L’expérience vécue à domicile par les conjointes de partenaires atteints de la démence de type Alzheimer au moment des soins d’hygiène

Following a review of the literature on hygiene care practices for patients with Alzheimer-type dementia (DAT), there is no choice but to accept the scarcity, even absence of research on the question of hygiene care (HC) dispensed at home by female partners. Nevertheless, the female partner at home is faced with the same problems as workers in health care institutions, and so must cope with the sometimes-difficult behaviours of their partner afflicted with dementia. In practice, nurses ask very little about the difficulties caregivers encounter when providing hygiene care, and this does nothing to lessen the feelings of isolation and distress.  To fill this gap, the present research seeks to understand what the female partners of men with DAT experience when they provide them with HC at home. A second objective is aimed at identifying the dimensions associated with this same experience. A qualitative research approach is used. Participants were recruited through the Alzheimer Societies of Laval and the Laurentides. The strategy for data collection involved conducting two individual, face-to-face interviews, as well as administering a short questionnaire about the sociodemographic aspects. The approach used for analyzing all the data was based on the approach proposed by Miles and Huberman (2003).  In the first instance, the outcomes reveal the profiles of the female partners, which, while variable, present certain similarities. With regard to HC, all have to make sustained, concentrated efforts daily. They must have energy and patience, and rely on personal capacities to maintain positive feelings despite the difficult situations. The outcomes also show that dispensing HC also provokes negative feelings associated with the burden that this type of care brings with it. Nevertheless, female partners implement a variety of strategies to adapt to the stress, such as problem solving, seeking social support and refocusing/reorientation. Five sets of personal and contextual dimensions are associated with the caregiver experience: 1) With respect to the personal characteristics of the female partner, advanced age and the state of physical or psychological health have a negative influence on the HC experience. On the other hand, inherent personal resources (acceptance of the reality, capacity to find meaning in what has happened, ability to improvise and sense of humour) are used either natural or learned; 2) The personal characteristics of the male partner (year of diagnosis, loss of autonomy and behaviour problems) negatively affect the experience; 3) The marital relationship is also of great interest as it appears that a positive pre-diagnosis marital relationship seems to favour positive feelings in the female partner with respect to HC ; 4) The familial dimensions have a favourable impact, with regard to the psychological support received from the family; 5) Finally, the macro-environmental dimensions, including help received from both the wider informal, and the formal network, as well as the various material accommodations in the couple’s physical environment, emerge as having a positive impact.  At the conclusion of the outcome analysis, the author is able to offer a summary of what the couple’s experience.  The discussion involves four issues that emerge from the outcomes observed: impacts of the difficulties encountered during HC on the decision for selecting accommodation, reticence of caregivers to make recourse to resources in the formal network for help with HC, importance of the personal resources of the caregivers, and the potential of the human caring approach in dealing with the challenges arising in the dispensing of HC.

Keyphrases: Alzheimer, Bathing, Hygiene care, Caregivers, Spouse