Avtonomija in spodbujanje samostojnosti ljudi z demenco v domačem okolju : diplomsko delo

Kosar, Nina (avtor), Rihter, Liljana (mentor), Mali, Jana (komentor)

V diplomskem delu sem raziskovala avtonomijo in spodbujanje samostojnosti ljudi z demenco v domačem okolju. V teoretičnem uvodu sem predstavila značilnosti in opredelitev demence. V nadaljevanju sem se dotaknila sporazumevanja z ljudmi z demenco in nadaljevala s temo oskrba ljudi z demenco v domačem okolju. Prav tako sem predstavila potrebe ljudi z demenco in potrebe sorodnikov ljudi z demenco. V zadnji točki teoretičnega uvoda sem predstavila pomen avtonomije ljudi z demenco v kontekstu socialnega dela. Glavni cilj raziskave je bil raziskati predvsem, kako poteka vsakdan ljudi z demenco in vsakdan sorodnikov ljudi z demenco, ki prevzemajo skrb za ljudi z demenco v domačem okolju. Prav tako sem želela ugotoviti, katera opravila opravljajo ljudje z demenco samostojno in pri katerih potrebujejo pomoč sorodnikov ter na kakšen način jim pri tem pomagajo njihovi sorodniki. Želela sem izvedeti, kako poteka sprejemanje odločitev o opravilih, tako lažjih kot kompleksnejših in s tem ugotoviti, kakšno avtonomnost odločanja imajo ljudje z demenco v vsakodnevnem življenju. Poleg tega sem želela izvedeti, med kakšnimi dejavnostmi lahko izbirajo ljudje z demenco in kako jim pri izbiri dejavnosti pomagajo njihovi sorodniki. Želela sem ugotoviti, kako lahko ljudje z demenco izražajo svoje želje in mnenje ter ali sorodniki ljudi z demenco upoštevajo njihove želje in mnenje. Raziskava, s katero sem prišla do odgovorov na našteta raziskovana vprašanja, je bila kvalitativna in empirična. V njej so sodelovali trije ljudje z demenco in štirje sorodniki ljudi z demenco. Torej sem s pomočjo smernic za intervju spraševala oz. intervjuvala sedem sogovornikov, ki so bili pripravljeni sodelovati v raziskavi. Po opravljenih intervjujih sem dobljene podatke tudi kvalitativno obdelala in analizirala. Prišla sem do ugotovitev, da se sorodniki ljudi z demenco v svojem vsakdanu srečujejo s številnimi obremenitvami, povezanimi z oskrbo ljudi z demenco, zato bi bilo treba več pozornosti nameniti njihovi razbremenitvi, denimo z izobraževanji o pomembnosti razbremenitve in informiranju o razpoložljivih oblikah pomoči v okolju sorodnikov ljudi z demenco. Prav tako sem ugotovila, da so ljudje z demenco pri lažjih opravilih samostojnejši in da potrebujejo več pomoči sorodnikov pri kompleksnejši opravilih. Izvedela sem, da sorodniki pogosto odločajo namesto ljudi z demenco, zato bi bilo treba pozornost prav tako nameniti ozaveščanju o pomembnosti samostojnosti ljudi z demenco pri opravljanju vsakodnevnih opravil. Opozoriti je treba na pripomočke in aplikacije, ki lahko ljudem z demenco pomagajo pri samostojnem opravljanju opravil v domačem okolju. Prav tako sem ugotovila, da imajo ljudje z demenco manjšo možnost odločanja o vsakodnevnih opravilih, predvsem kompleksnejših. Znova bi bilo dobro opozoriti na pomembnost samostojnega odločanja oz. odločanja s podporo ljudi z demenco o vseh vidikih njihovega življena. Treba bi bilo organizirati delavnice, ki bi sorodnike ljudi z demenco podprle pri vključevanju ljudi z demenco v odločanje o svojem življenju. Na pomembnost ohranjanja samostojnosti ljudi z demenco in samostojnega odločanja ter odločanja s podporo bi bilo dobro opozoriti tudi s posebnimi brošurami. Poleg tega sem ugotovila, da imajo ljudje z demenco na voljo fizične, družabne, izobraževalne in druge aktivnosti. Sorodniki jih spodbujajo k izražanju, kaj želijo početi, prav tako jim aktivnosti predlagajo, kar pogosto vodi do odločanja v njihovem imenu. Ugotovila sem, da ljudje z demenco izražajo skromne želje. K izražanju želj in mnenja jih spodbujajo tudi sorodniki. Pogosto se znajdejo v podrejenem položaju, predvsem zato, ker sorodniki sklepajo, kaj je zanje dobro, saj sami le s težavo besedno izrazijo svoje želje in mnenje. Več pozornosti bi bilo treba nameniti ozaveščanju o sporazumevanju z ljudmi z demenco in večji poudarek dati nebesednemu sporazumevanju v vseh fazah bolezni. Ljudje z demenco so izpostavili, da sorodniki upoštevajo njihove želje in mnenje. Izziv socialnega dela vidim predvsem pri podpori sorodnikom, saj lahko le z ustrezno podporo in možnostmi za razbremenitev kvalitetno skrbijo za ljudi z demenco v domačem okolju.

