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.

Living with Alzheimer’s Disease: Caregivers’ Deepest FeelingsA philosophy-driven interpretation of family caregiver journals

Heide Bursch RN, PhD(c) College of Nursing , The University of Iowa

A Philosophy of Ethics by Paul Ricoeur

Friendship

Capacity to

act

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.

Background

• Caring for the patient with Alzheimer’s disease (AD) presents existential and ethical challenges to family caregivers.

• Healthcare providers need phenomenological insight into the caregiving experience to address the negative impact of stress on caregiver morbidity and mortality.

Aim

To explore the internal discourse of family members of AD patients as they reflect about their caregiver role.

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.

• Hermeneutic phenomenology

The Essence of the Struggle

Caregivers struggle to keep their voice and stay true to themselves within just institutions of family and society, religion, or the healthcare system.

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.

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.

The ethical intention of these 24 family caregivers—to stay real while the patient is disappearing

Caregiver Realities

Right now I am feeling the anxiety about the future which will only continuously get worse.

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.

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?

In written expression, caregivers revealed depths of emotion especially despair and anger which are not accessible elsewhere in the literature.

Major Themes

Being connected or disconnected in friendship

Looking for authenticity for self and the patient

Struggling for self esteem

Impaired capacity to act