Online Support for a Dementia Diagnosis

March 28, 2019

Coming to grips with a family member’s dementia diagnosis can be overwhelming and frightening – and if you are facing it, you’re most certainly not alone. In fact, every 65 seconds, someone in the US is diagnosed with Alzheimer’s – by far the most common cause of dementia – along with many others suffering from vascular dementia and other forms. Whether you choose to focus your efforts as a family caregiver at home or explore the option of memory care facilities, arming yourself with knowledge and a support network will make a difference to your wellbeing and your ability to look after you loved one. There are excellent resources out there to help you get a handle on the disease itself, learn how you can best offer support, and get the help you need to cope with the stresses of being a caregiver.

Getting Oriented

Step one is getting a clear grasp on the disease itself. The Common Sense Guide to Dementia for Clinicians and Caregivers offers a reassuring, practical, and thoughtful approach to the subject. There’s also a wealth of video resources, including this excellent overview that walks through the differences between Alzheimer’s and other causes of dementia. The Alzheimer’s Association is an excellent online resource, offering the most comprehensive range of information on disease basics and the latest scientific research.

Finding Connections and Getting Help

“Caregiving starts as a sprint and turns into a marathon,” says Gail Sheehy, author of Passages in Caregiving: Turning Chaos into Confidence. Whether you’re serving as caregiver or simply concerned for someone you love in memory care facilities, there are a number of excellent online and in-person communities out there for sharing information and getting support. Here are some to check out:

  • The Family Caregiver Alliance is the first community-based nonprofit in the country to support the unique needs of caregivers supporting relatives and loved ones at home. Through online education and support groups, the FCA connects families with helpful information, resources, and connections to help sustain them on the tough caregiving journey.
  • Along with their excellent website, the Alzheimer’s Association hosts ALZConnected, a free online community designed for anyone affected with Alzheimer’s or dementia, including patients themselves; caregivers; family members, and friends. ALZConnected can help you find both online and in-person support groups.
  • The Alzheimer’s Foundation of America offers a wealth of information and support for families and caregivers, including a toll-free help line staffed by licensed social workers and available by phone or Skype.
  • Dementia Care Central hosts its own online information forums and also has put together an excellent list of online support groups available for families affected by Alzheimer’s, Lewy Body dementia, Frontotemporal Degeneration, and other forms of dementia.

Are you aware of any resources not mentioned here? Please share in the comments!

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