End-of-Life Care and Dementia Assessing and Managing Symptoms

Symptom Management Challenges Multifactorial causes Communication Impact of dementia Impact of pain & other symptoms causing further decline Impact – chronic pain can cause cognitive decline (McCracken, Iverson 2001), forgetfulness, Falls, Dementia impact – decline creates symptoms but also adds to struggle to manage symptoms

Common Symptoms in Dementia Pain Breathlessness Fever Appetite/Feeding Problems Delirium Constipation Loss of peripheral Vision Depression Anxiety Incontinence Pressure Ulcers Nausea/vomiting Thrush Sialorrhoea

Lack of Education and Assessment Recognition of Pain It has been well documented that patients with dementia experience pain but this is poorly managed One study revealed in the last 6 months of life 75% of people with dementia were found to have unrelieved pain (Mitchell et al, 2004) (Kunz et al 2007) (Thune-Boyle 2010) (Husebo et al 2011) Inadequate symptom management of pain could be due to a number of factors Lack of Education and Assessment Fear of adverse effects resulting in under-dosing Shipman Effect

Causes of Pain Co morbidities Cancer Osteoarthritis Cardiac/Angina Chronic pain conditions Falls/Fractures Pressure sores Constipation

Issues for Dementia & Elderly Pain Management: Issues for Dementia & Elderly Refusal of medications (paranoia) Route – swallowing, refusal, confusion Myths Elderly dose considerations: metabolism, weight, kidney / liver function, hydration Polypharmacy & number of pills Patches / Syringe Drivers Myths: dementia pt’s don’t experience pain, opioids will aggravate behaviour, side effects unmanageable, family barriers, sedating will aggravate decline

Pain Assessment Tools Verbal NRS, VAS, FACES Non Verbal Abbey Pain Scale NOPPAIN DisDAT PAINAD

Management of Pain Criticism of Tools (Herr et al 2010) (Zyczkowska et al 2007) Person Centred Approach Identify patients relationship with Distress

Relating to the case study Assess the patient using the PAINAD tool Liaise with Family and Carers Discuss Joan’s normal response to distress Using the WHO analgesic pain ladder recommend appropriate course of action to relieve distressing symptoms. Consider other measures

References Herr, K.A. and Mobily, P.R. (1996). Pain management for the elderly in alternate care. In: Ferrell, B.R. and Ferrell, B.A. eds. Pain in the Elderly. Seattle: IASP Press 101–9 Kerr, D., Cunningham, C. and Wilkinson, H. (2006) Responding to the Pain of People with a Learning Disability and Dementia. Joseph Rowntree Foundation, York Publishing Kerr, D., Cunningham, C. and Wilkinson, H. (2006). Learning disability and dementia: are we prepared? Journal of Dementia Care 14 (3): 17–19 Kunz, M., Scharmann, S., Hemmeter, U.,Schepelmann, K. and Lautenbacher, S. (2007). The facial expression of pain in patients with dementia. Pain 133: 221–8 Zwakhalen, S.M.G., Hamers, J.P.H., Abu-Saad,H.H. and Berger, M.P.F. (2006) Pain in elderly people with severe dementia: A systematic review of behavioural pain assessment tools. BioMed Central Geriatrics 6: 3 Zyczkowska, J., Szczerbin´ska, K., Jantzi, M.R. and Hirdes, J.P. (2007). Pain among the oldest old in community and institutional settings, Pain 129:167–76