出版社：Norsk forening for epidemiologi - The Norwegian Epidemiological Association
摘要：ABSTRACTThe purpose is to study how spouses of persons with dementia cope with losses and caregiving tasks during thedementia process and how their coping is related to the individual's and the couple's history of attachment. Thesample consists of 28 couples where one of the spouses has dementia. The caregiving spouses, aged 60-87, areinterviewed at an early stage of dementia and are followed up every 6-9 months over a periode of three years.The life situation is continually changing, and coping methods are repeatedly challenged. Coping with lossesand readjustments are dependent upon their need of the partner to feel safe. Different patterns of attachment behaviourare seen. Compulsive caregiving spouses attend to their spouse beyond their needs. Spouses in anxiousattachment often panic and try to fight back the symptoms of dementia. A pattern of compulsive self-sufficiencymanifests itself as arguing or withdrawal from the partner. Secure attachment makes it easier to accept thechanges, keep in contact and care. To understand the strains and coping of the spouses, we need to understandhow dementia triggers patterns of attachment behaviour. They need more than information on dementia andtraining in handling various symptoms. They need empathy and individually adapted interventions.INTRODUCTIONEmerging dementia with gradual mental deterioriationand increasing dependency ending in death, is frighteningto those involved, both to the person himself andto the family. The new situation disturbes an establishedbalance in the relationship and interferes withcommunication. Meaningful mutual contact and sharedmeaning is gradually lost.In the book ‘Living in the Labyrinth’ Diana FrielMcGowin, who had received a diagnosis of dementia,writes: ’My every molecule seems to scream out that Ido, indeed, exist, and that existence must be valued bysomeone! Without someone to walk this labyrinth bymy side, without the touch of a fellow traveller whounderstands my need of self-worth, how can I endurethe rest of this uncharted journey?’ (Cited after Kitwood1997, p. 15). This person is in desperate need ofa secure attachment figure to recognize, help and guideher. In this paper we are focusing on the situation ofthe fellow traveller, the chart reader; the spouse.The burdens of family caregiving for persons withdementia are documented in a great number of studies(Morris & Morris 1993). The tasks of a fellow travellerand navigator in the labyrinth of dementia are, not leastdue to strong personal involvement, also hard toendure. Research does not reveal any clear and simpleconclusions on how coping stategies, social support orprofessional interventions may ease the burden (Zaritet al. 1986). By including attachment theory in theframework of analysis, we hope to come closer tounderstanding changing relationships and how burdensmay be eased.From an outside position it is difficult to ascertainwhat the most heavy burdens are. A distinction has tobe made between objective and subjective burden(Duijnstee 1992, Morris & Morris 1993). The objectiveburden, often measured by severity of dementia symptoms,is not strongly associated with subjective burdenas experienced by the caregiver (George & Gwyther1986, Zarit et al. 1986). ‘Over time the meaning givento a stressor seems more important than its occurence’(Lévesque et al. 1998, p. 253). When the goal of the effortsnot only is to give good care, but also to maintaina relationship, burden may have to be measured bydifferent standards. Objective burden, or elements ofobjective burden, may even be evaluated in positiveterms by the caregiver (Farran et al. 1991, Grafström1994, Motenko 1989). Caregivers may need elementsof ‘the burden’ in order to maintain attachment bondsor to fulfill their obligations. Interventions to take suchburdens away, without considering the underlyingneeds or goals, may interfere with the best interests ofthe caregiver – and of the person with dementia.This article is based upon a study with the purposeof finding
