Everyday life with dementia : Aspects of assessing and understanding the consequences and experiences of living with dementia

Sammanfattning: Everyday life with dementia. Aspects of assessing and understanding the consequences and experiences of living with dementia.The overarching aim of this study was to extend and deepen the understanding of theconsequences and experiences of dementia in everyday life.The first study (I) compared the performances of the instrumental activities of daily life(IADL) in an unfamiliar, clinical, setting and in the familiar home settings of 19 subjectswith suspected dementia. The Assessment of Motor and Process Skills (AMPS) wasused for observing IADL performance. The results showed no overall differencebetween the settings for the group of subjects, while statistically significant differenceswere exhibited for individual subjects.In Study Il, the relationships between the AMPS IADL motor and process abilities,and the cognitive functions, as assessed by 14 neuropsychological tests, wereinvestigated among 52 subjects with mild Alzheimer's disease. Significant predictors ofAMPS IADL ability were psychomotor speed, flexibility, visuoconstructive functionand secondary memory. The cognitive tests explained 24-26% of the variation in AMPSIADL abilities.In Study 111, the consequences of dementia in the everyday lives of two early-onsetparticipants were explored. The everyday occupational difficulties of the participantsand their individually divergent strategies for compensation that were exhibited in thedata were described. The difficulties and the compensational efforts of the twoparticipants seemed to bring about very different consequences for the twoparticipants' everyday living.To understand this difference, further investigations were conducted in Study IV, andthe participants' strategies for managing their images of the occupational self byattributing the disease and its consequences to their ability were discovered andinterpreted.In Study V, the participants' experiences of living with the illness in everyday lifeduring three years were explored by a phenomenological approach, which resulted in aphenomenological structure. This structure revealed an altering meaning of the life-world and a perceived threat to order and control that was met and resisted inindividually different ways.In summary, the results exhibited considerable consequences in everyday life from adementing disease for the afflicted persons, and highly individualised meanings,management strategies and experiences of the changes brought about by the disease. Theenvironment's impact seemed to be too complex to be captured by assessments ofIADL ability in relation to familiarity only. The importance of a meaning-searching andindividualised perspective in therapy and caregiving was discussed and emphasised.KEY WORDS: Strategies for compensation, dementia, environment, everyday life,IADL, illness experience, occupational therapyLouise Nygård, 1996ISBN 91-628-2084-2