Global action plan on the public health response to dementia 2017 - 2025 - 1 WHA70/2017/REC/1
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Global action plan
on the public health
response to dementia
2017 - 2025
1) WHA70/2017/REC/1
Global action plan
on the public health
response to dementia
2017 - 2025
1) WHA70/2017/REC/1
Global action plan on the public health response to dementia 2017–2025
ISBN 978-92-4-151348-7
© World Health Organization, 2017
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4
FOREWORD
Dementia is a major cause of disability families. It is an important opportunity
and dependency among older adults for individuals, communities and Member
worldwide, affecting memory, cognitive States to realize the vision of a world in
abilities, and behavior, ultimately interfering which dementia is prevented and people
with one’s ability to perform daily with dementia and their carers receive
activities. The impact of dementia is not the care and support they need to live a
only significant in financial terms, but also life with meaning and dignity. The World
represents substantial human costs to Health Organization looks forward to
countries, societies, families and individuals. fulfilling the ambitious targets presented
in the action plan by working alongside
Member States and Non-state actors,
The Global Action Plan on the Public including people with dementia and their
Response to Dementia 2017-2025 signals families, to improve the health and well-
an important step forward in achieving being of those affected by dementia, both
physical, mental and social wellbeing for for present and future generations.
people with dementia, their carers and
TABLE OF
CONTENTS
Overview of the global situation 2
Vision, goals and cross-cutting principles 4
Actions and targets for Member States, the Secretariat and
international, regional and national partners 6
Action Areas 8
Action area 1: Dementia as a public health priority 10
Action area 2: Dementia awareness and friendliness 14
Action area 3: Dementia risk reduction 18
Action area 4: Dementia diagnosis, treatment, care and support 22
Action area 5: Support for dementia carers 26
Action area 6: Information systems for dementia 30
Action area 7: Dementia research and innovation 32
Appendix 36
1
OVERVIEW OF
THE GLOBAL
SITUATION
1. Dementia is an umbrella term for several 3. Crucially, although age is the strongest
diseases that are mostly progressive, known risk factor for the onset of
affecting memory, other cognitive dementia, it is not an inevitable
abilities and behaviour, and that interfere consequence of ageing. Further, dementia
significantly with a person’s ability to does not exclusively affect older people,
maintain the activities of daily living. with young onset dementia (defined as
Alzheimer disease is the most common the onset of symptoms before the age
form of dementia and may contribute of 65 years) accounting for up to 9%
to 60–70% of cases. Other major forms of cases.4 Some research has shown a
include vascular dementia, dementia with relationship between the development of
Lewy bodies, and a group of diseases that cognitive impairment and lifestyle-related
contribute to frontotemporal dementia. risk factors that are shared with other
The boundaries between different forms noncommunicable diseases. These risk
of dementia are indistinct and mixed forms factors include physical inactivity, obesity,
often coexist. unbalanced diets, tobacco use and
harmful use of alcohol as well as diabetes
mellitus and mid-life hypertension. Other
2. In 2015, dementia affected 47 million potentially modifiable risk factors more
people worldwide (or roughly 5% of the specific to dementia include mid-life
world’s elderly population), a figure that depression, low educational attainment,
is predicted to increase to 75 million in social isolation and cognitive inactivity.
2030 and 132 million by 2050. Recent Additionally, non-modifiable genetic risk
reviews estimate that globally nearly 9.9 factors exist that increase a person’s risk
million people develop dementia each of developing dementia.5 There is also
year; this figure translates into one new evidence suggesting that overall more
case every three seconds. Nearly 60% women develop dementia than men.3
of people with dementia currently live in
low- and middle-income countries and
most new cases (71%) are expected to 4. Dementia is a major cause of disability
occur in those countries.2,3 and dependency among older adults
1. See decision WHA70(17).
2. WHO. The epidemiology and impact of dementia: current state and future trends. Geneva: World Health Organization; 2015,
Document WHO/MSD/MER/15.3, available at http://www.who.int/mental_health/neurology/dementia/dementia_thematicbrief_
epidemiology.pdf (accessed 8 March 2017).
3. Prince M, Wimo A, Guerchet M, Ali GC, Wu Yutzu, Prina M. World Alzheimer Report 2015. The global impact of dementia: an
analysis of prevalence, incidence, cost and trends. London: Alzheimer’s Disease International; 2015.
4. Alzheimer’s Disease International and WHO. Dementia: a public health priority. Geneva: World Health Organization; 2012 (http://
www.who.int/mental_health/publications/dementia_report_2012/en/, accessed 8 March 2017).
5. Loy CT, Schofield PR, Turner AM, Kwok JBJ. Genetics of dementia. Lancet. 2014;383(9919):828-40. doi:http://dx.doi.org/10.1016/
S0140-6736(13)60630-3.
