English title dissertation Dealing with dementia: effects of integrated emotion-oriented care on adaptation and coping of people with dementia in nursing homes; a qualitative study as part of a randomized clinicla trial.
Name PhD (surname first) de Lange, Jacomine
Doctor is (has been) nurse
Date of promotion 26/05/2004
University Erasmus Universiteit
Promotores prof. dr. H. Rigter, prof. dr. W. van Tilburg, dr. R-M Droes, dr. A Smaling
Abstract (English)

1. determining behavioural indicators in those fields of adaptation and coping of people with dementia for which no standardized measurement instruments were available;
2. investigating whether adaptation to these behavioural indicators is better in emotion-oriented care than in usual care;
3. monitoring the implementation of the integrated emotion-oriented care.
The identification of indicators for the adaptation and coping behaviour of people with dementia in nursing homes was necessary because no standardized measurement instruments were available for positive well-being, changes in communication or quality of life in people with dementia. The existing measurement instruments were all concerned with behavioural problems. We wanted to consider changes in positive behaviour as well as reductions in behavioural problems.
The study was performed on the basis of data collected during baseline with participant observation. Eight nursing-home wards (four experimental and four controls) were involved, with a total of eighty people aged 65 or over, moderate to severe dementia. Standard care situations were observed in each ward over a period of three times nine days, viz.: getting up, going to bed, meals, coffee breaks and other activities in the residents’ lounge, and group activities.
For each of the four adaptive tasks, I constructed categories and subcategories of adaptation and coping behavior to permit empirical specification of the four adaptive tasks from the adaptation-coping model. It may be concluded that in all four tasks some of the persons observed showed effective, adequate coping behaviour. I gave them names like pacemakers, enjoyers, people showing a desired degree of autonomy, carers, socializers, loners and well-integrated people. In all four tasks some people also showed effective but inadequate coping behaviour, i.e. their behaviour elicited negative reactions from others or actually bothered themselves. These people were in unstable equilibrium. I referred to them e.g. as attention-seekers, people suffering from uncertainty, social incompetents, people who get stuck fast or are subject to opposition, obstinate people or untouchables. Those whose adaptation and coping behaviour was neither effective nor adequate formed a third group. They were generally unbalanced. I classified them as the claimers and the critics, those with an undesired degree of autonomy, gossips and trouble-makers, those showing resistance to initiatives and the ill-adapted. A final group consisted of people I called 'unfathomable'. Few conclusions could be drawn from their behaviour, and in general they did not speak at all.
In order to answer the second question all residents were assigned to the categories constructed in Chapter 3 by various researchers during the initial and final measurement phases. The agreement between the scores determined by the different researchers was calculated and discussed. It was then ascertained whether the status of the residents had changed between the initial and final measurement phases, and whether they had improved, deteriorated or remained unchanged. The significance of the changes found was assessed by means of non-parametric analysis using the Mann-Whitney ‘U’ test.
We found the experimental group to perform significantly better in the adaptive task ‘Maintaining emotional balance' (expressing oneself better, remaining better balanced and manifesting acceptable emotions). A statistically significant improvement was also found in the performance of the adaptive task 'Developing an adequate relationship with nursing assistants’. The progress did not consist in a shift from dependence to autonomy, but in a shift from an undesired attitude (dependence or autonomy) to a desired one (dependence or autonomy) – where ‘desired’ and ‘undesired’ are seen from the point of view of the person with dementia, not the carer. The change found in the performance of the adaptive task 'Developing and maintaining social relationships' was not statistically significant, but a trend towards being more open to contacts with other residents was observed. The adaptive task 'Coping with the nursing-home environment' showed no statistically significant change in performance, though individual residents did show progress in the sense of persevering better with certain activities or showing up better in the group context.
Training courses in integrated emotion-oriented care did cause carers to work in a more emotion-oriented way, though this did not apply to everyone and there were differences between wards. Emotion-oriented care will gradually reveal more and more of the way people with dementia perceive and interact with the outside world, helping them to be regarded more as people with a disease and less as patients suffering from a progressive loss of personality.

Download dissertation (Dutch) ProefschriftJdeLange.pdf