1. Pain and Impaired cognition: Facts and fiction Prof Dr Wilco Achterberg, MD, PhD Leiden University Medical Center, The Netherlands

2. Disclosure Statement of Financial Interest I, Wilco Achterberg, DO NOT have a financial interest/arrangement or affiliation with one or more organizations that could be perceived as a real or apparent conflict of interest in the context of the subject of this presentation.

3. Pain in dementia: facts and fictions Pain experience Pain assessment Pain treatment

5. FACTS: PAIN EXPERIENCE Clinical pain report and intensity similar in mild to moderate cognitive impairment, but may be reduced in those with more advanced dementia. Experimental studies: pain threshold unchanged, pain tolerance increased. Autonomic reactivity to pain is altered in those with dementia Unrelieved pain may be a contributing factor to the increased occurrence of BPSD (particularly resistance to care, repetitive vocalisation, agitation and aggression).

6. FICTIONS: PAIN EXPERIENCE Pain is normal with aging People with dementia do not feel pain Emotional components of pain are reduced

7. FACTS: PAIN ASSESSMENT Behavioural assessment scales (25+) available and promising. Many tools have growing evidence of reliability and validity. Self report remains a viable option for mild to moderate dementia. Facial action coding system offers a viable pain assessment option at least for research purposes? Assessment of pain during a movement based protocol appears to be better

8. Behaviour Coding Tools Facial action codingFacial action coding Somatic interventionsSomatic interventions Pain behavioursPain behaviours Physiological Measures Autonomic markersAutonomic markers Reflexes (RIII)Reflexes (RIII) Neuroimaging (fMRI, PET)Neuroimaging (fMRI, PET) Self Report Scaling –Verbal descriptor scales –Numeric scales –Graphic/picture scales Proxy Ratings –Generalised (Minimum Data Set pain report) TYPES OF PAIN ASSESSMENT

9. Eye brow lowers Nose wrinkles Eye lids tighten/close Lips tighten/parted Cheek area raised Hadjistavropoulos, 2000,2002, 2007 Kunz et al. 2007, 2008 Facial expressions of pain

10. Vocal expressions: (vocalise, moaning, noisy breathing, crying) Facial expressions: (grimace, clench teeth, frightened/tense face) Body language: (guarding/bracing, stiff body, rocking/withdrawn) General behaviour: (increased confusion, aggression, wandering) Physiologic signs: (tissue damage, vital signs change, previous Hx) DS-DAT, PAINAD, Abbey, NOPAIN, DOLOPLUS-2, ALGOPLUS,CNPI, MOBID, RaPID, PACSLAC, ADD, FLACC, ECPA, PACI, PATCOA, NVPS, FACS, Mahoney PS, CNAPAT, PADE... Non-Verbal indicators of likely pain Non verbal measures in persons with cognitive impairment

11. BEHAVIOURAL and PSYCHOLOGICAL DISTURBANCES agitation in 11% of long term residents => 50% of those with advanced dementia Cross-sectionnal study : SHELTER study. Tosato et al., 2011 Prevalence of behavioral and psychiatric symptoms according to presence of pain

12. Cluster randomised clinical trial Efficacy of treating pain to reduce behaviouraldisturbances in residents of nursing homes withdementia Husebo et al., 2011 Cluster randomized controlled trial implementation of the serial trial intervention for pain and challenging behaviour in advanced dementia patients (STA OP!): Pieper et al., 2011 Study Protocol The Behaviour and Pain in Dementia Study (BePAID) older people with dementia who have unplanned acute medical admissions Scott et al., 2011 TREATING PAIN TO REDUCE AGITATION?

13. FACTS: PAIN TREATMENT Pain is undertreated in persons with dementia. Across all health care settings: acute hospital, sub acute and residential aged care Across all studied disease entities (cancer, post operative, chronic pain). Fewer PRN orders for analgesics are given to persons with dementia. Dosage lower in persons with dementia regardless of class of analgesic (simple anti-inflammatory agents, narcotics).

15. 15 No Pain

16. FICTIONS:PAIN TREATMENT Response to pain treatments cannot be reliably monitored in dementia. Lower dose analgesics are sufficient for people with dementia. Greater adverse drug reactions occur in those with dementia. Opioid medication given for strong acute pain worsens cognitive function in those with and without dementia Specialist multidisciplinary treatment programs cannot be delivered to persons with dementia.

18. Objectives Cost-action: MAIN Development of a -comprehensive and -internationally agreed-on -toolkit for -assessing pain in adults with cognitive impairment, especially with dementia.

19. Objectives Cost-action: SECONDARY Preparing appropriate dissemination strategies for both toolkit and guidelines Analyzing and, if possible, correcting scientific, social and political barriers against dissemination Encouraging cross-national learning and consideration of cross-national differences in this process Increasing the overall awareness for the deleterious situation of pain sufferers with cognitive impairment in the public and in bodies of experts

20. Questions?