Dementia: Together Forever (Mobilising for best care , support and advocacy )

1. Dementia: Together Forever(Mobilising for best care, support and advocacy) E. Anthony Allen Consultant Psychiatrist Consultant in Whole Person Health and Church-based Health Ministries Website: www.eanthonyallen.com

2. DEMENTIA IS THE #1HEALTH PROBLEM WORLDWIDE FOR THE 21ST CENTURY • Advances in dementia are far behind those made for Cancer and HIV

3. The Burden of Dementia:Not Uncommon and Exploding • At least 1 in every 85 persons worldwide (or 1.2%) have dementia • Approximately 1 in 20 (or 5%) of the population over age 60 in Jamaica • With the percentage growth of our elderly population it will be 1 in 4 persons (or 25%) over 60 by 2050 ! • From 31.5 now to 115 million worldwide by 2050 • Alzheimer’s affects more than 17,300 persons locally • The numbers are growing daily

4. The Burden of Dementia:Neglected • A large percentage of persons undiagnosed locally and worldwide • 28 million of 36 million persons worldwide with dementia are undiagnosed

5. The Burden of Dementia:Costly • In the USA annual financial costs of AD patients can average US$25,000.00 for home care and US$50,000.00 for nursing home. • In the USA, the national cost of caring for people with AD is about $100 billion every year. • One dollar in every hundred produced by work worldwide is spent on dementia (1% of GMP) • The worldwide cost is as much as the total money produced by the 18th richest of the 196 countries in the world.

6. Dementia : Together Forever What should be our collective response? 1. MOBILIZE AS A TEAM FOR BESTCARE TO THE WHOLE PERSON Gain TEAMWORK AND WHOLENESS LITERACY

7. For best care we need to understand dementia.WHAT IS DEMENTIA?A disease of COGNITION COGNITION makes us Know and Understand?

8. Cognition is a function of the Brain that involves: • memory 2. using language 3. carrying out Learned Motor Behaviour(or doing things) 4. recognition of objects

9. Dementia • Progressive loss of cognitive functions (two or more) • Without impairment of consciousness (Different from Delerium which involves both, leading to “Confusional state”)

10. Memory problems ? Not always dementia ……..

11. Disorders of Mild Memory Function • NORMAL AGEING • MILD COGNITIVE IMPAIRMENT • DEMENTIA (These can merge into each other)

12. NORMAL AGEING • Aging • Mild loss of memory: names and dates • Verbal fluency remain intact and vocabulary may increase • Intact activities of daily living

13. MILD COGNITIVE IMPAIRMENT: CRITERIA (Amer. Acad. Neurology) • Memory complaints , by self and others • Memory impairment identified by objective tests • Normal cognitive function otherwise • Intact activities of daily living • Not demented Risk increases 10% annually. 85% of persons develop dementia by age 85 .

14. How does Dementia show itself?

15. DEMENTIA:Clinical Presentation includes: • COGNITIVE CHANGES • MOOD AND BEHAVIOUR CHANGES • IMPAIRED ACTIVITIES OF DAILY LIVING

16. Cognitive difficulties in two or more functions: • Memory Is my forgetting such as names, telephone numbers and where I put things affecting my function? • Language (Aphasia) Am I forgetting common words or losing my trend of thought while conversing? • Learned motor behavior (doing) (Apraxia), Do I have difficulty getting dressed or using objects like the TV remote, telephone or stove? • Recognizing (Agnosia,) Am I losing recognition of objects and people’s faces? • Executive Functions sequencing, planning, organizing Am I having difficulty doing complex tasks like balancing my cheque book or following the plot in TV movies and books?

17. DEMENTIA: Other features • Problem Moods and Behaviors depression, irritability, aggression, inappropriateness, agitation, apathy • Changes in Activities of Daily Living dressing, hygiene, handling money, household appliances, hobbies, social events • Psychiatric symptoms (e.g. psychosis, vulnerability to delirium)

18. Why is Dementia under-diagnosed ? • Persons can compensate and conceal in early stages • Have high index of suspicion • Ask caregivers/surrounding family and friends

19. How can we screen for dementia? Available Screening Tests • Memory Impairment Screen • Clock Drawing Test • The AD8 (caregiver responses) • And others

20. What are the main causes of dementia?

21. Degenerative Diseases of the brain • Alzheimer’s disease (Most common) • Lewy bodydisease (Second most common) • Parkinson’s disease (30% of patients) • Vascular dementia (10 to 20%) • begins with stroke and progression step-wise, suggesting recurrent vascular events • Infectious Disease • Creutzfeldt-Jakob disease (prion proteins) • Others -- Huntington’s disease • Frontotemporal dementias – e.g. Pick’s disease • Wilson’sdisease

22. REVERSIBLE DEMENTIA CAN OCCURDUE TO: Drugs (medication, alcohol), Delirium Depression Metabolic Disturbances (e.g. hypothyroidism) Nutritional Disorders (e.g. Vit. B12& Folic acid def.) Tumors, Toxicity, Trauma to Head (e.g. subdural Hematoma) Infectious Disorders (e.g. HIV, Syphilis)

23. How is a diagnosis made?1. Interview Diagnostic Instruments • Mini Mental State Examination (Folstein) – Maximum score 30 – Score <24 suggests delirium or dementia – Less sensitive in people with higher levels of education

24. 1. Interview Diagnostic Instruments (contd) • ADAS-Cog (Alzheimer Disease Assessment Scale-Cognitive) (more thorough) • St. Louis University Mental Status Examination (SLUMS) (for Mild Cognitive Impairment and dementia) is more sensitive 2.Neuropsychological testing

25. INVESTIGATIONS used to diagnose “reversible dementia” and causes of irreversible dementia 1.Physical and Neurological exam 2. Laboratory and other tests • Electrolytes, BUN, creatinine, CA++ • CBC • Thyroid studies • ESR • B 12 • Folate • VDRL/FTA-Ab, ANA, Anti DsDNA. • HIV Ab • Drug screen if appropriate • EKG • CXR • CT/MRI • LP if suspicion of infectious etiology • Brain biopsy.

