1. Responding to the Pain Experiences of People With a Learning Difficulty and Dementia Diana Kerr, Colm Cunningham and Heather Wilkinson

2. Catalyst for the Research Research within the non disabled population

3. Growing Older Can Be Painful Higher levels of disability in older age leads to greater incidence of physical pain ( main and Spanswick 2000) 64-86% of older people suffer with chronic pain (Tsai and Chang 2004 )

4. Pain Relief for People With dementia People with dementia are prescribed and given less analgesia than other older people(Horgas and Tsai 1998) Even when analgesia prescribed to a person with dementia 83% did not receive their medication ( Dawson 1998)

5. Home for Good? This study raised concerns that the experience of people in the general population may be being replicated for people with a learning disability.

6. The Study Throughout the U.K Voluntary, statutory and private providers

7. People Who Took Part People with dementia Direct care staff Managers GP’s Community nurses Psychologists Psychiatrists Occupational therapists

8. Findings

9. Diagnostic Overshadowing Learning disability can often override and obscure physical illness (Ng and Li 2003;12) Compounded by the diagnosis of dementia. Roger and night time disturbance.

10. Behaviour That Challenges People with a learning disability..more often present with behaviour that challenges their carers and services than their non disabled age matched peers( Meyer and Evans 1994) Given a high priority in training Response needs to be reviewed when someone has dementia.

11. What do you do when you are in pain ? Scream Hit out Not eat Withdraw Anxious Moan Cry Become easily irritated Angry Aggressive Pace Swear

12. Jane Give someone paracetamol and see if the behaviour changes. Then carry out an assessment. Use a pain assessment tool. There was only one tool used within the whole study.

13. Communication Difficulties Associated With Dementia Loss of previous level of verbal skills Can no longer find the word ‘tooth ache’ Loss of sense of geography of the body Can no longer locate the toothache Use generalised words’ head hurts’ Well remembered words ‘tummy ache’ Use substitute phrases: ‘oh dear oh dear’

14. Previous History Influencing Present Assessments New behaviours can be seen as regression. May be same behaviour with different motivation and meaning. ‘Up to his old ways.’

15. Beliefs About Pain Thresholds The belief that people with a learning disability have high pain thresholds persists. There is no evidence to support this. Keith’s story. Previous experiences may inhibit people’s willingness to complain of pain.e.g.. Being ignored when younger or being badly and painfully treated. Have learned ‘to be good and not cause trouble’ They may communicate pain in a different way.

16. Insufficient Awareness of the Impact of Older Age on People with a Learning Disability Training has concentrated on younger people. Reports on arthritis pain by people,with a learning disability and dementia. Experience of GP’s not extensive. Depend on staff reports and knowledge

17. Prevention Chairs and people with Down’s syndrome.

18. The Use of ‘As Required’ PRN Medication This was standard practice. Burden on staff.

19. W.H.O Guidelines 1.‘As required’ should not be primary approach to pain relief for people with dementia 2.Regular administration 3.Adjusted stepwise according to increase, decrease in pain and history of response to side effects 4.Monitored

20. Recommendations All staff require training on the impact of dementia. Raise awareness of pain as a possible explanation for changes in the person.NOT hard to do. Challenge the response to challenging behaviour. ‘As required’ analgesia should not be primary response. Use non pharmaceutical interventions for prevention and management.

21. References Main C. And Spanswick C.2000. Pain management. An interdisciplinary approach. Edinburgh: Churchill Livingstone Tsai, p and Chang J (2004) ‘assessment of pain in elders with dementia’ Medsurg nursing Vol 13, no 6 pp364-90 Morrison R and Sui AL ( 2000)’ A comparison of pain and its treatment in advanced dementia and the cognitively intact patients with hip fracture’ journal of pain and symptom management Vol 19 no 4 pp 240 –8 Horgas A and Tsai P (1998) ‘analgesic drug prescription and use in cognitively impaired nursing home residents’ nursing research Vol 47 no 4 p 235 Dawson p ( 1998 ) cognitively impaired residents receive less pain medication than non- cognitivley impaired residents’ perspectives vol 22 no 4 pp 16-17 Prasher V ( 1995)Age- Specific prevalence;Thyroid Dysfunction and depressive Symptomology in Adults with Down’s syndrome and dementia. International Journal of geriatric psychiatry 10,25-31

22. Responding to the pain experiences of people with a learning difficulty and dementia York publishing services for Joseph Rowntree foundation 64 Hallifield road LayerthorpeYork YO31 7ZQ Web: www.jrf.uk/bookshop