There are an estimated 35 million people with dementia across the world, of whom 50% experience regular pain. Despite this, current assessment and treatment of pain in this patient group are inadequate. In addition to the discomfort and distress caused by pain, it is frequently the underlying cause of behavioral symptoms, which can lead to inappropriate treatment with antipsychotic medications. Pain also contributes to further complications in treatment and care. This review explores four key perspectives of pain management in dementia and makes recommendations for practice and research. The first perspective discussed is the considerable uncertainty within the literature on the impact of dementia neuropathology on pain perception and processing in Alzheimer’s disease and other dementias, where white matter lesions and brain atrophy appear to influence the neurobiology of pain. The second perspective considers the assessment of pain in dementia. This is challenging, particularly because of the limited capacity of self-report by these individuals, which means that assessment relies in large part on observational methods. A number of tools are available but the psychometric quality and clinical utility of these are uncertain. The evidence for efficient treatment (the third perspective) with analgesics is also limited, with few statistically well-powered trials. The most promising evidence supports the use of stepped treatment approaches, and indicates the benefit of pain and behavioral interventions on both these important symptoms. The fourth perspective debates further difficulties in pain management due to the lack of sufficient training and education for health care professionals at all levels, where evidence-based guidance is urgently needed. To address the current inadequate management of pain in dementia, a comprehensive approach is needed. This would include an accurate, validated assessment tool that is sensitive to different types of pain and therapeutic effects, supported by better training and support for care staff across all settings.

On the basis of pain behaviours, standardized movements and pain drawings, MOBID-2 Pain Scale was shown to be sufficiently reliable, valid and time-effective for nurses to assess pain in patients with severe dementia.

Introduction: The majority of nursing home (NH) patients suffer from complex diseases, including dementia. This makes advance care planning (ACP) particularly important.Objectives: The aim was to investigate the effect of an ACP intervention on communication among NH staff, patient, and family. We further investigated whether the intervention affected nursing staff distress.Methods: The ACP intervention was a part of the 4-month cluster randomized controlled COSMOS trial with a 9-month follow-up. Norwegian NH units (n = 72), with 765 patients were invited, and eligible units were cluster randomized to usual care or the intervention group. The ACP intervention consisted of an education program targeting all NH staff (nurses and physicians) and managers. Implementation was supported by a train-the-trainer approach, with regular phone calls from the researchers. The effect of the intervention was assessed by a data collection form and questionnaires. Nursing staff distress was assessed by the Neuropsychiatric Inventory -Nursing Home version.Results: Five hundred and forty five patients from 67 NH units were included and randomized to the intervention (N = 297; 36 units) and control group (N = 248; 31 units). Organized meetings between the family, patient, and nurses were conducted more frequently in the intervention compared to the control group at month 4 (OR = 3.9, 95% CI = 1.6 to 9.4, p = 0.002). Monthly contact between family and nurses was also more frequent in the intervention group (OR = 6.5, 95% CI = 1.6 to 3.5, p = 0.010). Nurses and families were more satisfied with their communication in the intervention compared to the control group. Staff distress was reduced in the intervention group at month 4 (B = -1.8, 95% CI = -3.1 to -0.4, p = 0.012). The intervention effect at month 4 did not persist during follow-up at month 9.Conclusion: Compared to control, the ACP intervention improved the communication, and family and staff satisfaction as well as reduced staff distress. However, during the follow-up period these positive effects were not persistent. Indicating the necessity for ongoing staff support regarding ACP.Trial Registration: www.ClinicalTrials.gov (NCT02238652).

BackgroundAdvance Care Planning (ACP) is the repeated communication and decision-making process between the patient, family, and healthcare professionals. This study describes an ACP intervention in nursing homes and evaluates the outcomes of the implementation process.MethodsThe ACP intervention was part of a 4-month complex, cluster randomized controlled trial (COSMOS). 37 Norwegian nursing homes with 72 units (1 cluster = 1 unit) and 765 patients were invited to participate and eligible units were randomised to the intervention group or control. Nursing home staff in the intervention group was offered a standardized education programme to learn early and repeated communication with patients and families and to implement ACP in their units. We used a train-the-trainer approach to educate staff in the units, supported by regular telephone calls and a midway seminar after two months. Individual patient logs consisting of different communication deliverables were used to evaluate the implementation process. Supported by Qualitative Content Analyses, we identified facilitators and barriers of the ACP implementation based on feedback during midway seminars and individual patient logs.ResultsThe ACP intervention was conducted in 36 NH units (n = 297); 105 healthcare providers participated at the education seminar prior to the study, and 3–4 employees from each unit participated in the midway seminar. NH staff reported the educational material relevant for the implementation strategy. The patient logs showed that ACP was successfully implemented in 62% (n = 183) of the patients using our predefined implementation criteria. The staff emphasized the clear communication of the relevance of ACP addressed to leaders and staff as important facilitators, along with the clearly defined routines, roles and responsibilities. Identified barriers included lack of competence, perceived lack of time, and conflicting culture and staff opinions.ConclusionMonthly communication with the family was the most frequently conducted communication, and the predefined criteria of successfully implemented ACP were largely achieved. Nursing home routines and engagement of leaders and staff were crucial facilitators, whereas lack of time and competence reduced the implementation success.Trial registrationThe COSMOS-trial was registered in the ClinicalTrials.gov (NCT02238652) July 7th, 2014Electronic supplementary materialThe online version of this article (10.1186/s12877-018-0713-7) contains supplementary material, which is available to authorized users.

BackgroundPain, neuropsychiatric symptoms (NPS) and functional impairment are prevalent in patients with dementia and pain is hypothesized to be causal in both neuropsychiatric symptoms (NPS) and functional impairment. As the exact nature of the associations is unknown, this review examines the strength of associations between pain and NPS, and pain and physical function in patients with dementia. Special attention is paid to the description of measurement instruments and the methods used to detect pain, NPS and physical function.MethodsA systematic search was made in the databases of PubMed (Medline), Embase, Cochrane, Cinahl, PsychINFO, and Web of Science. Studies were included that described associations between pain and NPS and/or physical function in patients with moderate to severe dementia.ResultsThe search yielded 22 articles describing 18 studies, including two longitudinal studies. Most evidence was found for the association between pain and depression, followed by the association between pain and agitation/aggression. The longitudinal studies reported no direct effects between pain and NPS but some indirect effects, e.g. pain through depression. Although some association was established between pain and NPS, and pain and physical function, the strength of associations was relatively weak. Interestingly, only three studies used an observer rating scale for pain-related behaviour.ConclusionsAvailable evidence does not support strong associations between pain, NPS and physical function. This might be due to inadequate use or lack of rating scales to detect pain-related behaviour. These results show that the relationship between pain and NPS, as well as with physical function, is complicated and warrants additional longitudinal evaluation.Electronic supplementary materialThe online version of this article (doi:10.1186/s12877-015-0048-6) contains supplementary material, which is available to authorized users.