Better Disease Management through Support in the Community: Care for Persons with Dementia

1. Better Disease ManagementthroughSupport in the Community:Care for Persons with Dementia Dr David Dai Prince of Wales Hospital Hong Kong Alzheimer’s Disease Association 2009

2. The Aging Dilemma among People with Intellectual Disability(Janicki, J Pol & Pract in ID 2009,6(2): 73-76) Macau Declaration on Ageing for Asia and the Pacific and Plan of Action: • lifelong practices for healthier old age • community participation • specially designed services and supports • diverse cultural traditions interwoven into research in gerontology, geriatric medicine, and eldercare

3. Hong Kong Bycensus 2006 > 65 yrs 1996: 10.1% (630,000) 2006: 12.4(853,000) 2033: 27% Median age(yrs) 1996: 34 2006: 39 Ageing of the Aged 老年的老化 65+ID: 3408

4. Ageing Issues in Persons with Down’s Syndrome and Intellectual Disability:

5. The Elderly with Intellectual Disability (ID):A challenge for old age psychiatrists and geriatricians(Curr Opin Psy 2002, 15: 383-386) • Small but rapidly growing population • Exponential increase in life expectancy: improved public health and medical care • US: 1930 20yrs 1980 60yrs • Mild ID life expectancy approaching general population 智障人口急劇老化

6. Longest: women with mild ID, ambulatory and self caring • Lowest: men with greater disabilities

7. Prevalence of mental and physical health problems(Curr Opin Psy 2007, 20: 467-471) Cooper (1997): Elder (>65yrs) vs Younger higher rates of dementia ( 21.6%/ 2.7%) general anxiety disorder ( 9%/ 5.5%) depression (6.5%/ 4.1%) DS with dementia(50-64yrs): 13% 精神與身體健康

8. Higher rates of physical illness: incontinence, immobility, hearing impairment, arthritis, hypertension, CVS, Resp, Cerebrovascular

9. Strydom et al (2005) • psychiatric symptoms (74%): restlessness, irritability, low mood, loss of energy, loss of concentration, loss of self care skills • comorbid conditions(74%): CVS (35%) Sensory impairment ( 74%) Mobility (30%)

10. By 30-40 years of age, amorphous amyloid deposition will have been present for some years Mann & Esiri, 1989

11. Prevalence estimates Aylward et al 1995 identified cognitive impairment falls far below that which would be predicted from the neuropathological data (Liss, et al, 1980, Ropper & Williams, 1980, Wisniewski, et al 1985)

12. 關注智障人士老齡化工作小組 探討智障人士老齡化的情況 調查報告

13. 關注智障人士老齡化工作小組 探討智障人士老齡化的情況 調查報告

14. Diagnosing dementia in DS:difficulties • Signs of early dementia may be undetected as pre-existing cognitive impairment may mask symptoms • Institutionalisation may mask symptoms • Task of assessment can be difficult • Sensory impairments, seizures (and AED), hypothyroidism may also impair cognition • Depression can cause functional and cognitive decline 斷診之困難

15. Diagnostic challenge • Overshadowing • Impaired verbal communication and cognitive abilities • Atypical presentations • Inadequate training of doctors and healthcare professionals 斷症困難

16. Alzheimer’s Disease 阿耳茲海默氏病 1907, 發表第一個病人的報告 痴呆症 Increased Understanding

17. The Person with Dementia in the Community, 2009 NGOS Charity organizations (Churches) Non Acute Hospital Acute Hospital AED Specialty OPD (Geriatric, Neurology, Psychogeriatric, Medical) Private clinics/Hospital Medical Orthopedics Surgical Children FM Clinic Integrated day & Inhome programme of HKADA Elder Relative Residential Homes Respite residential (Short stay 1-3 weeks) At Home Institution Clinic Home care

18. Barriers in Care for the PWD,2009 Long Waiting list NGOS Charity organizations (Churches) Non Acute Hospital Specialty OPD (Geriatric, Neurology, Psychogeriatric, Medical) Care plan Acute Hospital AED Care plan Private clinics/Hospital Medical Orthopedics Surgical Access Children Long Waiting time Care plan Early Evaluation and treatment Long Waiting list Early identification FM Clinic Integrated day & Inhome programme of HKADA Care plan Elder Relative Long Waiting list Residential Homes Access Respite residential (Short stay 1-3 weeks) At Home Dementia programme Long waiting time Inadequate support

19. Barriers • Knowledge in the family and community: ( delay in diagnosis, stigmatization) • Access to Diagnosis: ( delay in intervention and support) • Inadequate community support: ( intensify carer burden, premature institutionalisation and complications) • Fast response to medical and health crisis: ( functional deconditioning, inappropriate care, morbidity and mortality, institutionalisation)

20. Risk factors 危機因素:Late onset AD:Life Course Disease • Family history (家族史) • Lack of hobbies (閒暇) • Significant life events (生命事件) (Shaw, 1992) • Low education(低教育) (Zhang, Guo, 1997; Chiu, 1998) • Head Injury • ApoE4(載體蛋白E4基因 ): lower prevalence in Chinese frequency: 0.067 in normal; 0.169 in AD (Hallman, 1997; Mak, 1996) Possibilities for Risk Modification

