Support for Dementia Caregivers: Using Online Support Forums

Dementia caregivers need support from medical experts and other caregivers the same way as the people they look after need treatment. In Part 2 of this feature (read Part 1 here) on support for dementia caregivers, Swapna Kishore of Dementia Care Notes highlights the role online support forums can play.

Caring for someone with dementia often takes years and poses many challenges. In order to do this effectively and with less stress, family caregivers need information and support. As discussed in Part 1, in addition to getting reliable information and answers from experts, caregivers can also benefit from connecting with fellow-caregivers.

Typically, caregivers expect health professionals to provide all answers for any medical condition. But most professionals lack experience in handling dementia challenges 24×7. And relatives and friends who want to help may lack the required personal experience to appreciate the care situation or give effective suggestions. So, listening to the personal care experiences of fellow-caregivers can be very helpful.

Aparna Mittal, Founder and CEO of PatientsEngage, a large online healthcare platform, says, “The knowledge gained by caregivers through experience of handling day-to-day issues of taking care of their loved one and of themselves is just as valuable as medical inputs from healthcare professionals.”

Caregivers can connect with others through face-to-face caregiver meetings and online support forums. Face-to-face caregiver meetings were discussed in Part 1. And though most caregivers in India are unable to attend caregiver meetings, fortunately anyone with Internet access can benefit from online forums.

What are online forums?

Online forums are Internet-based communities available 24×7 where caregivers share experiences, issues, suggestions, information on resources, and so on. Caregivers can participate at any time from the comfort of their homes, even if they have only a few minutes at a time. Participation doesn’t require any travel or arrangements. Good forums can provide very effective peer support.

Available options for online groups

Large dementia support groups: There are some large, well-moderated online groups that focus on support through shared experience and peer support.

One group is Memory People (MP), a closed Facebook group, where members include people with dementia, caregivers, advocates, family members, and professionals. This group focuses on providing a safe and respectful place where members can talk about the reality of dementia and memory impairment and share suggestions. Participation is active.

Leeanne Chames, one of the leaders, explains: “We’re over 18,000 members now and rarely, if ever, does a post go without any comments offering suggestions or support.”

Another very useful forum is Alzheimer’s Society, UK’s Talking Point. Its entries can be viewed by any Internet user but only members can participate. Again, most posts get several responses. Forum sections include support from other members, information and resources, Alzheimer’s Society news, notices and videos. The forum’s structured format makes it easy to locate relevant posts.

Another large online group is AlzConnected (this is managed by Alzheimer’s Association USA).

Large online forums offer a wider base of caregiver experience compared to face-to-face caregiver meetings. Caregivers sometimes stop attending face-to-face meetings because they can no longer get suggestions for their issues, but online forums continue to prove useful for a wide range of situations.

One caregiver who joined Memory People says she does not feel the need for any other forum. “Whenever I face a difficult situation I usually find something useful in the forum. I read almost every post. That is the main thing helping me understand and cope with behaviour problems.”

Special dementia forums for specific types of dementia are also available, such as groups for early-onset dementia, Lewy Body Dementia, Fronto-Temporal Dementia, etc. Interactions in these may be fewer but more relevant for persons concerned about the specific situation.

Other online forums may be available on general health resource sites addressing multiple medical conditions. One such site, currently aimed mainly at India and Singapore, is PatientsEngage.

More information on existing online forums can be seen at Informational websites on dementia/caregiving.

Tips for using an online forum

• Check your comfort level with the group’s scope and guidelines. Also, see how clear they are. (For example, good groups usually state clearly that they are not meant for medical advice).
• Check the quality and usefulness of participation. Do most posts get responses giving emotional support, shared experiences, and relevant suggestions? Do moderators remove irrelevant or disrespectful posts, advertising posts, and spam messages? How useful are the entries for your personal and cultural context?
• Are you comfortable using the technical platform of the group (whether Facebook or email groups or website forums).

Some suggestions for joining and participating in an online forum:

• Be careful while creating your user profile because this may be visible to other members or even to the public.
• Read the guidelines and the entries in that group to understand the conventions and rules before you make any posts or comments.
• When posting a query, share information needed by others to give useful responses but avoid personal details (names, addresses, phone numbers, etc.) Ensure your posts are respectful. Remember, you don’t know who will read the post; your friends, relatives, and colleagues may be part of the group. Data misuse is also possible, so caution is better. As Chames says, “This is the Internet, and honestly, anyone can be anyone.”
• Do not adopt any medical advice or alternate therapy based on forum posts. If you find something interesting, discuss it with your doctor before taking any action.

Smaller online groups

There are also small online forums created for a selected set of caregivers. These may be created by a caregiver meeting’s coordinator to provide continued connection and support. Or they may be created by caregivers who want to stay in touch. Several such groups exist in the form of email groups, closed Facebook groups, and Whatsapp.

Such groups can be effective in creating a helpful caregiver community for mutual support. Mangala Joglekar, a social worker associated with Deenanath Mangeshkar Hospital, Pune, arranges regular caregiver meetings in Pune, and moderates a Whatsapp group to supplement these meetings.

She observes, “Caregivers interact on this Whatsapp group. They may sometimes talk about their caregiving situation. Sharing information and resources is quite common. For example, about some useful program in town, or asking if someone knows a doctor who visits at home or contacting each other when they need assistants.”

Some tips if you want to set up an online group with fellow caregivers:

• Create a suitable group. Choose a suitable technical platform (whether email groups, Facebook, Whatsapp, bulletin board, etc.), have a clear scope and guidelines. Set up suitable group privacy. It is strongly advised to disallow discussions on medicines; even large groups with well-informed moderators don’t allow medical advice. Also, decide the types of messages allowed. Often irrelevant messages make it difficult to locate useful and important messages.
• Select a well-informed and active moderator. Dr Sridhar Vaitheswaran (Consultant Psychiatrist and Coordinator, DEMCARES, Chennai) points out that “a group that is not moderated can cause damage as members may share information and suggest or do things which may not be appropriate.” So, choose a moderator who has enough knowledge of dementia and will spend enough time to check and moderate the posts and stop misleading information.
• Have realistic expectations. While such groups reduce isolation and allow sharing, they are often small and participation may be low. Some queries may not get satisfying responses. In practice, most such groups fade away in some months or years.
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To conclude, dementia caregivers please know that connecting with fellow caregivers has made a lot of difference to caregivers who have tried it. Please attend a few face-to-face caregiver meetings if you can. And join a reliable online group. You may be surprised at how experiences and suggestions from even a few fellow caregivers can be a turning point in your care approach.

Acknowledgements: Special thanks to the caregivers, volunteers, professionals, and group coordinators who generously shared observations and ideas about face-to-face and online support forums.

For more articles related to Dementia and Alzheimer’s Disease, click here.

© 2018 Swapna Kishore