International
comparison ofdementia care models
13:00-14:30, 18th May 2015
Miharu Nakanishi
Tokyo Metropolitan Institute ofMedical Science01

Key points
Development of national dementia plan in Japan• Integrated Community Care system• Emergency Project 2008
• Orange Plan 2013-2017

International comparison• Dementia care pathway• Palliative care contents in national dementia plans

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Development process
Report “Long-Term Care for the Elderly 2015”• Published at 2003 by a research committee under the Ministryof Health, Labour and Welfare• Estimated the total number of people with dementia: 2.50
millions in 2015, 3.78 millions in 2045

Integrated Community Care system• Suggested as a new care model for people with dementia• Introduced into the LTCI program to establish a community
general support centres in local authorities
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Emergency Project
Report in 2008
• Public LTCI system covered most persons with dementia• Lack of early diagnosis and coordination between health andsocial care services caused some unsuccessful cases

Unsuccessful cases• Individuals with earlier onset dementia did not have access tocare services• Those with severe challenging behaviours were admitted topsychiatric beds (Nakanishi and Nakashima, 2014 AlzheimersDement)04

International comparison• 2010-2011: Institute for Health Economics and Policy

Orange Plan 2013-17• Five-year plan for promotion of measures against dementia(Nakanishi and Nakashima, 2014 Alzheimers Dement)• 2012-2013: Tokyo Metropolitan Institute of Medical Science(International Symposium on National Dementia Strategy inTokyo)• 2014: National Centre for Geriatrics and Gerontology (GlobalDementia Legacy Event Japan, joint commission with Ministryof Health, Labour and Welfare and Tokyo Dementia Care
05 Training and Research Centre)

First project
Comparison of dementia care pathways• Management of challenging behaviours• Dementia care coordination• Family support and advocacy

Method• Bibliographical survey, field survey, and online case vignettesurvey• Australia, Denmark, England, France, South Korea, Sweden, theNetherlands and Japan06

EnglandPathway
Primary care
GP

Trust

Primary careAcute care

Secondary

Diagnosis

Community
Mental HealthSocial worker
Social careservices

Social care
Local authority
07

Peer, volunteer

EnglandCare teamHome
Primary careGP

Dementia
advisor

Local authority

Social worker

CMH team
Home careproviderIntermediatecare
Hospital08

Trust

Care homeJapan
Pathway
PhysicianDementia support

DiagnosisCommunity
Generalsupport centre

Healthcare
insurance
Medicalcentre fordementia

Localauthority

Outpatientcare
Inpatient care
Medical centre
for dementia

Local authority
Care manager

LTCI service09

Long-termcare insurance

LTCI service
providerJapanCare teamCommunity
GeneralSupport centre

Home

LTCI caremanager

PhysicianMedical centre
for dementia

Hospital
10

Local authority

LTCI

LTCI home careproviderHealthcare insurance

LTCI
residential

Suggestions for Japan
Management of challenging behaviours• Establish secondary mental health care services

Dementia care coordination• Enhance function of LTCI insurer and care manager• Packaged home care services

Family support and advocacy• Establish national carer strategy
11Palliative care
Definition by WHO• An approach that improves the quality of life of patients andtheir families facing the problem associated with lifethreatening illness, through the prevention and relief ofsuffering by means of early identification and impeccableassessment and treatment of pain and other problems,
physical, psychosocial and spiritual.
• Affirms life and regards dying as a normal process• Intends neither to hasten nor to postpone death• Uses a team approach to address the needs of patients andtheir families, including bereavement counselling if indicated12Palliative care for elderly
Palliative Care for Older People: Better Practices• Published by WHO Europe in 2011
• In the past, palliative care was mostly offered to people withcancer in hospice settings• Palliative care must now be offered more widely andintegrated more broadly across health care services• Example of good practices for older adults with dementia– Multidisciplinary guidelines– Education for care home staff and general practitioners– A guide for caregivers
13Palliative care in dementia
EAPC white paper in 2013 (van der Steen et al., 2014 Palliat Med)
1. Applicability of palliative care
2. Person-centred care, communication and shared decision making
3. Setting care goals and advance planning
4. Continuity of care
5. Prognostication and timely recognition of dying
6. Avoiding overly aggressive, burdensome or futile treatment
7. Optimal treatment of symptoms and providing comfort
8. Psychosocial and spiritual support
9. Family care and involvement
10. Education of the health care team
11. Societal and ethical issues
14Model of changing care goals
Dementia progression and suggested prioritizing care goals

15van der Steen JT, Radbruch L, Hertogh CMPM, de Boer ME, Hughes JC, Larkin P, Francke AL, Jünger S, Gove D, Firth P,Koopmans RTCM, Volicer L on behalf of the European Association for Palliative Care (EAPC) (2014) White paper defining
palliative care in older people with dementia: a Delphi study and recommendations from the European Association for
Palliative Care. Palliat Med 28(3): 197–209.

Palliative care in national planMethods• Qualitative evaluation of national dementia plans from 14countries• Focus on palliative care content using EAPC white paper

Results• Not explicitly referred in the eight of the 14 countries• All countries lacked “prognostication and timely recognition ofdying” and spiritual caregiving (Nakanishi et al., in press IntPsychogeriatr)
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Independent section
England• Objective 12: Improved end of life care for people withdementia.

