Are Support Groups for People Like Me?

Abby Nathanson
Director of Support Groups

At CaringKind, we think support groups are great. We know how they help caregivers who feel isolated, overwhelmed and wrung out. We hear over and over from people who wish they’d joined years sooner, and wonder why they waited so long. The truth is, most people wait too long to ask for help. Most people bear the experience for months or years by themselves or with friends and family when they’re available. But why?

For some people, it can be intimidating to think about walking into a room full of people, sharing your personal experiences and feelings, and not knowing how other people will respond. Some people worry that hearing everyone else’s problems will make them feel worse, or even just by focusing on their own feelings, the feelings will be magnified. Other people were raised not to “air their dirty laundry” to strangers and burden other people with their woes. Does this sound familiar? We hear this repeatedly from surprised caregivers who found out what the research already knew — support groups really help. They do.

People who join and regularly attend groups experience less distress, less isolation, and increased confidence. They feel better about the decisions that they make and get hope from seeing how other people cope and deal. They face their fears and form new bonds. Talking to people who deeply understand what you’re going through, having a room full of people committing every week to sharing the experience with you, knowing that you’re not alone, knowing that other people survive this for years and years on end, too — it all helps, even if it’s not always clear how.

But still, even though we know it helps, and we know that the 600+ people who attend our groups every month know it helps, people hesitate. In fact, we did an informal study ourselves. We looked at all the people who called our Helpline over a two month period asking about support groups, knowing this didn’t include people who were sitting at home, just thinking about it.

Among everyone who called and was given a referral for a specific group, that was near them and at a convenient time, almost 80% of them never followed up. That means that eight out of every ten people who thought enough about joining a support group to pick up the phone, have a conversation with a Helpline specialist, and go through the process of finding a group that worked for their schedule, never called the group leader to take the next step. We asked ourselves — why?

We know caregivers are calling because they already have a lot on their plates, and sometimes, doing something for yourself is just last on the list. But we wondered what we could do better, to reach more people who already knew they wanted to be part of a group. Maybe they were intimidated or uncertain about what to expect, so they didn’t call. Those people, we thought we could reach.
So we changed our system, and did a trial run over the summer. We asked the support group leaders to call the prospective members instead of asking the members to call the leaders. The results were remarkable! We re-evaluated at six weeks, and found that the numbers had totally reversed, and 80% of the people who called about joining ended up in a group! We were so excited to be able to reach so many more caregivers. We started creating new groups just to meet this new demand, at the time slots that were most requested. A diverse group of New Yorkers – from their 20s to their 90s; gay, straight, lesbian, bisexual, queer; African-American, Caucasian, Hispanic, Chinese, Russian and everything between; men, women, transgender and gender non-conforming; people with dementia at home, in a facility or far away; everyone comes to groups and belongs here.

We’re hoping to reach hundreds more New Yorkers just like you, to see if a support group would be right for them, too. Even if you’re not usually good at sharing your feelings, even if you’re not sure about what would happen or help, and even if you haven’t totally bought into the idea that talking to a bunch of people will help — give us a call, you might be surprised.

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