CH 1. General Introduction

Transcription

1 CH 1 General Introduction

2 Chapter 1 The work in thesis focuses on pain and challenging behaviour in advanced dementia. More specifically, it investigates the effectiveness and implementation of a stepwise multidisciplinary and multicomponent intervention for pain and challenging behaviour in patients with advanced dementia residing in nursing homes. Dementia, challenging behaviour and pain Dementia is defined as a clinical syndrome due to disease of the brain, usually of a progressive nature, which leads to disturbances of multiple higher cortical functions, including memory, thinking, orientation, comprehension, calculation, learning capacity, language, and judgment. 1 According to estimates of the World Alzheimer Report 2015, worldwide there are 46.8 million people with dementia, and this number is expected to increase to 74.7 million people by 2030 and to million by Currently, 5-8% of people aged over 60 years have a diagnosis of dementia, rising to over 50% in the 90+ group. 2,3 For the near future, these estimates seem correct; however, on the longer term these estimates remain debatable. Investigation of these trends over time is challenging, as changes in diagnostic criteria and other methodological variations could affect these estimates of prevalence and incidence. Recent reports suggest an age-specific decline of the incidence rates of dementia in high-income countries, 4-6 i.e. the risk of being diagnosed with dementia at a certain age appears to decrease slightly. However, no evidence has been found for a decline in incident rates in the Netherlands. 4,6 Nevertheless, this does not mean that dementia is less prevalent. 2,5,7,8 It is estimated that demographic changes in the coming decades and the increasingly ageing population will lead to a substantial growth in the absolute number of people affected. 5,9 Currently, in the Netherlands there are approximately people with dementia, of whom reside in nursing homes. 10 The most common cause of dementia is Alzheimer s Disease; other types include Vascular Dementia, Frontotemporal Dementia and Lewy Body Dementia (although mixed versions are also prevalent). Challenging behaviour In all subtypes of dementia, neuropathological changes in the brain are responsible for the decline in function. Besides the deleterious effects on cognition, the neuropathology of dementia is (partially) responsible for numerous other symptoms, such as behavioural disturbances, psychological problems, and the breakdown of language and communication. Symptoms include delusions, hallucinations, agitation/ aggression, dysphoria/depression, anxiety, euphoria/elation, apathy/indifference, disinhibition, irritability/lability, aberrant motor behaviour and night-time disturbances. In patients with dementia, up to 80-85% have one or more of these (clinically relevant) symptoms In addition to these neuropathological changes in the brain, contextual factors, like other health, psychosocial and environmental factors contribute to (or 11

3 General Introduction maintain) an episode of challenging behaviour. The changes in behaviour and emotional/ psychological problems have been categorized in many ways. For example, they have been summarized as Behavioural and Psychological Symptoms of Dementia. Alternatively, they have been referred to as neuropsychiatric symptoms or as challenging behaviour. 11,12,15 However, among the general public, memory dysfunction is the best-known symptom; nevertheless, the above-mentioned symptoms have the highest impact on the quality of life 16,17 and are one of the main reasons for seeking help and institutionalization. 17,18 Furthermore, memory dysfunction is the symptom that most often leads to increased demands on staff resources, increased job-related stress, burnout, and staff turnover; these symptoms are often extremely distressing for both the individual and their caregivers Therefore, in this thesis, all these symptoms are collectively referred to as challenging behaviour, as they present a substantial challenge to the individual with dementia, as well as to the informal/formal caregivers that support these women. 1 1 Pain and pain assessment A particular challenge in the care of patients with dementia is the presence of pain. The prevalence of pain, particularly chronic pain, is strongly related to age, aff ecting the oldest population the hardest, with prevalence rates of 72% above age 85 years. 23,24 Given these circumstances, pain is very common among people with dementia. Pain in dementia is often expressed through behavioural disturbances. In fact, pain is thought to be one of the most important causes of challenging behaviour. 25 However, this causal link is often diffi cult to identify due to the complexity of the challenging behaviour, which changes over the stages of dementia and is often more frequent in the later stages of the disease. 26 Challenging behaviours that arise as a result of pain, such as agitation and aggression 27,28, can be extremely distressing for both the individual and their caregiver, and can lead to inappropriate prescribing of antipsychotic medication instead of adequate pain treatment. 29 Whilst these medications do have their place in the treatment of severe or persistent psychiatric symptoms, they are also associated with substantial side-eff ects in persons with dementia, including increased mortality, cerebrovascular events, and falls. 27,30 Especially in the more advanced stages of the disease, detection of pain is diffi cult due to severe cognitive and communication problems. 31 As a result, commonly used selfreport assessment tools are often either not valid and/or not reliable, and are also diffi cult to use. However, assessment of pain is the prerequisite for appropriate pain treatment. Pain assessment requires an understanding of the neurobiology of the pain experience 1 In the Dutch nursing home population about 76% is female. Therefore, in this thesis, such residents are referred to as women or her. 12

