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• Dementia and family. The role of Alzheimer cafe in reducing the burden of caregiving families

  34-46.

  G. Kiss

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  In the last years, the international researches have turned towards families caring for elderly people with dementia /see the works of Zarit et al. 1985, 2005; Aneshensel et al. 1995; and Kaplan 1996/. The majority of these researchers analysed the stress burden of the caring family member and its consequences, role conflicts, and the tensions in the caregiving family (Zarit et al. 1985; Aneshensel et al. 1995; Kaplan 1996; Zarit et al. 2005). The revelation that in terms of Romania, we know nothing or almost nothing about the burden of families caring for elderly people with dementia and its effect on the primary carer, played was an important factor in the choice of topic. This is why, in a vast empirical analysis, in Transylvania, 50 interviews and questionnaire surveys were made with people caring for elderly with dementia in their own homes and 50 families whose relatives with dementia have been moved to a long-term residential home in the past 12 months from the time of the survey. Gathering data took three years (2015–2017). The research included the inquiry interview with the primary caregiver family member, in which we assessed the functional barriers and the psychosocial difficulties (Szabó 2000). The analysis of the levels of social skills was built upon this, and it unfolded the main characteristics of self-sufficiency, existing social skills, and social adaptation. This survey pointed out the everyday tasks in which the client requires help. With regard to family care, we have also analysed the independent living ability of people with dementia. These three angles offered the guidelines for the assessment of “objective burden” of the caring family member. Reviewing the distribution of caring tasks within the family is based on this, which helps us finding out who the key persons are, the ones undertaking the primary caregiving duties. For analysing the formation of roles within the family, we have devised our own criteria (Szabó–Kiss 2015). Starting from the objective burden, in regard to the “subjective burden”, we have obtained valuable indications about the emotional effect of caregiving family member. The detailed assessment of self-sufficiency through which we have analysed the measure of functional degradation of people living with dementia, was added to the devices of the analysis (Szabó 2000). The internationally approved scale of memory and behavioural problems (Zarit 1985) is connected to this, which measures the distractive attitude of the person living with dementia and its effect on the primary caregiver. The survey of the primary caregiver’s burdening is also connected (Zarit 1985), and so is the assessment of the negative and positive attitude towards the caregiving tasks (Farran et al. 1999). A six-step focus group is added to the devices of the research, in which the primary caregivers, by hearing each other’s cases and following thematic questions, open up more easily about the critical periods of caregiving and the pivotal factors of institutional placement.