2
worldwide, having a significant impact dementia in low- and middle income
not only on individuals but also on countries will contribute further to
their carers, families, communities and increasing inequalities between
societies. Dementia accounts for 11.9% countries and populations.
of the years lived with disability due to a
noncommunicable disease.1 In light of the 6. Currently, the gap is wide between
improved life expectancy globally, this the need for prevention, treatment
figure is expected to increase further. and care for dementia and the actual
provision of these services. Dementia
5. Dementia leads to increased costs for is underdiagnosed worldwide, and, if
governments, communities, families and a diagnosis is made, it is typically at
individuals, and to loss in productivity a relatively late stage in the disease
for economies. process. Long-term care pathways (from
diagnosis until the end of life) for people
●● In 2015, dementia costs2 were with dementia are frequently fragmented
estimated at US$ 818 billion, equivalent if not entirely lacking. Lack of awareness
to 1.1% of global gross domestic and understanding of dementia is often
product, ranging from 0.2% for low- to blame, resulting in stigmatization
and middle-income countries to 1.4% and barriers to diagnosis and care.
for high income countries. By 2030, it People with dementia are frequently
is estimated that the cost of caring for denied their human rights in both the
people with dementia worldwide will community and care homes. In addition,
have risen to US$ 2 trillion, a total that people with dementia are not always
could undermine social and economic involved in decision-making processes
development globally and overwhelm and their wishes and preferences for
health and social services, including care are often not respected.
long term care systems specifically.3
7. WHO and the World Bank estimate
●● People with dementia and their a need by 2030 for 40 million new
families face significant financial health and social care jobs globally
impact from the cost of health and and about 18 million additional health
social care and from reduction workers, primarily in low-resource
or loss of income. In high-income settings, in order to attain high and
countries, the costs related to effective coverage with the broad
dementia are shared between range of necessary health services.
informal care (45%) and social care In addressing dementia, expanding
(40%). In contrast, in low- and the health and social care workforce
middle-income countries social care with appropriate skill mixes as well as
costs (15%) pale in comparison to available interventions and services will
informal care costs.3 The expected be essential to prevent, diagnose, treat
disproportionate increase in and care for people with dementia.
1. Prince M, Albanese E, Guerchet M, Prina M. World Alzheimer Report 2014. Dementia and risk reduction: an analysis of
protective and modifiable risk factors. London: Alzheimer’s Disease International; 2014 (http://www.alz.co.uk/research/
WorldAlzheimerReport2014.pdf, accessed 8 March 2017).
2. Direct medical and social care costs and costs of informal care.
3. Prince M, Wimo A, Guerchet M, Ali GC, Wu Yutzu, Prina M. World Alzheimer Report 2015. The global impact of dementia: an
analysis of prevalence, incidence, cost and trends. London: Alzheimer’s Disease International; 2015.
3VISION,
GOALS AND
CROSS-
CUTTING
PRINCIPLES
Vision Cross-cutting
8. T
he vision of the global action principles
plan on the public health response
10. The global action plan is
to dementia is a world in which
grounded in the following
dementia is prevented and people
seven cross-cutting principles.
with dementia and their carers
live well and receive the care and
support they need to fulfil their
potential with dignity, respect,
autonomy and equality.
Goal
9. The goal of the global action plan is
to improve the lives of people with d. Multisectoral collaboration on the
dementia, their carers and families, public health response to dementia
while decreasing the impact of
dementia on them as well as on A comprehensive and coordinated
response to dementia requires
communities and countries.
collaboration among all stakeholders
to improve prevention, risk reduction,
diagnosis, treatment and care.
Achieving such collaboration requires
engagement at the government level
of all relevant public sectors, such as
health (including alignment of existing
noncommunicable disease, mental
health and ageing efforts), social
services, education, employment,
justice, and housing, as well as
partnerships with relevant civil society
and private sector entities.
4HUMA
RIGH N
TS
a. Human rights of people b. Empowerment and c. Evidence-based
with dementia engagement of people practice for dementia
with dementia and risk reduction and care
Policies, plans, legislation,
their carers
programmes, interventions Based on scientific evidence
and actions should be People with dementia, and/or best practice, it
sensitive to the needs, their carers and is important to develop
expectations and human organizations that strategies and interventions
rights of people with represent them should be for dementia risk reduction
dementia, consistent with empowered and involved and care that are person-
the Convention on the in advocacy, policy, centred, cost-effective,
Rights of Persons with planning, legislation, sustainable and affordable,
Disabilities and other service provision, and take public health
international and regional monitoring and research principles and cultural
human rights instruments. of dementia. aspects into account.