4 Chapter 1 and the behavioural expression of pain 32, together with knowledge of the clinical assessment instruments Therefore, it is recommended to combine different assessment techniques to detect pain in dementia. 36 These techniques include observation of both verbal (e.g. calling out ) and non-verbal (e.g. frowning, agitation) behaviour, with physical examination 37 that can focus on musculoskeletal conditions, such as arthritis and osteoporosis, respiratory and urinary tract infection, injury from falls, orofacial pain, and pressure ulcers. 25 A similar complexity applies to the treatment of chronic pain in dementia, which justifies a combination of a non-pharmacological and a pharmacological approach. 38,39 Particularly in the advanced stages of dementia, with a high prevalence of multi-morbidity and polypharmacy, non-pharmacological interventions may have safety benefits. 38 To summarize: both pain and challenging behaviour are highly prevalent in dementia 40, and the entanglement between the two makes their relationship (as well as their assessment and treatment) complex and difficult for caregivers. 25,41,42 However, a literature review that preceded the start of this thesis, revealed that only one intervention was available that specifically acknowledges this complexity. 43 This implies that there is a considerable demand for useful guidelines, protocols, etc., to help caregivers deal with these complex and challenging situations. Serial Trial Intervention (STI) The only intervention that acknowledges this complexity of both assessment and treatment of pain in the advanced stages of dementia, and combines nonpharmacological and pharmacological interventions for pain, unmet needs and challenging behaviour, is the Serial Trial Intervention (STI) 44, developed by Christine Kovach in the USA. The STI is designed to assess and manage unmet needs in residents with advanced dementia who are no longer able to clearly or consistently communicate pain and other unmet needs through spoken language. The STI directs nurses to respond to these behavioural symptoms by implementing multiple levels of assessment and treatment. It allows nurses to tailor both assessment and treatment components to the individual resident. The steps are designed to identify and treat the underlying problem and, when an underlying problem is not readily apparent, trials of non-pharmacological treatments, pharmacological treatments and/or consultation are implemented. 44,45 In a randomised controlled trial (RCT), Kovach et al. show that this intervention (applying a stepwise protocol in patients with dementia in nursing homes in the USA) can decrease discomfort and expressions of challenging behaviour. 46,47 Moreover, they also show that this stepwise intervention supports and assists healthcare professionals to handle these complex problems and challenges

5 General Introduction However, the organisation, availability and level of education of the staff, as well as the availability of additional resources, differ across settings and countries Therefore, to apply this method in the Netherlands, the STI 44 had to be translated and adapted for the Dutch language and the Dutch nursing home care setting. The Dutch version of the STI is called STApsgewijs Onbegrepen gedrag en Pijn bij dementie de baas! (STA OP!) Nursing home care setting Although the exact defi nition of a nursing home differs between countries, generally, a nursing home is seen as a facility that admits mainly older people who require assistance with (instrumental) activities of daily living and have identifi able health needs. They provide 24-hour, 7-days/week functional support in a domestic-styled environment 53,54, which can be organised in traditional large-scale units, small-scale units, or in more innovative settings (such as a care farm). The multidisciplinary and complex long-term care for residents with advanced dementia or psychogeriatric care is delivered on specialised care units, while care for residents with chronic physical problems is delivered on somatic units. In addition, Dutch nursing homes also provide short-term care and services, such as geriatric rehabilitation. 55 The nursing staff provides most of the 24-hour care: in the Netherlands, this consists mainly of: i) persons with a vocational education plus 2-3 years training as a certifi ed nurse assistant ( verzorgende ; Dutch qualifi cation level 3 56 ), or ii) nurse assistants ( Helpende ; Dutch qualifi cation level 2 56 ), and (sometimes) iii) registered nurses with 4-years vocational training ( MBO-verpleegkundige ; Dutch qualifi cation level 4 56 ) or a Bachelor s degree (HBO-verpleegkundige; Dutch qualifi cation level 6 56 ). In addition, typical for Dutch nursing homes is that they employ specialised elderly care physicians to provide and coordinate medical care.55,57,58 Furthermore, most nursing homes also employ other healthcare professionals, such as psychologists, physiotherapists and occupational therapists. Altogether, these professionals form the multidisciplinary care team 51,52,55,59 which provides continuous long-term care in these homes. However, in order to meet the complex (care) needs of nursing home residents with advanced dementia and challenging behaviour and/or with pain, enhancing the knowledge and competencies of both nursing staff and other healthcare professionals is of considerable importance Aims and research questions The overall aim of this thesis is to investigate the implementation and eff ectiveness of the stepwise, multidisciplinary and multicomponent intervention for pain and challenging behaviour in dementia, the STA OP! (acronym for the adapted and translated version of the STI). 14

