the importance of national and global strategies for ... 8- icade.pdfthe importance of national and...

The Importance of National and Global Strategies for Tackling Alzheimer’s Disease (the French Case Study)

Françoise Forette, MD

2 2

By 2050, 1 in 85 people worldwide will have Alzheimer’s disease (AD)

Alzheimer's disease worldwide P

ati

en

ts w

ith

AD

(m

illi

on

s)

*Projected.

Brookmeyer R, Zeigler-Graham K, Johnson E, Arrighi HM. Forecasting the global burden of Alzheimer’s

disease. Alzheimers Dement. 2007;3(3):186-191.

0

20

40

60

80

100

120

2006 2050*

3

Increases in costs and shortages of caregivers are global concerns

• Globally – Worldwide cost of dementia increased by 34% between 2005 and 20091

• United States – Five-fold increase in total cost of care for AD patients is anticipated

over the next 40 years ($172 billion to $1.08 trillion per year)2

– Home support is available to only 44% of patients, day care to 42%, and residential/nursing home care to 34%3

• Switzerland – Increase in nursing costs for AD is expected to be between CHF 1.6

and 7 billion between 2008 and 20503

– Between 120,000 and 190,000 new caregivers will be needed to replace retired caregivers (2/3) or to compensate for the increased demand due to the increase in the aging population3

• Taiwan – Population-based study showed a steady yearly increase in total costs

associated with AD4

References: 1. Wimo A, Winblad B, Jonsson L. The worldwide societal costs of dementia: estimates for 2009. Alzheimers

Dement. 2010;6(2):98-103. 2. Changing the trajectory of Alzheimer’s disease: a national imperative. Alzheimer’s

Association Web site. http://www.alz.org/documents_custom/trajectory.pdf. Updated 2010. Accessed June 25, 2010.

3. Groth H, Klingholz MW. Future demographic challenges in Europe: the urgency to improve the management of dementia.

Paper presented at: World Demographic & Ageing Forum; University of St. Gallen, Switzerland; 2009. 4. Chan ALF, Cham

T, Lin S. Direct medical costs in patients with Alzheimer’s disease in Taiwan: a population-based study. Curr Ther Res.

2009;70(1):10-18.

4

Efforts to improve the prognosis for AD patients are being made around the globe

Active national plan

European Commission •Joint Programme—top European researchers will pool resources, streamline research approach, and avoid duplication of work1

• Multiple plans established as early as 20012

• Allotment of about €2.3 billion in funding2

• Fully integrated AD into the system of care with plans for reimbursement and the creation of separate units of health care for the

elderly (APA and Plan for the Oldest Elderly)2

• Recently implemented a national strategy (2009-2014)3

• Collecting and observing data until March 2010; white paper that reported on plans and recommendations was published3

• No national plan or government support for Alzheimer’s

• Substantial progress made through privately funded organizations, most notably Alzheimer’s Ontario4

• Achievements include First Link, an organization that links newly diagnosed patients, and Safely Home, a system for identifying

AD patients when they get lost5,6

• No national plan; 25 states working on AD plans7

• Several national organizations are focused on AD; looking to the president and Congress for support by establishing the National

Alzheimer’s Strategic Plan purposed by the Alzheimer’s Study Group8

• No established Alzheimer’s plan; some government involvement

• Strong advocacy by the national organization, Alzheimer’s Australia (increased awareness, set up resources, support groups, and

a hotline in support of patients)9

• One government-funded program, the National Dementia Support Program, with goal of improving the quality of life for patients

with dementia9

• The Ministry of Health and Welfare declared a “war on dementia,” which incorporates the Kyoto Declaration, the Alzheimer’s plan

for all Asian countries10

References: 1. JPND Research. First pan-European ‘joint programming research initiative’ will tackle Alzheimer’s and other neurodegenerative diseases. http://www.neurodegenerationresearch.eu

/news. Updated April 26, 2010. Accessed July 6, 2010. 2. Alzheimer Europe. Regional patterns—France. http://www.alzheimer-europe.org/index.php/EN/Our-Research/European-Collaboration-on-

Dementia/Cost-of-dementia/Regional-patterns-The-economic-environment-of-Alzheimer’s-disease-in-France. Updated October 8, 2009. Accessed July 6, 2010. 3. Alzheimer Europe. United Kingdom—

England. http://www.alzheimer-europe.org/EN/Policy-in-Practice2/National-Dementia-Plans/United-Kingdom-England. Updated May 10, 2010. Accessed July 6, 2010. 4. Alzheimer Society of Ontario.

