Krävande beteenden i samband med demens : förekomst och olika förhållningssätt

Abstract

This thesis based on five studies conducted within community care sought to I) study demanding symptoms and behaviour in persons > 65 years in home care or sheltered housing and work load from a staff perspective over a decade, II) study caregiver reflections when dealing with Behavioural and Psychiatric Symptoms of Dementia (BPSD), III) illuminate interactions between individuals with BPSD and caregivers who reported problems dealing with such behaviour and caregivers who did not, IV) obtain insight into their reasoning from their respective interactions with the residents. A further aim was to discuss their reasoning in relation to each other and V) describe documented experiences from giving tactile stimulation to five randomly selected residents with BPSD and changes seen in these persons during the intervention period.

Demanding symptoms and behaviours of older adults > 65 years in home care or sheltered housing were assessed from a staff perspective together with workloads in 1993 (= 1187 older adults) and 2002 (= 1017 older adults). Data for the qualitative studies were obtained by interviewing 15 formal caregivers at three care units, one unit where caregivers (n=5) (group 1) felt they were able to deal with aggressive behaviour and two units where an unexpected high level of aggressive behaviour had been reported (study I) and the caregivers felt the BPSD was problematic (n=10) (group 2).

Videotaping of caregivers at a unit who felt they were able to interact in a positive way (group 1) respectively recordings from a unit where the caregivers had experienced aggressiveness as difficult to handle (group 2) were conducted during morning care sessions (=6 video recordings). One resident and three caregivers (group 1), and one resident and six caregivers (group 2) participated. The interviews and the videotapes were transcribed and analysed using a phenomenological-hermeneutic approach. Individual 'stimulated recall' interviews were carried out with all the caregivers who had been videotaped (n=9). Thematic content analysis was used to analyse the interviews. Study V followed the caregivers' documentations from five randomly selected residents living in a sheltered housing facility for persons with BPSD that received tactile stimulation for 28 weeks. The documentations were analysed by qualitative content analysis.

Findings indicated that demanding symptoms had in general increased from 1993 to 2002, as well as the physical and the psychological workloads (I). The interviews indicated the importance of balance between demands and competence for the residents as well as for the caregivers if a positive relationship is to develop. Support was crucial, not only for the residents but also for caregivers if they were expected to deal with demanding situations (II). The interactions indicated as either being in a positive (group 1) or a negative spiral (group 2). Group 2 caregivers focused on accomplishing the task, which was the goal itself, while group 1 caregivers focused on how they could reach their goal in the best way, based on the resident's demands and wishes. Power in different ways was central, either in a positive way, as a way to involve the other (group 1) or in a more negative way, making decisions over the other (group 2) (III). Group 2 focused on their duties and seemed unwittingly to prevent positive interactions with the resident. Group 1 seemed to be accustomed to being able to reflect and sustain positive interactions with the residents (IV).

Residents displayed signs of positive feelings and relaxation and fell asleep almost every time they received tactile stimulation. The caregivers felt they were able to interact with the residents in a more positive way and that they had a warmer relationship with them (V). Indicators are that caregivers who strive to understand the meanings behind behaviours, who master the necessary care-giving skills, and can implement them, will be much more successful at curbing distressing behaviour, than caregivers who merely act in a task oriented fashion. The caregivers are, however, also dependent on effective organisational, managerial and collegial support if the are to be able to achieve positive relationships and a high quality of nursing care that is also experienced as positive by the persons with dementia.