6 Chapter 1 The main research questions addressed in this thesis are 2 : 1. What is the current state-of-the-art with respect to challenges related to pain management in dementia? 2. What is the current state of evidence regarding the effectiveness of interventions targeting pain on the outcome behaviour, and interventions targeting behaviour on the outcome pain, in dementia? 3. Does implementation of the STA OP! lead to a reduction of pain and improvement of pain management in residents with advanced dementia? 4. Does implementation of the STA OP! lead to fewer expressions of challenging behaviour, better mood, and less use of antipsychotics in residents with advanced dementia? 5. With regard to the implementation process of the STA OP! intervention: a. What are the experiences of healthcare professionals with implementation of STA OP! and its actual use in daily practice? b. Is STA OP! delivered and implemented as intended at the level of the team and of the individual resident/professional? c. What facilitating or impeding factors are associated with implementation at the level of the organisation, the team, or the individual resident/professional? Outline of this thesis To answer the first two research questions, two literature studies were conducted. To investigate research questions 3 and 4, a cluster RCT was performed involving nursing home residents with advanced dementia, and with pain and/or challenging behaviour; to examine the final question, a process evaluation was performed alongside the cluster RCT in which we describe in detail the implementation process of the STA OP! Chapter 2 discusses the evidence from relevant and recent literature regarding the challenges of pain management in dementia. The review focuses on four main perspectives that are critical to this discussion, i.e. 1) The biological perspective: the effect and consequences of neuropathological changes in dementia on pain; 2) The assessment perspective: the challenges of pain assessment in dementia; 3) The organisational and educational aspects that challenge pain management in dementia; and 4) Pain management in practice. Chapter 3 provides a comprehensive overview 2 When studying complex multicomponent interventions, it is important to investigate how and to what extent the intervention is implemented, and to identify and understand the factors that facilitate or impede implementation, since care innovations do not automatically find their way into practice. In order to describe the implementation process of the STA OP! intervention, we added a new research question to the five described in the study protocol (Chapter 3). Due to the addition of this question, the limited funding and the renewed regulations regarding PhD theses, we skipped the questions included in the study protocol a) if use of STA OP! resulted in a change in the use of non-pharmacological comfort interventions, b) if the effect of the intervention was moderated by the Apo-E4 status of the patient, and c) if the use of STA OP! led to a change in the quality of life in patients with dementia. The latter item is part of a thesis on the quality of life in advanced dementia 15

7 General Introduction of the current state of evidence regarding the eff ectiveness of interventions targeting pain on the outcome behaviour, and the eff ectiveness of interventions targeting behaviour on the outcome pain, in dementia. In Chapter 4 we describe the design of the STA OP! study, a cluster RCT that investigates the eff ectiveness of the stepwise multidisciplinary and multicomponent intervention for pain and challenging behaviour in advanced dementia. Chapters 5 and 6 report the results of the cluster RCT. Chapter 5 focuses on the eff ects of the intervention on challenging behaviour, symptoms of depression and psychotropic medication use, and Chapter 6 reports the effects of the intervention on pain, pain management, and pain medication. Chapter 7 describes in detail the implementation process of the STA OP! intervention, i.e. whether the intervention was implemented as planned, and the facilitating/impeding factors, as well as the experiences of healthcare professionals regarding implementation of the intervention and its usage in daily practice. The last chapter of this thesis, Chapter 8, presents a summary and general discussion of the results of the studies described in this thesis. General fi ndings are put into context, methodological considerations and clinical implications are addressed, and some recommendations are made for future studies. 1 16