About us. http://alzheimerontario.org/English/AboutUs/default.asp?s=1. Accessed July 6, 2010. 5. Carrie McAiney; Alzheimer Society of Canada Research Program. Research grants and training

awards 2008-2009. http://www.alzheimer.ca/english/research/resprog-awards08-descriptions/McAineyCarrie.htm. Updated June 2008. Accessed July 6, 2010. 6. Alzheimer Society of Canada

Research Program. Safely Home is essential for those with Alzheimer’s disease. http://www.alzheimer.ca/english/media/features-safelyhome-mattestory08.htm. Updated November 2008. Accessed

July 6, 2010. 7. Alzheimer’s Association. State government Alzheimer’s disease plans. http://alz.org/join_the_cause_state_plans.asp. Updated March 18, 2010. Accessed July 6, 2010. 8. Alzheimer’s

Study Group. A national Alzheimer’s strategic plan. http://www.alz.org/documents/national/report_ASG_alzplan.pdf. Accessed July 6, 2010. 9. Alzheimer’s Australia. National dementia support

program. http://www.alzheimers.org.au/content.cfm?infopageid=4746. Updated April 1, 2008. Accessed July 6, 2010.10. Access Economic Pty Ltd. Dementia in the Asia Pacific Region: The Epidemic

Is Here. Canberra, AU: Access Economics; 2006.

5

Increased

awareness

Early

diagnosis

Easy access

to care

Improved

support

services

Living well in

care homes Research

European

Commission √

Program focused on research

Program focused on research

√ Program

focused on research

√

France √ √ √ √ √ √

United

Kingdom √ In progress In progress

Needs

improvement In progress In progress

Canada √ √ Needs

improvement √ √ √

United States √

Australia √ √ In progress √

Needs

improvement

Needs improvement

India √ In progress Needs

improvement In progress

Needs

improvement In progress

What have these action plans accomplished?

France–A Case Study

A national plan for Alzheimer's and related

diseases (2008-2012) was developed and

launched in France by the president of

the republic

France—national plan for Alzheimer and related diseases 2008-2013. http://www.alzheimer-europe.org/

Policy-in-Practice2/National-Dementia-Plans/France. Accessed June 29, 2010.

(http://www.plan-alzheimer.gouv.fr/)

7

Overarching goals of the French national plan

• Improve quality of life for patients and caregivers

• Advance research efforts and knowledge

• Increase social awareness of AD

France—national plan for Alzheimer and related diseases 2008-2013. http://www.alzheimer-europe.org/Policy-in-

Practice2/National-Dementia-Plans/France. Accessed June 29, 2010.

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A structured, well-defined plan

• A government official is in charge of the plan

• Predefined process and results indicators

• 11 objectives

• 44 measures

• An identified “pilot” for each measure

• Tracking progress – Pilots meet monthly

– Follow-up committee meets quarterly

– President Sarkozy and the Ministers in charge (Health, Social

Affairs, Research), and the Prime Minister meet twice per year



9

Each measure is thoroughly defined

• Objective

• Context

• Measurements

• Actors

• Schedule

• Funding

• Evaluation (process indicators and results indicators)



10

Yearly funding (M€)



2008 2009 2010 2011 2012

Total spending

associated with

the measures

Medico-social aspect 254 134 202 274 379 1242

Operating costs 74 134 202 274 379 1062

Investment 180 180

Health aspect

(excluding clinical research) 23 44 48 53 59 226

Research aspect 29 42 38 46 45 201

Total 306 220 288 373 482 1669

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Improve quality of life for patients and caregivers

Objective Measures Budget (M€)

