Dementia , the 21st century epidemic: Malta and beyond

1. Dementia, the 21st century epidemic:Malta and beyond Dr Charles Scerri PhD Department of Pathology, University of Malta Old Age Psychiatry Study Morning 13th March 2012 Maltese Association of Psychiatric Nurses (MAPN)

2. Frau Auguste D. Admitted to Frankfurt hospital: Nov 25, 1901 Age: 51 Symptoms: severe memory impairment confusion unpredictable behaviour paranoia hallucinations Died: April 8, 1906

3. Nov 26, 1901 • What is your name? • Auguste • Family name? • Auguste • What is your husband's name? • I believe ... Auguste • How old are you? • Fifty-one • Where do you live? • Oh, you have been to our place • Are you married? • Oh, I am so confused • Where are you right now? • Here and everywhere, here and now, you must not think badly of me • Where are you at the moment? • This is where I will live • Where is your bed? • Where should it be?

4. “Sometimes she greets the doctor as if he were a visitor..…on other occasions she screams that he wants to cut her open..…on others yet she fears him as a threat to her honour as a women..…she seems to have auditory hallucinations. Often she screams for many hours in a horrible voice”. (A. Alzheimer, 1907).

5. New concept? ‘My sovereign master, old age is here. Senility has descended on me…my spirit is forgetful and I can no longer remember yesterday’ Maxims of Ptah Hoty, 9th Century BC, Egypt 4th Century BC, Hippocrates: Dementia ‘a consequence of ageing’ 2nd Century BC, Cicero: ‘The senile folly’ 1st Century AD, Celsus: Dementia defined as ‘out of one’s mind’

6. Mentally insane • Crazy • Mentally deficient Social rejection Shame, isolation STIGMA “zmagat”

7. What is dementia? “a clinical term referring to a group of brain diseases that result in the progressive deterioration of cognitive functions. These cognitive changes are commonly accompanied by disturbances of mood, behaviour and personality”

8. DEMENTIA Different forms of Dementia • Alzheimer’s Disease (~50-70%) • Vascular Dementia (~15%) • Dementia with Lewy Bodies (~10 -15%) • Fronto-temporal Dementia • Dementia secondary to disease

9. DEMENTIA • Is a major health problem affecting both genders and all socioeconomic groups. In general, there is predominance in women • Affects 2-3% of the elderly population at age 65 years • Incidence doubles every 4 years in reaching 30% at 80 years • Individuals with dementia have shortened life expectancy (average survival is 8 years following diagnosis) • World-wide estimates: 35.6 million in 2009 to 115 million by 2050

11. DEMENTIA • Major predictor of morbidity and mortality in the elderly • Costs more than cardiovascular disease, cancer and stroke put together • Worldwide costs calculated at $602 billion (ADI, 2010). If dementia was a country it would be the 18th largest economy in the world. In Malta, costs range in between €63-€96m (Wimo, Winblad and Jonsson: Alzheimer’s & Dementia 2010; 6(2), 98-103) • 7.3 million people have dementia in EU-member states

12. Malta GDP – $9.65b (2009), Dementia: 0.65 – 1% of Malta GDP

13. 100 75 50 25 0 France Germany Italy UK Home care Residential or hospital care Percentages of individuals with dementia in home care versus residential or hospital care in selected countries (Source: Alzheimer Europe – 1997 data). Percentage of caregivers spending more than 10 hours every day in caring (Source: Alzheimer Europe).

