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V diplomskem delu sem raziskovala skrbništvo in zagovorništvo ljudi z demenco. Zanimalo me je, kako skrbniki nad ljudmi z demenco razumejo svojo skrbniško nalogo. Raziskala sem izkušnje, ki jih imajo skrbniki s skrbniškimi nalogami ter njihovo doživljanje skrbništva. Želela sem ugotoviti, kakšne potrebe imajo skrbniki ob opravljanju skrbniških nalog in kdo jim lahko pri tem pomaga. Raziskovala sem tudi kako skrbniki ljudi z demenco razumejo zagovorništvo in v katerih situacijah skrbniki nastopijo v vlogi zagovornika ljudi z demenco. Z raziskavo sem ugotavljala tudi, na kakšne načine so ljudje z demenco vključeni v odločanje, medtem ko so postavljeni pod skrbništvo. Rezultate raziskave sem pridobila s pomočjo intervjuvanja skrbnikov ljudi z demenco. Rezultati so pokazali, da si skrbniki na različne načine razlagajo svojo vlogo skrbnika ter imajo podobne izkušnje ob opravljanju skrbniških nalog. Ob opravljanju skrbniških nalog, se popadajo predvsem z različnimi stiskami, v manjšini pa izpostavljajo tudi pozitivne strani skrbništva. Skrbniki izpostavljajo potrebo po pomoči s strani strokovnjakov, potrebujejo pa tudi neformalno podporo, materialno podporo in izpostavljajo pomanjkanje informacij o razpoložljivi pomoči. Skrbniki v večini ne vedo, kaj pomeni zagovorništvo ali pa o pomenu le sklepajo ter ga v večini enačijo s skrbništvom. Zagovorništvo, skrbniki opisujejo s poznavanjem karakteristik človeka z demenco, usmerjanjem in delanjem v korist človeka. Svojo vlogo zagovornika, skrbniki povezujejo s skrbjo za finančno varnost človeka z demenco, zagovarjanjem človeka z demenco pred uradnimi osebami in strokovnjaki ter zagovarjanje človeka z demenco ob vsakodnevnih dejavnostih. Skrbniki vključujejo in izključujejo ljudi z demenco v odločitve na različne načine. Ovire za vključevanje ljudi z demenco v odločitve, ki jih skrbniki navajajo, so kognitiven in fizičen upad sposobnosti pri človeku z demenco. Predlagam, da se skrbnike na splošno več poučuje o skrbništvu ter ozavešča o pomembnosti zagovorništva in vključevanja ljudi z demenco v odločitve, medtem ko so postavljeni pod skrbništvo. In my Graduation thesis, I researched guardianship and advocacy for people with dementia. I was interested in how guardians of people with dementia understand their role of a guardian. I have researched the experiences of guardians with guardianship responsibilities and the emotions that arise with it. I wanted to find out what needs guardians have when carrying out their guardianship tasks and who can help them. I also focused on guardians understanding of advocacy and the occasions and situations in which guardians act as an advocate for people with dementia. In my research, I also explored ways in which people with dementia are involved in decision-making while they are placed under guardianship. I obtained the results by interviewing guardians of people with dementia. The results showed that guardians have different interpretations of their roles and similar experiences with guardianship responsibilities. While they mainly encounter various hardships in their roles, a minority also highlights the positive aspects of it. Guardians highlight the need for help from professionals, the informal support, material support and a lack of information about the help that is available. Most guardians do not know exactly what advocacy means, or they only assume its meaning and mostly equate it with guardianship. Advocacy is described by guardians as knowing the characteristics of the person with dementia, guiding and working for the person’s benefit. Guardians associate their role as advocates with looking after the financial security of the person with dementia, advocating for the person with dementia in front of officials and professionals, and advocating for the person in everyday activities. Guardians include and exclude people with dementia in decisions in different ways. Barriers to involving people with dementia in decisions cited by guardians include cognitive and physical decline of the person with dementia. I suggest that more education is given to guardians about guardianship in general and that awareness is raised about the importance of advocacy and involving people with dementia in decision-making while they are placed under guardianship. |
