1. Pain assessment & management in frail older people with/without dementia
Jo Hockley RN MSc PhD OBE
Senior Research Fellow,
Primary Palliative Care
University of Edinburgh
Background originally in specialist palliative care – back in 1978 I worked at St Christopher’s Hospice and knew Dame Cicely Saunders who started the hospice movement very well. Then went on to establish the hospital-based palliative care teams at Barts in London and The Western General Hospital in Edinburgh and then via a PhD came in to end of life care and older people dying in care homes.
However, it was way back in 1978 when my interest in dying began to emerge. I had been at St Christopher’s for 6 weeks and was in charge of the ward for the first time. I and had just completed the 6pm medication round. The matron, who always checked the wards at the end of each day, sought me out to tell me that one of my patients was dying. I was horrified that I had failed to notice – my nursing background had been in oncology nursing. Matron went to sit with the patient while I prepared an injection for the breathing. Having given the injection, I was about to leave the room when Matron suggested I stay. The patient died about 40 minutes later. How the matron ‘knew’ that death was imminent made a profound impression on me alongside ‘being with’ the dying.

2. Outline of my lecture
Background on pain and older people in nursing care homes
Remind us all of the BASICS of pain assessment
What influences the pain threshold in older people
Important aspects of pain assessment in older people
With/without cognitive impairment
Tools particularly used for people with advanced dementia
Management of pain

3. PAIN - in nursing homes
Vast majority of older people who reside in nursing homes (NHs) suffer persistent pain (Takai et al 2010; Husebp 2008, 2011; Ferrell et al 1995)
45-80% frail elderly NH experience pain
23.7% & 26% NH residents experienced daily pain (Takai et al 2010; Bernabei et al 1998)
Most pain is related to musculoskeletal problems and neuropathies (Weiner & Hanlon 2001)
Elderly NH residents being sensitive to side effects associated with many analgesic drugs – does not justify the failure to treat pain (Ferrell et al 1995)
A survey of 13,625 elderly cancer patients in NHs across the US revealed that 26% of all those with daily pain received no analgesics, and that a disproportionate number of this group were cognitively impaired (Bernabei et al 1998)
Most pain is related to musculoskeletal problems and neuropathies – also cancer, but number of residents dying of a known cancer in NHs across Lothian is limited.

4. Basics of pain assessment
Who has the pain?
“Pain is what the person says it is”
ACUTE versus CHRONIC pain
Different TYPES of pain
Tissue pain
Bone pain
Capsular pain
Muscular pain
Nerve pain

5. Factors influencing the pain threshold (Twycross & Lack 1984)
Threshold – LOWERED by:
Threshold – RAISED by:
Discomfort
Insomnia
Fatigue
Fear & anxiety
Anger
Sadness & depression
Boredom & introversion
Mental isolation
Social abandonment & lonelines
Relief of symptoms
Sleep
Rest
Sympathy & understanding
Companionship
Elevation of mood
Diversional activity
Reduction in anxiety
Medication: analgesics; anti-depressants; anxiolytics

6. Pain assessment tools most commonly used in specialist palliative care
SPC / cancer model – many different pain assessment tools:
‘Faces’
Words to describe pain [McGill Pain Questionnaire]
Visual analogue score (research)
Verbal Rating Scale (Closs 2004)
Body charts

7. Most common symptoms identified during the last year of life among people with dementia.
[McCarthy et al, 1997]
SYMPTOMS
PERCENTAGE
Mental confusion
83%
Urinary incontinence
72%
Pain*
64%
Low mood
61%
Constipation*
59%
Loss of appetite*
57%
McCarthy’s paper from the Int. J. Geriatric Psychiatry (1997)
What this paper also showed was the longer palliative care trajectory compared to that of cancer patients. For too long ‘dementia’ has been seen as a social disease. Often dementia is not put down on a death certificate as though it is not a bona fide disease to be dying from.
Just like any other disease people with dementia will die – I will end my talk with a reference to the last few days of life with an adult suffering far advanced, incurable dementia
Before closing with slide I would like to say that urinary incontinence is obviously prelavent in end stage dementia. Suffice it to say that often I have seen excellent care assistants ignorant of washing people after incontinence – and the importance of not increasing the incident of urinary tract infection especially in women because they don’t know how easy it is to contaminate the urine by not washing properly.
What this paper does not report is the increase in falls as a natural part of the progression of dementia. What we are seeing in
Reversed development of the first 5 years