26. ALZHEIMER’S DISEASE:DIAGNOSED BY EXCLUSION • There is no exact clinical test or finding that makes Alzheimer's disease unique. • Brain imaging: may find brain atrophy due to extensive neuronal loss • Diagnosis confirmed by histology of post-mortem brain • These degenerative changes are little understood and thus difficult to treat as we would like

27. AD and the Brain • Plaques and Tangles: The Hallmarks of AD • The brains of people with AD have an abundance of two abnormal structures: • beta-amyloid plaques, which are dense deposits of protein and cellular material that accumulate outside and around nerve cells • neurofibrillary tangles, which are twisted fibers that build up inside the nerve cell An actual AD plaque An actual AD tangle Slide 16

28. Biochemical abnormalities in AD Chemical Deficiencies: Problems with neurotransmitters • Reduced levels of the acetylcholine (drugs whose side effects lower ACh levels in the brain can cause reversible memory problems) • Excessive or erratic glutamate stimulation (impairs learning and can cause neuronal toxicity.)

29. Cell pathology in AD Regions affected in Alzheimer's disease (AD). Darker shaded areas, such as the cortex and hippocampus, are those most damaged in AD.

30. AD and the Brain The Changing Brain in Alzheimer’s Disease No one knows what causes AD to begin, but we do know a lot about what happens in the brain once AD takes hold. Pet Scan of Normal Brain Pet Scan of Alzheimer’s Disease Brain Less neuronal activity Slide 19

31. How does Alzheimer’s Disease progress?

32. Symptoms of developing AD: MildStage: 2- 4 years

33. Symptoms of developing AD: MODERATE Stage: 2 – 10 years

34. Symptoms of developing AD: SevereStage: 1-3 years

35. I have Dementia. I need you !You have dementia. You need me ! Dementia: Together Forever!

36. What is the best care for dementia? Goals: - Delay disease progression - Improve quality of life - Support dignity, self-respect Targets: - Cognition - Behaviour and mood, - Activities of daily living (function) Types: - Pharmacological - Non-pharmacological

37. Best Care is – A TEAM MATTER ANDA WHOLE PERSON MATTER • The Whole Professional Team, • The Whole Community, and • The Whole Nation together forever for • The Whole Person

38. Participating teams • Professional Whole Person Team Primary care and specialist Physicians, Psychiatrists/psychologists, Nurses, Social Workers, Pastors (Body, Mind, Social, Spirit) • Community Team - Patient at the centre! • Family • Other Caregivers • Friends • Neighbours • Congregation • Workplace • Support and Advocacy Groups • Government Agencies

39. Pharmacological Treatment Alzheimer’s Dementia Cholinesterase Inhibitors Donepezil (Aricept) Galantamine (Remenyl) Rivastigmine (Exelon) Memantine SSRI’s

40. Mild to Moderate Dementia Cholinesterase Inhibitors Slows cognitive decline Slows ADL decline Affects behavioral measures Reduces caregiver burden Delayed nursing home placement by 1.2 years

41. AD Research: Managing Behavioral Symptoms Between 70 to 90% of people with AD eventually develop behavioral symptoms, including sleeplessness, wanderingandpacing, aggression, agitation, anger, depression, and hallucinations and delusions. Slide 35

42. PHARMACOLOGICAL BEHAVIOURAL MANAGEMENT • Antipsychotics: increased risk of death in elderly patients with dementia. Atypicals better tolerated. 2. Benzodiazepines: sedation, riskof falls, worsening cognition, repiratorysupressant. • Cautious use for prominent anxiety, infrequently otherwise. • Lorazepam, Oxazepamhave no active metabolites • Consider Buspirone for anxiety. 3. Possible benefit (open verdict): Valproate, Carbemazapine, Citalopram. 4. Periodically reduce or stop to assess ongoing need.

43. What can be done by the team apart from using medication?

44. Team Factors for Successin Best Care • Effective Communication • Conflict management for consensus • Appropriate education on Dementia for all • Seek guidance about what to anticipate • Have a plan of action discussed by all (including the patient) • Exercise compassion & clarity with the patient

45. The Course of Dementia – Alzheimer’s Type • People usually live with AD anywhere from • 2-10 years • Some can have it as long as 20 years. • Let us as teams enable the best quality of • life possible in patients and our loved ones • for these years! ….. • Together forever! Team Care makes the difference

46. Non pharmacologic general care: THE WHOLE PERSON

47. Non-Pharmacological Behavioural Care:

48. Dementia : Together Forever What should be our collective response? 2. WORK AS A TEAM TO SUPPORT ALL CAREGIVERS Gain CAREGIVER STRESS LITERACY

49. Where are people with AD cared for? • family homes • assisted living facilities (those in the early stages) • nursing homes (special care units) Slide 6

50. Support for Caregivers Who are the AD Caregivers? • Spouses– the largest group. Most are older with their own health problems. • Daughters – the second largest group. Called the “sandwich generation,” many are married and raising children of their own. These children may need extra support if a parent’s attention is focused on caregiving. • Grandchildren – may become major helpers. • Daughters-in-law – the third largest group. • Sons – often focus on the financial, legal, and business aspects of caregiving. • Brothers and Sisters – many are older with their own health problems. • Helpers, practical and registered nurses – Often beat the brunt of behavioural problems • Others– friends, neighbors, members of the faith community. Slide 37