e. Universal health and Equity
f. g. Appropriate attention
social care coverage to dementia prevention,
All efforts to implement
for dementia cure and care
public health responses
Designing and to dementia must support Steps to realize this focus
implementing health gender equity and include using existing
programmes for universal take a gender-sensitive knowledge and experience
health coverage must perspective, keeping in mind to improve prevention,
include financial risk all vulnerabilities specific risk reduction, care and
protection and ensuring to each national context, support for people with
equitable access to a consistent with the 2030 dementia and their carers
broad range of promotive, Agenda for Sustainable and generation of new
preventive, diagnostic and Development, which knowledge towards
care services (including recognizes that people who finding disease-modifying
palliative, rehabilitative are vulnerable, including treatments or a cure,
and social support) for all people with disabilities, effective risk reduction
people with dementia and older people and migrants, interventions and
their carers. must be empowered. innovative models of care.
5ACTIONS AND TARGETS
FOR MEMBER STATES,
THE SECRETARIAT AND
INTERNATIONAL, REGIONAL
AND NATIONAL PARTNERS
11. Effective implementation of the 12. The roles of these four groups often
global action plan on the public overlap and can include multiple
health response to dementia will actions cutting across the areas of
require actions by Member States, the governance, health and social care
Secretariat and international, regional, services, promotion of understanding
national and subnational partners. and prevention in dementia, and
Depending on national context, these information, evidence and research.
partners include but are not limited to: Country-based assessments of the
needs and capacities of different
●● development agencies, including partners will be essential to clarify the
international multilateral agencies roles and actions of stakeholder groups.
(for example, OECD, United
Nations development agencies 13. Targets included in this global action
and the World Bank), regional plan are defined for achievement
agencies (for example, regional globally. Each Member State can be
development banks), subregional guided by these global targets when
intergovernmental agencies and setting its own national targets, taking
bilateral development aid agencies; into account national circumstances.
Each Member State will also decide
●● academic institutions and research how these global targets should
agencies, including the network be adapted for national planning,
of WHO collaborating centres for processes (including data collection
mental health, ageing, disability, systems), policies and strategies.
human rights and social determinants
of health, and other related networks; 14. The global action plan recognizes
that each Member State faces specific
●● civil society, including people challenges in implementing these
with dementia, their carers and action areas and therefore suggests a
families and associations that range of proposed actions that each
represent them, and other relevant Member State will need to adapt to the
organizations; national context.
●● the private sector, health insurance,
and the media.
67
Action areas
15. The global action plan comprises seven action areas, which form the
underlying structural framework:
Dementia as a Dementia awareness
public health priority and friendliness
1 2
Support for Information systems
dementia carers for dementia
5 6
8Dementia Dementia diagnosis,
risk reduction treatment, care and
support
3 4
Dementia research
and innovation
7
9Action area 1:
Dementia as a
public health
priority
16. Given the range of the population comprehensive, multisectoral approach
affected directly or indirectly by will support the recognition, and address
dementia and the complexity of this the complex needs, of people with
condition, dementia requires a whole- dementia within the context of each
of-government, broad, multistakeholder, country. This approach is in line with the
public health approach. Such an principle of universal health coverage and
approach will lead to a comprehensive the standards outlined in the Convention
response from the health and social on the Rights of Persons with Disabilities.
care system (both public and private)
and other government sectors, and will
engage people with dementia and their 18. Global
target 1:
carers and other relevant stakeholders 75% of countries will have
and partners.
developed or updated national
17. Rationale. The development and policies, strategies, plans or
coordination of policies, legislation, frameworks for dementia, either
plans, frameworks and integrated stand-alone or integrated into
programmes of care through a other policies/plans, by 2025.1
PROPOSED ACTIONS FOR MEMBER STATES
19. Develop, strengthen and implement and disability (or equivalent). These
national and/or subnational strategies, undertakings should give consideration
policies, plans or frameworks that to equity, dignity and the human rights
address dementia, whether as separate of people with dementia and support
instruments or integrated into other the needs of carers, in consultation
planned actions for noncommunicable with people with dementia and other
diseases, mental health, ageing, relevant stakeholders.
1. The global target indicators and means of verification are provided in the Appendix to this Annex.
1020. Promote mechanisms to monitor entity responsible for noncommunicable
the protection of the human rights, diseases, mental health or ageing within
wishes and preferences of people with the health ministry (or equivalent body),
dementia and the implementation of in order to ensure sustainable funding,
relevant legislation, in line with the clear lines of responsibility for strategic
objectives of the Convention on the planning, implementation, mechanisms
Rights of Persons with Disabilities and for multisectoral collaboration, service
other international and regional human evaluation, monitoring and reporting
rights instruments. These mechanisms on dementia.
include safeguards for concepts such
as legal capacity, self determination, 22. Allocate sustainable financial resources
supported decision-making, and power that are commensurate with the
of attorney, and for protection against identified service need and human and
exploitation and abuse in institutions as other resources required to implement
well as in the community. national dementia plans and actions,
and set up mechanisms for tracking
21. Set up a focal point, unit or functional expenditures on dementia in health,
division responsible for dementia or social and other relevant sectors such as
a coordination mechanism within the education and employment.
