Doživljanje bolezni in potrebe svojcev oseb z demenco : diplomsko delo

Markelj, Marta (author), Oven, Alenka (mentor), Mihevc, Špela (reviewer)

Uvod: Demenca je kronična ali progresivna bolezen, ki se kaže v obliki motenj višjih kortikalnih funkcij, zlasti spomina, razumevanja, mišljenja, orientacije, računskih in učnih sposobnosti ter sposobnosti govornega izražanja in presoje. Posledično osebe z demenco izgubljajo sposobnosti skrbi zase in samostojnega opravljanja vsakodnevnih aktivnosti. Osebe potrebujejo vedno več nadzora in pomoči pri izvajanju dnevnih aktivnosti, zato so čedalje bolj odvisne od pomoči svojcev. Vloga svojcev pri oskrbi oseb z demenco je z napredovanjem bolezni čedalje večja in pomembnejša. Dolgotrajna oskrba oseb z demenco povzroči pri skrbnikih kronično utrujenost, preobremenjenost, socialno izključenost, finančne obremenitve ter slabšo kakovost življenja. Delovni terapevti dajejo nasvete in informacije o bolezni in usposabljajo, kako se soočiti z boleznijo, nego in oskrbo svojca. Namen: Ugotavljali smo, kakšne izkušnje imajo svojci, ki skrbijo za osebe z demenco, in kako to vlogo doživljajo. Metode dela: V kvalitativni raziskavi smo podatke pridobili s polstrukturiranimi intervjuji s petimi svojci, ki v domačem okolju skrbijo za osebo z demenco. Rezultati: Na osnovi kvalitativne vsebinske analize podatkov smo določili štiri kategorije: seznanjenje z boleznijo svojca, posledice bolezni za osebo z demenco, doživljanje in posledice skrbi za osebo z demenco in pomoč pri skrbi za osebo z demenco. Znotraj kategorij smo določili še podkategorije in kode. Bolezen in skrb za osebo z demenco svojci doživljajo različno. V času oskrbe osebe z demenco se srečujejo z novimi oblikami vedenja, ki jih do nastopa bolezni niso opazili. Zaradi skrbi so preobremenjeni, občutijo utrujenost, veliko stresa, pojavi se izgorelost. Manj časa imajo za opravljanje vsakodnevnih aktivnosti in okupacij ali pa jih morajo zaradi poslabšanja bolezni osebe z demenco opustiti. Zaradi dolgotrajne oskrbe svojca z demenco se jim poslabša kakovost življenja. Delovna terapija je med svojci slabo poznana stroka. Razprava in zaključek: V domačem okolju za osebe z demenco najpogosteje skrbijo svojci, ki se pri tem soočajo s številnimi izzivi, situacijami, ki jih ne pričakujejo, poznajo. Svojci so preobremenjeni in njihove potrebe so pogosto prezrte. Pri skrbi za osebe z demenco v domačem okolju ima pomembno vlogo delovni terapevt, ki z informacijami o bolezni ter nasveti in usposabljanjem glede soočanja z boleznijo in skrbjo za osebo z demenco zmanjšuje breme oskrbe in izboljša kakovost življenja tako svojcev oseb z demenco kot tudi oseb z demenco. Delovni terapevt lahko v družinsko življenje vnese spremembe, ki olajšajo opravljanje vsakodnevnih aktivnosti in tako zvišajo kakovost življenja vsakega družinskega člana.

• Language: Slovenian
• Keywords: diplomska dela, delovna terapija, demenca, skrb za svojca, domače okolje, vsakodnevne aktivnosti
• Work type: Bachelor thesis/paper
• Typology: 2.11 - Undergraduate Thesis
• Organization: ZF - Faculty of Health Sciences
• Place of publishing: Ljubljana
• Publisher: [M. Markelj]
• Year: 2022
• Number of pages: 37 str., [2] str. pril.
• PID: 20.500.12556/RUL-138097
• UDC: 615.851
• COBISS.SI-ID: 114861059
• Publication date in RUL: 10.07.2022

Secondary language

• Language: English
• Title: Disease experience and the needs of the relatives of persons with dementia : diploma work

Abstract

Introduction: Dementia is a syndrome – usually of a chronic or progressive nature that leads to deterioration in cognitive function to such an extent that it interferes with a person's daily life and activities. As dementia progresses an individual will eventually require assistance with activities of daily living. Therefore, an individual could become increasingly dependent on the help of a relative. Long-term care for people with dementia could cause chronic fatigue, social exclusion, financial burdens and poorer health-related quality of life. Occupational therapy practitioners help those with dementia in long-term-care to retain existing function for as long as possible. They act as direct care providers and as consultants of relatives in how to approach the care of their family member. Purpose: The purpose of this paper is to discern the experiences of families while caring for a close relative with dementia. Methods: Qualitative analysis of semi-structured interviews with 5 people caring for a family member with dementia in a home environment had been used. Results: Based on the qualitative content analysis of the data we determined four categories: coping with the illness of a loved one, consequences of the dementia, experience and consequences of caring for a person with dementia and assistance in caring for a person with dementia. Within the categories we also defined subcategories and codes. Everyone experienced the care of a family member with dementia differently. In caring for these family members they met with the types of behaviour that were not present before the disease. Family caregivers experience higher levels of burden and stress as well as exhaustion, even burnout. They have less time for their own daily activities or they have to abandon them completely. As a result they have a lower quality of life. Occupational therapy is a poorly understood profession among relatives who take care about the dementia people. Discussion and conclusion: In a home environment family members are most often caregivers of people with dementia. Caring for a loved one with dementia poses many challenges for families and caregivers. Family members are overburdened and their needs are often overlooked. Occupational therapy can be an important source of support for people with dementia and their families and thus make it easier for both parties. Occupational therapist can increase the quality of life of each family member and therefore could play an important collaborative role in the care of the person with dementia.

• Keywords: diploma theses, occupational therapy, dementia, family caregivers of people with dementia, home environment, daily activities