Individuals with dementia are at particular risk of untreated pain because their ability to recognize, evaluate, and verbally communicate their pain gradually decreases across the course of dementia [3,4]. As a consequence, alternative ways to assess pain – that do not rely on the capacity to self-report pain – are needed for this ever growing group of vulnerable individuals in order to ensure that pain can be accurately assessed in a timely fashion.
Pain assessment in dementia: self-report
Although the validity of self-report ratings of pain declines across the course of dementia, self-report might still be an appropriate method for pain assessment in the early stages of dementia, when the patient is still able to recognize and verbalize pain . However, when assessing self-report of pain in dementia, certain precautions have to be taken, such as using simple scales (e.g. verbal descriptor scales), repeating the question and the instructions on how to use the scale, and leaving adequate time to respond . Moreover, a more individualized approach should be used that takes into account the specific neuropsychological deficits of the individual (e.g. memory deficits, aphasia) as well as his/her cognitive recourses. This can be achieved by a short neuropsychological screening. When dementia progresses to moderate and severe stages, self-report of pain is often absent . Clinicians should be aware of this and should not interpret a lack of self-reported pain in individuals with severe cognitive impairments as an indicator of a pain-free state.
Pain assessment in dementia: observational pain scales
Over the last two decades a considerable number of observational pain behavior rating scales for individuals with dementia have been developed (e.g. PACSLAC , PAIC , MOBID2 , DOLO-Plus , PAINAD ). These scales usually include observational items related to facial expressions, vocalization, and body movements (see  and  for recent reviews on observational pain scales). The observational scales are completed when the patient is at rest (after some minutes of observation) or when the patient is performing daily life activities (ADL). Given that observation of the patient at rest may not disclose the pain, especially in chronic pain conditions, it is now recommended to observe patients during movements or transfer .
Despite the great number of scales that have been developed, these scales are often not well implemented in clinical practice. Implementation barriers include lack of incentive, lack of time, difficulty of observing patients’ pain behavior while simultaneously providing care, uncertainty on how to score, as well as uncertainty on how to interpret the scores. Thus, more effort is needed to overcome these implementation barriers and to ensure that the use of such observational pain scales becomes the routine standard when caring for individuals with dementia.
Pain assessment in dementia: automatic pain assessment with video systems
New developments in automatic pain detection systems hold the promise that such systems could be used as a complementary instrument supporting the human caregiver. Most attempts to develop automatic pain detection systems have focused on the automatic analysis of facial expressions . Although progress in the development of automatic pain detection systems is very impressive, there are still several obstacles that need to be overcome in order to be able to use these systems in clinical care. Nonetheless, given the fast development in this area, one can surely expect such systems to be available within the next decade.
- Pain assessment in dementia should always be a combination of self-report and observational pain assessment. With increasing severity of dementia, caregivers may need to rely more on behavioral indicators of pain. Neuropsychological screening could guide the choice of adequate pain assessment and allow more individualized assessment approaches.
- Observational pain assessment should be conducted during rest and during transfer situations (or other activities of daily living) using behavioral pain assessment scales.
- Excellent implementation concepts for pain assessment in dementia should be developed to ensure that the use of such observational pain scales becomes the standard when caring for individuals with dementia and to ensure standard usage.
- In the future, automatic pain detection in dementia might be used as a complementary instrument supporting pain assessment by the human caregiver.
 Corbett A, Achterberg W, Husebo B, Lobbezoo F, de Vet H, Kunz M, Strand L, Constantinou M, Tudose C, Kappesser J, de Waal M, Lautenbacher S; EU-COST action td 1005 Pain Assessment in Patients with Impaired Cognition, especially Dementia Collaborators: http://www.cost-td1005.net/. An international road map to improve pain assessment in people with impaired cognition: the development of the Pain Assessment in Impaired Cognition (PAIC) meta-tool. BMC Neurol. 2014 Dec 10;14:229. doi: 10.1186/s12883-014-0229-5.
 Fuchs-Lacelle S1, Hadjistavropoulos T. Development and preliminary validation of the pain assessment checklist for seniors with limited ability to communicate (PACSLAC). Pain Manag Nurs. 2004 Mar;5(1):37-49.
 Gibson SJ, Lautenbacher S: Pain Perception and Report in Persons with Dementia. In: Lautenbacher S, Gibson SJ (eds): Pain in Dementia. Wolters Kluwer and IASP Press, 2017. pp 43-54.
 Hadjistavropoulos T, Herr K, Prkachin KM, Craig KD, Gibson SJ, Lukas A, Smith JH. Pain assessment in elderly adults with dementia. The Lancet Neurology 2014, 13(12), 1216-1227.
 Herr K, Zwakhalen S, Swafford K. Observation of pain in dementia. Current Alzheimer Research 2017, 14(5), 486-500.
 Husebo BS, Strand LI, Moe-Nilssen R, Husebo SB, Ljunggren AE: Pain in older persons with severe dementia. Psychometric properties of the Mobilization-Observation-Behaviour-Intensity-Dementia (MOBID-2) Pain Scale in a clinical setting. Scand J Caring Sci 2010, 24(2):380- 391.
 Kaasalainen S, Crook J. An exploration of seniors’ ability to report pain. Clinical nursing research 2004, 13(3), 199-215.
 Kunz M, Seuss D, Hassan T, Garbas JU, Siebers M, Schmid U, Lautenbacher S. Problems of video-based pain de-tection in patients with dementia: a road map to an interdisciplinary solution. BMC geriatrics 2017, 17(1), 33.
 Lefebvre-Chapiro S. The DOLOPLUS 2 scale – evaluating pain in the elderly. European Journal Of Palliative Care. 2001;8:191–194.
 Pautex S, Lautenbacher S: Methods of Assessing Pain and Associated Conditions in Dementia: Self-report Pain Scales. In: Lautenbacher S, Gibson SJ (eds): Wolters Kluwer and IASP Press, 2017. pp. 119-132.
 Warden V, Hurley AC, Volicer L: Development and psychometric evaluation of the Pain Assessment in Advanced Dementia (PAINAD) scale. J Am Med Dir Assoc 2003, 4(1):9-15.
 Zwakhalen S, Herr K, Swafford K. Observational pain tools. In Pain in Dementia, ed. Stephen J Gibson and Stefan Lautenbacher, Wolters Kluwer and IASP Press, 2017
Miriam Kunz, PhD
Co-Chair, Global Year Task Force
Department of Medical Psychology and Sociology
University of Augsburg
Stefan Lautenbacher, PhD
Department of Physiological Psychology
University of Bamberg