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Living with Alzheimer’s Disease: Caregivers’ Deepest Feelings
A philosophy-driven interpretation of family caregiver journals
Heide Bursch RN, PhD(c) College of Nursing , The University of Iowa
In written expression, caregivers revealed depths of emotion especially
despair and anger which are not accessible elsewhere in the literature.
The Essence of the Struggle
Major Themes
Being connected or disconnected in friendship
Looking for authenticity for self and the patient
Struggling for self esteem
Impaired capacity to act
Caregivers struggle to keep their voice and stay true to themselves within just
institutions of family and society, religion, or the healthcare system.
Right now I am feeling the anxiety about the
future which will only continuously get worse.
In journaling, they reclaim the institution of language that is denied them by
their patients or dissenting family members and has trapped them in language
of anger or despair.
I have 2 senses, one is that he’s in a facility &
I am free – the other is that I care for him &
am stuck, stuck, stuck.
It is difficult for caregivers to formulate an ethical intention of happiness for
themselves because it is inextricably tied to death or nursing home placement
of their patient.
I am cross that I am letting go of myself. It is
so easy to do nothing, just let go – kind of like
drowning – in very deep water – just relax &
become nothing. I feel it is such a waste of
me – But then it doesn’t really matter, does
it?
The ethical intention of these 24 family caregivers—
to stay real while the patient is disappearing
Background
A Philosophy of Ethics by Paul Ricoeur
• Caring for the patient with Alzheimer’s
disease (AD) presents existential and ethical
challenges to family caregivers.
Just
Institutions
• Healthcare providers need phenomenological
insight into the caregiving experience to
address the negative impact of stress on
caregiver morbidity and mortality.
Other
Self as
Other
Aim
To explore the internal discourse of family
members of AD patients as they reflect about
their caregiver role.
Self
Friendship
• Hermeneutic phenomenology
Self-esteem
Sample and Method
• 24 participants were asked to write of
deepest thoughts and feelings about being a
caregiver of family member with AD for 20
minutes every other day for three occasions.
Caregiver Realities
Hermeneutic Phenomenology
by Paul Ricoeur
• Human beings view themselves in relationship
with self and other.
• We develop self esteem and capacity to act on
a continuum of friendship.
• Capacity to act is expressed in the ethical
intention of “aiming at the good life with and
for others in just institutions.”
• We communicate experience and meaning on a
platform of shared language and common
humanity.
• The hermeneutic arc of explanation and
understanding involves
• Naïve reading
• Structural analysis
• Critical reflection
• Appropriation
• This method has been used by Scandinavian
nurse scientists to illuminate the meaning of
caregiving and ethical and moral experiences.
This study is based on journal writings by participants in the experimental group of a quantitative intervention study
(Butcher, R15NR8213-01) funded by NINR designed to test the effect of journaling on caregiver stress and burden.