Abstract
Dying with dementia: what do we know about it? Death with dementia is increasingly common, yet research on end of life with dementia and end-of-life care for such patients has been sparse. This article reviews recent studies in this area, most of which were done in US nursing homes. Research focused on five domains: prognosis, decision making, treatment, patient’s health and suffering, and family’s circumstances and satisfaction with care. Prognostication focused on developing risk scores for mortality within 6 months or a year, and while decision making was usually studied qualitatively, the other three domains were largely covered by a series of small, retrospective studies. Future direction in research is discussed, including the ongoing CASCADE project in Boston and the Dutch End of Life with Dementia Study (DEOLD). Both of these prospective studies in nursing home residents assess decision making, as well as factors associated with family’s satisfaction and patient suffering. These studies will provide insight into interventions that are most likely to improve end of life care of patients with dementia in the respective countries and elsewhere.
Tijdschr Gerontol Geriatr 2007; 38: 288-297
Samenvatting
Steeds meer mensen zijn bij overlijden dement. Toch is er tot voor kort nauwelijks onderzoek gedaan naar sterven met dementie en de zorg rondom het levenseinde. In dit overzichtsartikel wordt een stand van zaken gegeven over onderzoek op dit gebied. Er zijn vijf deelgebieden te onderscheiden: prognose, besluitvorming, behandelingen, gezondheidstoestand / lijden van de patiënt, en de situatie van de familie en diens tevredenheid met de zorg. Het meeste onderzoek vond plaats in Amerika, in verpleeghuizen. Er zijn risicoscores voor overlijden binnen een half of één jaar ontwikkeld, en in diverse settings is kwalitatief onderzoek naar besluitvorming uitgevoerd. De laatste drie gebieden zijn voornamelijk in kaart gebracht door een serie kleine, retrospectieve onderzoeken. Twee lopende prospectieve onderzoeken bij verpleeghuispatiënten volgen besluitvorming en gaan niet alleen in op de mate van lijden van de patiënt en (on)tevredenheid van familie bij het levenseinde, maar bovenal op associaties met lijden en (on)tevredenheid. Dit zijn het CASCADE project in Boston en omgeving en het Nederlandse onderzoek 'Zorg bij Dementie'. Deze onderzoeken moeten het mogelijk maken om inzicht te krijgen in de meest geschikte interventies om zorg rondom het levenseinde van patiënten met dementie in de betreffende landen en elders te verbeteren.
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Epidemioloog, wetenschappelijk medewerker, VU medisch centrum, EMGO Instituut, afdeling Verpleeghuisgeneeskunde en afdeling Sociale Geneeskunde
Verpleeghuisarts, hoogleraar Verpleeghuisgeneeskunde, VU medisch centrum, EMGO Instituut, afdeling Verpleeghuisgeneeskunde
Correspondentie: dr.ir. Jenny T. van der Steen, VU medisch centrum, EMGO Instituut, afdeling Sociale Geneeskunde, Van der Boechorststraat 7, 1081BT Amsterdam; tel. 020-4449694; fax 020-4448387;Email j.vandersteen@vumc.nl
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van der Steen, J.T., Ribbe, M.W. Sterven met dementie: wat weten wij ervan?. GEEG 38, 255–263 (2007). https://doi.org/10.1007/BF03074863
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DOI: https://doi.org/10.1007/BF03074863