group. No luck. Family do not get watching the slow death of a best friend.
Every equates this disease to the elderly – they do not understand the impact at this age and stage in life.
Thank you, Rebecca for reminding us to focus on younger families walking this difficult road that is the journey walked by our elders.
Your last three sentences speak volumes.
Just in case you didn’t share this with researcher, Katie Klink, I’ll ask her to view your comment here.
Again, thank you for commenting, Rebecca.
Kelly,
I will keep the Caregiver’s Voice updated on my progress and results! Thank you for taking an interest.
Interesting research. I look forward to reading about it. I hope you will post a summary of it here.