Family in the role of informal caregivers of people with Alzheimers disease

Alzheimerova bolest najčešći je oblik demencije koja svojim tijekom oboljele pojedince dovodi do potpune ovisnosti o drugima. Osim što utječe na kvalitetu života oboljelog, u vrlo teškom položaju je obitelj koja predstavlja najvažniji resurs u skrbi za osobe oboljele od Alzheimerove bolesti. Pojedinci koji dobrovoljno brinu za članove obitelji koji imaju zdravstvene poteškoće koje zahtijevaju posebnu pažnju ili invaliditet nazivaju se neformalni njegovatelji. Iako su neki aspekti neformalne skrbi pozitivni, većina ih je negativna jer bolest svojom progresijom utječe na zdravlje njegovatelja, uključujući njihovo fizičko, emocionalno, mentalno i financijsko stanje. Zbog razlike u geografskom položaju i sociodemografskim značajkama neformalni njegovatelji u ruralnim područjima susreću se s dodatnim poteškoćama vezanim uz stigmu te nedostupnosti informacija i usluga. Dokazano je da različite intervencije mogu smanjiti teret njegovatelja i poboljšati kvalitetu života. Stoga je cilj rada temeljem pregleda relevantne literature o iskustvima i obilježjima neformalnih njegovatelja osoba oboljelih od Alzheimerove bolesti, izraditi preporuke za unaprjeđenje sustava podrške neformalnih njegovatelja u urbanim i ruralnim područjima. Naglasak se stavlja na razumijevanje poteškoća i utjecaja uloge njegovatelja na kvalitetu života članova obitelji. Naglašavaju se i potrebe koje proizlaze iz takve uloge te važnost sustava podrške u skrbi za osobu oboljelu od Alzheimerove bolesti.Alzheimer's disease is the most common form of dementia which, with its course, leads sick individuals to complete dependence on others. In addition to affecting the quality of life of the patient, in a very difficult position is the family, which is the most important resource in the care of people with Alzheimer's disease. Individuals who voluntarily care for family members who have health problems that require special care or disability are called informal carers. Although some aspects of informal care are positive, most of them are negative because the disease with its progression, affects the health of caregivers, including their physical, emotional, mental and financial condition. Due to differences in geographical location and socio-demographic characteristics, informal carers in rural areas face additional difficulties related to stigma and unavailability of information and services. It has been proven that different interventions can reduce caregiver burden and improve the quality of life. Therefore, based on a review of the relevant literature on the experiences and characteristics of informal carers of people with Alzheimer's disease, the aim of this paper is to make recommendations for improving the support system for informal carers in urban and rural areas. Emphasis is placed on understanding the difficulties and impact of the role of caregiver on the quality of life of family members.The needs arising from this role and the importance of the support system in the care of a person with Alzheimer's disease are also emphasized