14. DEMENTIA – Risk Factors AGE • World population grew from 3 billion in 1959 to 6 billion in 1999 – doubled in 40 years • Growth will continue more slowly to 9 billion in 2042 – 50% increase in 42 years • 6% of the world population is aged 65+ 17% in the UK 15% in Malta 14% in Europe 3% in African countries

15. Age and Prevalence of Dementia Percentage of all dementia types (% of population) Age groups (years) EUROCODE data, Alzheimer Europe (2010)

16. DEMENTIA – Other Risk Factors • Heart disease, stroke, hypertension, cholesterol, diabetes, depression • Gender (AD: F>M, VaD: M>F) • Repeated head trauma (dementia pugilistica) • Obesity • Genetics (first degree relative ↑ risk) • Presence of ApoE4 gene • Medical history (Down’s syndrome, HIV infection) • Low levels of mental stimulation, social activity and exercise

17. DEMENTIA – Diagnosis • There is no single test to determine the presence of dementia • Average time taken for diagnosis after symptoms appear: 20 months • Why? often mistaken as normal ageing • Reason? Lack of awareness • Full physical examination and blood tests • Assessment of memory function: psychological tests (MMSE) • Brain scan to check for anatomical changes in the brain

18. ALZHEIMER’S DISEASE First reported by Alois Alzheimer in 1906 amyloid plaque (aggregated Aβ peptides) neurofibrillary tangle (NFT) (hyper- phosphorylated tau protein) Others:Neuronal loss Auguste’s post-mortem : neuropathological lesions

19. Post-mortem comparison between normal and AD brains. Note the overall shrinkage of the brain in AD

20. Post-mortem brain slice of patient with severe AD. Note the enlarged volume of the ventricles

21. AD - Progression Early stages: loss of short-term memory often leading to repeating information. Confusion, poor judgment, unwillingness to try out new things Middle stages: Increase in memory loss. Failure to recognise people or confuse them with others. May become angry or aggressive. Wandering. Inappropriate behaviour. May experience hallucinations Late stages: Total dependence. Loss of memory almost complete. Physically frail. Difficulty in eating. Weight loss. Incontinence. Loss of speech

23. Intelligence, judgment and behaviour Language Memory

24. Treatment No cure. Treatment mainly symptomatic AChEIs – Acetylcholinesterase inhibitors • Increase acetylcholine that is present in low quantities in the brain of AD patients by blocking its degrading enzyme • ACh is a neurotransmitter important in cognitive function • First pharmacological treatments to be approved for AD by FDA • Delays disease progression • donepezil (Donecept®, Aricept®), galantamine (Reminyl®), rivastigmine (Exelon®) • Dose increased to maximum until tolerated.

25. Treatment Glutamatergic-system modifiers • Glutamate plays an important role in the pathophysiology of AD • Glutamatergic neurotransmission is important in learning and memory • Overstimulation of glutamate receptors by glutamate leads to calcium overload resulting in neurotoxicity • Memantine (Axura®) is a glutamate receptor non-competitive partial antagonist that blocks glutamate-associated neurotoxicity • Therapeutic doses are well tolerated • May be more effective if combined with AChEIs

26. The use of antipsychotic drugs in dementia ‘Antipsychotics for the management of behavioural and psychological symptoms associated with dementia should only be used with extreme caution and only when necessary’ ‘Extensive use of these drugs is associated with an increase in mortality’ NICE Guidelines, 2006; UK Department of Health, 2009; BMJ (2012) 344:e977 doi: 10.1136/bmj.e977 (Published 23 February 2012)

27. A progressive increase in the elderly population The situation in Malta 28%

28. Decrease in old-age dependency ratio

29. Malta Medical Journal, 19(2), 2007

30. Increase in the number of PWD by 2050 Malta Medical Journal, 19(2), 2007

31. Dementia cases in Europe(Alzheimer Europe, 2009) Malta1.11%

32. Malta Dementia Strategy Group • Launch: May 2009 • Objective: Develop a series of recommendations on a strategic plan to enhance dementia care in Malta • Tasks: Current situation, consultation process, final recommendations • Report completed and presented in January 2010

33. Current Situation Analysis Results 1. Lack of awareness General Public Healthcare professionals Awareness will improve early diagnosis and reduce stigma A 5 year delay in the onset of AD will decrease AD prevalence by 50%

