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

1
Better Disease ManagementthroughSupport in the
CommunityCare for Persons with Dementia
Dr David Dai Prince of Wales Hospital Hong Kong
Alzheimers 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

• gt 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 ????? 65ID 3408
4
Ageing Issues in Persons with Downs Syndrome and
Intellectual Disability
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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

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6

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

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Prevalence of mental and physical health
problems(Curr Opin Psy 2007, 20 467-471)

• Cooper (1997)
• Elder (gt65yrs) 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

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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
lt10 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)
12
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13
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Diagnosing dementia in DSdifficulties

• 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

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Diagnostic challenge

• Overshadowing
• Impaired verbal communication and cognitive
  abilities
• Atypical presentations
• Inadequate training of doctors and healthcare
  professionals

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Alzheimers Disease ??????? 1907, ??????????
???
Increased Understanding
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The Person with Dementia in the Community, 2009
NGOS Charity organizations (Churches)

Non Acute Hospital
Acute Hospital AED
Specialty OPD (Geriatric, Neurology, Psychogeriatr
ic, 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, Psychogeriatr
ic, 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
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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, institutionalisatio
  n)

20
Risk factors ????Late onset ADLife Course
Disease

• Family history (???)
• Lack of hobbies (??)
• Significant life events (????) (Shaw, 1992)
• Low education(???) (Zhang, Guo, 1997 Chiu, 1998)
• Head Injury
• ApoE4 (????E4?? ) lower prevalence in Chinese
  frequency 0.067 in normal 0.169 in AD (Hallman,
  1997 Mak, 1996)
• Possibilities for Risk Modification

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Late Onset AD ???
Raise reserve
??
????
Reconditioning
Drugs
??
Brain Reserve
Neuropathology
Ageing
Degenerative
22
Public Education ???? 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
?? ????????(Education) ????(Occupation) ?????
(Life style) ??????(Restore Reserve) ?????(Social
Engagement) ???????,??? Successful Ageing
Based on Wisdom
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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

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Early Detection circumventing long waiting time
for specialist consultations
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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 Alzheimers
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.
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• 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
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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
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The Family Physician Pivotal Role

• Early diagnosis and treatment
• Opportunistic screening of clients gt 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

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Collaborative Training with College of Family
Physicians
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Community SupportAttending toCare needs of
clients and family at different stages

• Health
• Psychosocial
• Ethico-legal
• The Integrated Day and Inhome Programme of HKADA

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Hong Kong Alzheimers Disease Association
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Holistic Services Day Centre

• To release caregivers burden by giving them a
  break
• To use different non-pharmacological therapies to
  delay clients 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

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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.

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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

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

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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.,

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Voice Online - Discussion Forum???? -
??? http//www.hkada.org.hk
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Browser

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• ????? 8645 (28/4/2009)

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Create Value and Meaning

• Meaningful and Cognitively Enhancing Activities
• Multiple Intelligences and
• The 6 Arts

43
Late Onset AD ???
Raise reserve
??
????
Reconditioning
Drugs
??
Brain Reserve
Neuropathology
Ageing
Degenerative
44
? Social engagement
45
? Music
46
? Attention
47
? Exercise
48
? Calligraphy
49
? Logic-Mathematical
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???
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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

???????
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Medical Crisis for the PWD Community Support at
the Acute Hospital AED, Medical and Orthopedic
Wards
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Community Support starts at AED
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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

55
Medical aspects in IDChallenge 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

???????
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Cause specific mortality(JIDR 2001 45(1) 30-40)

• Excess mortality
• Respiratory
• Digestive
• infections

????
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Addressing needs at different stages(AAMR/IASSID)
Early
Mid
Late
???????
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Advance Care Planning At the Old Age
Home Communication Narration Anticipatory
Grief Preparation
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Support in Advance Care Planning
Hospital
Outpatient
Residential
Home
HKADA
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Setting / Circumstance
Chronic illness
Medical team
Client/ Family members
Advance Care plan
Advance directive
Advance Proxy care plan
Healthcare Provider
Regular Review
The Process of ACP
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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

???????
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Late stage

• Totally dependent and bedridden
• Incontinent
• Parkinson disease and other movement disorders
• Frequent seizures
• Dysphagia
• Infections eg pneumonia

??
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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

????
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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

?????
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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

?????
66
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

?????
67
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

??, ??, ??
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Good clinical medicine requires a marriage of
scientific knowledge and human care
Plato 500 BC
?????
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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

70
Barrier Free community model of Dementia Care
2009
Long Waiting list
NGOS Charity organizations (Church)
Non Acute Hospital
Specialty OPD (Geriatric, Neurology, Psychogeriatr
ic, Medical)
Special programmes
Liaison
Care plan
Public Education
Acute Hospital AED
Care plan
Private clinics/Hospital
Medical Orthopedics Surgical
Assess
Diagnostic Packages (Training education
Children
Geriatric team
Long Waiting time
Care plan
Early Evaluation and treatment
Long Waiting list
Early identification
FM Clinic
Integrated day Inhome programme of HKADA

Care plan
Onsite geriatric/ Psychogeriatric Clinic sessions
Elder Relative
Long Waiting list
Residential Homes Training (Early
recognition Non drug management)
Modeling of services
Access
Respite residential (Short stay 1-3
weeks) Social worker facilitation
At Home
Geriatric Liaison
Coordinated Support
FM Based Care
71
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)

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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

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Community care providers
Older PWID ad DS Families Ageing in Place ????
Geriatricians Physicians Hospitalists
Psychiatrists
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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
  ????

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