Lorraine Burgess Macmillan Dementia Nurse Consultant The Christie, Manchester

1. The Complexities of working with patients with a dual diagnosis of Cancer and Dementia Dementia Lorraine Burgess Macmillan Dementia Nurse Consultant The Christie, Manchester

2. Aims To examine dementia and its complex interactions in the person affected by cancer undergoing treatment and or in receipt of care. .

4. Question • How does society view people with dementia?

5. Myths • Only old people get dementia • Dementia is a natural part of ageing • Someone with memory loss has dementia • People with dementia cant make decisions • People with dementia are aggressive • Alzheimer’s is the same as dementia

6. Discussion • Barbara’s story • https://www.youtube.com/watch?v=VFXirEnjfT I

7. Dementia Defined “Dementia is a progressive and largely irreversible clinical syndrome that is characterised by a widespread impairment of mental function” NICE (2006), p.4 Features: • Short term memory deficit • Word finding difficulties • Poor concentration • Reduced problem solving skills • Agitation / Anxiety • Withdrawal • Aggression • Emotionally labiality • Sleep disruption • Appetite changes • Hallucinations • Delusions

8. Types of dementia

9. Dementia • Memory must be impaired to make the diagnosis of dementia. • Loss of memory for recent events is the earliest feature of dementia. • Subsequent symptoms include abnormal behavior, loss of intellect, mood changes, and difficulty coping with ordinary routes. • Insight may be retained initially, but is then usually lost. • Ultimately, there is loss of self-care, wandering, incontinence, and often paranoia • Other conditions can mimic it .

10. Cancer and co-existing Dementia

11. What do we know? • 50% of cancers occur in over 65s • Head and Neck – 39% male, 53% female (Cancer Research UK, 2014) • 95% of dementias occur in over 65s • 1 in every 14 • Both diseases of the older person • Safe to assume that co-existence is high?

12. The relationship between cancer and dementia? • Lack of studies looking at this relationship • Mainly focus on mortality • Patients often complain of cognitive dysfunction • Often related to treatment side affects, fatigue, depression etc (Rogers et al, 2008) • Some studies show an inverse relationship • Lower rates of Alzheimer’s in cancer survivors • Lower rates of cancer in people with Alzheimer’s (Roe et al, 2005, Attner et al, 2010, Roe et al, 2010 and Driver et al, 2012)

13. The relationship between cancer and dementia?Continued… • Explaining this… • People with dementia under-report symptoms • Present with more advanced cancers (McCormick et al, 1994} )

14. The implications of hospital admissions • Hospital stays = poorer outcomes • Longer inpatient stays • Increased chance of discharge to institutional care • Worsening of dementia symptoms • Higher mortality rates (Alzheimer’s Society, 2009)

15. How can dementia complicate treatment? • Impaired capacity • Difficulties understanding implications of illness • Failed appointments • Reduced ability to follow treatment plans • Under-reporting of treatment-related symptoms • Reduced ability to self-care • Carer’s put under increasing strain

16. Head and Neck cancer and dementia • ? ? ? ? – mainly anecdotal • Delirium a common condition in outpatients • Often in patient’s with co-morbidities • Results in medical / treatment complications (Bond et al, 2012) • Delirium associated with poor outcomes • Two-fold increased risk of mortality within 12 months • Can further decline cognitive and physical functioning (Inouye, 2006, Bellellie et al, 2007)

17. Consider prior to treatment, mental capacity and Best Interest Decisions • Ultimately comes down to the decision maker • Must take into account: • Patient’s views / wishes / beliefs • Views of people closest to patient • Clinical judgement • Least restrictive option • Likelihood that the proposed intervention will benefit • Doesn’t have to be a meeting (BMA, 2009)

18. Case Study – Mr Gallagher Retired architect a 78 years old Lives with wife Hypertensive TIA Tremor • Aspirin, Simvastatin, Losartan • Multiple myeloma, 2015, treated with four cycles of CTDa, VTPR (29.01.2016: Paraprotein 2.3)

19. Case Study – Mr Gallagher Consented for Melphalan-conditioned autologous stem cell transplant, predominant risks explained of infection and bleeding, leading to a multi-organ failure/Critical Care Unit rate of 5-10%. Also informed would cause marked mucositis, alopecia, transient blood product dependence, fatigue and nausea. Made aware would be in hospital for 3-4 weeks, and would require at least another couple of months thereafter for recovery. Prepared to take the risks

20. Post transplant • Poor Mobility – falls, shuffled • Agitated, restless required 24 hr 1-2-1 care • Poor sleep- nightmares • Confused • Disorientated • Poor concentration • Hallucinations, children and animals- Haloperidol • Slow thought processess • Tremor

21. Case Study – Mr Gallagher • Screened for cognitive impairment • Poor short term memory • Mini-mental state completed - 20/30 • More agitated – medication reviewed to quetiapine • Areas of difficulty: • Orientation - – forgetfulness – language and visual spatial issues • Positives: • Some awareness of memory problems • Recognised staff and family • Good sense of humour

22. Case Study - Mr Gallagher • Functional assessment • Difficulty with PADL tasks – bathing, dressing etc • Assistance required with medications • Social / Psychological • Isolated, low mood – depressed? • Would continue whilst in side ward Nutrition Reluctant to eat- weight loss

23. Best interest meeting • Planning • Possible diagnosis • Neighbour a neuroscientist had noted tremor, shuffle prior to treatment- wife shocked.

