Supporting a person affected by Alzheimer’s disease: Specific aspects of natural helpers and support tracks

Research
By Evelyne Malaquin-Pavan, Marylène Pierrot
English

Alzheimer’s disease leads to behavioral, physical, and psychic modifications in the patient that the natural helper (family, spouse, or child) will have to confront throughout the course of the disease. The authors have tried to identify the nature of losses experienced by helpers so as to describe some preventive and curative support tracks. This preparatory research project was conducted with 27 families through semi-directed conversations which enabled them to reveal their difficulties (somatic, emotional, affective, and organizational), their adaptations to the losses of the patient along the course of the disease, and the elements enabling them to maintain (or not) the ill person’s family or close relations. An analysis of results obtained is proposed according to the concepts of adaptation, affection and separation, systemic approach, and coping. The comments and behaviors of helpers are put in relation with the symptoms of mourning, as well as with medical interactions, whether these involve helpers or not. Five chronological moments were identified (before diagnosis, the moment of the diagnosis, remaining at home, admission to an institution, and life in an institution). The period of mourning (connected to the patient’s loss of the recognition of his/her close relations) is mainly experienced as a vector of suffering. As part of the dynamics of social support, the proposed nursing interventions mainly target admission and life within an institution; their aim is to offer adapted support to natural helpers, whether or not they decide to support their close patients throughout the institutionalization. In appendices are given all the key ideas which identify the elements contributing to maintaining the ill person’s helper/close relation link, or accelerating his/her breakdown.

Keywords

  • Alzheimer-natural
  • helpers-family-losses-mourning-pre-mourning-white
  • mourning-affection-adaptation-coping-systems
  • analysis-social
  • support-nursing interventions
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