Experiences of informal caregivers of people with dementia in the Gorenjska region

V magistrskem delu proučujem izkušnje neformalnih oskrbovalcev ljudi z demenco v gorenjski regiji. V začetnem delu najprej opredelim pojem demenca. Potem opišem potrebe ljudi z demenco, sporazumevanje z ljudmi z demenco, neformalno oskrbo ljudi z demenco in potrebe oskrbovalcev ljudi z demenco. V nadaljevanju predstavim oblike pomoči in podpore neformalnim oskrbovalcem, dolgotrajno oskrbo ljudi z demenco in socialno delo z ljudmi z demenco. V empiričnem delu sem na neslučajnostnem priložnostnem vzorcu izvedla deset intervjujev z neformalnimi oskrbovalci ljudi z demenco v gorenjski regiji. Skušala sem ugotoviti, kako neformalni oskrbovalci doživljajo oskrbovanje človeka z demenco in kako poteka vsakdanje sporazumevanje s človekom z demenco. S kvalitativnimi intervjuji sem ugotavljala, s kakšnimi težavami se neformalni oskrbovalci soočajo pri oskrbovanju človeka z demenco in kakšne so njihove potrebe. Zanimalo me je, kakšno pomoč imajo na voljo oskrbovalci ljudi z demenco v lokalnem okolju ter kako poskrbijo za svojo razbremenitev. Rezultati raziskave so pokazali, da intervjuvani neformalni oskrbovalci nudijo svojcem kakovostno in ustrezno pomoč. Pri skrbi za svojca z demenco jim pomaga znanje o demenci in predhodne izkušnje dela s človekom z demenco. Sporazumevanje s človekom z demenco zahteva komunikacijske veščine in spretnosti neformalnega oskrbovalca. Večina težav, s katerimi se srečujejo pri oskrbi človeka z demenco, izhaja iz vedenjskih in psihičnih sprememb človeka z demenco. Skrb za človeka z demenco vpliva na duševno zdravje neformalnega oskrbovalca. Formalne oblike pomoči so pogosto nedostopne, tako iz finančnega vidika kot iz vidika dolgih čakalnih vrst. Socialnovarstvene storitve, ki jih ponuja center za socialno delo, neformalni oskrbovalci slabo poznajo oziroma jih ne poznajo. Za razbremenitev neformalni oskrbovalci poskrbijo s sprostitvenimi dejavnostmi, gospodinjskimi in drugimi opravili. Glavni predlogi, ki izhajajo iz raziskave, so: večje sodelovanje med zdravstvenimi ustanovami in centri za socialno delo, vzpostavitev programov pomoči neformalnim oskrbovalcem na centru za socialno delo, pomoč neformalnim oskrbovalcem za preprečevanje izgorelosti, ureditev več enot dnevnega varstva za ljudi z demenco v gorenjski regiji, organiziranje izobraževanj na temo pomena razbremenitve in skrbi zase in širitev programa družabništva, ki ga nudi Spominčica. Občina in centri za socialno delo bi morali neformalne oskrbovalce ljudi z demenco ozaveščati o razpoložljivih oblikah pomoči, ki so jim na voljo v lokalnem okolju.In this master\u27s thesis, the experiences of informal caregivers of people with dementia in the Gorenjska region are studied. In the initial part, the concept of dementia is defined. Then the needs of people with dementia, communication with people with dementia, informal care for people with dementia and the needs of caregivers of people with dementia are described. Later forms of help and support for informal caregivers, long-term care for people with dementia and social work with people with dementia are presented. In the empirical part, ten interviews on non-probability convenience sample with informal caregivers of people with dementia in the Gorenjska region were conducted. Main goal of interviews was to discover how informal caregivers experience caring for a person with dementia and how everyday communication with a person with dementia takes place. Through qualitative interviews, it was discovered what difficulties informal caregivers face when caring for a person with dementia and what their needs are. Main emphasis was put on what kind of help is available to caregivers of people with dementia in the local environment and how they manage their workload. The findings of the research showed that the interviewed informal caregivers interviewed provide quality and appropriate help to their relatives. When caring for a relative with dementia, they are helped by knowledge about dementia and previous experiences working with a person with dementia. Communicating with a person with dementia requires communication skills and the skills of an informal carer. Most of the problems encountered in caring for a person with dementia arise from the behavioral and psychological changes of the person with dementia. Caring for a person with dementia affects the mental health of the informal carer. Formal forms of assistance are often inaccessible, both financially and in terms of long waiting lists. They have little or no knowledge of the social welfare services offered by the social work center. Informal caregivers provide relaxation activities, household and other tasks to relieve the burden. The main proposals arising from the research are: greater cooperation between medical institutions and centers for social work, the establishment of programs to help informal caregivers at the center for social work, help for informal caregivers to prevent burnout, the arrangement of more day care units for people with dementia in the Gorenjska region, organizing training sessions on the importance of relieving stress and taking care of yourself and expanding the socializing program offered by Spominčica. The municipality and social work centers should make informal caregivers of people with dementia aware of the available forms of help available to them in the local environment