24. Case Study – Mr Gallagher • Developed C diff – made more confused, stir crazy • Brain scan – vascular ischaemic issues ? LBD • Wife devastated- “This wasn’t the man I married, I cant have him home”

25. Case Study – Mr Gallagher In hospital 12 weeks: Cognitive state started to improve • Reviewed functional assessments • Started to dress independently • Still restless • GP to refer to memory clinic on discharge • Referral to social services • Carers – medication aids – fall detectors etc • Wife remained distressed and anxious “ Cant cope”

26. Finally • Improved slowly • Came out of hospital • 24 hr care • “ if I would have known this would happen would never have had treatment” • Wife depressed- required a lot of emotional support • Memory assessment • Still ongoing hallucinations

27. Outcome • What could have been differently? • Fraility Screening • Consider co-morbidities

28. 5 As • Amnesia • Asphasia • Apraxia • Agnosia • Associated Features

29. Consider How may the 5 As impact on the following behaviours? • Wandering • Incontinence • Vocalisation • Non compliance of treatment • Aggression- whether physical or verbal.

30. Consider

31. This Is Me

32. Don’t blame Dementia Consider • Pain – Pain AD • Bowels • Mood • Environment • Attitudes • Habits/Routines

33. In summary… • Patients with dementia have a raw deal • What are the implications of dementia and cancer? • Needs more research • Comprehensive assessment is key • Determines what support is needed • Capacity and consent- Ask to repeat what explained • Leads to developing a unique pathway

34. Delirium • https://www.youtube.com/watch?v=BPfZgBmcQB8

35. References • Bellelli, G. et al (2007) Delirium Superimposed on Dementia Predicts 12-Month Survival in Elderly Patients Discharged From a Postacute Rehabilitation Facility. Journal of Gerontology: Medical Sciences, 62A(11), pp.1306-1309. • Bond, S.M., Dietrich, M.S., Shuster, J.L. and Murphy, B.A. (2012) Delirium in patients with head and neck cancer in the outpatient treatment setting. Support Care Cancer, 20, pp.1023-1030. • British Medical Association (2009) Consent Tool kit (5thed) British Medical Association [Online]. Available from: http://bma.org.uk/practical-support-at-work/ethics/consent-tool-kit Last Accessed: 27/02/2015 • Ellis, G., Whitehead, M.A., Robinson, D. O’Neill, D. and Langhorne, P. (2011) Comprehensive geriatric assessment for older adults admitted to hospital: meta-analysis of randomised controlled trials. BMJ, 343, p.6553. • Gosney, M. and Dann, N. (Unknown). Available from: http://www.southreadingccg.nhs.uk/images/publications/PDFs/4%20Comprehensive%20Care%20for%20Older%20Patients%20Professor%20Margot%20Gosney%20and%20Ms%20Nicola%20Dann%2014th%20May%202013.pdf. Last Accessed: 24/02/2015. • NICE (2006) • Solomons, L., Solomons, J. and Gosney, M. (2013) Dementia and Cancer: A Review of the Literature and Current Practice. Aging Health, 9(3), pp.307-319. • Roe CM, Behrens MI, Xiong C, Miller JP, Morris JC. (2005) Alzheimer disease and cancer. Neurology, 64(5), pp.895–898. • Roe CM, Fitzpatrick AL, Xiong C et al (2010) Cancer linked to Alzheimer disease but not vascular dementia. Neurology, 74(2),pp.106–112. • Inouye, S.K. (2006). Delirium in older persons. NEJM, 354(11), pp.1157-1165. • Driver JA, Beiser A, Au R et al. (2012) Inverse association between cancer and Alzheimer's disease: results from the Framingham Heart Study. BMJ, 344,e1442 • Attner B, Lithman T, Noreen D, Olsson H. Low cancer rates among patients with dementia in a population-based register study in Sweden. Dement. Geriatr. Cogn. Disord.30(1),39–42 (2010). • McCormick WC, Kukull WA, van Belle G et al.(1994) Symptom patterns and comorbidity in the early stages of Alzheimer's disease. J. Am. Geriatr. Soc.42(5), pp.517–521. • Rogers, L,Q. et al (2008) Factors associated with fatigue, sleep and cognitive function among patients with head and neck cancer. Head and Neck, 30, pp.1310-1317.

36. Thank You for Listening • Any Questions ? lorraine.burgess@christie.nhs.uk