ACTIONS FOR THE SECRETARIAT
23. Offer technical support, tools and partners and establishing or
guidance to Member States, and strengthening national reference
strengthen national capacity in: centres, WHO collaborating centres
and knowledge-sharing networks;
●● leadership within health ministries
and other relevant sectors for the ●● coordinating programmes on
development, strengthening and dementia with those on related
implementation of evidence-based noncommunicable diseases, ageing,
national and/or subnational strategies mental health and health systems, and
or plans and associated multisectoral with service delivery and processes to
resource planning, budgeting and ensure maximum synergy and optimal
tracking of expenditure on dementia; use of existing and new resources.
●● evaluating and implementing 24. Compile and share knowledge and best
evidence-based options that suit practices on existing policy documents
Member States’ needs and capacities dealing with dementia, including
and assessing the health impact codes of practice and mechanisms to
of public policies on dementia by monitor the protection of human rights
supporting national and international and implementation of legislation,
11consistent with the Convention on the principle of universal health coverage.
Rights of Persons with Disabilities and Collaboration and partnerships should
other international and regional human include all relevant sectors: health,
rights instruments. justice and social services sectors, civil
society, people with dementia, carers
25. Promote and support collaboration and family members, and organizations
and partnerships with countries at in the United Nations system, United
international, regional and national levels Nations interagency groups and
for multisectoral action in the response intergovernmental organizations.
to dementia and aligning these with the
PROPOSED ACTIONS FOR INTERNATIONAL,
REGIONAL AND NATIONAL PARTNERS
26. Create and strengthen associations and paying explicit attention to the human
organizations of people with dementia, rights of people with dementia and their
their families and carers, and foster their carers as well as their empowerment,
collaboration with existing disability (or engagement and inclusion.
other) organizations as partners in the
prevention and treatment of dementia. 28. Support the development and
application of national dementia policies,
27. Motivate and actively engage in dialogue legislation, strategies and plans, and the
between associations representing creation of a formal role and authority for
people with dementia, their carers and people with dementia and their carers
families, health workers and government to influence the process of designing,
authorities in reforming health and social planning and implementing policies, laws
laws, policies, strategies, plans and and services related to dementia.
programmes relevant to dementia, while
1213
Action area 2:
Dementia
awareness and
friendliness
29. There is a common misconception that aspects of dementia friendly initiatives
dementia is a natural and inevitable part include safeguarding the human rights
of ageing rather than a disease process, of people with dementia, tackling the
resulting in barriers to diagnosis and care. stigmatization associated with dementia,
The lack of understanding also causes promoting a greater involvement of
fear of developing dementia and leads people with dementia in society, and
to stigmatization and discrimination. supporting families and carers of people
Furthermore, people with dementia are with dementia. The concept of dementia-
frequently denied their human rights in friendliness is tightly linked to societies
both the community and care homes. also being age-friendly. Both age- and
dementia-friendly initiatives should take
30. Dementia-awareness programmes into account the fact that a significant
should: foster an accurate understanding number of older people are living alone
of dementia and its various subtypes as and are sometimes very isolated.
clinical diseases; reduce stigmatization
and discrimination associated with 32. Dementia-awareness campaigns and
dementia; educate people about the dementia-friendly programmes that are
human rights of people with dementia tailored to the cultural contexts and
and the Convention on the Rights of particular needs of a community can
Persons with Disabilities; enhance the promote enhanced health and social
general population’s ability to recognize outcomes that reflect the wishes and
early symptoms and signs of dementia; preferences of people with dementia,
and increase the public’s knowledge of as well as improve the quality of life for
risk factors associated with dementia, people with dementia, their carers and
thereby promoting healthy lifestyles and the broader community.
risk reduction behaviour in all.
33. Rationale. Increasing public awareness,
31. A dementia-friendly society possesses acceptance and understanding of
an inclusive and accessible community dementia and making the societal
environment that optimizes opportunities environment dementia-friendly will
for health, participation and security for enable people with dementia to
all people, in order to ensure quality of participate in the community and
life and dignity for people with dementia, maximize their autonomy through
their carers and families. Shared key improved social participation.
1434. Global target 2.1: 35. Global target 2.2:
100% of countries will have at 50% of countries will have
least one functioning public at least one dementia-
awareness campaign on friendly initiative to foster a
dementia to foster a dementia- dementia-inclusive society
inclusive society by 2025.1 by 2025.1
PROPOSED ACTIONS FOR MEMBER STATES
36. In collaboration with people with inclusive and age- and dementia-
dementia, their carers and the friendly, promoting respect and
organizations that represent them, the acceptance in a manner that meets the
media and other relevant stakeholders, needs of people with dementia and
organize national and local public their carers and enables participation,
health and awareness campaigns that safety and inclusion.
are community- and culture-specific.
