Informal caregivers’ experiences of caring for persons with dementia in Estonia: A narrative study

Abstract

This paper presents the results of a qualitative study aimed at exploring the experiences and needs of informal caregivers of persons with dementia and identifying caregiver expectations for support. The research was based on phenomenological and social constructionist approaches; it also took experience-centred and culturally oriented approaches to narratives. It was conducted in Estonia in 2017 by means of unstructured in-depth interviews with 16 informal caregivers who had relatives with dementia. The narrative approach used in this study proved to be an appropriate and valuable method to understand the situations of the caregivers of the people with dementia, in identifying their needs and expectations, and in developing social understanding for caregivers. The results are divided under four thematic headings: awareness of dementia; process of caregiving and different caregiving roles; influence of caregiving on personal life; and expectations of empowerment. We found that it is necessary to raise public awareness of dementia and develop person-centred support services for the people living with dementia. K E Y W O R D Sdementia, empowerment, experiences and needs of caregivers, informal caregivers, narratives

Balancing care demands and personal needs: A typology on the reconciliation of informal dementia care with personal life based on narrative interviews

“…Hence, previous findings which found that primary carers tend to have higher subjective burden are supported (Gonçalves-Pereira et al, 2020). In accordance with the findings by Varik et al (2019), the personal life of carers experiencing a crisis is (type 'There is no alternative, you have to live with it') or was for some time (types 'Acting strategic is making it work' and 'Reflect the situation, deal with it, and pull it through') almost completely determined by the demands related to the care situation. Restrictions in privacy and in the fulfilment of personal needs are important factors of carer burden (Ransmayr et al, 2018).…”

“…Previous studies indicated that the perception of care as burdensome is related to the perceived need to constantly oversee the person with dementia and to continuously coordinate his/her life, as well as to the lack of or dissatisfaction with social support (Benson et al, 2019;Brügger et al, 2016;Garcia-Mochon et al, 2019;Lopez Hartmann et al, 2019). This degree of commitment is time-consuming and results in restrictions in personal life, such as limited time to pursue one's own interests, loss of freedom and feelings of loneliness or social isolation (Brügger et al, 2016;Large & Slinger, 2015;Ransmayr et al, 2018;Varik et al, 2019). Thus, finding a balance between meeting care demands and pursuing personal goals appears to be challenging for carers (Lopez Hartmann et al, 2016;Quinn et al, 2015;Rayment et al, 2019).…”

Perceived health, caregiver overload and perceived social support in family caregivers of patients with Alzheimer’s: Gender differences

“…Caregiver overload manifests itself as a state of emotional exhaustion, stress and fatigue (Cabote, Bramble, & McCann, 2015; Gräske et al., 2018) and, furthermore, as many other consequences reflected in caregivers feeling dissatisfied with their overall health (Millenaar et al., 2016). Social dysfunction, anxiety and insomnia are prevalent symptoms in family caregivers of patients with dementia of the Alzheimer's type (Ruiz Fernández & Ortega Galán, 2019; Varik, Medar, & Saks, 2019).…”

Assessing psychosocial interventions for informal caregivers of older people with early dementia: a systematic review of randomized controlled evidence

“…This contribution is substantial for the health care system [7]. While the contribution is important, informal caregivers are often exposed to emotional strain, relationship deprivation, family conflicts and financial burden, which can impact their health and life quality [8]. Compared to other informal caregivers, those who care for older people with cognitive decline experience an even greater burden.…”

“…Even a newly acquired role as a caregiver affects other roles and often results in additional burden and emotional strain. This case will become worse especially when a caregiver has no prior experience in caregiving [8]. Moreover, family members often need to transition their relationship with the parent or spouse from that of a family member to that of a proactive caregiver.…”