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Anyone out there caring for a loved one with fronto-temporal dementia?

 

Question: I would like to chat with caregivers, my age range, 52, who care for a loved one with fronto-temporal dementia.

Dr. Amy: The Association for Frontotemporal Degeneration manages a listing of caregiver support groups in Canada and the USA. And here is a toll free telephone support group for people located anywhere in the United States. This is organized by the University of California, San Francisco. These are two good ways to connect with others in your situation—one in person and one on the telephone. The Alzheimer's Association also offers a message board for caregivers. You might like to post questions and comments here and connect that way.

I think chat rooms are great because they help people talk to others when it's convenient and without having to leave the house. Sharing your struggles, hearing from others about their challenges, and seeing that you are not alone can be a huge relief. Exhaustion, stress, and the endless pile of work can make it sometimes feel that snatching a few minutes to join a chat room or telephone group is all you can manage.

Having said that, I encourage you to reach out for more support and pay extra attention to your own health and well being. Speaking personally, I find physical exercise and making sure I eat a healthy diet helps me cope with stress. As always, if you have not been exercising regularly, talk to your doctor before beginning a new workout routine.

While this is not a chat room, readers often comment on the Ask Dr. Amy questions and answers and start a conversation with others readers.And so I'd love to hear from readers who are caring for a loved one with fronto-temporal dementia: what are you finding most helpful?

I send you strength.

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Thoughts and stories from others
  1. January 29, 2015 at 8:52 am | Posted by Sharon Denny, AFTD Program Director

    Thank you for referring the writer to The Association for Frontotemporal Degeneration (AFTD). People facing this rare, young-onset form of dementia often experience terrible isolation. AFTD is a non-profit whose mission is to improve the quality of life of people affected by FTD and drive research to a cure. We offer an informative website (www.theaftd.org), a HelpLine for anyone with questions about FTD (info@theaftd.org or 866-507-7222), and an array of supports and resources to insure people find the help and support they need. Contact us anytime.

    Reply

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