[Pain and neurocognitive disorders: current state of the art and remaining challenges]. / Pijn en neurocognitieve stoornissen: stand van zaken en de weg nog te gaan.

The detection and treatment of pain is hampered by cognitive disorders. In this review we discuss the epidemiology of pain in cognitive disorders, and elaborate further on the current state of the art on pain in these populations. We will specifically highlight current gaps and recommendations for the future for the following knowledge domains: 1) Biology and neuropathology,  2) Assessment and evaluation, 3) Treatment and management , and 4) Contextual factors such as the organization and education.  We identify the following knowledge gaps: 1) (Biology): Do pain experience and pain expressions change in different types of cognitive disorders, and how? 2) (Assessment): How to recognize, evaluate and assess pain, in case the self-report of pain is no longer reliable? 3) (Treatment): Which treatment possibilities are effective? How can we organize this in an interdisciplinary way? And how to monitor this? How can we ensure proper implementation of pain assessment and treatment in clinical practice? Specifically with regard to non-pharmacological treatment, how can we communicate observations from different disciplines, family members and clinicians to improve the detection of pain as well as treatment monitoring/evaluation? 4) (Contextual): How can we increase knowledge and skills on pain in cognitive impairment within educational training?

Dementia and Parkinson's Disease: Risk Factors for 30-Day Mortality in Nursing Home Residents with COVID-19.

BACKGROUND: The COVID-19 pandemic has led to high mortality rates in nursing homes (NHs) in Europe. For adequate risk management and good prognostications, it is essential to identify mortality risk factors. OBJECTIVE: This study aimed to determine whether previously identified risk factors for 30-day mortality in Dutch NH residents with COVID-19 are unique to COVID-19. METHODS: In this cohort study, we included 1,294 NH residents with COVID-19 (cases) and 17,999 NH residents without COVID-19 (controls, from the pre-COVID-19 period). We used descriptive statistics and Cox proportional hazard models to compare mortality rates in residents with and without COVID-19, categorized by risk factors. RESULTS: Cases had a more than 18 times higher hazard of death within 30 days compared to controls (HR 18, 95%CI: 16-20). For residents with COVID-19, being male, having dementia, and having Parkinson's disease (PD) were all associated with a higher 30-day mortality (HR 1.8 versus 1.3 versus 1.7). Being male was also associated with a higher mortality (HR 1.7) in the control group, whereas having dementia and PD were not. COVID-19 symptomatology was very similar for residents with and without dementia or PD, except for delirium and malaise which was more frequent in residents with dementia. CONCLUSION: Dementia and PD were significant additional risk factors for mortality in Dutch NH residents with COVID-19, whereas male gender was not unique to residents with COVID-19. The frailty of PD and dementia in NH residents with COVID-19 are relevant to consider in prognostication, communication, and care planning with residents and their families.

Clinical Suspicion of COVID-19 in Nursing Home Residents: Symptoms and Mortality Risk Factors.

OBJECTIVES: To describe the symptomatology, mortality, and risk factors for mortality in a large group of Dutch nursing home (NH) residents with clinically suspected COVID-19 who were tested with a reverse transcription-polymerase chain reaction (RT-PCR) test. DESIGN: Prospective cohort study. SETTING AND PARTICIPANTS: Residents of Dutch NHs with clinically suspected COVID-19 and who received RT-PCR test. METHODS: We collected data of NH residents with clinically suspected COVID-19 via electronic health records between March 18 and May 13, 2020. Registration was performed on diagnostic status [confirmed (COVID-19+)/ruled out (COVID-19-)] and symptomatology (typical and atypical symptoms). Information on mortality and risk factors for mortality were extracted from usual care data. RESULTS: In our sample of residents with clinically suspected COVID-19 (N = 4007), COVID-19 was confirmed in 1538 residents (38%). Although symptomatology overlapped between residents with COVID-19+ and COVID-19-, those with COVID-19+ were 3 times more likely to die within 30 days [hazard ratio (HR), 3.1, 95% confidence interval (CI) 2.7-3.6]. Within this group, mortality was higher for men than for women (HR 1.8, 95% CI 1.5-2.2), and we observed a higher mortality for residents with dementia, reduced kidney function, and Parkinson's disease, even when corrected for age, gender, and comorbidities. CONCLUSIONS AND IMPLICATIONS: About 40% of the residents with clinically suspected COVID-19 actually had COVID-19, based on the RT-PCR test. Despite an overlap in symptomatology, mortality rate was 3 times higher for residents with COVID-19+. This emphasizes the importance of using low-threshold testing in NH residents, which is an essential prerequisite to using limited personal protective equipment and isolation measures efficiently.

