This analysis of secondary data collected from family members of nursing home residents in North Texas (n = 422) used a mixed methods approach to determine if there is a difference in perspectives on quality care among family members of Alzheimer’s/Dementia Special Care Unit (ADSCU) residents compared to those of non-ADSCU residents. Descriptive content analysis was used identify and condense responses to an open-ended question into four meaningful categories of qualities of care. An independent t-test was employed to determine if there was a difference between family members of ADSCU residents and family members of non-ADSCU residents regarding their rating of their loved-ones’ nursing home on the important qualities of care they identified from the open-ended question. Closed-ended questions were organized into indices of these qualities of care, and ordinary least square regression was employed to determine if there were significant differences between perceptions of family members of ADSCU residents and those of non-ADSCU residents regarding care their loved-ones are receiving on these qualities of care, controlling for frequency of visit.

The aim of this thesis was to acquire knowledge about patient participation in everyday life of persons with dementia living in SCUs in nursing homes. Data collection and analysis in studies I-III was carried out according to Grounded Theory. Data was collected by open non- participant observations during 51 hours, and conversations with 8 residents and 17 health care personnel (I), interviews carried out twice with 12 relatives (II) and 11 nursing personnel (III), and by a study specific questionnaire based on the findings from study I-II to 233 relatives (IV). Descriptive and non-parametric statistics were used (IV). Presence of nursing personnel in body, mind and morality was found to be the prerequisite for patient participation (I). This required personnel with high competence in dementia care, commitment to and interest in the resident, and continuity in their work (I, III). Wellbeing and dignity in the resident’s everyday life was found to be the most important goal, not necessarily a high level of patient participation (II-III). The level of participation had to be adjusted to the resident’s ability and wish to take part in decisions in the very moment. However, the level was often primarily adjusted to suit the personnel’s ideas about how to carry out daily care (I, III). Relatives had an important role in the participation process by interacting, and exchanging information, with the personnel. By forming a basis for individualised care in this way, relatives made a difference to the resident’s everyday life and contributed to their wellbeing and dignity (II-IV). The SCU’s context also affected patient participation (I-IV). Patient participation must be given attention by leaders and be prioritised in dementia care. Nursing personnel can enhance patient participation by promoting relatives’ partaking in the participation process, as this has potential for further contributing to quality of care.

Depuis le début des années 2000 se développe une littérature enjoignant les professionnels au contact des malades d'Alzheimer à "personnaliser" leur prise en charge. Derrière ce terme se cache en réalité une véritable injonction à l'humanisation dans le cadre d'une relation où cette dimension semble faire défaut. Ce qui est demandé au personnel médical et paramédical, c'est un engagement véritable et authentique auprès de cette population. Ce qui est visé, c'est un contrôle des émotions et de leur manifestation.Cette thèse interroge la mise en pratique de la "personnalisation" au sein des unités Alzheimer en EHPAD. S'appuyant sur une démarche qui s'inspire des enquêtes interactionnistes, cette recherche montre non seulement la banalité de l'"engagement" dans ce type d'univers, mais également la complexité de sa mise en oeuvre.Dans la perspective des études sur le care, un travail souterrain, qui reste le souvent invisible, consiste à faire en sorte que la vie de l'étage soit possible pour l'ensemble des individus en présence. C'est cette intelligence de la situation qui conduit, d'un côté, à éloigner le risque de la réification et, de l'autre, à prévenir l'épuisement professionnel.Bien loin de la rhétorique de la "bonne distance professionnelle", l'enquête montre que l'activité des soignants s'articule autour d'un subtil dosage entre engagement et distanciation, pour reprendre la proposition d'Elias (1956). Les émotions sont tout à la fois une nécessité dans le cadre de la réalisation des tâches qui incombent aux professionnels, et une source de danger qu'il faut parfois savoir mettre à distance.L'univers des unités Alzheimer est marqué par un poids relativement important de la régulation autonome par rapport à la régulation de contrôle, pour reprendre la terminologie de Reynaud (2004). Les velléités de formalisation achoppent face au caractère fondamentalement insaisissable et local du care. / In France, since early 2000s spreads a literature inviting professionals in contact with people suffering from Alzheimer disease to "personalize" the way they take care of them. This term refers to a humanization that seems to fade away in this particular context. What is asked to medical and paramedical staff, is a true and authentic commitment toward these patients. What is aimed, is a control of emotions and the way they are expressed.This Ph.D explores the way in which "personalization" is practically accomplished in the context of Alzheimer’s Special Care Units. Based on interviews and observations, it shows the banality of "commitment", and also the complexity of it’s execution. From the ethics of care perspective, an invisible work makes life possible for every protagonist living in that kind of environment. This cleverness of the situation drives away the danger of reification, and prevents burnout.Far from the chimerical "professional distance", this field work shows an articulation between commitment and detachment (Elias, 1956). Emotions appears to be a necessity in order to carry out the tasks, but also a danger that requires to be put away. Thus, Alzheimer’s units are characterized by the relative importance of autonomous regulation, in comparison with control regulation (Reynaud, 2004) : formalization process struggle due to the elusive and local nature of the ethics of care.