Tímarit hjúkrunarfræðinga - 2019, Qupperneq 79

ritrýnd grein scientific paper
tímarit hjúkrunarfræðinga • 3. tbl. 95. árg. 2019 79
Background: alzheimer’s disease is a form of dementia. Compli-
cations of the disease are deterioration appearing as behavioural
changes and increased need for care. family caregivers deal with
complicated grief affecting their psychological and physical health.
Aim: The aim of the study was to examine the experiences of close
family members as caregivers of a loved one with alzheimer and
their perspectives on the service provided.
Method: a qualitative method was utilized. fourteen interviews
were conducted using a semi-structured interview-frame. The text
was analysed with the methods of content analysis and categorised
into a main theme, themes and subthemes describing participants
experiences throughout the disease process as well as their expe-
riences of the service provided through the course of the disease.
Results: results indicated that deep grief characterised the whole
disease trajectory. relatives’ decisions and actions were shaped by
grief and after the death of their loved one a new process of grief
began. The most difficult and hurtful experience was having to
transfer the loved one to a nursing home. Thematic analysis re-
vealed an overarching theme: family caregivers of Alzheimer pa-
tients experience various difficulties because of role changes. five
main themes formed continuity in the family experiences from
the time of diagnosis to the end of life of their loved one. Each
theme contained few sub-themes.
Conclusion: results indicate that to achieve success in the care and
service provided for individuals with alzheimer and their close
family members, insight into the overwhelming grief associated
with the disease is essential. Support needs to be far more struc-
tured than it is today. Solutions need to exist which strengthen
both psychological and physical well-being of those diagnosed
with the disease and their loved ones.
Keywords: relatives, alzheimer, distress, health, difficulties, nurs-
ing home, communications.
Correspondent: elisabet@unak.is
English Summary
gudbjartsdottir, T. S. B., hjorleifsdottir, E.
“This was the most difficult role i have taken on”: Lived experiences of close family members as care-
givers of a loved one with alzheimer and their experiences of the service provided