This cooperative action will improve 38. Develop programmes, adapted to
the accuracy of the general public’s the relevant context, to encourage
knowledge about dementia, reduce dementia-friendly attitudes in the
stigmatization, dispel myths, promote community and the public and
early diagnosis, and emphasize the private sectors that are informed
need for gender- and culturally- by the experiences of people with
appropriate responses, recognition dementia and their carers. Target
of human rights and respect for the different community and stakeholder
autonomy of people with dementia. groups, including but not limited to:
school students and teachers, police,
37. Support changing all aspects of the ambulance, fire brigades, transport,
social and built environments, including financial and other public service
the provision of amenities, goods and providers, education and faith-based
services, in order to make them more organizations, and volunteers.
ACTIONS FOR THE SECRETARIAT
39. Offer technical support to Member organizations that represent them
States in strengthening global, regional in decision-making within WHO’s
and national capacity: own processes and on issues that
concern them;
●● to engage and include people
with dementia, their carers and ●● for the selection, formulation,
1. The global target indicator and means of verification are provided in the Appendix to this Annex.
15implementation and dissemination of what works in different contexts and
of best practices for awareness- disseminate this information.
raising and reduction of
stigmatization and discrimination 41. Promote awareness and understanding
towards people with dementia. of dementia, the human rights of people
with dementia and the role of families
40. Building upon the WHO Global and/or other carers as well as maintain
Network of Age-friendly Cities and and strengthen partnerships with
Communities and its dedicated organizations representing people with
website,1 integrate and link dementia- dementia and their carers.
friendly initiatives by documenting and
evaluating existing dementia-friendly 42. Develop guidance for Member States
initiatives in order to identify evidence on how to implement, monitor and
evaluate dementia-friendly initiatives.
PROPOSED ACTIONS FOR INTERNATIONAL,
REGIONAL AND NATIONAL PARTNERS
43. Encourage all stakeholders to: ●● redress the inequities in vulnerable
populations.
●● raise awareness of the magnitude of
the social and economic impact of 44. Ensure that people with dementia
dementia; are included in activities of the wider
community and foster cultural, social
●● include people with dementia, their and civic participation by enhancing
carers and families in all aspects their autonomy.
of developing and strengthening
services that support the autonomy 45. Share in the development and
of people with dementia; implementation of all relevant
programmes to raise awareness about
●● protect and promote human rights of dementia and make communities more
people with dementia and support dementia-friendly and -inclusive.
their carers and their families;
1. https://extranet.who.int/agefriendlyworld/ (accessed 8 March 2017).
1617
Action area 3:
Dementia risk
reduction
46. Growing evidence suggests an and the harmful use of alcohol, social
interrelationship between dementia engagement, promotion of cognitively
on one side and noncommunicable stimulating activities and learning as
disease and lifestyle-related risk factors well as prevention and management of
on the other. These risk factors include diabetes, hypertension, especially in
physical inactivity, obesity, unbalanced mid-life, and depression.
diets, tobacco use, harmful use of
alcohol, diabetes mellitus and mid- 48. Rationale. By improving the capacity
life hypertension. In addition, other of health and social care professionals
potentially modifiable risk factors to provide evidence-based,
are more specific to dementia and multisectoral, gender and culturally-
include social isolation, low educational appropriate interventions to the
attainment, cognitive inactivity and general population, educate about and
mid-life depression. Reducing the proactively manage modifiable risk
level of exposure of individuals and factors for dementia that are shared
populations to these potentially with other noncommunicable diseases,
modifiable risk factors, beginning in the risk of developing dementia can be
childhood and extending throughout reduced or its progression delayed.
life, can strengthen the capacity of
individuals and populations to make
healthier choices and follow lifestyle
patterns that foster good health.
49. Global target 3:
The relevant global targets
47. There is growing consensus that the defined in the Global action
following measures are protective and
plan for prevention and control
can reduce the risk of cognitive decline
and dementia: increasing physical
of noncommunicable diseases
activity, preventing and reducing 2013–2020 and any future
obesity, promotion of balanced and revisions are achieved for risk
healthy diets, cessation of tobacco use reduction and reported.1
1. See document WHA66/2013/REC/1, Annex 4, available at http://apps.who.int/gb/ebwha/pdf_files/WHA66-REC1/A66_REC1-en.
pdf#page=87, accessed 20 September 2017.
