Support groups for informal caregivers of people with dementia as opportunities for empowerment in Estonia

ABSTRACT

Support groups for informal caregivers of people living with dementia have been recognised as an effective intervention for empowering caregivers. Regular support groups for caregivers who care for people living with dementia were launched from 2017 to 2019 over different regions of Estonia. Using a participatory action research approach, the aim of this study was to explore empowerment within these support groups from the perspective of the individual, the community and at a political level. This qualitative study relied on using semi-structured interviews, questionnaires, and written reflections. The data were collected from informal caregivers, support group facilitators, social work specialists and politicians. We can conclude that support groups are option for empowering informal caregivers and communities, and contribute to policy-making. Participation in support group increases caregivers’ awareness and networking, and therefore improves competence and raises consciousness of citizenship. Caregivers, in conjunction with the nongovernmental organisations, researchers and facilitators, become the audible voice of the interest group in a situation where the topic of dementia is under construction in society, and contribute to social changes.

KOKKUVÕTE

Dementsusega lähedaste omastehooldajatele suunatud tugigrupid on üks võimalikest sekkumistest mis aitavad võimestada omastehooldajaid. Tegevusuuringu raames käivitati 2017-2019.aastatel Eestis 17 tugigruppi. Uurimuses intervjueeriti sotsiaalvaldkonna spetsialiste ja poliitikakujundajaid ning analüüsiti tugigrupijuhtide kirjalikke refleksioone. Käesoleva artikli eesmärgiks on mõtestada võimestamise aspekte läbi tugigruppide tegevuse nii individuaalsel, kogukonna kui ka poliitilisel tasandil. Uurimistöö tulemusena võib tõdeda, et tugigrupid on üheks võimaluseks võimestada dementsusega inimeste omastehooldajaid, samuti kogukonda ja panustada nii riiklikul kui regionaalsel tasandil poliitikakujundamisse. Tugigrupis osalemine tõstab omastehooldajate teadlikkust ja pädevust, tekib sotsiaalne võrgustik ning seeläbi panustatakse kodanikuühiskonda. Samuti jõuab huvigrupi hääl nii poliitikakujundajate ja teenuste arendamise eest vastutavate spetsialistideni kui ka leiab laiemat kõlapinda olukorras, kus tõusetuvad dementsusega inimeste hooldamise küsimused teravamalt fookusesse ja seeläbi panustatakse sotsiaalsetesse muutustesse.

KEYWORDS:

• Dementia
• informal caregivers
• support group
• empowerment

VÕTMESÕNAD:

• dementsus
• omastehooldaja
• tugigrupp
• võimestamine

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Notes on contributors

Merle Varik

Merle Varik, MSW. She is lecturer in geriatrics at the Tartu Health Care College, and do her PhD studies at the Tallinn University in Social Work. Main research topics relate with dementia, older people care and well-being, and empowerment of informal caregivers. She is member of NGO Living with Dementia and Estonian Association of Gerontology and Geriatrics. She also works in the Dementia Helpline, which is a free telephone support service for individuals, families, and specialists.

Kai Saks

Kai Saks, PhD. She is Associate Professor at the University of Tartu, Faculty of Medicine, Institute of Clinical Medicine, and associate professor in geriatrics in the Department of Internal Medicine. Main research topics are comprehensive geriatric assessment, dementia, quality of life of older people. She is a board member of the Estonian Association of Gerontology and Geriatrics and works also in clinical practise (cardiological testing).

Marju Medar

Marju Medar, PhD. She is Associate Professor of Social Work, School of Governance Law and Society, at the Tallinn University. Main research topics are relating to coping of the population, need for, use and administration of social services. She has worked as a practitioner in the educational and social fields, led several Estonian and international research and development projects in the social field.

Katrin Merila

Katrin Merila, MA. She has obtained a degree Master of Art in Social Sciences and participated in the research group during her studies.