Better Disease Management
through
Support in the Community:
Care for Persons with
Dementia
Dr David Dai
Prince of Wales Hospital
Hong Kong Alzheimer’s Disease Association
2009
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%)
By 30-40 years
of age,
amorphous
amyloid
deposition will
have been
present for
some years
Mann & Esiri, 1989
Prevalence estimates
<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
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
NGOS
Charity organizations
(Churches)
Non Acute Hospital
Acute Hospital
AED
Medical
Specialty OPD
(Geriatric, Neurology,
Psychogeriatric, Medical)
Private clinics/Hospital
FM Clinic
Integrated day &
Inhome programme
of HKADA
Children
Orthopedics
Surgical
Elder
Residential Homes
Relative
Respite residential
(Short stay 1-3 weeks)
Institution
Clinic
At Home
Home care
Barriers in Care for the PWD,2009
Non Acute Hospital
Care plan
Acute Hospital
Medical
Specialty OPD
(Geriatric, Neurology,
Psychogeriatric, Medical)
AED
NGOS
Charity organizations
(Churches)
Long Waiting
list
Care plan
Private clinics/Hospital
Access
Orthopedics
Care plan
Surgical
Care plan
Children
Long
Waiting
time
Early
Evaluation
and treatment
FM Clinic
Integrated day &
Inhome programme
of HKADA
Long Waiting list
Residential Homes
Long Waiting list
Early
identification
Elder
Relative
Access
Respite residential
(Short stay 1-3 weeks)
Dementia programme
Long waiting time
At Home
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
Late Onset AD 老年性
Raise reserve
大
腦
儲
備
Brain
Reserve
Reconditioning
Drugs
病
理
Neuropathology
老
化
Ageing
Degenerative
Public Education
社區教育
Early detection and
Life Course Approach to Brain Health
Based on Evidence
The Lancet Neurology Vol 3 June 2004 http://neurology.thelancet.com
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
Early detection program (EDP)
Normal
aging
Mild cognitive
impairment
Early dementia
Mid – late stage
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.
Neuropsychological
Assessments
• Abbreviated Mental Test (AMT)
–
•
•
•
•
Episodic memory
Digit Span Forward & Backward
–
•
Screening tool
Mini-Mental State Examination
Clinical Dementia Rating Scale
Fuld Object Memory Evaluation
–
•
Functional Assessments
 Lawton IADL
 Barthel ADL
Attention & working memory
Clock Drawing Test
Geriatric Depression Scale
Assessment administered by an
occupational therapist
Family Physician – HKADA
Collaboration
Family physician
-Opportunistic case-finding
-Diagnosis
-Training
-Drug treatment
-Education
-Case
Conference
-Liaison
HKADA
-Public education
-Screening
-Integrated day-home-care
-Resources center
-Care plan
-Carer support
Medical
Input
Non-drug Mx
Environmental
Respite
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
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.
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
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)
Create Value and Meaning
Meaningful and Cognitively
Enhancing Activities
Multiple Intelligences and
The 6 Arts
Late Onset AD 老年性
Raise reserve
大
腦
儲
備
Brain
Reserve
Reconditioning
Drugs
病
理
Neuropathology
老
化
Ageing
Degenerative
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 support
at 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)
Early
Mid
Late
初中晚期之需要
Advance Care Planning
At the Old Age Home:
Communication
Narration
Anticipatory Grief
Preparation
Support in Advance Care
Planning
Hospital
Outpatient
Residential
Home
HKADA
Setting / Circumstance
Chronic illness
Client/
Family
members
Advance
directive
Advance
Care plan
Advance
Proxy care plan
Healthcare Provider
Regular Review
The Process of ACP
Medical
team
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 Issues
Am 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
Long Waiting
Non Acute Hospital
* Liaison
Care plan
Acute Hospital
Medical
Specialty OPD
(Geriatric, Neurology,
Psychogeriatric, Medical)
AED
NGOS
list
Charity organizations
(Church)
*Special programmes
Public
Education
Care plan
Private clinics/Hospital
Assess
* Geriatric
team
Orthopedics
Long
Waiting
time
Care plan
Surgical
Care plan
Residential Homes
*Training
(Early recognition;
Non drug management)
Geriatric Liaison
*Diagnostic Packages
(Training & education
Early
Evaluation
and treatment
FM Clinic
*Onsite geriatric/
Psychogeriatric
Clinic sessions
Long Waiting list
Integrated day &
Inhome programme
of HKADA
Long Waiting list
Children
*Modeling
of services
Early
identification
Elder
Relative
Access
Respite residential
(Short stay 1-3 weeks)
*Social worker facilitation
FM Based Care
At Home
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 Future
3rd 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
Older PWID ad DS
Families
“Ageing in Place”
老就所居
Psychiatrists
Geriatricians
Physicians
Hospitalists
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