18PROPOSED ACTIONS FOR MEMBER STATES
50. Link dementia with other programmes, 51. Develop, deliver and promote evidence-
policies and campaigns on based, age-, gender-, disability- and
noncommunicable disease risk reduction culturally sensitive interventions
and health promotion across relevant and training to health professionals,
sectors by promoting physical activity, especially within the primary health
healthy and balanced diets. Specific care system, to improve knowledge and
actions include weight management for practices of such staff, and proactively
obese individuals, cessation of tobacco manage modifiable dementia risk factors
use and the harmful use of alcohol, formal when conducting counselling about
education and mentally stimulating risk reduction. Routinely update these
activities as well as lifelong social interventions as new scientific evidence
engagement in line with the principle of becomes available.
balancing prevention and care.
ACTIONS FOR THE SECRETARIAT
52. Linking to the actions specified in the ●● support the formulation and
global action plan for the prevention and implementation of evidence-based,
control of noncommunicable diseases multisectoral interventions for
2013–2020, offer technical support and reducing the risk of dementia.
strengthen global, regional and national
capacities and capabilities to: 53. Strengthen the evidence base and
share and disseminate evidence
●● raise awareness of the links to support policy interventions for
between dementia and other reducing potentially modifiable risk
noncommunicable diseases; factors for dementia by providing a
database of available evidence on the
●● integrate the reduction and control of prevalence of those risk factors and the
modifiable dementia risk factors into consequences of reducing them.
national health planning processes
and development agendas;
19PROPOSED ACTIONS FOR INTERNATIONAL,
REGIONAL AND NATIONAL PARTNERS
54. Encourage all stakeholders to engage ●● take particular actions that have
in activities to: been shown to reduce the risk of
dementia, particularly during mid-life;
●● promote and mainstream population
health strategies that are age- ●● support national efforts for
inclusive, gender-sensitive and prevention and control of
equity-based at national, regional noncommunicable diseases in
and international levels in order to general and dementia in particular,
support a socially active lifestyle for example, through exchange of
that is physically and mentally information on evidence-based
healthy for all, including people with best practices and dissemination of
dementia, their carers and families; research findings.
2021
Action area 4:
Dementia
diagnosis,
treatment, care
and support
55. Dementia is associated with complex term care covers all activities, whether
needs and high levels of dependency these are provided by health, social or
and morbidity in its later stages, palliative care services or result from a
requiring a range of health and social dementia-friendly environment. Palliative
care, including long-term-care services. care is a core component of the
People with dementia are also less likely continuum of care for people living with
to be diagnosed for comorbid health dementia from the point of diagnosis
conditions, which, when left untreated, through to the end of life and into the
can cause faster decline, and to receive bereavement stages for families and
the care and support they need to carers. It provides physical, psychosocial
manage them. The services that they and spiritual support for people with
require include case-finding, diagnosis, dementia and their carers including
treatment (including pharmacological support with advance care planning.
and psychosocial), rehabilitation,
palliative/end-of-life care and other 57. The global action plan proposes some
support such as home help, transport, principles for organizing and developing
food and the provision of a structured health and social care, including long-
day with meaningful activities. term care systems for dementia. Providing
sustainable care across the continuum
56. People with dementia should be from diagnosis to the end of life requires:
empowered to live in the community timely diagnosis; the integration of
and to receive care aligned with their dementia treatment and care into primary
wishes and preferences. To ensure that care; coordinated continuity of health
people with dementia can maintain and social care including long-term care
a level of functional ability consistent between different providers and system
with their basic rights, fundamental levels, multidisciplinary collaboration and
freedoms and human dignity, they active cooperation between paid and
need integrated, person-centred, unpaid carers. Planning responses to and
accessible, affordable health and social recovery from humanitarian emergencies
care, including long-term care. Long- must ensure that individual support for
22people with dementia and community 59. Rationale. The needs and preferences
psychosocial support are widely available. of people with dementia can be met
and their autonomy from diagnosis
58. Adequately trained and qualified to the end of life respected through
workforces are required to provide integrated, culturally appropriate,
these interventions. The continuity of person-centred, community-based
care between different care providers, health, psychosocial, long-term care and
multiple sectors and system levels and support and, where appropriate, the
active collaboration between paid and inputs of families and carers.