8. Systematic review (Frampton, 2003)
Pain is under-reported and under-treated in cognitively impaired older people
Reporting habits of older people; the acceptance of reports by staff; the ability of carers to identify pain
Decline in verbal communication makes assessment very difficult
Lack of validated and reliable assessment tools for this population
Poorly treated pain is associated with increased risk of disability & depression

9. PAIN – in dementia is different
Witnessed through residents’ behaviour:
Crying out; rubbing an arm or a leg; decreased function/withdrawal; change in sleep pattern; body bracing
Needs a DIFFERENT assessment tool:
Story of resident at Lennox House

10. Common signs & symptoms of physical or affective discomfort in late-stage dementia
Increased agitation, fidgeting & repetitive movements
Tense muscles, body bracing
Increased calling out, repetitive verbalizations
Decreased functional ability, withdrawal
Change in sleep pattern
Increase in pulse, blood pressure & sweating

11. BEHAVOURAL ASSESSMENT TOOLS
Verbal rating scale (Closs 2004)
PAINAD (Volicer & Hurley 2015)
DOLOPLUS 2 Scale (Lefebvre-Chapiro S. 2001)
Abbey Scale (Abbey 2002)
DisDAT - Disability Distress Assessment Tool (Regnard, 2003)

12. Pain assessment tool for older people in care homes
Needs to know:
What type of pain?
Questions to residents who can tell you:
Where is the pain?
What makes your pain better?
What makes your pain worse?
How long have you had this pain?
Verbal rating scale:
“if 0/10 is no pain at all and 10/10 is the most excruciating pain you have ever had in all your life, what score would you give it?

14. Doloplus-2 scale Observation of patient behaviour
10 different situations that could potentially reveal pain
Somatic reactions x 5
Psychomotor reactions x 2
Psychosocial reactions x 3
One of four different levels of pain intensity [0-3] for each behaviour
Potential total score of 30 – pain is confirmed by a score of 5 or more
Common signs & symptoms of physical or affective discomfort in late-stage dementia
increased agitation, fidgeting & repetitive movements
tense muscles, body bracing
increased call out, repetitive verbalizations
decreased functional ability, withdrawal
changes in sleep pattern
increase in pulse, blood pressure & sweating

15. Doloplus 2 scale Somatic reactions Psychomotor reactions
Pain expressed through words, gestures, tears etc
Unusual protective body positions
Protection of sore area by defensive action/gesture
Facial expression
Sleep pattern
Psychomotor reactions
Pain while washing/dressing
Mobility
Psychosocial reactions
Communication
Social life
Behavoural problems

16. Isobel’s on-going story:
Already taking tablets on Step 2 WHO ladder
Continued NSAIDs and commenced oral morphine 6hrly 5mgs
Increased to 30mgs / 6hrly – then to MST 30mgs bd
Difficulty swallowing tablets – Fentanyl patch 25mcg
Fentanyl increased to 50mcg – started walking around NCH

17. Assessment and management

18. Assessment of pain for people with cognitive impairment
Behavioural observation scale – systematic review of behavioural observation scales (Zwakhalen et al, 2006)
DOLOPLUS2
Pacslac
PAINAD
Abbey

19. PAINAD (Volicer & Hurley 2015)
ITEMS 1 2
Score
Breathing
(independent of vocalisation)
• Normal
• Occasional laboured breathing
• Short period of hyperventilation
• Noisy laboured breathing
• Long period of hyperventilation
• Cheyne-Stokes respirations
     
