Existential conserns of families of late-stage dementia patients : - questions of freedom, choices, isolation, death and meaning
L.Albinsson, P.Strang
Bok Engelsk 2002 Lars Albinsson
| Utgitt | 2002
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| Omfang | 19 s.
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| Opplysninger | 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 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 done. The transcripts were analysed 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 non-communicable spouse or parent; the situation of having no other relatives left in life or, the role-reversal, to be parent to your own parent. Thoughts about the impending death were colored 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 meaning (daily routines, positive aspects of responsibility) and meaning in the 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.
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