unpaid carers are crucial, from the first
symptoms of dementia until the end
of life. Integrated, evidence-based,
person-centred care is required in all
settings where people with dementia 60. Global target 4:
live, ranging from their homes, the
In at least 50% of countries,
community, assisted-living facilities and
nursing homes to hospitals and hospices. as a minimum, 50% of
The skills and capacity of the workforce the estimated number of
and services are often challenged by the people with dementia are
complex needs of people with dementia. diagnosed1 by 2025.2
PROPOSED ACTIONS FOR MEMBER STATES
61. Develop a pathway of efficient, 62. Build the knowledge and skills of
coordinated care for people with general and specialized staff in the
dementia that is embedded in the health health workforce to deliver evidence-
and social care system (including long- based, culturally-appropriate and human
term care), to provide integrated, person- rights-oriented health and social care,
centred care as and when it is required. including long-term care services for
The pathway should provide quality care people with dementia. (Mechanisms
and management that integrates multiple may include teaching the core
services, including primary health care, competences of dementia diagnosis,
home care, long-term care, specialist treatment and care in undergraduate
medical care, rehabilitation and palliative and graduate medical and paramedical
services, household help, food and training, and continuing training
transport services, other social welfare programmes for all health and social
services and meaningful activities, into care professionals, in collaboration with
a seamless bundle that enhances the key stakeholders such as regulatory
capacity and functional ability of people bodies.) Earmark budgets and resources
with dementia. for in-service training for these
1. All people who are diagnosed should receive appropriate post-diagnostic health and social care.
2. The global target indicator and means of verification are provided in the Appendix to this Annex.
23professionals, or include such budgets community-based care settings and
and resources in specific programmes. multidisciplinary, community-based
networks that integrate social and
63. Improve the quality of care towards the health systems and provide quality care
end of life by: recognizing advanced and evidence-based interventions.
dementia as a condition requiring
palliative care; promoting awareness 65. Enhance access to a range of
about advanced care planning for person-centred, gender-sensitive,
all people living with dementia to culturally-appropriate and responsive
document their wishes for the end of services including liaison with local
their life; using validated end-of-life nongovernmental organizations and
pathways and ensuring that people other stakeholders in order to provide
with dementia have their values and information that empowers people with
preferences respected and are cared for dementia to make informed choices
in their place of choice; and providing and decisions about their care. Respect
training for health care professionals and their rights and preferences and foster
palliative care specialists. active collaboration between the person
with dementia, their families and carers
64. Systematically shift the locus of and service providers from the first
care away from hospitals towards symptoms through to the end of life.
ACTIONS FOR THE SECRETARIAT
66. Offer technical support to Member identification of gaps, specific needs
States for documenting and sharing and training requirements for health and
best practices of evidence-based social care workers as well as graduate
service delivery and care coordination, and undergraduate education about
and provide support to Member States integrated provision of long-term care
in developing dementia care pathways that is person-centred from diagnosis to
in line with the principle of universal the end of life.
health coverage.
68. Provide guidance on strengthening
67. Develop and implement guidelines, the implementation of the dementia
tools and training materials, such as component of the WHO Mental Health
model training curricula, covering core Gap Action Programme1 to enhance
competencies relating to dementia for capabilities of existing human resources
health and social care workers in the and train more staff, and on improving
field. Provide support to Member States the ability to provide quality care and
in the formulation of human resource evidence-based interventions through
strategies for dementia, including the primary health care.
1. See http://www.who.int/mental_health/mhgap/en/ (accessed 8 March 2017).
24PROPOSED ACTIONS FOR INTERNATIONAL,
REGIONAL AND NATIONAL PARTNERS
69. Support people with dementia and teaching institutions in revising the
their families and carers, for example, contents of curricula so as to place
by developing evidence-based, user- greater emphasis on dementia, and
friendly information and training tools ensuring that people with dementia
concerning dementia and available are engaged, as appropriate, in
services to allow timely diagnosis the development and provision of
and enhance the continued provision education and training.
of long-term care, or by setting up
national helplines and websites with 71. Promote community-based rehabilitation
information and advice at local levels. as an effective strategy to enable
and support people with dementia in
70. Support the training of health and preserving their autonomy and rights and
social care personnel to provide ensuring that the person with dementia
evidence-based treatment and care for remains at the centre of all discussions on
people with dementia, by developing diagnosis, treatment and care.
training relevant to needs, supporting
25Action area 5:
Support for
dementia carers
72. Carers can be defined by their and well-being and social relationships.
relationship to the person with dementia Health systems must consider both
and their care input. Many dementia the substantial need of people with
carers are relatives or extended family dementia for help from others and
members, but close friends, neighbours its significant impact on carers and
and paid lay persons or volunteers can families, including economic impact.
also take on responsibilities for caring. Carers should have access to support
Carers are involved in providing “hands- and services tailored to their needs
on” care and support for people with in order effectively to respond to and
dementia or play a significant role in manage the physical, mental and social
organizing the care delivered by others. demands of their caring role.
Carers often know the person with
dementia well, and therefore are likely 74. Rationale. The creation and
to have knowledge of and information implementation of means to deliver
about the person with dementia that multisectoral care, support and
is crucial for developing effective services for carers will help to meet
personalized needs-based treatment the needs of carers, and prevent a
and care plans. Carers should therefore decline in their physical and mental
be considered essential partners in the health and social well-being.
planning and provision of care in all
settings according to the wishes and 75. Global target 5:
needs of the person with dementia.