8 Chapter 1 REFERENCES 1. World Health Organization (WHO). International statistical classification of diseases and related health problems. World Health Organization Prince MJ. World Alzheimer Report The global impact of dementia: an analysis of prevalence, incidence, cost and trends. Alzheimer's Disease International World Health Organization (WHO). World Alzheimer Report Dementia: A public health priority. World Health Organization van Bussel EF, Richard E, Arts DL, et al. Dementia incidence trend over in the Netherlands: Analysis of primary care data. PLoS medicine 2017; 14(3): e Prince M, Ali GC, Guerchet M, Prina AM, Albanese E, Wu YT. Recent global trends in the prevalence and incidence of dementia, and survival with dementia. Alzheimer's research & therapy 2016; 8(1): Wu YT, Beiser AS, Breteler MMB, et al. The changing prevalence and incidence of dementia over time - current evidence. Nature reviews Neurology 2017; 13(6): Hofman A, Brusselle GG, Darwish Murad S, et al. The Rotterdam Study: 2016 objectives and design update. European journal of epidemiology 2015; 30(8): Poos R. Dementie in Nederland: het verhaal achter de cijfers. Rijksinstituut voor Volksgezondheid en Milieu (RIVM). deltaplandementienl/nl/home/ dementienederland-het-verhaal-achter-de-cijfers Accessed on July 18th Langa KM. Is the risk of Alzheimer's disease and dementia declining? Alzheimer's research & therapy 2015; 7(1): Alzheimer Nederland. [Facts and Figures about dementia]. Dutch. alzheimer-nederland.nl. Accessed on July 18th Kverno KS, Rabins PV, Blass DM, Hicks KL, Black BS. Prevalence and treatment of neuropsychiatric symptoms in advanced dementia. J Gerontol Nurs 2008; 34(12): 8-15; quiz Norton MJ, Allen RS, Snow AL, Hardin JM, Burgio LD. Predictors of need-driven behaviors in nursing home residents with dementia and associated certified nursing assistant burden. Aging Ment Health 2010; 14(3): Wetzels RB, Zuidema SU, de Jonghe JF, Verhey FR, Koopmans RT. Course of neuropsychiatric symptoms in residents with dementia in nursing homes over 2-year period. Am J Geriatr Psychiatry 2010; 18(12): Zuidema SU, de Jonghe JF, Verhey FR, Koopmans RT. Neuropsychiatric symptoms in nursing home patients: factor structure invariance of the Dutch nursing home version of the neuropsychiatric inventory in different stages of dementia. Dement Geriatr Cogn Disord 2007; 24(3): Zuidema SU, Derksen E, Verhey FR, Koopmans RT. Prevalence of neuropsychiatric symptoms in a large sample of Dutch nursing home patients with dementia. Int J Geriatr Psychiatry 2007; 22(7):

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10 Chapter AGS. The management of persistent pain in older persons. J Am Geriatr Soc 2002; 50(6 Suppl): S Hadjistavropoulos T, Herr K, Prkachin KM, et al. Pain assessment in elderly adults with dementia. Lancet neurology 2014; 13(12): Scherder E, Herr K, Pickering G, Gibson S, Benedetti F, Lautenbacher S. Pain in dementia. Pain 2009; 145(3): Defrin R, Amanzio M, de Tommaso M, et al. Experimental pain processing in individuals with cognitive impairment: current state of the science. Pain 2015; 156(8): Rubey RN. Treatment of chronic pain in persons with dementia: an overview. Am J Alzheimers Dis Other Demen 2005; 20(1): Edwards CL, Johnson S, Goli V, Byrd G. Extending the science beyond medication: in response to "Treatment of chronic pain in persons with dementia: an overview" by Robert N. Rubey, MD, MA. Am J Alzheimers Dis Other Demen 2005; 20(3): ; author reply van Kleef M, Geurts JW. [Useful guideline for treatment of pain in vulnerable elderly people]. Ned Tijdschr Geneeskd 2012; 155(35): A Rajkumar AP, Ballard C, Fossey J, et al. Epidemiology of Pain in People With Dementia Living in Care Homes: Longitudinal Course, Prevalence, and Treatment Implications. J Am Med Dir Assoc 2017; 18(5): 453 e1- e Tosato M, Lukas A, van der Roest HG, et al. Association of pain with behavioural and psychiatric symptoms among nursing home residents with cognitive impairment: results from the SHELTER study. Pain 2012; 153(2): van Dalen-Kok AH, Pieper MJ, de Waal MW, Lukas A, Husebo BS, Achterberg WP. Association between pain, neuropsychiatric symptoms, and physical function in dementia: a systematic review and metaanalysis. BMC Geriatr 2015; 15: Francke A, de Veer A, Achterberg W, Ribbe M. Pijn bij dementie. Tijdschrift voor VerpleeghuisGeneeskunde 2006; 31(6): Kovach CR, Noonan PE, Schlidt AM, Reynolds S, Wells T. The Serial Trial Intervention: an innovative approach to meeting needs of individuals with dementia. J Gerontol Nurs 2006; 32(4): 18-25; quiz Kovach CR, Simpson MR, Joosse L, et al. Comparison of the effectiveness of two protocols for treating nursing home residents with advanced dementia. Res Gerontol Nurs 2012; 5(4): Kovach CR, Cashin JR, Sauer L. Deconstruction of a complex tailored intervention to assess and treat discomfort of people with advanced dementia. J Adv Nurs 2006; 55(6): Kovach CR, Logan BR, Noonan PE, et al. Effects of the Serial Trial Intervention on discomfort and behavior of nursing home residents with dementia. Am J Alzheimers Dis Other Demen 2006; 21(3):

