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Kwaliteit van leven bij dementie

Opvattingen onder mensen met dementie, hun zorgverleners en in de literatuur

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Tijdschrift voor Gerontologie en Geriatrie

Samenvatting

In de literatuur worden verschillende definities van ‘kwaliteit van leven’ gevonden. Dit roept de vraag op welke domeinen als belangrijk worden gezien door mensen met dementie zelf. In een exploratieve studie werden de meningen van mensen met dementie (thuiswonend en verblijvend in verpleeghuizen) vergeleken met die van professionele zorgverleners en met meetinstrumenten voor kwaliteit van leven bij dementie. Gegevens werden verzameld door middel van interviews, focusgroepen en literatuurstudie. De meeste kwaliteit- van-levendomeinen die door mensen met dementie belangrijk werden gevonden, werden ook genoemd door de professionele zorgverleners en gevonden in meetinstrumenten. Sommige domeinen werden echter niet genoemd door professionals (‘gevoel voor esthetiek’, ‘financiële situatie’, ‘nuttig zijn/zingeving’ en ‘spiritualiteit’) of niet gevonden in de meetinstrumenten (‘veiligheid en privacy’, ‘zelfbeschikking en vrijheid’, ‘nuttig zijn/ zingeving’ en ‘spiritualiteit’). Dit wijst op mogelijke verschillen in perspectief tussen mensen met dementie enerzijds en hun zorgverleners en onderzoekers anderzijds. Vervolgens is onderzocht in hoeverre professionals zich richten op de kwaliteit-van-levendomeinen die mensen met dementie belangrijk vinden. Zorgverleners van 29 afdelingen en 3 dagbehandelingen van 13 verpleeghuizen en 12 ontmoetingscentra vulden een vragenlijst in (N=374). Zij gaven aan zich tenminste in enige mate te richten op de meeste domeinen die als relevant werden genoemd door mensen met dementie, maar in beperkte mate op ‘financiële situatie’ en ‘nuttig zijn/ zingeving’. Zorgverleners die betrokken zijn bij dagbesteding richtten zich meer dan zorgverleners die 24-uurszorg leveren op de domeinen ‘gehechtheid’, ‘plezier in activiteiten’, ‘gevoel voor esthetiek in leefomgeving’ en ‘nuttig zijn, zingeving’.

Dit artikel is een vertaling en samenvoeging van de volgende eerder verschenen artikelen: Dröes RM et al. Quality of life in dementia in perspective; an explorative study of variations in opinions among people with dementia and their professional caregivers, and in literature. Dementia: The International Journal 2006; 5 (4): 533–558.

Gerritsen DL et al. Differences in perspective: do professional caregivers focus on the Quality of life domains that are important for people with dementia? American Journal of Alzheimer’s Disease and Other Dementias 2007; 22:176–183.

Abstract

Different definitions of quality of life (QOL) are found in the literature. This raised the question which domains are viewed as really important by persons with dementia. In an explorative study the opinions of persons with dementia (community-dwelling and living in nursing homes), were compared to those of professional carers and instruments for QOL in dementia. Data were gathered through interviews, focus groups and literature study. Most QOL-domains mentioned as important by persons with dementia were also acknowledged by carers and in measurement instruments. Some domains, however, were not mentioned by the carers (‘sense of aesthetics’, ‘financial situation’, ‘being useful’ and ‘spirituality’), or not selected in the measuring instruments (‘security and privacy’, ‘self-determination and freedom’, ‘being useful’ and ‘spirituality’). This indicates differences in perspectives on quality of life between persons with dementia, professional caregivers and researchers. Subsequently it was studied to what degree professionals focus on the QoL-domains that persons with dementia consider essential. Caregivers working on 29 units and 3 day care facilities of 13 nursing homes and in 12 meeting centers filled out a questionnaire (N=374). They reported to focus at least to some degree on most domains considered important by persons with dementia. However, little attention was paid to the domains ‘financial situation’ and ‘being useful’. Professionals offering daytime activities focused more than 24-hour care staff on ‘attachment’, ‘enjoyment of activities’, ‘sense of aesthetics’, and ‘being useful’

This article is a translation and merging of 1) Dröes et al. Quality of life in dementia in perspective; an explorative study of variations in opinions among people with dementia and their professional caregivers, and in literature. Dementia: The International Journal 2006; 5 (4): 533–558, and 2) Gerritsen et al. Differences in perspective: do professional caregivers focus on the Quality of life domains that are important for people with dementia? American Journal of Alzheimer’s Disease and Other Dementias 2007; 22:176–183.

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Authors and Affiliations

  1. UMC St Radboud Afdeling Eerstelijnsgeneeskunde/Centrum voor Huisartsgeneeskunde, Ouderengeneeskunde en Public Health, 9101, 6500 HB, Nijmegen, The Netherland

    D. L. Gerritsen

  2. Afdeling Psychiatrie en afdeling Verpleeghuisgeneeskunde/Alzheimercentrum, EMGO+, VU medisch centrum, Amsterdam, The Netherland

    R. M. Dröes

  3. Stichting SHDH, Haarlem, The Netherland

    T. P. Ettema

  4. Verpleeghuis De Schiphorst, Meppel, The Netherland

    E. Boelens

  5. AOC De Pijp, Amsterdam, The Netherland

    J. Bos

  6. Stichting Zorgpartners Midden Holland, Gouda, The Netherland

    L. Meihuizen

  7. Utrecht en Lectoraat Kenniskring Transities in Zorg Hogeschool, Trimbos-Instituut, Rotterdam, The Netherland

    J. de Lange

  8. Alzheimer Centrum Nijmegen Radboud Universiteit, Slingeland Ziekenhuis Doetinchem, Nijmegen, The Netherland

    C. J. M. Schölzel-Dorenbos

  9. Stichting Florence, De Haagse, The Netherland

    F. Hoogeveen

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  1. D. L. Gerritsen
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  2. R. M. Dröes
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Tijdschr Gerontol Geriatr 2010; 41: 241–255

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Gerritsen, D.L., Dröes, R.M., Ettema, T.P. et al. Kwaliteit van leven bij dementie. TIJDSCHR. GERONTOLOGIE GER. 41, 241–255 (2010). https://doi.org/10.1007/s12439-010-0219-z

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