Family caregivers caring for a relative with dementia : a comparison of urban and rural areas

Abstract

Family caregivers´ efforts for a family member with dementia are considerable and constitute a major societal resource. Most studies in family members’ caregiving have been carried out in major cities and there are lack of knowledge in how rural families experience their situation. The overall aim of this thesis was to develop and deepen the knowledge of the relationship between the settlement, here urban and rural areas, and family caregivers' experiences of providing care for a relative with dementia. The two sub-studies of the thesis are based on a social constructionist perspective in which the human being is considered to construct their lives both in interaction with others and with the place they live in. The place is not only a geographical area, but also a place consisting of social relations. Relatives of urban and rural areas were assumed to construct their lives in different ways that could affect the situation as family caregivers.

The aim of study I was to describe and compare urban and rural family caregivers' reactions to caring for a relative with dementia and to examine the associations between caregiving and socio-demographic factors. It was conducted as a prospective cross-sectional study with a total of 102 (57 urban + 45 rural) participants. The Swedish version of The Caregiver Reaction Assessment Scale (CRA) was used and consisted of 27 positive and negative items divided into five subscales (caregiver esteem; lack of family support; impact on finances, health and schedule). Data were analyzed using descriptive statistics. Student's t-test was used to examine differences, Chi-2 test for proportions and linear regression analysis was used to examine the associations between the five sub-areas and socio-demographic variables.

The aim of study II was to explore and better understand how the approach of family members to their caregiving situations differs in rural and urban areas. Narrative interviews were conducted with 23 family caregivers (11 urban + 12 rural). The questions involved daily life and work both now, with a relative with dementia, and earlier, and the meaning of the settlement and the social life. The interviews were analyzed based on a hermeneutical approach.

The results of the regression analysis showed that neither the settlement nor the level of education had any association with how family members assessed their situation (I). However, most families in both urban and rural areas were satisfied being able to take care of their relatives even though the situation had a major impact on everyday life (I-II). The adult children experienced a conflict between their own and the family's needs and the sick parent's need of care (II). Everyday life was affected to a greater extent than for the spouses (I). The women assessed a greater impact on the economy, and more impact on daily life than the men. But family caregivers in the rural area seemed to get more help from family and others than those in the urban area (I). The interview study (II) showed a more collective view of the family and partner relationship of the family caregivers in the rural area, which seemed to be manifested in a greater acceptance of life and to preserve normal life. The family caregivers in the urban area showed a more individual view expressed in more frustration and seemed to be characterized of fulfilment of duty. In conclusion being a family caregiver to a relative with dementia is probably as stressful whether one lives in urban or rural areas. At the same time there were a variation of approaches to the situation affected of how people view themselves, the family, and the couple, which imply different formal support.