Create dementia care support groups (includes download)

This page is part of the section Resources for volunteers. Use the menu option on top, or the right sidebar, to see the other pages in this section.

On this page:

Introduction

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.

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What is a support group

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 )

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Additional note for some India-specific aspects

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.

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Resources and references

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.

Online support groups

For online support groups, the draft document is available as on Slideshare here or in the viewer below. (Or download from this link)

The document can be downloaded from this link)


In-person support groups

For in-person support groups, you can view the document at Slideshare if the viewer below does not load properly. (Or click here to download the PDF.)

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.”

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Pages in this section:

Resources: If you want to help caregivers/ spread dementia awareness

4 Responses to Create dementia care support groups (includes download)

  1. dear swapna,
    iam very happy to see this good news.i wonder if you could join hands with ardsi,which has been leading the dementia care movement.one area ardsi would require expertise would formation of viable support groups and make it work sacross the country.
    support groups are integaral part of dementia care in the world,not so in developing economies like ours.So iam also looking at modelswhich we could promote in other countries as well.
    regards,
    jacob roy

    • Dear Dr. Jacob Roy,
      I totally agree with you about the need to set up support groups as an integral part of helping dementia care, and I would be delighted if this draft document could prove useful to anyone who wants to set up a support group. Comments from others to make this document more effective are also most welcome.
      Best Regards,
      Swapna Kishore

  2. dawn lockley says:

    i have no website, im just a loving daughter, who has a dad who has severe dementia, and i just want some one to talk to, a support group , where i could talk to other people, a live chat forum , somewhere where i can talk about how i feel, with people who understand.

  3. sanchita paul says:

    I have just come across this website and am encouraged and happy to see that ‘dementia’ is being noticed in India. I am a therapist from the UK and often wondered what I could do to support dementia in my own country.I suppose these are small steps towards awareness but I am so passionate about this that I would like to contribute to this cause in any way I could.As a therapist I work with patients with dementia and am not oblivious to all the challenges which come with it. Specially from a caregivers point of view and therefore have developed some strategies based on evidence which help them throughout the care giving years. I will try and formulate a document to help the caregivers and hopefully be a part of this education.
    My best wishes to all the caregivers.Well done and keep up the good work!!
    sanchita

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