Existential Concerns of Families of Late-Stage Dementia Patients: Questions of Freedom,Choices,Isolation,Death,and Meaning

Abstract

Several studies focus on palliative aspects of the caregiver burden of dementia families. However, only few studies have addressed the existential perspective in this situation.

The aim of this study was, therefore, to focus on issues of freedom/responsibility, existential isolation, death, and issues of meaning/meaninglessness.

Method:

Qualitative tape-recorded in-depth interviews with 20 family members were conducted. The transcripts were analyzed with a hermeneutic approach.

Results:

To take responsibility (faithfulness; paying back) was generally perceived as rewarding, but in some cases it was more a matter of duty with elements of guilt and obligation. Existential isolation dealt with the hampered or ended communication with a spouse or parent who was no longer able to communicate; the situation of having no other relatives left in life or, the role-reversal (i.e., to parent your own parent). Thoughts about the impending death were affected by previous experiences, not only by the actual situation. Anticipatory grief was commonplace. Some informants described an increased awareness of the shortness of life, which made them live more intensely in the present. The illness itself was discussed in terms of meaninglessness. Still, many respondents were able to identify meaning in the past (memories), present (daily routines, positive aspects of responsibility) and future (to pass on the patient's lifework).

Discussion:

The study underlines the importance of not only seeing the physical and psychosocial caregiver aspects, but also the existential ones that emerge when confronting impending death. Staff need to be more aware of existential issues in order to support families also in existential crisis.