Insight in coping with dementia: listening to the voice of those who suffer from it.

One of the first authors who wrote about coping in dementia, now thirty years ago, was Verwoerdt (1976, 1981). From a psychodynamic perspective he interpreted specific psychological and behaviour changes in people with dementia as expressions of coping with stress. He described three types of coping strategies: Strategies aimed at mastering and controlling situations that provoke anxiety (e.g. obsessive thoughts and compulsive behaviour); strategies aimed at keeping the threat out of consciousness (e.g. suppression, denial and projection); and regressive strategies (e.g. retreat, regression and giving up). Another author who wrote specifically on coping in dementia at that time was Gainotti (1975). He found that confabulation in people with dementia was associated with premorbid personality. Conscientious people for whom independency, prestige and superiority had been central values were shown to confabulate more often. He therefore considered confabulation to be a sign of reorganisation or coping rather than disintegration. Inspired by Kubler-Ross and based on many clinical interviews with people with Alzheimer’s disease, Cohen, Kennedy and Eisdorfer (1984) conceptualised a series of psychological reactions or phases in people with Alzheimer’s disease: Prediagnosis—recognition and concern; during diagnosis—denial; post-diagnosis— anger, guilt and sadness; coping; maturation and seperation of self, respectively. Kiyak (1988; Kiyak & Borson, 1992) investigated coping in community dwelling persons with dementia and found that acceptance was the primary mode of coping and that emotion-focused strategies, such as becoming angry, bitter or resentful, were much more frequently used than problem-focused coping and hopefulness. In the last two decades several theoretical models have been proposed to understand how people react to and cope with the consequences of their dementia (Finnema, Dröes, Ribbe & van Tilburg, 2000a). Feil (1982), for instance, proposed the Developmental Stage model of Erikson (1963) to understand part of the disoriented and regressed behaviour of elderly people with dementia as resulting from unsolved psychological problems in earlier stages in life. Hall and Buckwalter (1987) developed the Progressively Lowered Stress Threshold (PLST) model based on the coping theories of Lazarus and Selye (Lazarus & Folkman, 1984). The PLST-model describes how the stress threshold is lowered as the disease progresses and therefore specifically focuses on the influence of the care environment. Miesen (1990; see also Browne & Shlosberg, 2006) applied the Attachment theory of Bowlby to explain certain behaviour in dementia, such as parent fixation, as a reaction to feelings of unsafety provoked by the cognitive decline and the environment. Dröes (1991) introduced the Adaptation-Coping model to describe the cognitive, emotional and social adaptation and