Increase support

for caregivers

1. Develop and diversify respite structures

206 2. Consolidate rights and training for caregivers

3. Improve health monitoring for family caregivers

Strengthen coordination

among all actors

4. Develop quality labeling throughout the country for information

and called Maisons pour l'Autonomie et l'Intégration des

malades Alzheimer (MAIA) 141.4

5. Establish "coordinators" throughout the country

Enable patients and their

families to choose

support at home

6. Reinforce support at home; advocate for services by trained staff

173

7. Improve support at home using new technologies



12



Improve access to

diagnosis and care

8. Prepare and implement a system for delivering the diagnosis and

providing counseling

105.86

9. Experiment with new payment terms for health professionals

10. Create a personalized AD information card for patients

11. Create memory clinics in areas that are not covered

12. Create memory resource and research centers (CMMRs) in areas

that are not covered

13. Reinforce the very active memory clinics

14. Monitor drug-related iatrogenic accidents

15. Improve use of proper drugs



13



Improve residential

care to provide better

quality of life for

AD patients

16. Create or identify specific units in nursing homes for patients with

behavioral problems

831.2

17. Create specialized units within health care rehabilitation and

follow-up (SSR) departments for AD patients

18. Provide accommodations for young patients

19. Identify a national reference center for young AD patients

Recognize skills and

develop training for

health professionals

20. Create a specific career and skills development plan for AD



14

Knowledge for action


Make

unprecedented

efforts in

research

21. Create a foundation to stimulate and coordinate scientific research

190.86

22. Conduct clinical research on AD and improve evaluation of

nondrug therapies

23. Allocate doctoral and post-doctoral grants

24. Develop new assistant surgeon and teaching hospital assistant positions

25. Support research in human and social sciences

26. Support for research groups working on innovative approaches

27. Support for methodological research groups in human and social sciences

28. Create a body of research in automatic image processing

29. Study large patient cohorts with long-term monitoring

30. Conduct high-speed genotyping

31. Exploit the genome sequencing of the microcebe

32. Training in clinical epidemiology

33. Develop links between public research and industry



15

Knowledge for action


Organize epidemiologic

surveillance

and follow-up

34. Set up epidemiologic surveillance and follow-up 2.3



16

Mobilizing around a social issue


Provide information

for general public

awareness

35. Set up a telephone helpline and a Web site for information and local advice

6 36. Hold regional conferences to support the implementation of the plan

37. Study disease knowledge and attitudes

Promote ethical

considerations

and approach

38. Create a space for ethical thought about AD

2.5

39. Launch a discussion about the legal status of AD patients

in institutions

40. Organize regular meetings focusing on the autonomy of people

suffering from AD

41. Inform patients and their families about trials implemented

in France

Make AD a

European priority

42. Make the fight against AD a priority for the European Union

0.3 43. Publicize and promote research across Europe

44. Hold a European conference in autumn 2008



17

Updates on plan implementation: strengths and weaknesses

• Strength: unprecedented research – The Foundation for International Scientific Cooperation is

set up and effectively coordinates AD research:

• 61 projects funded (30 M€) and ongoing

• 54 new researchers recruited

• 330 MDs (clinicians) trained in epidemiology

• Database of 60,000 patients from 226 memory clinics or

research centers

• Methodology groups formed

18


• Strength: improved access for diagnosis – 441 memory clinics (21/38 created in 2008)

– 27 CMRRs (resources and research memory centers)

(2 in 2008)

– Reduction in the delay to obtain an appointment: 51 days

– Recommendations for announcing the diagnosis and

providing counseling

– Reference center for younger patients

19


• Strength: improvement in quality of life of patients

and caregivers – 17 experimental MAIA “information and counseling centers”

created in 2009 (integrated access points)

– 51 coordinators (case managers in the MAIA)

– Caregiver training funded by the plan (1255 trained caregivers)

– 40 home pluri-disciplinary teams

– 23/120 specific units in rehabilitation centers

– 26 regional conferences to give information about the plan to

patients, families, and health professionals

– Creation of a “National Ethical Reflection Center”

20


• Weakness: delay in implementing some measures – No specific unit for patients suffering from severe behavioral

symptoms was created in 2008 and 2009 in nursing homes

(93 projects ongoing)

– Delay in the creation of respite care units

• 2125/11,000 day care places in 2008

• 1125/5600 respite accommodation places in 2008

• Delay in specific AD training of professionals (ergotherapists,

psychomotricians)

21

Status of funding in 2009

• Available funding in 2009: 420 M€ – 227 M€ for 2009 – + 193 M€ not spent in 2008

• Spent in 2009: 83 M€ – Engaged: 164 M€

• Explanation for the 337 M€ not yet spent: – 0/254 M€ spent on the new specific unit for patients with severe

behavioral symptoms

– Delay in day care, respite care, and specific home services: 40 M€

22

Benefits of a national plan

Nation Patient Caregiver

• Increased disease

awareness

• Clearly allocated funds

for initiatives

• Defined goals for

improving patient access

and care

• Advances research efforts

• Easier access to

diagnosis and treatment

• Earlier diagnosis

• Elevated standard of care

• Improved quality of life

• Improved quality of life

• Eases the burden of care

• Easier access to support

23

Implementing a national plan, best practices

• Involvement of government is crucial to success

• Achieve consensus among different groups

(eg, physicians, patients, payors, and social

security systems)

• Chaired by an appointed official

• Clearly defined and publicized goals

• Measures to evaluate progress

• Periodic reevaluation of execution and results

• Prioritized and allocated funding

24

Raise the level from a national to a global initiative

• Use best practices for national plan as a guideline

• Additional considerations: – Involvement of the WHO is crucial

– Highest officials in government should participate

25

Support of AD opinion leaders is crucial

• Multiple aspects come into play when forming a

national strategy

• Opinion leaders are looked to by physicians and

other stakeholders for advice

We need a strong foundation of proponents to advocate for this approach.

Access to treatment

Novel therapies

Research advancement

Long-term patient care

26

Efforts of opinion leaders: ADI and the WHO

• ADI aims to elevate Alzheimer’s disease to a top

global health priority – The Global Alzheimer’s Disease Charter (2008)

– The World Alzheimer’s Report (2009)

– Attend World Forum and World Health Assembly

• ADI has had an official relationship with the WHO

since 1996 – Presence at regional meetings of the WHO

27

Future plans for the WHO-ADI partnership

• Joint WHO-ADI plan in development

• World Health Day on Aging (April 7, 2012) – Focus on dementia

• Mental Health Gap Action Programme (mhGAP) – Improve services for mental, neurologic, and substance abuse

disorders, including dementia

– Create evidence-based treatment/management guidelines

NPC02093AZ July 2010 All rights reserved. 2010 Pfizer Inc.

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