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After a book of many chapters about pain in dementia, it might appear redundant to highlight special directions of development of future research because the authors have all made educated guesses about future directions for their respective fields. However, a shortlist of hot topics may not be comprehensive and may even appear biased but is in its special form definitive thought-provoking and communication-promoting. Therefore, the present authors have intensively discussed and compiled some ideas they found especially relevant for future directions of research on pain in dementia. They hope to hereby elicit active formation of opinions and (re)start scientific dialogues.
NEW PERSPECTIVES ON PAIN MANAGEMENT IN DEMENTIA
Over the years, many reports have been on the undertreatment of pain in persons with dementia, and this is reflected in many chapters of this book. After the study by Ferrell et al. , many other scholars have showed lower rates of pharmacological pain treatment in people with cognitive impairment. This holds for studies in the community, in residential settings and nursing homes, and also in acute and postoperative hospital patients [7, 28, 29].
Several factors are thought to contribute to this undertreatment . First, older patients might complain less about their pain to their doctors because they want to be “a good patient,” or because they have many other ailments to complain about, or because they believe that pain is a normal part of aging. Second, they may not be able to complain about pain because of cognitive impairment or aphasia, hampering their ability to communicate about pain with their doctor. Third, doctors may be unwilling to treat pain rigorously because they also believe that pain is associated with normal aging (a form of ageism). Some might be willing to treat, but have difficulty in making an accurate pain diagnosis because of the cognitive and communicative barriers; moreover, they may be reluctant to add yet another medication for a patient with a vulnerable body and brain that already suffers from polypharmacy. In addition, worldwide, long-term care has suffered from a lack of good medical care and sound implementation of knowledge regarding adequate pain assessment and pain management.
Recent literature however seems to contradict the fact that persons with dementia suffer from pain undertreatment. For instance, analgesic prescription in Norwegian nursing homes increased by 65%, with paracetamol prescription increasing by 113% between 2000 and 2011 . The greatest change was seen in the use of strong opioids: an increase from 1.9% in 2000 to 17.9% in 2011. Interestingly, patients with dementia no longer had lower levels of analgesic prescription. Therefore, one might conclude that, after all those years of poor pain management in people with dementia or long-term care, treatment is finally at a satisfactory level. Several other recent studies also showed higher levels of pharmacological pain management in older people and people with dementia [14, 26].
In the United Kingdom, the prescription of strong opioids has risen substantially, especially in noncancer patients, women, and those aged 66–80 years . However, we should be cautious about being too enthusiastic about this—at first sight—marked improvement. Having higher aggregate prescription rates does not tell us anything about the appropriateness of the prescriptions. Several trials on short-term pharmacological pain management in patients with dementia have pointed out the beneficial effects on their emotional well-being, agitation, and mood [6, 19, 20]. Although short-term pharmacological pain interventions (also with stronger opioids) after proper assessment and including adequate evaluation are without doubt desirable, there is no evidence for the efficacy of long-term use without proper assessment and evaluation. Especially the introduction of fentanyl and buprenorphine patches seems to have accelerated long-term opioid use in vulnerable older patients. In Denmark, 41% of nursing home residents and 27.5% of the dementia community-based population now use an opioid, which definitely raises questions about appropriateness and safety . Sound pain management is surely not just supplying patches for many years as a panacea for all problems of people with dementia . We have a long way to go because, for instance, studies on the pharmacodynamics and pharmacokinetics of pain medication in persons with cognitive impairment are almost completely missing in action (see Chapter 18). We do not know how the potential lack of placebo effect (see Chapter 21) relates to preferred dosage of pain medication in patients with advanced Alzheimer’s disease. We also have controversies about the potential side effects of opioids in patients with dementia: are they more prone for delirium? Although we see in practice that this is one of the reasons why opioids are withheld in acute care settings, there is little evidence that opioids in dementia will indeed lead to delirium .
Good assessment and evaluation of pain treatment is still considered poorly implemented in all sectors of care. Adequate pain measurement instruments for people with dementia are rarely used properly . Stepped-treatment approaches to address pain, with a full medical review and personalized nonpharmacological “comfort” approaches before escalating to pharmacological treatment, are recommended, but are often not put into practice :
To date, there is no pain management protocol for persons with impaired cognition that takes into account the many aspects that are covered in this book, such as valid assessment, evaluation, biological, psychological and cultural influences, relation to correlates of pain (such as neuropsychiatric symptoms and functional impairment), and benefits as well as harms of both pharmacological and psychosocial interventions. Also the practical aspects of pain management in different settings, such as acute hospital care, community care, palliative care and long-term care, have not been established.
International research on pain in persons with impaired cognition from the last 15 years definitively has had impact on clinical practice: in some countries and settings the awareness of potential undertreatment has risen. However, we have little evidence that this is based on thorough assessment and evaluation. The message from some of the recent studies mentioned is hopeful, but we need more longitudinal and in-depth studies on the indications and duration as well as the beneficial and harmful effects of pain management (also nonpharmacological) in persons with impaired cognition.
A number of observational and informant-based assessment tools have been developed over the last 20 years based on identification of specific behaviors, many of which align closely with the AGS guidelines . The tools are applied by a proxy rater, usually a caregiver (health professional or family carer) who is familiar with the individual, and combines observation of behaviors, emotions, interactions, and facial expressions. A number of systematic reviews have examined the range of tools currently available for use in dementia. One recent review concludes that there are 12 promising pain assessment tools available, but most of these require further validation in people with dementia and for day-to-day use in clinical settings . While many of the available tools have been developed through robust methodology, including intensive observation in the clinic, consultation with users and patients, and refinement of items, the existing tools are disparate and there is no one universal tool. In particular, while there is large agreement between existing tools on the concepts for pain assessment, there is great disparity in the methods by which they are operationalized. Importantly, existing tools frequently lack comprehensive data on face and construct validity, reliability, and responsiveness (see Chapter 10). Few specify the specific situation in which assessment should take place, for example during rest, guided movement, or during daily activities, nor have the majority been developed for ease of use in clinical settings and clinical utility. As a result, no truly universal tool for pain detection in dementia exists. There remains an urgent need to draw on the currently available resources and to develop an easy-to-use assessment tool which has utility in both research and clinical settings, and robust validation data to support its implementation.
To address this, the EU-COST1 Action “Pain in impaired cognition, especially dementia” decided to develop a meta-tool based on the best of the available tools for pain assessment in dementia . The decision to create a meta-tool based on existing instruments was informed by a thorough review of the literature and current clinical practice which revealed the absence of a single tool for use in all settings which is embedded in the practicalities of clinical practice and user-based design. The initiative aims to develop a truly unique meta-tool which, instead of being developed from patient observations, is based on the scrutiny and inclusion of items from existing assessment tools based on empirical evaluation of each item. This innovative approach ensures that the best, most informative items are used. Furthermore, the meta-tool will form part of a more comprehensive toolkit which will provide supporting resources and guidance to capture the nuances of pain in dementia including the specific needs of assessing pain in different locations and settings, and to support decision-making regarding the most suitable treatment.
Since this approach requires joint forces of many experts and may fail, it remains favorable to back up such approaches by further validation and improvements attempts of the existing tools. The glut of preexisting pain assessment tools favor strict criteria for the development of further tools without urgent necessity. One acceptable reason may be specific scopes of application as detailed in the present chapter.
The commonest causes of pain in people with dementia are musculoskeletal, gastrointestinal and cardiac conditions, genitourinary infections, pressure ulcers, and oral pain [10