Online Message Boards Offer Key Benefits to Constituents

Online message boards offer myriad benefits to constituents in search of support, information and community. Key to the success of a message board is a core group of people that can be relied on to keep conversations moving.

The Alzheimer’s Association, a voluntary health organization dedicated to finding prevention methods, treatments and a cure for Alzheimer’s disease, offers constituents a host of online message boards and chat rooms where they can share their thoughts and experiences, ask colleagues questions, and make friends. The message boards are grouped by topic and include a board for people living with Alzheimer’s disease, a forum for caregivers, a health professional’s forum, a forum for Spanish-speaking constituents, an Alzheimer’s Association news forum, and a board focused on medications/treatments for Alzheimer’s disease, among other things.

Beth Kallmyer, an associate director at the Alzheimer’s Association, says the organization uses software that allows board participants to access chat rooms as well, but adds that chat rooms don’t allow for facilitating discussions and groups, and the message boards have been more successful in developing an online community.

“There’s actually a group of people that are on it every day. They check it and if a new person logs on and poses a question, they will get no fewer than three or four or five — maybe more — responses within 24 hours, generally,” she says. “People welcome them to the boards, they tell them to come back, they give them suggestions. So there really is a community feel to it.”

The level of participation in the message boards varies and is up to each user. Kallmyer says some people participate just by reading the messages, while others are very active, posting to the board every day. For these highly active individuals, she says the message board is their support system, “sort of their family.”

The caregiver forum — mostly made up of family members of people with Alzheimer’s — is the most popular of the organization’s message boards. Kallmyer says the boards offer a number of benefits to participants that in-person support services can’t. They include:

* 24-hour availability. Caregivers, most of whom are pressed for free time, can log in at any time and check the board or ask a question.

* Community. Users can ask questions/bounce ideas off of a bunch of people.

* Anonymity. To register to use the Alzheimer’s Association’s message boards, participants need only supply an e-mail address and set up a password.

* Accessibility. In addition to being available 24/7, message boards don’t require the investment of a block of time, like in-person support groups do. “When you’re at a support group, you get the support when you’re there; it’s an hour and a half, and, typically, it’s every other week or every month. But [the message board] is something they can access every day. Whenever they need it they can get on there and get some help, so it’s really much more accessible than a traditional support group,” Kallmyer says.

The Alzheimer’s Association’s message boards are run out of the organization’s contact center, which is staffed 24 hours a day. In most cases, the boards need minimal moderation; however, Kallmyer says, when message board users register they agree to abide by the organization’s online community guidelines, and if the guidelines are broken — which happens from time to time — moderation is needed.

“Sometimes on the message boards — especially for people that are using it every day — they get irritated with each other and it’s pretty easy to bang out a message when you’re irritated with someone and send it off. So sometimes we do have to moderate that and go in and remind them of the community guidelines,” she says.

Some of the Alzheimer’s Association’s online community guidelines are:

* That users be aware that when they post personal information on a message board it is available to everyone on the board, and so posting personal information is discouraged.

* That users be aware that the Alzheimer’s Association is not responsible for the information — including accuracy of that information — posted on the message boards.

* That derogatory messages, such as those that include profanity, discriminating language, personal attacks or sexually inappropriate comments, will not be tolerated. Posts deemed to be derogatory will be deleted, and repeat offenses could result in the individual being banned from the community.

Kallmyer says organizations interested in offering message boards to constituents first should locate a group of people — perhaps from an already active support group or known active constituents — that can feed the message board and sustain it, because “it doesn’t feel much like a community if there’s not people in there answering the posts and talking to each other and providing information to each other,” she notes.

Beth Kallmyer can be reached via www.alz.org

For a look at the Alzheimer’s Association’s message board offerings, www.alz.org/living_with_alzheimers_message_boards_lwa.asp