Care for the Carers: Proliferating Support Groups

A pot of forget me nots.

Author, Merle Varik, introduces her newly published article in ARJ, entitled: Launching support groups for informal caregivers of people living with dementia within participatory action research.

“In our context, in Estonia, there is only modest psycho-emotional support for caregivers of people with dementia. Indeed, there is a lack of awareness about the disease. The informal caregivers’ voices is rarely heard. This is no regular, financed support groups for caregivers. Therefore, the nongovernmental organization (NGO) I’m involved with – ‘Living with Dementia’ – focused at the grassroots level, helping support both the people with dementia and their families. 

Effectively we have launched 17 support groups in different regions of our country. We have organized 81 support group meetings, and the total number of participations was 574. 

The support groups have spread across many countries becoming well-known and popular. They are informal, inexpensive and effective. Participation helps people adapt to the caregiver role, support them to recognise their own needs, encourages them to keep in touch with others with similar experiences, find alternative perspectives and new insights, as well as facilitates the development of their coping strategies.

Our article aims to reflect on the viewpoints and experiences of the lessons learned from the participatory action research conducted from 2016 to 2019. With co-researchers and NGO members we used a “bottom-up” approach to build knowledge and social changes, and therefore the participatory action research was a valuable opportunity that allowed us to be in the middle of intervention.

Based on our fruitful journey, we recommend launching support groups in countries where they do not exist yet, and encourage action research as an appropriate methodology for developing and strengthening knowledge whereby it induces positive social changes. Please read our article to learn more.”

Article citation.  Varik,M., Medar, M. and Saks, K. 2021. Launching support groups for informal caregivers of people living with dementia within participatory action research. Action Research.

Permanent link: https://doi.org/10.1177/14767503211023135.

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