Evaluation of a Pain Assessment Procedure in Long-Term Care Residents With Pain and Dementia.

BACKGROUND: The management of pain in long-term care (LTC) residents with dementia is complex. A prospective exploratory study was conducted to describe the course of pain and pain management strategies following a guideline-based pain assessment procedure in LTC residents with pain and dementia. MEASURES: Pain observations with the Mobilization Observation Behaviour Intensity Dementia (MOBID-2) Pain Scale, a review of the electronic patient file and pharmacy files and physical examination of LTC residents with pain and dementia. INTERVENTION: Communication of the assessment results to the attending physician including guideline-based treatment recommendations. OUTCOMES: After three months, complete follow-up data were obtained for 64 residents. Pain intensity was significantly reduced (P < 0.001). The proportion of residents with persistent pain was 58% and the total number of analgesic prescriptions did not change significantly. CONCLUSIONS: There is room for improvement regarding pain management in LTC residents with pain and dementia, and performance feedback seems a promising strategy to explore further.

Pain, Neuropsychiatric Symptoms, and Quality of Life of Nursing Home Residents With Advanced Dementia in The Netherlands: A Cross-sectional Study.

BACKGROUND: Many studies have investigated factors associated with quality of life (QoL) in nursing home residents with dementia. Both pain and neuropsychiatric symptoms (NPS) are clinically relevant and individually associated with a lower QoL; however, there are no studies that investigated pain and NPS together in relation to QoL. PURPOSE: In this study, we explored the relationship of pain and NPS with QoL in nursing home residents with dementia by investigating the association between pain concurrently with NPS, and QoL. METHODS AND PATIENTS: Secondary data analyses of cross-sectional data from 199 residents were collected by observations at dementia special care units of 10 nursing homes. QoL was measured with Qualidem, pain with the Mobilization Observation Behavior Intensity Dementia (MOBID-2) Pain Scale and NPS with the Neuropsychiatric Symptoms Inventory. The relation of pain and NPS to QoL was studied using multiple linear regression analyses. Analyses were adjusted for age, sex, activities of daily living, comorbidity, medication use, and dementia severity. RESULTS: Regression models with pain and NPS, showed no independent relationship between pain and QoL subdomains, but NPS, in particular agitation and depressive symptoms, were significantly associated with lower QoL subdomain scores. Agitation was related to lower scores on the subdomains "relationship" [95% confidence interval (CI), -0.083 to -0.059], "positive affect" (95% CI, -0.037 to -0.013), "restless tense behavior" (95% CI, -0.003 to -0.004), and "social relations" (95% CI, -0.033 to -0.009), whereas depression was related to lower scores on the subdomains "positive affect" (95% CI, -0.054 to -0.014), "negative affect" (95% CI, -0.114 to -0.074), "restless tense behavior" (95% CI, -0.075 to -0.025), and "social relations" (95% CI, -0.046 to -0.002). CONCLUSIONS: Only NPS were significantly associated with QoL in nursing home residents with dementia. Further longitudinal research is needed to estimate the nature of the relationship between pain, NPS, and QoL.

Prevalence of Pain in Nursing Home Residents: The Role of Dementia Stage and Dementia Subtypes.

