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Demenca v družini – izkušnje in potrebe svojcev : izkušnje in potrebe svojcev
ID Hebar, Sara (Author), ID Rapuš-Pavel, Jana (Mentor) More about this mentor... This link opens in a new window

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Abstract
Magistrsko delo z naslovom Demenca v družini – izkušnje in potrebe svojcev se ukvarja z raziskovanjem vpliva demence na družinsko življenje in osvetljuje izkušnje in potrebe svojcev, ki v svojem domačem okolju skrbijo za osebo z demenco. Glas poskušam dati tistim ljudem, ki vsakodnevno bivajo in skrbijo za osebo z demenco. Zgodb svojcev oseb z demenco namreč ne smemo jemati le kot zanimive življenjske izkušnje, temveč moramo ob njih odpreti prostor za razmislek, preučiti že obstoječe oblike pomoči ter snovati nove oblike potrebne podpore. V teoretičnem delu magistrske naloge najprej strnem osnovne informacije o demenci, nato nizam odprte teme pri razumevanju demence kot družbenega pojava. Ob tem prepletam različne diskurze in iščem stičišča med njimi ter pri tem razvidno umeščam tudi socialno-pedagoški pogled. Vsebine poglabljam z ugotovitvami nekaterih domačih in tujih raziskav, ki prikazujejo značilnosti soočanja in vlogo svojcev oseb z demenco. V teoretičnem delu še posebej predstavim, kako demenca lahko zaznamuje družinsko življenje, ranljivost družine in na drugi strani tudi krepi odpornost družine. Posebno poglavje posvetim soočanju s prvimi znaki demence, težavami in potrebami svojcev ter predstavim pravice, ki pripadajo osebam z demenco in njihovim najbližjim. V empiričnem delu dajem prostor svojcem oseb z demenco, analiziram njihove potrebe, občutke in izzive, s katerimi se soočajo ter jih spodbujam, da razmišljajo o oblikah podpore, ki bi jih v danih življenjskih situacijah potrebovali. V magistrskem delu sem uporabila kvalitativni raziskovalni pristop. V raziskovanje sem se vključevala z razumevanjem, da so izkušnje svojcev oseb z demenco zelo raznolike in stresne. Podatke sem pridobila z delno strukturiranim intervjujem in jih analizirala z metodo vsebinske analize. Vzorec vključuje osem oseb, ki neposredno živijo in skrbijo za osebo z demenco. Rezultati pričajo o tem, da so izkušnje bivanja z osebo z demenco zelo raznovrstne in za družino velik izziv, ki zahteva nenehno prilagajanje. Svojci so preobremenjeni in izčrpani ter izražajo potrebo po razbremenitvi in oddihu. Intervjuvanci so podali osebna spoznanja, do katerih so prišli v vseh letih bivanja z osebo z demenco ter navedli predloge, ki med drugim pomembno izpostavljajo izobraževanje in ozaveščanje o demenci in različne oblike podpore, ki jim lahko dajejo priložnosti za izboljšanje kvalitete vsakdanjega življenja. Predlogi so usmerjeni tudi v nadgradnjo že obstoječih sistemsko dostopnih storitev.

Language:Slovenian
Keywords:Oskrba starostnikov, Socialna pedagogika, Demenca, družina, svojci, izzivi, oblike podpore in pomoči
Work type:Master's thesis/paper
Typology:2.09 - Master's Thesis
Organization:PEF - Faculty of Education
Place of publishing:Ljubljana
Publisher:S. Hebar
Year:2024
Number of pages:146 str.
PID:20.500.12556/RUL-156227 This link opens in a new window
UDC:616.892.3-055.5/.7(043.2)
COBISS.SI-ID:195592195 This link opens in a new window
Publication date in RUL:15.05.2024
Views:504
Downloads:127
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Secondary language

Language:English
Title:Dementia in the family – experiences and the needs of relatives : experiences and the needs of relatives
Abstract:
The master's thesis titled »Dementia in the Family - Experiences and the Needs of Relatives« explores the impact of dementia on family life and highlights the experiences and needs of relatives caring for a person with dementia in their home environment. I try to give a voice to those people who live with and care for a person with dementia on a daily basis. The stories of relatives of people with dementia should not be seen as »interesting« life experiences, but as a space for reflection, for examining existing forms of support and for designing new forms of support. In the theoretical part of the thesis, I first summarise the basic information about dementia, then I list the open themes in understanding dementia as a social phenomenon. In doing so, I interweave different discourses and look for intersections between them, while also making the social pedagogical perspective visible. I deepen the themes with the findings of some national and international research, which illustrate the characteristics of coping and the role of relatives of people with dementia. In the theoretical part, I particularly present how dementia can affect family life, the vulnerability of the family and, on the other hand, also strengthen the resilience of the family. I devote a special chapter to coping with the first signs of dementia, the difficulties and needs of relatives and present the rights of people with dementia and their loved ones. In the empirical part, I give space to the relatives of people with dementia, analysing their needs, feelings and challenges and encouraging them to think about the forms of support they might need in their life situations. In my master thesis I used a qualitative research approach. I engaged in the research with the understanding that the experiences of relatives of people with dementia are varied and stressful. I obtained data through semi-structured interviews and analysed them using a content analysis method. The sample includes eight people who directly live with and care for a person with dementia. The results show that the experience of living with a person with dementia is very varied and challenging for the family, requiring constant adaptation. The relatives are overwhelmed and exhausted and express the need for relief and respite. The interviewees gave personal insights into their experiences of living with a person with dementia over the years, and made suggestions that included education and awareness-raising about dementia and different forms of support that can give them opportunities to improve their quality of daily life. The proposals also aim at upgrading the existing systemically accessible services.

Keywords:dementia, family, relatives, challenges, forms of support and assistance

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