34. 2. Lack of psychological support to carers and PWD Approx. 60-90% of carers suffer from depression/breakdown/anxiety/ guilt feelings ‘I feel obliged. I feel so guilty. I can’t get away from that. It’s terrible. I can’t even live my own life...I really wish I could run away but I can’t. I can’t even leave. She has trapped me really’ Daughter of a PWD

35. 3. Lack of financial support Most carers have to stop working with disease progression (most dementia patients are cared at home) No reimbursement for anti-dementia drugs ‘the problem about the pills is that they are too much expensive..I take the lowest part of my pension you know..’ Husband of a PWD ‘about a third of my pension goes to the chemist you know..If I have a little bit of interest from the bank, because I had some money in the bank, I spend all the interest on medicine’ Wife of a PWD

36. 4. Lack of infrastructure No dementia homes Most elderly homes are not dementia-friendly 5. Lack of research in dementia care Healthcare students will be less prepared for the future Fragmentation in academic preparation 6. Absence of community services PWD and carers are left to fend on their own

37. Recommendations • Improving awareness on dementia in the community and in relevant professional and non-professional fields • Improving early diagnosis and intervention • Providing good quality information at the point of diagnosis and beyond • Financial support for anti-dementia medication • Increase knowledge of services that are already available for individuals with dementia and their carers • Improve the quality of service in acute and long-term care • Improving support services for individuals with dementia and their carers within the community • Improving end-of-life support services for individuals with dementia and their cares

38. June 2010 – Half-day SeminarNursing profession in Malta Topic – Dementia care, management and policy Methodology – 20-point questionnaire (Likert scale) distributed and collected prior to commencement of the seminar Response: n=196 (81% response rate)

39. % ♂ 20.4% ♀ 79.6% Gender distribution Age bracket (years) % Place of work

40. % Dementia is still a taboo subject SA: Strongly Agree A: Agree NA/ND: Neither Agree nor Disagree D: Disagree SD: Strongly Disagree % IWD are marginalised

41. % I have enough knowledge/training to care for IWD SA: Strongly Agree A: Agree NA/ND: Neither Agree nor Disagree D: Disagree SD: Strongly Disagree % Working with IWD is very challenging

42. % There are enough services for IWD and their carers SA: Strongly Agree A: Agree NA/ND: Neither Agree nor Disagree D: Disagree SD: Strongly Disagree % IWD behave very much like children

43. Nurses caring for a relative with dementia (n=41)vsNurses not caring for a relative with dementia (n=152) p<0.05 Working with IWD is very challenging p<0.05 IWD behave very much like children SA......NA/ND......SD 1 3 5 ↓ value → ↑ agreement

44. Nurses caring for a relative with dementia (n=41)vsNurses not caring for a relative with dementia (n=152) p<0.01 Because of their condition IWD don’t feel pain SA......NA/ND......SD 1 3 5 ↓ value → ↑ agreement

45. Nurses working with IWD (n=114)vsNurses not working with IWD (n=81) p<0.001 I have enough knowledge/ training to take care of IWD SA......NA/ND......SD 1 3 5 ↓ value → ↑ agreement

46. Conclusions • Nursing professionals consider IWD to be marginalised and that services intended for these individuals and their carers are lacking • There is not enough knowledge and training in dementia and that working with these individuals is considerably challenging • A significant number of nursing professionals agreed that IWD behave like children • Important differences were reported based on whether nursing professionals have a relative with dementia or work with an IWD • These results show important deficiencies in the nursing profession with respect to various aspects of dementia care and management

47. Summary - Major Challenges • Lack of awareness (public and healthcare professionals) • Lack of training in various aspects of dementia care and management • (disease model versus patient-centred care model) • Lack of coordination among the various players • Lack of information about the support that is available to IWD • Lack of services • Lack of research • Lack of a holistic national plan

48. ‘Real generosity is doing something nice for someone who will never find out’