Support groups for loved ones of people diagnosed with dementia are helpful in getting necessary information and social support for care
Merle Varik, from the School of Governance, Law and Society, defended her doctoral thesis on 22 February 2022. The thesis is entitled "Empowering Informal Caregivers of People with Dementia Through Support Groups: A Participatory Action Research Study" (Estonian title: „Dementsusega inimeste omastehooldajate võimestamine tugigruppide abil – osalustegevusuuring”).
Long-term care in Estonia is inextricably linked to familial responsibility. Loved ones often take on the role of caregiver and in the care process they experience physical, mental, social and material difficulties, which frequently bring along a negative impact on family relationships and the caregiver’s happiness and health. They have pointed out that it is important for them to receive information, advice and suggestions in regard to caring and supporting a loved one with dementia.
The aim of the doctoral thesis was to develop the appropriate format and content of the support groups, launch them in Estonia and explore empowerment within support groups from the perspective of the individual, the community and at the political level.The results indicate that receiving a dementia diagnosis is important to caregivers. In addition, there was a lack of information and advice in regard to the progression of the disease, the types of changes caregivers should expect in the everyday lives of their loved ones, where to receive support and advice whenever required and how to ensure the well-being of their loved ones. The highest burden of care was experienced in the beginning and the situation overall was nerve-racking if they lacked previous caregiving experience.
The research revealed that because it is difficult to balance caring and working, caregivers require a wide array of support services to allow them to combine and balance their working life and long-term caregiving duties. “The caregivers who shared their experiences said that their other duties. like spending time with their grandchildren or socialising with acquaintances, became secondary,” said Varik. “Therefore, they experienced loneliness and they needed to plan their personal lives extremely meticulously, abandoning their hobbies for instance. However, they still preferred to care for their loved ones at home for as long as they could, with the need for home care support services, such as IT tools, respite care services, day care services, counselling, emotional support and appropriate advice.” It was pointed out that day cares that provided a service for people with dementia enabled caregivers to continue working or have some personal time. Even though the availability of day cares was different in every area, the interviewees were extremely grateful to their local government for providing this service.
Interviewees felt a sense of loneliness and hopelessness in regard to their loved one with dementia, as they did not receive psychosocial support or training. Important aspects for caregivers were the attitude and understanding of neighbours, specialists and community members towards the person affected by dementia.
The research results revealed that support groups for caregivers are sustainable – the initial number of support groups created by NGO Elu Dementsusega was 17, but that number has risen to approximately 30. The psycho-educational design of the support groups gives emotional support and compassion to participants, helps them adapt to the caregiver role, creates a social network, improves the caregivers’ competence, including the acquisition of essential information and skills, and increases self-belief. The support groups are also used to focus on the positive aspects of the care process, which helps with stress. Being part of a support group improved the competence of caregivers because they received emotional support, a sense of belonging and self-belief, thereby reducing social isolation and loneliness.
The study results showed that support groups for informal caregivers of people with dementia are sustainable and offer psycho-emotional support, help build their social network and contain educational aspects that contribute to increased knowledge and skills. Therefore, support groups and NGO grassroots-level activities help to bring caregivers’ voices to the forefront and are promoters of social change; they also contribute to the development of dementia-friendly communities.
The doctoral thesis is supervised by Marju Medar, Associate Professor of Social Work at Tallinn University, and Kai Saks, Associate Professor Emeritus at the University of Tartu.
The opponents of the doctoral thesis are Ruth Bartlett, Associate Professor at the University of Southampton, and Jean Pierre Wilken, professor at the HU University of Applied Sciences Utrecht.
The doctoral thesis is available in the ETERA digital environment of the Tallinn University Academic Library.