Negative vocalisation
• None
• Occasional moan or groan
• Low-level speech with a negative or disapproving quality
• Repeated troubled calling out
• Loud moaning or groaning
• Crying
Facial expression
• Smiling or inexpressive
• Sad
• Frightened
• Frown
• Facial grimacing
Body language
• Relaxed
• Tense
• Distressed pacing
• Fidgeting
• Rigid
• Fists clenched
• Knees pulled up
• Pulling or pushing away
• Striking out.
Consolability
• No need to console
• Distracted or reassured by voice or touch
• Unable to console, distract or reassure
A total score of 2 or more indicates pain and requires action TOTAL

20. Abbey Pain Scale (Abbey et al, 2004)

22. Management of chronic pain in older people with dementia
Start ‘low’ and ‘go slow’
Use the WHO analgesic ladder – especially Step 2 but remember that codeine is more nauseating than an opiate
REGULAR analgesics + co-analgesics
PLUS APERIENTS
Softeners + pushers
Morphine is much less nauseating than ‘codeine’ – and much less sedating that Co-codamol 30mg/500

23. Management of chronic pain in older people with dementia… contd/
Older people have a greater sensitivity to medication especially opiates/NSAIDs
Start oral morphine at 2.5-5mg/6hrly
Morphine is less nauseating than high dose codeine
Collaborate with geriatrician – helps their knowledge and empowerment
Use ‘long acting’ analgesics [ie MST or patchesButrans/Transdec/Fentanyl patch] once pain control is properly assessed/titrated on quick release morphine
NB Fentanyl patch 25mcg is equivalent to Morphine 20mgs/4hrly

24. Rose’s story
Very advanced dementia – used to like to have a doll to cuddle. I had known of her but never really chatted to her. Crying out – daughter arrived:
Arthritis since mid-20s
Long term codeine / paracetamol medication regularly x 4 daily
Prescribed Quotiepine for ‘behavour’
Currently taking antibiotics for chest infection

25. ‘We face a big challenge in end-of-life care of older people, not because of demographics, but due to ignorance and prejudice among practitioners and the general public, failing to apply evidence to develop best practice and failing to spread good practice.’ (Philp, 2003: 153)

26. Thank you! Any questions?

27. References Frampton M (2003) Experience assessment and management of pain in people with dementia. Age and Ageing; 32: 3, Ferrell, B. A., Ferrell, B. R., & Rivera, L. (1995). Pain in cognitively impaired nursing home patients. Journal of Pain and Symptom Management, 10(8), 591–598. Weiner, D. K., & Hanlon, J. T. (2001). Pain in nursing home residents: Management strategies. Drugs and Aging, 18(1),13–29. Takai Y, Yamamoto-Mitani N, Okamoto Y, Koyama K, Honda A (2010) Literature Review of Pain Prevalence Among Older Residents of Nursing Homes. Pain Management Nursing, 11(4): Bernabei R1, Gambassi G, Lapane K, Landi F, Gatsonis C, Dunlop R et al (1998) Management of pain in elderly patients with cancer. JAMA Jun 17;279(23): McCarthy M, Addington-Hall J, Altman D (1997) The experience of dying with dementia: a retrospective study. Int. J. Geriatric Psychiatry, 12(3): 404–409 Closs et al (2004) A comparison of five pain assessment scales for nursing home residents with varying degrees of cognitive impairment. Journal of Pain & Symptom Management 27(3): 196–205 Volicer L & Hurley A (2015) Assessment Scales for Advanced Dementia. Health Professions Press, Inc. Baltimore, Maryland. Lefebvre-Chapiro, S. & the Doloplus group. (2001). The Doloplus 2 scale – evaluating pain in the elderly. European Journal of Palliative Care, 8(5),

28. Abbey J, Piller N, De Bellis A, Esterman A, Parker D, Giles L, Lowcay B (2004) The Abbey pain scale: a 1-minute numerical indicator for people with end-stage dementia. Int J Palliat Nurs Jan;10(1):6-13. Regnard C, Reynolds J, Watson B, Matthews D, Gibson L, Clarke C. Understanding distress in people with severe communication difficulties: developing and assessing the Disability Distress Assessment Tool (DisDAT). J Intellect Disability Res. 2007; 51(4): Zwakhalen SM, Hammers JP, Abu-saad HH, Berger MP (2006) BMC Geriatr. 27(6): 3