21. Late Onset AD 老年性 Raise reserve 老化 大腦儲備 Reconditioning Drugs 病理 Brain Reserve Neuropathology Ageing Degenerative

22. Public Education 社區教育 Early detection and Life Course Approach to Brain Health

23. Based on Evidence The Lancet Neurology Vol 3 June 2004 http://neurology.thelancet.com

24. 子曰 吾十有五而志於學(Education) 三十而立(Occupation) 四十而不惑(Life style) 五十而知天命(Restore Reserve) 六十而耳順(Social Engagement) 七十而從心所欲，不踰矩 Successful Ageing Based on Wisdom

25. Outcomes of Public Education • Increased awareness to early symptoms • Early identification and medical intervention • Reduction in stigmatization by family and society • Preventive aspects on brain health

26. Early Detection circumventing long waiting time for specialist consultations

27. Early detection program (EDP) Normal aging Mild cognitive impairment Mid – late stage dementia Early dementia • Rationales for the EDP : • Model of successful aging (Rowe & Kahn, 1997). • A fast-growing aging population in Hong Kong. • Protective effects of late-life intellectual stimulation on incident dementia (Ball et al., 2002; Scarmeas et al., 2001; Wilson et al., 2002) Ball K, Berch DB, Helmers KF, et al. Effects of cognitive training interventions with older adults. JAMA 2002; 288: 2271-2280. Scarmeas N, Levy G, Tang MX, Manly J, Stern Y. Influence of leisure activity on the incidence of Alzheimer’s disease. Neurology 2001; 57: 2236-2242. Wilson RS, de Leon CFM, Barnes LL, et al. Participation in cognitively stimulating activities and risk of incident of Alzheimer disease. JAMA 2002; 287: 742-748.

28. Functional Assessments • Lawton IADL • Barthel ADL Neuropsychological Assessments • Abbreviated Mental Test (AMT) • Screening tool • Mini-Mental State Examination • Clinical Dementia Rating Scale • Fuld Object Memory Evaluation • Episodic memory • Digit Span Forward & Backward • Attention & working memory • Clock Drawing Test • Geriatric Depression Scale Assessment administered by an occupational therapist

29. Family Physician – HKADA Collaboration Family physician HKADA • -Public education • -Screening • -Integrated day-home-care • Resources center • Care plan • Carer support -Opportunistic case-finding -Diagnosis -Drug treatment -Training -Education -Case Conference -Liaison Medical Input Non-drug Mx Environmental Respite Residential

30. The Family Physician: Pivotal Role • Early diagnosis and treatment • Opportunistic screening of clients > 75yrs • Counseling of clients and family • Rapid response to health and social crisis in the pwd and family • Recruit community resources for the family • Initiate advance care planning

31. Collaborative Training with College of Family Physicians

32. Community Support:Attending toCare needs of clients and family at different stages Health Psychosocial Ethico-legal The Integrated Day and Inhome Programme of HKADA

33. Hong Kong Alzheimer’s Disease Association

34. Holistic Services Day Centre • To release caregivers’ burden by giving them a break • To use different non-pharmacological therapies to delay client’s deterioration and maintain their well-being by occupational therapists

35. Holistic Services In-home training • To design comprehensive care plans and home training for individual with dementia in order to maintain his/her abilities in daily functioning by occupational therapists • To render professional advices on home care management in long term caregiving work of family

36. Holistic Services Helplines • To provide relevant information, answering queries and making referral for other community service as well as to handle crisis situation when necessary.

37. Holistic ServicesCarer support • A group of mutual help and support, which is conducted by carers and our social workers • Through gathering and different topics sharing, it provides different resources and emotional supports for carers • Social worker also follows up on families in need provide appropriate counseling and services

38. Holistic Services Counseling • To provide emotional support • To enhance abilities to identify and cope with problems encountered due to the disease • To reduce their emotional stress and social burdens

39. Holistic Services Resource Centre • Everyone is welcome to our Resources Centre for a collection of relevant information, including books, magazines, Newsletter, audio-visual materials, etc.,

40. Voice Online - Discussion Forum聲音在線 - 討論區 http://www.hkada.org.hk

41. Browser 1. 醫療及藥物 2. 照顧 3. 心聲網誌 • 試驗期：12/6/2008-17/8/2008 • 正式啟用日期：18/8/2008 • 總瀏覽人次 : 8645 (28/4/2009)

42. Create Value and Meaning Meaningful and Cognitively Enhancing Activities Multiple Intelligences and The 6 Arts

43. Late Onset AD 老年性 Raise reserve 老化 大腦儲備 Reconditioning Drugs 病理 Brain Reserve Neuropathology Ageing Degenerative

44. 禮 Social engagement

45. 樂 Music

46. 射 Attention

47. 禦 Exercise

48. 書 Calligraphy

49. 數 Logic-Mathematical

50. 大自然