OBJECTIVES: To study pain prevalence, pain type, and its pharmacological treatment in Dutch nursing home residents in relation to dementia subtype and dementia severity. DESIGN: Data were collected as part of the PAINdemiA study, an observational cross-sectional study conducted between May 2014 and December 2015. SETTING: Ten nursing homes in the Netherlands. PARTICIPANTS: A total of 199 nursing home residents in various stages of dementia. MEASUREMENTS: We collected data on pain (by observation: MOBID-2 Pain Scale and by self-report scales), pain type, pain medication, dementia subtype, dementia severity (GDS), and demographic features. RESULTS: In the whole sample, the prevalence of pain was 43% (95% confidence interval 36%-50%) using the MOBID-2 Pain Scale. Regardless of regularly scheduled analgesics, approximately one-third of the residents with pain suffered from moderate to severe pain. Pain assessment with the MOBID-2 Pain Scale showed no difference in pain between dementia subtypes, but residents with more severe dementia experienced pain more often than those with less severe dementia (27% vs 15%). The prevalence of self-reported pain was significantly higher in residents with vascular dementia (VaD) (54%) compared with those with Alzheimer disease (18%) and other dementia subtypes (14%). Nociceptive pain was the predominant type of pain (72%) followed by mixed pain (25%). Acetaminophen was the most prescribed analgesic (80%). CONCLUSION: Most of the participating nursing home residents had no pain; however, pain was observed more often in residents with severe dementia, whereas residents in the early stages of VaD self-reported pain more often that those with other dementia subtypes. As one-third of the residents with clinically relevant pain had moderate to severe pain regardless of using pain medication, more focus should be on how pain management could use more tailored approaches and be regularly adjusted to individual needs.

A Review of Pain Prevalence in Alzheimer's, Vascular, Frontotemporal and Lewy Body Dementias.

BACKGROUND: Numerous studies have reported on pain in dementia. It has been hypothesized that pain perception differs between dementia subtypes, and therefore, the prevalence of pain differs between dementia subtypes. However, there remains a paucity of evidence on the differences in the prevalence of pain in different dementia subtypes. This review aimed to determine the prevalence of pain for the major dementia subtypes: Alzheimer's disease (AD), vascular dementia (VaD), frontotemporal dementia (FTD) and dementia with Lewy bodies (DLB). SUMMARY: We found 10 studies that met our inclusion criteria. Most of these studies reported on AD; studies reporting the prevalence of pain in people with DLB were scarce, and for FTD, we found no studies. The sample-weighted prevalence of pain could only be calculated for AD, VaD and mixed dementia: AD 45.8% (95% confidence interval, CI: 33.4-58.5%), VaD 56.2% (95% CI: 47.7-64.4%) and mixed dementia 53.9% (95% CI: 37.4-70.1%). KEY MESSAGES: Studies investigating the prevalence of pain in dementia subtypes were scarce; however, we found a high prevalence of pain in dementia without significant differences between the dementia subtypes. More studies are required to draw firm conclusions on the differences in the prevalence of pain between dementia subtypes.

Pain in dementia: prevalence and associated factors: protocol of a multidisciplinary study.

BACKGROUND: Pain is a common problem in people with dementia, however the exact prevalence of pain in dementia subtypes, e.g. Alzheimer's Disease (AD), Vascular Dementia (VaD), Frontotemporal Dementia (FTD) and dementia with Lewy Bodies (DLB), is unknown, as is the relation between pain and the different subtypes of dementia. In this study, the prevalence of pain in people with dementia will be investigated per dementia subtype and the relationship between the various subtypes of dementia and the presence of specific types of pain (i.e. musculoskeletal pain, neuropathic pain and orofacial pain) will be examined. Secondly, associations between various types of pain, cognitive functioning, neuropsychiatric symptoms and quality of life in people with dementia will be examined. A third purpose is to study the value of the assessment of autonomic responses in assessing pain in people with dementia. Finally, the effect of feedback to the attending physician on the presence of pain, based on examination by investigators with backgrounds in neuropsychology, geriatric dentistry and elderly care medicine, will be evaluated. METHODS/DESIGN: A cross-sectional, partially longitudinal observational study in 400 participants with dementia, aged 60 years and older. Participants will be recruited from an outpatient memory clinic and dementia special care units. All participants will be examined by an elderly care medicine trainee, a dentist with experience in geriatric dentistry, and a neuropsychologist. The primary outcome is presence of pain. Secondary outcomes will include oral health, autonomic responses to pain stimulus, vital sensibility and gnostic sensibility, musculoskeletal examination, cognitive functioning, neuropsychiatric symptoms, and quality of life. DISCUSSION: This study will help to enhance our knowledge regarding the prevalence of different types of pain in different dementia subtypes i.e. AD, VaD, FTD and DLB. This study also aims to contribute to a better understanding of oral health status in people with dementia, the use of autonomic responses in the assessment of pain in people with dementia and the relationships between pain and cognitive symptoms, neuropsychiatric symptoms and quality of life in people with various dementia subtypes and in different stages of the disease.