Online caregiver communities: supporting each other

I used to feel lonely as a caregiver till I discovered that there are enough of us, and that there are communities–and even more important: we caregivers can form our own communities. Unfortunately though, caregivers don’t get together often enough, because caregiving is often hidden behind the scenes, even for serious and long-drawn illnesses.

In India, where looking after family members (whether a child or a spouse or a parent) is part of the expected duty, family members typically do not share their problems with “outsiders”, scared that they will be seen as unloving or as persons shirking their duty if they let even a bit of fatigue show. I think silence about caregiving actually worsens the quality of the care we can give our loved ones, because information, tips, and ideas do not get pooled, and care given by a family is restricted to what they can figure out by themselves (possibly in their overwhelmed state). In effect every family is forced to reinvent the wheel.

Contrast this to roles that are talked about openly– like “normal” child-rearing (not bringing up children with special needs, which remains in the shadows). For normal child-rearing, experience pools are easily available and can be accessed without shame.

We need communities and sharing for caregivers, too. Communities where we are able to talk about situations, and hear from others whether they’ve faced similar situations, what could have caused it, what worked, what didn’t work.

Of course, given that caregivers remain invisible, it becomes even more challenging to collect enough caregivers to form a community, and then make members speak up and share🙂

In the “Western” countries as we call them, support groups are relatively common. Caregiving is openly acknowledged as a role, and society accepts that caregivers need support. Such support is partly given by support groups that meet periodically to discuss topics and situations of mutual interest, get expert opinions, and relevant training.

In India, people assume that a “joint family system” provides all necessary support, and feel that outside help is not needed. Some even assume that if a caregiver needs help from outside the family, it indicates the decline of the joint family system, of culture, and all that. The mechanism of supporting caregivers is associated in part with a sense of inadequacy and “bad family” and shame for society as such; if our families were “good”, we would not need support from “outsiders”.

But taking care of a patient using unproven “instinct” is not the same as being an “informed” caregiver who understands the situation and challenges and uses suitable mechanisms and skills to help the patient.

Caregiver communities collectively enable caregivers to become better and more informed caregivers.

Given how difficult it is for caregivers to locate each other and coordinate meetings, in-person communities are difficult to form and sustain. Many caregiver groups that are started with the best of intentions start tapering off unless some volunteer/ caregiver makes it his or her life-mission to constantly induct new caregivers.

Because, you see, a caregiver community is an ever-changing community.

A loved one falls ill, a family member becomes a caregiver. The caregiver moves from newbie to expert caregiver/ overwhelmed caregiver. The loved one recovers or dies, and the caregiver moves on to some other, hitherto-neglected role to catch up for the lost years of life. Though ex-caregivers may be willing to help other caregivers, they may not have the time to actively seek out and interact with a caregiver community and so their experience as caregivers is not easily available to new caregivers just embarking on this journey. That’s an entire body of knowledge lost, and the new caregivers must begin from the beginning, reinvent the wheel, exercise creativity afresh.

Which is why I think online communities are a great way to go.

Online communities allow us to connect at our individual time and pace, from wherever we are. We can respond as we wish. Things may be going smoothly for a while and we don’t participate, and then something goes wrong and we can post the problem we face, our worry or rant, or something nice happens and we can post that, and others can respond. And, depending on the type of online method chosen, the past experiences and information shared remain available in archives, and can be searched.

There are various sorts of communities available online for dementia care. Some allow any concerned person to be a member; some are more selective, and want only persons directly involved in providing care to join. Some are more about sharing links and resources and news on events, some are forums for caregivers to share their life stories and problems, and some as a mix of both.

Groups that are mainly focused on directly supporting caregivers are often more selective about who can join. They may restrict members to caregivers and ex-caregivers because they feel that only those who have gone through it/ are going through it would be sensitive enough to understand; this safe and non-judgmental environment helps caregivers open up about problems they may otherwise hesitate to share. Some communities allow everyone to see posts but only members can make posts. Some allow members to join under pseudonyms of their choice, others insist on real names.

Many caregiver communities are “closed” communities where only members can view the posts; outsiders cannot either see or post anything.

Depending on the number of members and the type of posts, each community settles at its own pace and level of participation; some are vigorous forums, many are sporadic, always available, but with occasional gaps of days between posts.

People sometimes make long-lasting friends on these forums.

In my experience, each group occupies its own niche, which determines what a caregiver can expect from it, or contribute to it. We choose which groups to join. Here are some criteria I can think of for deciding whether or not to join a group:

  • Do I fit the profile of the members of the group?
  • Am I happy with the objectives of the group? Do I want to be part of a group with these objectives?
  • Are the group’s posts visible to public or only to members? If they are public, am I comfortable participating in the group? Are there things I want to post publicly?
  • Am I comfortable making posts that could be read by and commented on by persons of the profile mentioned?
  • How big is the group? Do I want to be part of such a big (or small) group?
  • Does the member profile of the group have any special attraction for me? Does it have some persons I would like to interact with?
  • How active is the group? Does this level of activity suit me? (Of course, activity levels can change, and they may not matter if I just want a group that is available when I want to post)
  • How easy is it to use the group? For example, will I find it convenient to log into the group, or will I get messages automatically, and how easy will I find it to post/ comment?
  • Is my membership with my real name or pseudonym, and am I comfortable with that?

