Create dementia care support groups (includes download)
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Caregivers need support, and one very important mechanism is a support group where caregivers can meet and talk face-to-face (an in-person support group) or online (through some online forum or bulletin board), or they can discuss a topic with an invited expert, or learn some important skill.
A support group is essentially a safe forum for caregivers to share their experiences with each other, share tips and advice, and support each other emotionally.
Caregivers often get isolated socially and also lack peers with whom they can discuss problems. They do not have access to experts who can resolve their doubts or give them advice. When caregivers get together to share, forming a support group, and they meet (online or in person), these problems can reduce. Moderators and organizers of support groups can also arrange access to experts who may explain concepts to the caregivers, train them, resolve their queries, or just provide support and validation.
The documents provided in the section Resources and references below below explain support groups in greater detail.
Check the section Resources and references below for two detailed documents on support groups: one for in-person support groups, and one for online support groups.
(A general discussion on how potential contributors can select projects and contribute can be seen at: Action Areas to Contribute to, and Possible Approaches )
Some aspects to remember given the Indian context:
- The concept of caregiver support group meetings and even the role of a caregiver are relatively new in India. Participants may not be familiar with how such groups function. Moderation may be a critical function. Also, participants may not know how to share while protecting their privacy (especially in online groups). They may need some guidance for this.
- Often, people are quick to give unsolicited and unverified advice. This may include medical advice or statements asserting the efficacy of alternate treatments, faith healing, herbs, and traditional approaches. Moderation has to be especially sensitive and careful to ensure that misinformation is not conveyed and that medical advice is only given by authorized persons who have the required qualifications.
- Traveling to the venue of an in-person support group meeting may be very difficult. It may also be difficult for family caregivers to arrange for care of the person with dementia while they are at a support group meeting. Creative solutions may be needed, such as using Skype for video participation. Or the support group coordinators can consider arranging travel for caregivers or having day care arrangements for persons with dementia while the caregiver is attending the meeting.
Here are some draft documents that put together my thoughts for online support groups as well as for in-person support groups. These are being made available here for feedback and comments from anyone who may want to set up such a group. Please share any comments you have as that will help improve the documents.
The document can be downloaded from this link)
This document can also be downloaded using this link.
Guidance and tips from Alzheimer’s Disease International for starting a self-help group are available as a small booklet. View it at Starting a self-help group or download the PDF at:this link. As the booklet says, “The aim of this booklet is to help you start and run a self-help group for caregivers of people with dementia. Such a group can offer support to caregivers as well as to other members of the family or friends who are also affected.”
Pages in this section:
- Understand dementia and care in the Indian context
- Action Areas to Contribute to, and Possible Approaches
- Community-level work: A Dementia-Friendly India
- Focus: Improve Dementia Awareness
- Focus: Create Dementia Services and Products, Facilitate Support Forums
- Project ideas for students, artists, and others