Northern Ireland• Action 29. Develop palliative and end of life care services forpeople with dementia within the framework of the palliativeand end of life care strategy.

Sweden• Palliative care in the final stages of life (71-72 in the list ofconditions and treatments)
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Some sentences
Scotland•Right-based care: We will take more action specifically in relation todignity and respect, including attention to human rights and theprinciples and requirements of mental health and incapacity legislation,including: earlier identification of people with palliative care needs, topromote advance care planning, to facilitate the sharing of key
information across settings through the development and roll out of theElectronic Palliative Care Summary.

Finland•

3 Proper treatment and care is a worthwhile investment: heprovision of timely support, care and services is based on (…) c) goodpalliative and end-of-life care when prolonging life is no longer
meaningful.

Australia•
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Key Priority Area 1: Care and Support Outcomes: Palliative Care.

Some sentences, not palliativeJapan•The national government will continue additional benefit schedules for“coordination system with healthcare provider” and “provision of end oflife care” under the public long-term care insurance program to enhanceservice provision for increasing impairment and end-of-life care ofresidents in “group homes”.

Wales
•

UHBs and LAs to publish plans for developing specialist dedicatedyoung onset and rare dementia services. Plans to be based on thefollowing principles: (…) end of life care.

South Korea•

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Medical practices that are unlikely to have effects on people withdementia at last stage should be avoided. The guideline should beestablished and disseminated for management of people with dementia
at end-of-life stage to provide high-quality care services.

Call for palliative care
Palliative care and dementia statement• First WHO ministerial Conference on Global Action against Dementia,
March 16-17th, 2015
• Worldwide Hospice Palliative Care Alliance (WHPCA) published thestatement:
The WHPCA requests ministers to ensure that:
1. National dementia strategies are developed which include explicit
reference to palliative care. Palliative care is a person-centred
approach and should be available from the point of diagnosis. However,
we particularly call on ministers to ensure the inclusion in national
dementia strategies of prognostication, timely recognition of dying andpreparations for the last phases of life. These are areas, which havebeen shown to be neglected.
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Information tool development
Comfort care booklet on dementia• Developed by Dr. Marcel Arcand in collaboration with theAlzheimer Society of Canada (Arcand et al., 2009 JAMDA)• Aimed to guide and inform families on palliative care
• “Good example” in WHO Europe report

International adaptation study• Translation and adaptation of the booklet into Italy, theNetherlands, and Japan (van der Steen et al., 2013 JME)
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Japanese adaptation
Japanese comfort care booklet• Adapted where necessary to the Japanese environment• Revised based on the first evaluation in 2009 to makestatements on palliative care more neutral

Difference between Japan and Western countries• Public healthcare insurance scheme allows use of morphine
only for cancer pain
• “Care workers” in long-term care are differentiated fromnurses (including nursing assistants and aids)
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Usage as an educational tool
Change in perspectives among nursing home staff• Evaluated using Questionnaire on Palliative Care for Advanced
Dementia (qPAD)• Participants of a short intervention using the booklet showedsignificantly increased knowledge and more positive attitudes(Nakanishi et al., in press Int J Palliat Nurs)

Future study should explore…
• How to achieve quality dementia care at home that integrates
person-centred care and palliative care23

Global action against dementia
World Dementia Council• Formed following G8 Dementia Summit in December 2013

Global Dementia Legacy event• London (June 2014), Canada (September 2014), Japan(November 2014)• Japanese Prime Minister had stated a new national dementia
plan• Global young leaders24

New Orange Plan in Japan
Revision announced on 27 January 2015
1.

Promote dissemination and raise awareness of dementia
recognition2.

Provide health and social care services that are timely andappropriate to condition or stage of dementia

3.

Reinforce strategies for people with younger onset dementia

4.

Support for carers (families) of people with dementia

5.

Enhance creation of elderly-and dementia-friendly communities

6.

Promote research and development and the dissemination ofresearch outcomes

7. Respect the views of people with dementia and their families
25Remaining challenges
Family support and advocacy• Supporting carers in their new roles as proxy decision makers• Court appointed adult guardians are not allowed to be
involved in decision making on health and social care

End of life care
• The New Orange Plan refers a decision making issue on lifeprolonging treatment• No explicit mention of either advance care planning or shareddecision making
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Right-based careStandards of Care for Dementia in Scotland• Based on the Charter of Rights developed by theParliamentary Cross Party Group on Alzheimer’s disease
Second Dementia Strategy in Scotland• Support and promote best practice in advance care planning• The assessment of capacity to consent to treatment• Adherence to proper procedures for making decisions forpeople with dementia who lack capacity
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Glasgow Declaration
Alzheimer Europe, Oct 2014
• Create European Dementia Strategy and national strategies inevery country in Europe• Promote the rights, dignity and autonomy of people livingwith dementia• Every person living with dementia has the right to:– A timely diagnosis;– Access quality post diagnostic support;– Person-centred, coordinated, quality care throughout their illness;– Be respected as an individual in their community.
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Further questions
Navigation throughout the dementia trajectory• Coordination or one-stop service (packaged care)?
• Coordination by public or private sector?
• Where to obtain end-of-life care for dementia?

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