JOAN’S BLOG – WED/THUR, APRIL 28/29, 2010 – YOUNG ONSET DEMENTIA – STARTING YOUR OWN SUPPORT GROUP

Since the inception of this website in July 2007, we have heard from hundreds of spousal caregivers concerning their spouses’ diagnosis of  Early Onset Alzheimer’s Disease (EOAD), defined as Alzheimer’s Disease afflicting those under age 65. I have offered information, education, videos, guides, and other website links in an effort to help EOAD caregiving spouses (See left side for EOAD resources). I have been to Washington DC three times to help educate legislators about the existence of EOAD. Through this website, I have tried to educate healthcare professionals about the existence of EOAD. Due to efforts of EOAD families like Laura and Jay Jones, the Social Security Administration finally recognized EOAD and placed it on the Compassionate Allowance List for a faster tract to SSDI.

We are making tiny inroads into raising awareness that Alzheimer’s Disease is not “just your grandparent’s disease”, but the fact remains that all caregiver support groups, PWD (person with dementia) support groups, and activity centers for PWD, are designed for and filled with those in their 70’s, 80’s, and 90’s. By the time a PWD is ready for Daycare activity centers, it probably does not matter if their activity friends are a generation or two older than them, and I have found, through my message boards and my face to face support group, that ALL age caregivers can benefit from one another’s experience. However, caregivers who are in their 40’s, 50’s, and early 60’s, particularly spousal caregivers who are still working, and may still be raising children at home, have needs and issues that are different from retiree caregivers. They also are not able to take off work to attend morning caregiver meetings. The simple fact of the matter is that there are no support groups for EOAD caregivers, so if you want one, you will have to do as Alice did in Lisa Genova’s bestseller, Still Alice – start your own.

Jim, our member who is about to embark on starting a support group for Young Onset caregivers asked how to begin. This can be as simple or as complicated as you want to make it. My suggestion, based upon experience, is to keep it focused and simple.

1. You will need to be in charge. (Spoken like a true control freak) These groups run best when there is someone who takes the lead, plans the method of engagement, and keeps everyone on track.

2.  Decide in advance the purpose of the group. Do not make it too broad. My suggestions would be support and information.

3. Get the word out. Start with one other person you know who is a Young Onset caregiver; put an ad in the local paper; leave flyers around your doctors’ office; tell your doctor about it, and ask him to spread the word. You may start with 3 people. That’s okay. Word will spread.

4.  When you have people willing to come, agree on a time and day. Early evening or Saturday may be best for those who work. Twice a month seems to work well.

5. A few weeks BEFORE you start, make a list of your own concerns, questions, issues, related to being a Young Onset Caregiver. 

6. At the first meeting, make it clear that the purpose of the group is to provide one another support (venting, crying, and validating each other’s feelings allowed), and to find information for one another. CONFIDENTIALITY IS A MUST in support meetings. Everyone must understand that what is said in the room stays in the room and is not to be discussed outside of the meeting with anyone.

7. Offer your list of concerns from #5, and ask others to add to it.

8.You can divide the group time into “support” time and “information” time. For example, if “apply for SSDI” is one of the questions, someone can research that for the next meeting, and bring the information at that time, and that would take up the “information” portion of the meeting. 30 minutes for information and 60 minutes for support. 90 minutes total.

9.OR you can have one of the monthly meetings for support and one of the meetings for information. I prefer #8, but it is up to you and your members. 

10. If you want to have a speaker, as Jim suggested, you can choose one of the topics from list #5, and ask doctors, nurses, social workers, psychologists, - everyone has contacts, if they would like to speak on a particular topic. As I mentioned Tuesday on the message boards, I will have DVD’s available soon for my communication workshop, which could be played at a meeting.

11. Eventually, you may be able to do as we did in our support group – provide activities for your loved one with dementia. We have a group of guys who are still able to play simple games, so every Monday, 3-6 of them get together at someone’s house to play dominoes and eat junk. They love their time together and look forward to it. Once a month, we have arranged for a van and supervision – they go on an outing to a place that interests them. Our PWD’s just happen to be all men, so they do “men stuff”. They loved the Navy Seal Museum, the toy train museum, and the fishing trip. Next month, they are going to a car museum.  

I feel that one of the most important assets of a support group is in validation. Finding out that you are not the only one dealing with a particular problem, that other’s share your trials, is a stress reliever in itself.

My motto is – If you want something done, do it yourself. If I had not adhered to that philosophy, this website would not exist. So for those of you who are desperate for a face to face Young Onset Support Group – GO FOR IT. If you have any questions, please feel free to e-mail me at joan@thealzheimerspouse.com

Please post comments under the existing Message Board Topic: For those of you in your 40's or 50's, how are you coping with EOD...

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The Alzheimer Spouse LLC
2010 All Rights Reserved
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