Strain of caregivers caring for a person with dementia in domestic environment

Uvod: S podaljševanjem življenjske dobe se je povečala prisotnost kroničnih nenalezljivih bolezni. Med njimi izstopa demenca, ki usodno spremeni življenje bolnika in njegove družine. Svojci se za oskrbo v domačem okolju odločijo predvsem zaradi ljubezni in navezanosti na oskrbovanca. Skrb za osebo z demenco zaradi kronične narave bolezni od družine zahteva vedno večje število ur namenjenih oskrbovanju, hkrati pa so družinski oskrbovalci izpostavljeni vse večjim fizičnim in psihičnim naporom, kar vodi v izgorelost. Namen: Namen diplomskega dela je raziskati, kaj je za oskrbovalce pri oskrbi osebe z demenco največja oziroma najmanjša obremenitev in kako so starost, spol in sorodstvena vez oskrbovalca povezani s stopnjo obremenitve. Metode dela: Za pridobitev podatkov je bila izvedena spletna anketa z vprašalnikom Indeks obremenjenosti oskrbovalcev. Vprašalnik sestavlja 13 trditev, ki se navezujejo na fizično, psihično, časovno, finančno in osebno obremenjenost oskrbovalca. Sodelujoči za vsako trditev določi stopnjo strinjanja na 3-stopenjski lestvici (pogosto, včasih in nikoli). Odgovor pogosto se točkuje z 2 točkama, odgovor včasih z 1 točko, odgovor nikoli pa z 0 točkami. Rezultati: V anketi je sodelovalo 100 ljudi, 81 % žensk in 19 % moških v starostnem razponu od 20 do 89 let. Sodelujoči največ obremenitev doživljajo zaradi spremenjene družinske dinamike. Nasprotno najmanj obremenitev občutijo na finančnem področju. Kot najbolj obremenjene skupine oskrbovalcev glede na sorodstveno vez izstopajo možje, hčere in žene bolnikov. Največje število točk obremenjenosti so dosegli oskrbovalci, ki pripadajo starostni skupini od 60 do 69 let. Spol oskrbovalca pri stopnji obremenjenosti ne igra vloge, saj med posameznima skupinama ni statistično značilne razlike. Razprava in zaključek: Vpliv oskrbe osebe z demenco se pri oskrbovalcih odraža na vseh področjih življenja. Stopnja obremenjenosti je odvisna od številnih dejavnikov, od individualnih lastnosti oskrbovalca, dolžine oskrbovanja pa vse do stadija demence. Obremenjenosti se med izvajanjem oskrbe ni mogoče izogniti, zato je zelo pomembno, da se oskrbovalec in družina o bolezni dobro informirajo in pravočasno poiščejo pomoč. Zaradi pomembnosti samopomoči bi bilo v nadaljnih raziskavah smiselno raziskati različne oblike pomoči, ki so v Sloveniji dostopne svojcem oseb z demenco.Introduction: Extension of life expectancy coincides with increase of chronic non-infectious diseases. Among them dementia is one that gravely affects the life of the patient as well as his family members. Family members decide for domestic care predominantly due to love and connection to the caretaker. Taking care for a person with dementia is increasingly time consuming, due to the nature of the condition and it brings also developing physical and mental stress leading to burnout syndrome. Purpose: Purpose of this thesis was to explore which factor causes the highest and lowest level of strain on caregivers caring for a person with dementia in domestic environment. In additional influence of age, gender and family connection was considered. Methods: Data were obtained with an online survey The Modified Caregiver Strain Index, which consist of 13 gradable statements regarding impact of caregiving on physical, mental, time, financial and personal impact of the caregiver everyday life. For each statement, the caregiver evaluates their response on 3-point scale (often, sometimes and never). The answer often is assigned 2 points, the answer sometimes 1 point, and the answer never counts as 0 points. Results: There were 100 participants in the survey, 81% female and 19% male in the age range from 20 to 89 years. Participants in majority indicated, that change in the dynamic of their family environment presents the highest level of strain, as it one of the parameters that most certainly changes during domestic caregiving. Husbands, daughters and wives stand out as the most burdened groups according to the survey as well as the caregivers in the age range of 60-69. Results have also shown that gender does not influence the expressed level of constrain, as data did not show any statistical significant difference between various groups. Discussion and conclusion: Caregiving affects the caregiver life in more than one area. Level of burden depends from many factors e.g. caregivers’ character, period of caregiving and progress of dementia. During caregiving period some level of strain cannot be avoided, but can be reduced with sufficient information and expectations regarding the medical condition and obtaining support on time. Self-support for dementia caregiver is definitely an area for additional research and improvement within Slovenia