Bridging the communicative gap between a person with dementia and caregivers. A nursing perspective

The aim was to explore possible areas and sources that could inform the care for people with dementia. These were the people with dementia themselves, nurses reflective discussions about caring, nurse-patient interaction together with information from close family members, and the previous personality and sense of coherence of people with dementia in relation to behaviour during the disease as related by themselves and/or a family member and the experiences of everyday life for people with dementia still able to talk about their experiences and living as a couple when one of the partners has a dementia disease. The results are based on open-ended personal interview data from the person with dementia (n=11) and their spouses (n=6) regarding experiences of having a dementia disease. A number of 111 direct observations of the interaction between nurse and patient (n=22) during morning care and analysis of notes from clinical supervision sessions, personal interviews with a next of kin (n=40) were collected to study the relation between previous personality and reactions during the dementia disease. The agreement between an elderly persons? (n=77) self-assessment of personality (EPI) and sense of coherence (SOC) and that of a next of kin was also studied (n=77). The life of the people with dementia changed during the course of the dementia and in various ways they struggled to preserve a sense of self in relation to themselves and to others and recreated meaning and identity in their lives. Responsibilities were redistributed with the healthy spouse taking over mutual activities. The nurse-patient encounters demonstrated mutuality and acting at the same pace and unilaterality and acting out of pace with each other. In the reflective discussions nurses spoke about either confirming or threatening the nurse's and/or patient's identity and integrity. Patients experienced as vocally disruptive were more often described as introverted, rigid and with a tendency to control emotions prior to the disease as remembered by a next of kin than those not vocally active. The agreement between self-rating scores and the ratings made by a next of kin in measuring personality and sense of coherence was high or moderate. However information given by a spouse about the meaning of having a dementia disease did not fully agree with the sick partners understanding of it. The findings in the thesis may form a basis for the development of models with various kinds of knowledge framing the foundation for care for people with a dementia disease