Connect with other care partners and others with Lewy Body Dementia

Support Is Not An Option. It’s Essential!

Whether you are a carer of a loved one with Lewy Body Dementia or someone with the condition, there is help available. Don’t delay — get connected immediately. The four supports that have been most profound and effective for me have been:

  • Online Support Groups (FaceBook groups or “online chat”)
  • In-person Support Groups (discussion groups of people in the same situation with Lewy)
  • Telephone support (great on its own, even more essential when online options are not viable)
  • Mindfulness (meditation and practicing acceptance for handling the stress).
Online Support Groups — online round-the-clock, worldwide.

I participated in an in-person support group in Toronto, and despite that being absolutely great, online groups surpassed it for me with their vast membership, daily “affirmations,” broad knowledge — and almost-instant feedback on every topic, with lots of participation from every part of the world, at any time of day. There is nothing else comparable. It’s an avenue I did not expect to be beneficial, but is by far the best resource I have ever found.

Although I am no “fan” of Facebook, the best 24-7 online support groups I know of are there. The members are real people, carers in the thick of things. The information can be raw and emotional. Nevertheless, I have found it to be an incredible and unbeatable source of information, camaraderie and compassion.

To do this, you will need to have a typical Facebook profile, and the group administrator has to accept you into the group. It is not as intimidating as you might think, and you can join and just see what people are saying, if you prefer: you do not have to actively participate, although that is the best part, in my view. I highly recommend joining.

I suggest you start with this group first: Lewy Body Dementia Carers: it has the largest and most active membership that I’ve found so far. It may be the only one you’ll need. It is also a “closed” group: only members of the group can see what’s written. This makes it more private than a so-called public group on FaceBook. Two other excellent FaceBook groups I actively participate in are the Lewy Body Dementia Support Group, and Forget Me Not — Lewy Body Dementia. One that is for carers exclusively, but which has many veterans is the RAW Side of Dementia Caring. Keep in mind, however, that anything on social media has the potential to be seen by others, so exercise good judgement when posting — you never know for certain who may see it.

There is also a system for online “chat” Lewy Body Dementia Association . Personally, I don’t actually use this because I was never granted approval to participate, for some reason, despite repeated attempts. I suspect that was because my requests slipped through the cracks or from a staff shortage. I know people who use it and it has been critical.

For spouses, the LBD Caring Spouses Yahoo group run by Rosemary Gerber-Dawson, Jeff Maruna and Pat Snyder should be explored.  Since so many care partners are married to the person with LBD, this is an excellent resource. It is also a members only site, so you have to sign up to view or participate in the discussions.

Face-to-face Support Groups.

I have learned an incredible amount of information, have broadened my understanding of the enormous variations of the condition and differences in progression by participating in a Lewy Body Dementia support group.

More than anything, I have learned how extremely compassionate and caring people are and what great strength they have found within themselves. It has been a very humbling, and inspiring experience and continues to motivate me. The Lewy Body Dementia Association has a support-group-locator tool for North America.

I joined my group by contacting my local Alzheimer’s Association. If you live in a smaller centre or a rural area, the online groups might be easier to access.

Don’t delay in making contact — face-to-face support groups typically have long waiting lists, the sooner you contact them, the sooner you’ll get that benefit.

There is a growing availability of “virtual” support groups as well, where it’s by teleconference using computers or telephones, which are more viable in less populated areas. The technology is rapidly improving, and there is increased interest and adoption of this method, which has the added benefit of direct connections without having to travel, as this article on carer-teleconferencing discusses.

Telephone Support for Lewy Body Dementia.

The Associations for Lewy Body Dementia has phone support (800-539-9767), as do those for Alzheimer’s and Parkinson’s. Depending on what kind of information you need, each one of those may provide a component of the answer you seek. All are fantastic!


Timothy Hudson

Updated May 6, 2017