  • How easy is it for me to read older posts, or search them?
  • Is participation compulsory, or can I “lurk” and learn from the exchanges between others if I want?
  • How much am I willing to contribute to the group? How meaningful would my contribution be?
  • How many groups am I already a part of? Do I really need another group? Should I be quitting another group if I join this one?
  • Can I benefit from the group without joining? Is that what I want to do?

(If you can think of more criteria, please add them to the comments on this post)

We must remember, of course, that a community works only to the extent the members participate. We can make a community a success; if we see a post and share our thoughts or tips or similar experiences, we make the community richer. When we, in turn, want help or need to vent, we get similar support.

We give, we get, because we are in it together.

I’m a member of a few online groups where supporting dementia care is clearly stated as part of their objectives. (The data below is as of the time of making this blog entry; things may change…):

Facebook group Alzheimer’s Disease in India: This is a public group, so posts made here are visible to anyone logged into FB, whether or not they are members of this group. The group members include volunteers, students and doctors concerned about dementia care, and also some caregivers and patients. Most posts provide links to article, interviews, and resources from across the world (including India), published papers and newsletters from India, and dementia/ care events and organizations in India. A few posts are discussions started by concerned persons and some queries/ problems raised by caregivers. Click here to read more/ join.

Memory People™ is a closed Facebook group, where only members can view or post entries or comments. Members include patients, caregivers and advocates from across the world, and members share their experiences, problems, and solutions in an empathetic way. The group has well over a thousand members, and is very active. The group has been founded by an Alzheimer’s patient, Rick Phelps, and has many admins who help run it smoothly. Privacy and respect are paramount here. Membership has to be approved.

As per the description of the group available at their “Fan page”:

If you or a loved one suffers from Alzheimer’s, Early Onset Alzheimer’s, or any Dementia related diseases, if you are an advocate, or want to learn more about these diseases, we invite you to join us….

To request to join the group, click the link here.

Alzheimer’s Association (U.S.A.) message boards and chat rooms are an online communication forum. As per their “welcome” message, you are invited to:

Share your thoughts and experiences, query your colleagues and make new friends. Please join our community.

The Alzheimer’s Association message boards and chat rooms are public and anyone can browse them, but only registered members may post. The boards are an extensive source of information and an active community, and they have a search facility which could be very useful to check out what various members have to say about any specific topic. The site has several thousand registered users. Members can choose a display name while registering. Click here for the introduction, and click here for links to various forums and chat rooms.

More groups: There are also some India-focus closed groups on Facebook and on google groups intended for dementia patients and current or past caregivers; membership is by approval. In these groups, posts can be viewed or made only by members. As the level of activity in these groups varies, and groups start and end, please contact me for updated information on the groups I am aware of.

Over to you now, to share your opinions about online caregiver communities, or provide any data you have on other online groups that support dementia caregivers.

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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India. I have also been a dementia caregiver for well over a decade, and am deeply concerned about dementia care in India; on this blog I share my personal caregiving journey, my experiences as a resource person for dementia care, and musings on life, aging, dementia in India, and such sundries. More about me and the work I do for dementia care. For structured information on dementia, for discussions, tools and tips on caregiving issues, for resources in India, and for caregiver interviews, please check my website http://dementiacarenotes.in (or its Hindi version, http://dementiahindi.com). For videos on dementia caregiving (English and Hindi), check the youtube channel here.

3 Responses to Online caregiver communities: supporting each other

  1. Thks for wonderful sharing , but I think you missed : Alzheimer’s and Related Disorders Society of India – Open Group — ARDSI@groups.facebook.com

  2. Vijaya says:

    As Swapna says, “Every family is forced to reinvent the wheel….. Communities where we are able to talk about situations, and hear from others whether they’ve faced similar situations, what could have caused it, what worked, what didn’t work ….Caregiver communities collectively enable caregivers to become better and more informed caregivers.”

    This is why we need a forum- a bulletin board with topics in threaded fashion. This will ensure we do not lose this body of knowledge that caregivers gain over the years. Experienced caregivers can help new caregivers by recording their experiences about situations and their methods of dealing with these various over the years.

    It would be easy for new caregivers to search through bulletin board conversation threads to look for issues similar to ones own and what the others did and what solutions worked for them. They could also post their queries and be readily helped by experienced caregivers.

    This would ensure that the experience and body of knowledge gained over years of care-giving in diverse situations remains intact. It is for this reason, that an online forum / a bulletin board exists at http://caregiverfriend.phpbb3now.com/viewforum.php?f=2

    Please visit this forum, join, share your experiences, tips, suggestions, start new topic threads and anything else that will help collate this collective body of knowledge that we as caregivers share.

  3. Pingback: Listening to caregivers, respecting them, supporting them: a follow-up post « Swapna writes…

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