Better Disease Managementthrough
Support in the Community:Care for Persons with
Dementia
Dr David DaiPrince of Wales Hospital
Hong Kong Alzheimer’s Disease Association2009
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
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
Ageing Issues in Persons with Down’s Syndrome and Intellectual Disability:
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
• Longest: women with mild ID, ambulatory and self caring
• Lowest: men with greater disabilities
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
• Higher rates of physical illness:
incontinence, immobility, hearing impairment, arthritis, hypertension,
CVS, Resp, Cerebrovascular
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%)
Mann & Esiri, 1989
By 30-40 years of age, amorphous amyloid deposition will have been present for some years
<10% for DS aged 30-39
10-25% for DS aged 40-49
20-50% for DS aged 50-59
30-75% for DS aged 60+Aylward et al 1995
Prevalence estimates
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)
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
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
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
Diagnostic challenge• Overshadowing
• Impaired verbal communication and cognitive abilities
• Atypical presentations
• Inadequate training of doctors and healthcare professionals
斷症困難
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
The Person with Dementia in the Community, 2009
Non Acute HospitalNGOSCharity organizations(Churches)
Acute Hospital AED
Medical
Orthopedics
Surgical
Residential Homes
Specialty OPD(Geriatric, Neurology,Psychogeriatric, Medical)
FM Clinic
Respite residential (Short stay 1-3 weeks)
Private clinics/Hospital
Integrated day &Inhome programmeof HKADA
Children
Elder
Relative
At Home
Institution Clinic Home care
Barriers in Care for the PWD,2009
Non Acute Hospital NGOSCharity organizations(Churches)
Acute Hospital AED
Medical
Orthopedics
Surgical
Residential Homes
Specialty OPD(Geriatric, Neurology,Psychogeriatric, Medical)
FM Clinic
Respite residential (Short stay 1-3 weeks)
Private clinics/Hospital
Integrated day &Inhome programmeof HKADA
Children
ElderRelative
Care plan
Access
Care plan
Care plan
Long Waitingtime
Access
Care plan
Long Waitinglist
Long Waiting list
Earlyidentification
Long Waiting listEarlyEvaluationand treatment
At Home
Dementia programme Long waiting time Inadequate support
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)
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
老化
BrainReserve
Neuropathology
大腦儲
備
Ageing
病理
Late Onset AD 老年性
Degenerative
Reconditioning
Drugs
Raise reserve
Public Education社區教育
Early detection andLife Course Approach to Brain Health
The Lancet Neurology Vol 3 June 2004 http://neurology.thelancet.com
Based on Evidence
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
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
Early Detection circumventing long waiting time for specialist consultations
Normal aging
Mild cognitive impairment
Early dementia Mid – late stage dementia
Early detection program (EDP)
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.
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
Functional Assessments Lawton IADL Barthel ADL
Family Physician – HKADA Collaboration
Family physician HKADA
-Opportunistic case-finding-Diagnosis-Drug treatment
-Public education-Screening-Integrated day-home-care-Resources center-Care plan-Carer support
-Training -Education-Case Conference-Liaison
Non-drug MxEnvironmental
Respite
Input
Medical
Residential
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
Collaborative Training with College of Family Physicians
Community Support:Attending to
Care needs of clients and family at different stages
Health
Psychosocial
Ethico-legal
The Integrated Day and Inhome Programme of HKADA
Hong Kong Alzheimer’s Disease Association
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
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
• To provide relevant information, answering queries and making referral for other community service as well as to handle crisis situation when necessary.
Holistic Services Helplines
Holistic Services Carer 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
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
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.,
Voice Online - Discussion Forum
聲音在線 - 討論區
http://www.hkada.org.hk
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)
Browser
Create Value and Meaning
Meaningful and Cognitively
Enhancing Activities Multiple
Intelligences and
The 6 Arts
老化
BrainReserve
Neuropathology
大腦儲
備
Ageing
病理
Late Onset AD 老年性
Degenerative
Reconditioning
Drugs
Raise reserve
禮Social engagement
樂Music
射Attention
禦Exercise
書Calligraphy
數Logic-Mathematical
大自然
Life Course and the Family( P Walsh Curr Opin Psy 2002; 15: 509-514)
• Active treatment with educational programme maintains and improves adaptive behaviour
• Positive prognosis for DS with relatively able and healthy childhood
• QOL: family relationships friends and social activity health and functional abilities formal services planning for future care
生命全育與家庭
Medical Crisis for the PWD:Community Support at the Acute Hospital:
AED, Medical and Orthopedic Wards
Community Support starts at AED
Recruitment of community supportat AED, medical and orthopedic wards
