Miel W. Ribbe

Recent developments in pain in dementia

Epidemiological studies show that, worldwide, the number of people aged over 65 will increase substantially in the next decades and that a considerable proportion of this population will develop dementia.1 Ample evidence shows that ageing is associated with a high rate of painful conditions, irrespective of cognitive status.2 The number of patients with dementia who will experience painful conditions is therefore likely to increase. A key question relates to whether and how patients with dementia perceive pain. Patients with dementia may express their pain in ways that are quite different from those of elderly people without dementia.3 Particularly in the more severe stages of dementia, therefore, the complexity and consequent (frequent) inadequacy of pain assessment leads to the undertreatment of pain. The most commonly used pain assessment instruments seem to be selected primarily according to the communicative capacity of the patient (self report pain rating scales for communicative patients and observation scales for non-communicative patients) instead of according to two main aspects of pain—the sensory-discriminative and motivational-affective aspects. In particular, the motivational-affective aspects of pain are assessed by observation scales, which should therefore be applied to every patient, irrespective of ability to communicate. Distinction between the sensory-discriminative and motivational-affective aspects of pain is of great clinical relevance, as the motivational-affective aspects are particularly likely to reflect pain that needs treatment.4 Moreover, differentiating between these two aspects of pain in relation to the neuropathology of the various subtypes of dementia provides insight into the basis of the alterations in the pain experiences of elderly people with dementia. Future experimental and clinical studies should not only focus on subtypes of dementia but should go a step further and assess pain in disorders in which pain is already present at a stage without cognitive impairment and during the course …

A review of quality of life instruments used in dementia

Objective: To provide an overview of QOL measures applicable for research in dementia, the scale content, method of data collection, and their psychometric properties. Method: Literature research. Results: Six dementia-specific QOL measures were identified, eight generic measures were used in a demented population, and three dementia-specific measures related to QOL are described as well. Measures vary considerably in scale content, and method of data collection. Reliability indexes were always available, support of instrument validity was often reported, but reports of responsiveness to change were found only for two dementia-specific QOL measures. Conclusion: When the interest is primarily on people with dementia, a dementia-specific instrument is to be preferred. Further clarification of the concept of QOL and particularly its relation to disease severity is required.

The effects of emotion‐oriented approaches in the care for persons suffering from dementia: a review of the literature

This article presents an overview of the results of intervention studies in various emotion‐oriented approaches in the care for people suffering from dementia. Recommendations are made with regard to clinical practice and future research.

Comorbidity and 1-year mortality risks in nursing home residents.

Objectives: To investigate the effect of chronic diseases and disease combinations on 1‐year mortality in nursing home residents.

Pneumonia: The Demented Patient's Best Friend? Discomfort After Starting or Withholding Antibiotic Treatment

OBJECTIVES: To assess suffering in demented nursing home patients with pneumonia treated with antibiotics or without antibiotics. This study should provide the first empirical data on whether pneumonia is a “friend” or an “enemy” of demented patients and promote a debate on appropriate palliative care.

Treatment of nursing home residents with dementia and lower respiratory tract infection in the United States and the Netherlands: An ocean apart

Objectives: To compare treatment of nursing home residents with dementia and lower respiratory tract infection (LRI) in Missouri and the Netherlands.

Pain in European long-term care facilities: Cross-national study in Finland, Italy and the Netherlands

&NA; There have been very few and limited cross‐national comparisons concerning pain among residents of long‐term care facilities in Europe. The aim of the present cross‐sectional study has been to document the prevalence of pain, its frequency and severity as well as its correlates in three European countries: Finland (north), Italy (south) and the Netherlands (western central). Patients (aged 65 years or above) were assessed with the Minimum Data Set 2.0 (MDS).The final sample comprised 5761 patients from 64 facilities in Finland, 2295 patients from 8 facilities in the Netherlands and 1959 patients from 31 facilities in Italy. The prevalence of pain – defined as any type of pain – varied between 32% in Italy, 43% in the Netherlands and 57% in Finland. In nearly 50% of cases, pain was present daily; there were no significant differences in pain prevalence between patients with cancer diagnosis and those with non‐cancer diagnosis. Regardless of the different prevalence estimates, pain was moderate‐to‐severe in over 50% of cases in all the countries. In multivariate logistic regression models, clinical correlates of pain were substantially similar across countries: pain was positively correlated with more severe physical disability (ADL impairment), clinical depression and a diagnosis of osteoporosis. Pain was negatively correlated with a diagnosis of dementia and more severe degrees of cognitive deterioration. We conclude that pain is frequently encountered in long‐term care facilities in Europe and that, despite cultural and case‐mix differences, pain speaks one language.