• Jezik: Slovenski jezik
• Ključne besede: demenca, neformalni oskrbovalci, skupnostna oskrba, avtonomija, samostojnost
• Vrsta gradiva: Diplomsko delo/naloga
• Tipologija: 2.11 - Diplomsko delo
• Organizacija: FSD - Fakulteta za socialno delo
• Kraj izida: Ljubljana
• Založnik: [N. Kosar]
• Leto izida: 2020
• PID: 20.500.12556/RUL-119208
• COBISS.SI-ID: 35340291
• Datum objave v RUL: 04.09.2020

Sekundarni jezik

• Jezik: Angleški jezik
• Naslov: Autonomy and Encouraging Independence of People with Dementia in their Home Environment

Izvleček

In my graduation thesis I researched the topic of autonomy and encouraging independence of people with dementia in their home environment. In theoretical introduction I presented characteristics and definition of dementia. Next I covered communication with people with dementia and continued with the topic of care of people with dementia in home environment. I also presented needs of people with dementia and needs of their relatives. In the last part of theoretical introduction, I presented the importance of autonomy of people with dementia in the context of social work. Main goal of my thesis was to research how does the everyday, of people of dementia and their relatives who look after them in their home environment, look like. I also wanted to understand, which tasks are performed by people with dementia independently and with which they need help from their relatives and how do relatives help them in performing those tasks. I wanted to understand the decision-making behind easier and more complex tasks. With that I wanted to find out the extent of autonomy in everyday life of people with dementia. I also wanted to find out between which everyday activities can people with dementia chose and what is the role of their relatives in decision-making. I wanted to understand how people with dementia can express their wishes and opinion and if their relatives consider their wishes when deciding. Research I performed to obtain answers to above mentioned research questions was qualitative and empirical. In my research I included three people with dementia and four relatives of people with dementia. Therefore, I used guidelines I prepared to interview seven interviewees, who were prepared to take part in my research. After the conclusion of interviews, I qualitatively processed and analysed gathered data. I concluded that relatives of people with dementia face many everyday burdens connected to care of people with dementia, consequently more attention should be put towards their relief, for example with presentation of importance of relief and with getting relatives informed about available forms of help in their area. I also concluded that people with dementia can perform easier tasks independently and need more help from relatives when performing more complex tasks. Another conclusion I made is that, relatives of people with dementia often decide instead of people with dementia, therefore we should put more attention towards the awareness of importance of autonomy of people with dementia when performing everyday tasks. Tools and applications that can help people with dementia with their autonomy in home environment should be pointed out. I also concluded that people with dementia have less options of decision-making in connection to everyday tasks, especially more complex ones. Again, the importance of autonomy in decision-making or at least participation of people with dementia in everyday decision-making should be pointed out. More attention should be put towards education of relatives of people of dementia with the purpose of inclusion of people with dementia in everyday decision-making. This could be achieved with different educational seminars. Importance of autonomy of people with dementia and their inclusion in decision-making could also be pointed out with brochures. In addition to that I found out that people with dementia can choose among different physical, social, educational and other activities. Relatives encourage them to express their wishes. Relatives also suggest activities themselves, which often lead to deciding in their place. I concluded that people with dementia express modest wishes. They are encouraged to express their wishes and opinions by the relatives. People with dementia often find themselves in inferior position, because relatives make decisions based on what they think is good for people with dementia, due to problems that people with dementia have when expressing wishes and opinions. More attention should be put towards awareness of communication with people with dementia and importance of nonverbal communication in all phases of disease. People with dementia emphasised that their relatives abide with their wishes and opinions. In my opinion the main challenge for social work is in the support of relatives of people with dementia, because the only way to achieve quality care of people with dementia in their home environment is with adequate support and possibilities for relief of relatives.

• Ključne besede: dementia, informal carers, community care, autonomy, independence