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VU Research Portal Pain in people with dementia van Kooten, J. 2019 document version Publisher's PDF, also known as Version of record Link to publication in VU Research Portal citation for published version (APA) van Kooten, J. (2019). Pain in people with dementia: Determining the prevalence of pain and its associated factors in nursing home residents with dementia. General rights Copyright and moral rights for the publications made accessible in the public portal are retained by the authors and/or other copyright owners and it is a condition of accessing publications that users recognise and abide by the legal requirements associated with these rights. • Users may download and print one copy of any publication from the public portal for the purpose of private study or research. • You may not further distribute the material or use it for any profit-making activity or commercial gain • You may freely distribute the URL identifying the publication in the public portal ? Take down policy If you believe that this document breaches copyright please contact us providing details, and we will remove access to the work immediately and investigate your claim. E-mail address: [email protected] Download date: 10. Oct. 2021 Pain in people with dementia Determining the prevalence of pain and its associated factors in nursing home residents with dementia Janine van Kooten VRIJE UNIVERSITEIT Pain in people with dementia Determining the prevalence of pain and its associated Colofon factors in nursing home residents with dementia This thesis was prepared at Amsterdam UMC, Vrije Universiteit Amsterdam, at the department of General Practice and Elderly Care Medicine, within the Amsterdam Public Health research institute. The study was funded by grants from Alzheimer Nederland [WE.09-2012-02], Fund NutsOhra care ACADEMISCH PROEFSCHRIFT subsidies [1130-046], Amstelring, Roomsch Catholijk Ouderen Armen Kantoor [ U-9128-2012 HM/lw], Stichting Beroepsopleiding Huisartsen (SBOH), and Stichting Henriëtte Hofje. ter verkrijging van de graad Doctor of Philosophy aan de Vrije Universiteit Amsterdam, The following organizations participated in the study: Amstelring (www.amstelring.nl), Cordaan (www. op gezag van de rector magnificus cordaan.nl), Zonnehuisgroep Amstelland (ww.zhga.nl). prof.dr. V. Subramaniam, in het openbaar te verdedigen Financial support for the printing of this thesis was kindly provided by SBOH and Vivium Zorggroep. ten overstaan van de promotiecommissie van de Faculteit der Geneeskunde op woensdag 29 mei 2019 om 11.45 uur in de aula van de universiteit, De Boelelaan 1105 ISBN/EAN: 978-94-6323-609-6 Cover design and lay-out: Lisette Poelhekken & Ilse Modder (www.ilsemodder.nl) Cover: Jacqueline de Vries – JAC (www.jacquelinedevries.nl) Printed by: Gildeprint Eschede, www.gildeprint.nl door Copyright © Janine van Kooten All rights reserved. No part of this book may be reproduced, stored in retrieval system, or transmitted, Janine van Kooten in any form of by any means, electronic, mechanical, photocopying, recording or otherwise, without prior written permission of the author. geboren te Naarden promotoren: prof.dr. C.M.P.M. Hertogh prof.dr. M.L. Stek copromotoren: dr. M. Smalbrugge dr. J.C. van der Wouden “I don’t mind pain, so long as it doesn’t hurt” Oscar Wilde Contents Chapter 1 General introduction 09 Chapter 6 Evaluation of a pain assessment procedure in long-term care 125 residents with pain and dementia Chapter 2 Pain experience in Dementia Subtypes: A Systematic Review 23 Published as: van Kooten J, Smalbrugge M, van der Wouden JC, Stek ML, Published as: Binnekade TT, Van Kooten J, Lobbezoo F, Rhebergen D, Van Hertogh CMPM. der Wouden JC, Smalbrugge M, Scherder EJA. Evaluation of a Pain Assessment Procedure in Long-Term Care Residents Pain Experience in Dementia Subtypes: A Systematic Review. Current With Pain and Dementia. Journal of Pain and Symptom Management, 2017 Alzheimer Research, 2017;14(5):471-485. Nov;54(5):727-731. Chapter 3 A review of pain prevalence in Alzheimer’s, vascular, 59 Chapter 7 Pain, neuropsychiatric symptoms, and quality of life of 137 frontotemporal and Lewy body dementias nursing home residents with advanced dementia in the Published as: van Kooten J, Binnekade TT, van der Wouden JC, Stek ML, Netherlands: a cross-sectional study Scherder EJ, Husebø BS, Smalbrugge M, Hertogh CM. Published as: van Kooten J, van der Wouden JC, Sikkes SAM, Smalbrugge M, A Review of Pain Prevalence in Alzheimer’s, Vascular, Frontotemporal Hertogh CMPM, Stek ML. and Lewy Body Dementias. Dementia and Geriatric Cognitive Disorders, Pain, Neuropsychiatric Symptoms, and Quality of Life of Nursing Home 2016;41(3-4):220-32. Residents