A Cross-Cultural Study of Physician Treatment Decisions for Demented Nursing Home Patients Who Develop Pneumonia

PURPOSE We wanted to explore factors that influence Dutch and US physician treatment decisions when nursing home patients with dementia become acutely ill with pneumonia. METHODS Using a qualitative semistructured interview study design, we collected data from 12 physicians in the Netherlands and 12 physicians in North Carolina who care for nursing home patients. Our main outcome measures were perceptions of influential factors that determine physician treatment decisions regarding care of demented patients who develop pneumonia. RESULTS Several themes emerged from the study. First, physicians viewed their patient care roles differently. Dutch physicians assumed active, primary responsibility for treatment decisions, whereas US physicians were more passive and deferential to family preferences, even in cases when they considered families’ wishes for care as inappropriate. These family wishes were a second theme. US physicians reported a perceived sense of threat from families as influencing the decision to treat more aggressively, whereas Dutch physicians revealed a predisposition to treat based on what they perceived was in the best interest of the patient. The third theme was the process of decision making whereby Dutch physicians based decisions on an intimate knowledge of the patient, and American physicians reported limited knowledge of their nursing home patients as a result of lack of contact time. CONCLUSION Physician-perceived care roles regarding treatment decisions are influenced by contextual differences in physician training and health care delivery in the United States and the Netherlands. These results are relevant to the debate about optimal care for patients with poor quality of life who lack decision-making capacity.

The RAI-PC: An assessment instrument for palliative care in all settings

Large numbers of persons in most types of healthcare settings have palliative care needs that have considerable impact on their quality of life. Therefore, InterRAI, a multinational consortium of researchers, clinicians, and regulators that uses assessment systems to improve the care of elderly and disabled persons, designed a standardized assessment tool, the Resident Assessment Instrument for Palliative Care (RAI-PC). The RAI-PC can be used for both the design of individual care plans and for case mix and outcomes research. Some elements of this instrument are taken from the resident assessment instrument (RAI) mandated for use in all nursing homes in the United States and widely used throughout the world. The RAI-PC can be used alone or in conjunction with the other assessment tools designed by the InterRAI collaboration: the RAI for homecare (RAI-HC), for acute care (RAI-AC), and for mental health care (RAI-MH). The objective of this study was to field test and carry out reliability studies on the RAI-PC. After appropriate approvals were obtained, the RAI-PC instrument was field tested on 151 persons in three countries in more than five types of settings. Data obtained from 144 of these individuals were analyzed for reliability. The reliability of the instrument was very good, with about 50 percent of the questions having kappa values of 0.8 or higher, and the average kappa value for each of the eight domains ranging from 0.76 to 0.95. The 54 men and 95 women had a mean age of 79 years. Thirty-four percent of individuals suffered pain daily. Eighty percent tired easily; 52 percent were breathless on exertion; and 19 to 53 percent had one or more other symptoms, including change in sleep pattern, dry mouth, nausea and vomiting, anorexia, breathlessness at rest, constipation, and diarrhea. The number of symptoms an individual reported increased as the estimated time until death declined. The “clinician friendly” RAI-PC can be used in multiple sites of care to facilitate both care planning and case mix and outcomes research.

Severe dementia and adverse outcomes of nursing home-acquired pneumonia: evidence for mediation by functional and pathophysiological decline.

To assess whether the severity of dementia is related to unfavorable outcomes of nursing home‐acquired pneumonia and how this relationship is mediated.