Som drabbad av en orkan - Åbo Akademi

Abstract
Söderlund, Maud. 2004. Title: As if Struck by a Hurricane: The Situation of the Relatives of Someone
Suffering from Dementia.
Supervisor: Katie Eriksson
The Department of Caring Science, Åbo Akademi University
If the caring sciences’ concept of care of patients is extended to include normal care and assistance for
relatives, it becomes interesting to describe the first hand experiences of relatives in their contact with
professional health care services. The present study, part of a wider project, aims at developing a
model for care-giving appropriate for relatives, especially where a close relative develops dementia
and needs specialized care. The first objective is to try to develop insights into the circumstances in
which relatives find themselves. The second is to try to identify aspects of the impacts suffering and
declining health. The third aim is to describe the content of care from the relatives’ perspective. The
study seeks to illuminate aspects of tending to, playing and situated learning in the specific context as
described by a sample of relatives of dementia sufferers.
The overall design is explorative and descriptive. Abduction, induction and deduction are used in an
effort to understand the relatives’ situation and how they conceive of good caring. This facilitates a
discussion of what characterizes good quality care from a relative’s perspective on caring. The goal is
to develop strategies that may alleviate potential suffering of relatives and help initiate, develop and
conserve and the good health of rela tives giving their experience of caring meaning in a whole life
context. Methodology is based on the assumption that an interpretive approach allows for the
possibility of generating a hermeneutical understanding of the existential conditions of the relatives of
dementia sufferers, that is, an understanding of experience based on the shared circumstances of the
group being studied. Transcribed interviews with 27 relatives about their experiences form the texts
that have been analyzed and interpreted. The goal is to describe common meanings, searching for
statements and concepts that carry significance and create meaning. In this way, that which initially
may seem incomprehensible can be made comprehensible. This is how a relative of someone suffering
from dementia and in need of care themselves described the experience: like being struck by a
hurricane – “life is never the same again”. Their life had changed dramatically.
Results reveal that relatives either find themselves left out – as ‘outsiders’ - in a situation dominated
by chaos and resignation, or they find harmony, strength, vitality and kinship - a feeling of
togetherness. It is also evident that relatives live in a no-mans land, merely existing while at the same
time struggling to find a life. The context of meaning of caring (in care) may be described as an
atmosphere of community, of sharing, as a feeling of shared understanding dependent on presence and
responsibility of carers, or, that despite the bewildering experience involved in being a relative of
someone with dementia, to be in the eye of a hurricane, so to speak, finding a place of calm in order to
rest, regain strength and be reconciled to the devastation in the hurricane’s wake. Eriksson’s care
theory provides a framework for understanding how the suffering of relatives may be relieved when
they experience dignity and personal well-being: when they are affirmed, comforted and feel healed in
the shared situation allowing them the existential experience of their own health.
Key words: caring science, suffering, care, experience of health, relatives of the dement, family
caregiver, hermeneutics.