Wednesday, October 26, 2011

The Value of Support Groups for Caregivers and Patients

Last year after I was diagnosed with FTD the Alzheimer's Association awarded me a grant so I could attend a Dementia Support Group called, "The Memory Club". The group is made up of individuals who have been diagnosed with various early onset Dementia's. I am the only person in the group with FTD - Frontotemporal Dementia.

A question was asked of me by Sharon Denny the program director of AFTD - The Association for Frontotemporal Degeneration . What is the most valuable thing I learned from Riverstone's "Memory Club".  

I took the question to the talented members of Riverstone's "Memory Club" and the upcoming list is what we thought of.

(I am truly the luckiest person in the world. As I sit here typing in Starbucks, one of the lovely barista's just came by to take my cup to give me a free refill).

Many of the answers listed below can be used in context for both support groups of both caregivers and FTD/Dementia patients.

For me, the most valuable thing I learned is number O:

0.  Find happiness and purpose in life again.
a. Everyone has a right to happiness and purpose in life. 

1.  Make subtle changes and adjustments in your routine to adjust to life with Dementia.
a. You need to learn to keep adapting to the changes made by dementia.

2.  Learning to live with Dementia in a positive way.
a. You need to keep a positive attitude  and work around all obstacles.

3.  A sense of belonging.
a. You are a part of something and feel comfortable with the people and atmosphere.

4.  Expressing our experiences to peers in an effort to minimize our problems.
a. Having others that can relate to your life and you to theres.

5.  You learn you are not alone.
a.  You might be lonely, but your not alone.

6.  Learn you can function with your crazy ways.
a. No one is perfect. Live life and enjoy. Get over things fast and move on.

7.  Life is not over, we can rebuild our lives.
a. You can have a full and wonderful life. Just different than before.

8.  Awareness of Dementia.
a. Be aware and accept the a changes in your life. You can't be happy if you keep fighting for the life you had before Dementia. You need to be aware of yourself and your life to move forward.

9.  Get a 2nd opinion,  don't necessarily trust every doctor you see because they are a doctor.
Listen to medical opinion, but don't disregard your instincts and don't think twice of seeing someone else when it comes to matters of health and wellness.

10.  A friendly, supportive, understanding environment.
a. You can breathe and relax. Better and cheaper than a psychiatrist office.

11.  We are like brother/sister.
a. You can develop new close relationships with others that understand you and you them.

12. Learn how to live, not how to die.
a. Get busy living, never give up.

13.  Dementia is a not a mental illness. Medications for mental illnesses do not necessarily work with Dementia.
a. Be extremely careful of all medications and there side effects.
b. There are no FDA approved drugs for FTD. The UCSF website has a guide to medicines for FTD.
c. Do not take Aricept for FTD.

Being diagnosed with  Dementia is a shock to the system. It's not easy being told to get ready for the end of your life.

You have a progressive terminal illness with no cure. 

You're told to make end of life plans. The only thing you can think of when leaving the doctors office is life is that I have Dementia and I'm going to die.  You are in shock and many people do not get over it. 

Caregivers and loved ones lives change drastically as well. They also have to go through the shock of there loved ones having a terminal illness. 

Support groups will help ease the pain and help both caregiver and Dementia sufferer make necessary changes in lifestyle to create a new life. 

To find a FTD support group for caregivers in your area. Check the AFTD Website for the regional coordinators. 

 The Association for Frontotemporal Dementia

For caregivers of other types of Dementia's and if there is no FTD support group in your are, contact your local Alzheimer's Association.

Those diagnosed with FTD should try one of the Dementia Support Groups. They can find out where these are from the Alzheimer's Association. It was nothing short of a life changer in my case. 

Remember, you get out of it what you put into it.

It will not be the life you once knew, but it can be a life with happiness and purpose.

Dementia is not the end of life, it is just the beginning of a different type of life.

I am looking to start a FTD patient support group in Manhattan. The purpose will be to help us find happiness, purpose and to deal better with having FTD. Please contact me if you are interested.



  1. I like your attitude Howard. When my Mom was diagnosed with Alzheimer's, we tried to keep the same attitude.

    It wasn't a death sentence, it was a change. We adapted to a different life than the one my Mom expected to have.

    But, I can tell you, there was lots of laughter and joy and good times for Mom and me.

    Some of them are described at my website.

    It's nice knowing you, Howard. Take care!

  2. Replies

  3. Very best wishes ~ groups like this are essential.
    A selfhelp group for people with dementia, their carers, families and friends, is being set up in our area of the UK.

  4. That's wonderful. These groups are crucial for people with dementia and there loved ones. I have been involved in different groups with those attending in various stages and types of dementia. Please feel free to contact me if I you need helpful suggestions.


  5. Thankyou Howard.
    Did you know that there is a chat group for people with ftd, or who have symptoms of ftd, on ftd support forum on Tuesdays at 3pm?EST.We are a small group of very supportive netfriends.
    If you contact mermaid (co-ordinator of this chat) on ftdsupportforum, she will give further details, the password for the room etc.

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  7. parkinsons caregivers - The Caregiver Space is a non-profit organization committed to provide help and support for Parkinsons Caregivers


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