11 General Introduction 48. Simpson MR, Stevens P, Kovach CR. Nurses' experience with the clinical application of a research-based nursing protocol in a long-term care setting. Journal of clinical nursing 2007; 16(6): Froggatt K, Payne S, Morbey H, et al. Palliative Care Development in European Care Homes and Nursing Homes: Application of a Typology of Implementation. J Am Med Dir Assoc 2017; 18(6): 550 e7- e Han K, Trinkoff AM, Storr CL, Lerner N, Johantgen M, Gartrell K. Associations between state regulations, training length, perceived quality and job satisfaction among certifi ed nursing assistants: crosssectional secondary data analysis. Int J Nurs Stud 2014; 51(8): Ribbe MW, Ljunggren G, Steel K, et al. Nursing homes in 10 nations: a comparison between countries and settings. Age Ageing 1997; 26 Suppl 2: Pieper MJ, Achterberg WP, Francke AL, van der Steen JT, Scherder EJ, Kovach CR. The implementation of the serial trial intervention for pain and challenging behaviour in advanced dementia patients (STA OP!): a clustered randomised controlled trial. BMC Geriatr 2011; 11: Sanford AM, Orrell M, Tolson D, et al. An international defi nition for "nursing home". J Am Med Dir Assoc 2015; 16(3): Froggatt K, Reitinger E, Heimerl K, et al. Palliative care in long-term care settings for older people: EAPC taskforce report. Milan: EAPC Schols JM, Crebolder HF, van Weel C. Nursing home and nursing home physician: the Dutch experience. J Am Med Dir Assoc 2004; 5(3): Sanden K, Smit W, Dashorst M. The referencing document of the Dutch national qualifi cation framework to the European qualifi cation framework. Brussels: European Commission Helton MR, van der Steen JT, Daaleman TP, Gamble GR, Ribbe MW. A cross-cultural study of physician treatment decisions for demented nursing home patients who develop pneumonia. Annals of family medicine 2006; 4(3): Koopmans RT, Lavrijsen JC, Hoek JF, Went PB, Schols JM. Dutch elderly care physician: a new generation of nursing home physician specialists. J Am Geriatr Soc 2010; 58(9): Huls M, de Roo ij SE, Diepstraten A, Koopmans R, Helmich E. Learning to care for older patients: hospitals and nursing homes as learning environments. Medical education 2015; 49(3): Spilsbury K, Hewitt C, Stirk L, Bowman C. The relationship between nurse staffi ng and quality of care in nursing homes: a systematic review. Int J Nurs Stud 2011; 48(6): Backhaus R, Rossum EV, Verbeek H, et al. Work environment characteristics associated with quality of care in Dutch nursing homes: A cross-sectional study. Int J Nurs Stud 2017; 66: Backhaus R, Verbeek H, van Rossum E, Capezuti E, Hamers JP. Nurse staffi ng impact on quality of care in nursing homes: a systematic review of longitudinal studies. J Am Med Dir Assoc 2014; 15(6):

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