With Advanced Dementia in The Netherlands: A Cross- sectional Study. Alzheimer Disease & Associated Disorders, 2017 Oct- Chapter 4 Pain in dementia: prevalence and associated factors: protocol 81 Dec;31(4):315-321. of a multidisciplinary study Published as: van Kooten J, Delwel S, Binnekade TT, Smalbrugge M, van Chapter 8 General discussion 157 der Wouden JC, Perez RS, Rhebergen D, Zuurmond WW, Stek ML, Lobbezoo F, Hertogh CM, Scherder EJ. Pain in dementia: prevalence and associated Addendum Nederlandse samenvatting 175 factors: protocol of a multidisciplinary study. BMC Geriatrics, 2015 Mar 21;15:29. Curriculum Vitae 179 Chapter 5 Prevalence of pain in nursing home residents: the role of 105 Dankwoord 180 dementia stage and dementia subtypes. Published as: van Kooten J, Smalbrugge M, van der Wouden JC, Stek ML, Hertogh CMPM. Prevalence of Pain in Nursing Home Residents: The Role of Dementia Stage and Dementia Subtypes. Journal of the American Medical Directors Association, 2017 Jun 1;18(6):522-527. 6 7 1 General introduction 1 General introduction progressive neurological/neurodegenerative disorder. The specific symptoms that someone with dementia experiences depend on the parts of the brain that are damaged and the disease that is causing dementia. There are over 50 diseases that may cause dementia, but the most common dementia subtypes This thesis is about pain in people with dementia with a special focus on those are: Alzheimer’s dementia, vascular dementia, frontal temporal dementia and who live in a nursing home. Determining the prevalence of pain and its associated dementia with Lewy bodies.5 Regardless of which type of dementia is diagnosed, factors in nursing home residents with dementia will help optimizing pain each person will experience his dementia in his own unique way. management and might serve as a building block to improve palliative care for people with dementia. This general introduction provides background information Although the disease trajectories are variable, dementia should be viewed as a on nursing home care, dementia, and specifically pain in people with dementia. life-limiting disease, and as there is no curative treatment available, palliative Finally, the objectives and outline of this thesis are presented. care is regarded appropriate.6,7 Palliative care in dementia Palliative care is defined by the World Health Organization as “an approach that Nursing home care for people with dementia in the Netherlands improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of There are several forms of institutional care in the Netherlands. The most suffering by means of early identification and impeccable assessment and intensive form of institutional care is provided in nursing homes. For several treatment of pain and other problems, physical, psychosocial and spiritual”.8 years, the government policy has been to stimulate the use of formal care at In addition to this definition, the European Association for Palliative Care has home instead of institutional care. As a result of this policy, the percentage of presented an 11 domain-framework for palliative care in dementia providing people with dementia that live in a nursing home has not changed in recent guidance for clinical practice, policy and research.9 One of the 11 domains is years. In contrast to this, the volume of care (i.e. the number of people with ‘Optimal treatment of symptoms and providing comfort’ and includes the heavy care needs) has increased by 2.2% per year on average.1 Nowadays, assessment and treatment of frequently reported symptoms such as pain in only people with severe physical disabilities or severe psychogeriatric problems people with dementia. This domain was found important by experts and had the (e.g. dementia) are admitted to nursing homes.1 highest research priority rating. More insight into the assessment and treatment of pain in dementia might serve as a building block to improve palliative care for In 2013, approximately 50,000 people with dementia and dementia-like disorders people with dementia. were living in a nursing home.2 Most of them lived in small-scale special care units, as a result of improvements in dementia care with more attention for residents’ needs and their security and safety.3 The care in dementia special care units is characterized by a multidisciplinary approach, involving nursing staff, Pain in people with dementia elderly care physician, psychologists and paramedical staff.4 Pain in people with dementia is a frequent occurrence and has been cited as one of the main reasons for a decrease in quality of life, especially in residents with dementia who live in a nursing home.10 However, pain in people with dementia is Dementia also known to be difficult