Swapna writes “We caregivers can form our own communities.” This is a simple solution to many problems faced by dementia caregivers.
There was no functioning support group to help when we needed it most in the early stages of my Dad’s illness. The doctors had not cautioned us about wandering and incontinence. We did not know what we were facing. Though we found much information online, there was very little in the Indian context. Support groups were non-existent in my city. We struggled to cope.
I had chance meetings with other caregivers at doctor’s clinics or a phone number passed on through friends of friends who had heard of others with similar ‘problems’. I grasped at these and made contact and found they were just as happy to make my acquaintance.
We shared notes, gave each other tips on the day-to-day challenges, and marvelled at some ingenious solutions. Most importantly, it gave us a chance to talk to someone who understood. It was a revelation to know the greater challenges some other caregivers had to deal with in the face of which my own patient management issues were small potatoes. Some had real financial issues, in-law trouble, trouble at their work place all caused by the illness that affected their family member. I could not offer them solutions, but they often only wanted to think aloud what they could not discuss with anyone else they knew without being judged or criticised.
There are many aspects to a long-term illness like dementia. The challenges and stress are different at every stage of the disease. There can be no ‘model’ or ‘one-size-fits-all’ solution. Nevertheless, the learning of each caregiver can be shared to form a collective pool of knowledge.
Without this, 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 where topics are presented in threaded fashion. It would greatly help newbie caregivers tap into the vast pool of knowledge that caregivers with experience can help create by contributing and sharing online. It would be easy to search through bulletin board conversation threads to find the situation that is most similar to their own. They could also post their queries and be readily helped by experienced caregivers. This will ensure that the experience and body of knowledge gained over years of care-giving in diverse situations remains intact. It is for this reason, a bulletin board exists at
Please visit this forum, join, share your experiences, tips, suggestions anything else that will help build this collective body of knowledge that we as caregivers share.
Read Swapna’s blogpost about online caregiver support groups at http://swapnawrites.wordpress.com/2011/11/11/online-caregiver-communities-for-dementia-care-supporting-each-other/