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