• Geriatric intervention at AED (Observation ward, general AED) and sites with heavy geriatric burden ( medical, orthopedics)
• Diagnosis, drug regime• Avoid unnecessary hospitalization• Arrange post discharge support (CNS,
MSW, CGAT, further evaluation at geriatric clinic)
Outreach within Hospital Walls
Medical aspects in ID:Challenge for physicians
(JIDR 1997; 41(1): 8-18)
Atypical symptomatology CVS: none complain of chest pain COPD: none seeked help GI: insomnia or behavioral problems at
meals Urological: none complain even with
retention Hyperthyroidism: behavioral Cancer: breast lump, rectal bleeding, vomiting,
anaemia 非典型內科徵狀
Cause specific mortality(JIDR 2001; 45(1): 30-40)
Excess mortality• Respiratory
• Digestive
• infections
死亡病因
Addressing needs at different stages(AAMR/IASSID)
初中晚期之需要
Early
Mid
Late
Advance Care PlanningAt the Old Age Home:
CommunicationNarration
Anticipatory GriefPreparation
Support in Advance Care Planning
Hospital Outpatient
ResidentialHome
HKADA
Setting / Circumstance
Client/Familymembers
Medicalteam
Healthcare Provider
Chronic illness
Advancedirective
AdvanceCare plan
Advance Proxy care plan
Regular Review
The Process of ACP
Effective Interventions
• Peer support: “Journey of Life”• Families• Staff support• Effective communication: early,middle,late stages• Memory books/ life story work• Interpreting challenging behaviours: day-to-day• Consideration of mobility and perceptual problems• Environmental alterations• Medications: anti-dementia, comorbidities, phycical
illnesses
有效之照顧策略
Late stage
• Totally dependent and bedridden
• Incontinent
• Parkinson disease and other movement disorders
• Frequent seizures
• Dysphagia
• Infections eg pneumonia
晚期
Late –stage needs
• Basic skills( eating, drinking, weight loss, bladder, bowel)
• Constant care supervision• Excessive wandering and safety• Bedbound and personal care• Care-giver strain• Terminal care and bereavement care
舒緩照顧
Legal and end-of-Life IssuesAm Fam Physician 2006, 73: 2175-83
• Informed consent and decision making capacity difficult to assess
• Should not assume that all adults with mental retardation are unable to make medical decisions
• End-of-Life concerns best discussed before a crisis
• Surrogate decision makers and family preferences about treatment objectives
法律及倫理
Death and Dying(BJPsy 2000; 176: 26-31)
• ↑likelihood of the death of family member and potential loss of knowledge about the past experience of the older PWID
• Expression of bereavement can be associated with considerable behavioral and emotional changes that can be unrecognized and result in the person failing to receive appropriate care
百年的考慮
Advanced dementia and tube feeding(JIDR 2005; 49(7): 560-566)
• 36% at end AD on tube feeding
• Palliative care
• Discuss with PWID and DS with dementia, family members, key workers
• Lack mental capacity to make informed medical decisions
• Advance directives
晚期與喉管
EOL care Clinical, Social and Ethical timely and comprehensive decision for withholding/ withdrawing LST defining futile care prompt ethical review attending and primary care consensus proxy
臨床 , 社會 , 倫理
Good clinical medicine requires a marriage of scientific knowledge and human care
Plato 500 BC
科學與人性
Family members taught to communicate with hospital clinicians
• Diagnosis of dementia and current medications and follow up
• Delirium in previous admissions• Functional status at home and care level before
admission• Feeding mode and ? Swallowing difficulty• Permission to stay with patient and frequent
visits• Reduce physical and chemical restraints• On discharge: change in medications, follow up, additional support at home
Barrier – Free community model of Dementia Care 2009
Non Acute Hospital NGOSCharity organizations(Church)
Acute Hospital AED
Medical
Orthopedics
Surgical
Residential Homes
*Training(Early recognition;Non drug management)
Specialty OPD(Geriatric, Neurology,Psychogeriatric, Medical)
FM Clinic
Respite residential (Short stay 1-3 weeks)*Social worker facilitation
Private clinics/Hospital
Integrated day &Inhome programmeof HKADA
Children
ElderRelative
Care plan
Assess
Care plan
Care plan
Long Waitingtime
Access
Care plan
Long Waitinglist
Long Waiting list
Earlyidentification
Long Waiting listEarlyEvaluationand treatment
* Geriatricteam
* Liaison
*Onsite geriatric/PsychogeriatricClinic sessions
At Home
*Modelingof services
*Diagnostic Packages(Training & education
*Special programmes
PublicEducation
Geriatric Liaison FM Based Care Coordinated Support
Strategy in removing Barriers• Public awareness on all aspects of dementia care• Priority in Governmental Policy
• Intensify Geriatric input and liaison in hospital services with heavy geriatric burden (AED, Medical, Orthopedics, Surgical, outpatient):
Outreach within Hospital Walls
• Skill transfer to Family Physician: Early diagnosis and treatment
• Build up a rich nexus of dynamic community supportive facilities (daycare, residential, respite, charity and religious organisations)
Looking to the Future3rd Annual Conference of EASPD
( JIDR 2002; 46(4): 361-363)
• Getting Old is Not an Illness
• Family and service systems
• Equal opportunities
Community care providers
PsychiatristsGeriatriciansPhysiciansHospitalists
Older PWID ad DS Families
“Ageing in Place”老就所居
Ageing in Place
• Life long process of ageing
• Family is central place through life span
• Moving from the family home need not remove an individual from the family sphere of influence 老就所居
聯合國 殘疾人士權利國際公約 2006