75% of countries provide support
73. It should be noted that being a carer and training programmes for
for someone with dementia may affect carers and families of people
the carer’s physical and mental health with dementia by 2025.1
1. The global target indicator and means of verification are provided in the Appendix to this Annex.
26PROPOSED ACTIONS FOR MEMBER STATES
76. Provide accessible and evidence-based 78. Develop or strengthen protection of
information, training programmes, carers, such as social and disability
respite services and other resources benefits, policies and legislation
tailored to the needs of carers to against discrimination, for example in
improve knowledge and caregiving employment, and support them beyond
skills, such as coping with challenging their caregiving role in all settings.
behaviour, to enable people with
dementia to live in the community and 79. Involve carers in the planning of care,
to prevent stress and health problems with attention being given to the
for their carers. wishes and preferences of people with
dementia and their families.
77. P
rovide training programmes for
health care and social care staff for the
identification and reduction of stress
and burn-out of carers.
ACTIONS FOR THE SECRETARIAT
80. Build evidence on and articulate the 81. Facilitate access to affordable, evidence-
importance of carers in the lives of based resources for carers to improve
people with dementia, while raising knowledge and skills, reduce emotional
awareness about the disproportionate stress and improve coping, self-efficacy
effect on women, and offer technical and health by making use of information
support to Member States by and communication technologies
monitoring trends in availability of such as Internet and mobile phone
carer-support services. Provide support technologies (for instance, WHO
to Member States in developing iSupport2), for education, skills training
evidence-based information, training and social support.
programmes and respite services for
carers, using a multisectoral approach,
and foster outcome measurement.
2. WHO iSupport: e-programme for caregivers of people living with dementia (http://www.who.int/mental_health/neurology/
dementia/isupport/en/, accessed 8 March 2017).
27PROPOSED ACTIONS FOR INTERNATIONAL,
REGIONAL AND NATIONAL PARTNERS
82. Increase awareness of the involvement, in accessing health and social care,
and its consequences, of carers and including long-term care services.
families in the lives of people with
dementia, protecting them from 83. Assist in carrying out appropriate
discrimination, supporting their training programmes: for carers
ability to continue their caregiving and families to enhance knowledge
in a gender-sensitive manner, and and caregiving skills across the
empowering carers with opportunities progression of dementia; and on a
to develop self-advocacy skills to person-centred approach to promote
be able to meet specific challenges respect and well-being.
2829
Action area 6:
Information
systems for
dementia
84. Systematic, routine population-level 85. Rationale. Systematic monitoring
monitoring of a core set of dementia and evaluation of the usage of health
indicators provides the data needed and social care systems can provide
to guide evidence-based actions to the best available evidence for policy
improve services and to measure development and service delivery,
progress towards implementing and can improve prevention and the
national dementia policies. By building accessibility and coordination of care
and/or strengthening information for people with dementia across the
systems for dementia, the functional continuum, from risk reduction to the
trajectories of people with dementia, end of life.
their carers and families can be
improved. However, this will require
significant changes, while respecting 86. Global target 6:
existing regulatory frameworks, to the
50% of countries routinely collect
routine collection, recording, linkage
a core set of dementia indicators
and disaggregation for the sharing of
health and administrative data of each through their national health and
encounter of a person with dementia social information systems every
with the health and social care system. two years by 2025.1
PROPOSED ACTIONS FOR MEMBER STATES
87. Develop, implement and improve, access to health and social care
as needed, national surveillance and data and map available services and
monitoring systems, including registers resources at national and regional levels
that are integrated into existing in order to improve service delivery and
health information systems, in order coverage across the care continuum
to improve availability of high-quality, from prevention through risk reduction
multisectoral data on dementia. Enable to the end of life.
1. The global target indicator and means of verification are provided in the Appendix to this Annex.
3088. Update or create supportive policy routine reporting on dementia.
or legislation pertaining to the
measurement, collection and sharing 89. Collect and use the necessary data
of data on health and social care for on epidemiology, care and resources
dementia and integrate this information relating to dementia in the country in
routinely into national health order to implement relevant policies
information systems so as to facilitate and plans.
ACTIONS FOR THE SECRETARIAT
90. Offer technical support to Members guidance, training and technical
States as they: assistance on capturing information
and facilitating the use of these data
●● develop and/or reform national data to monitor outcomes. WHO’s Global
collection systems, including health Dementia Observatory provides the
information systems, in order to mechanism to monitor systematically
strengthen multisectoral dementia and facilitate the use of data from these
data collection; core indicators, offering a platform for
the exchange of data and knowledge
●● build national capacity and in order to support evidence-based
resources for systematic collection, service planning, sharing of best
analysis and use of dementia specific practices and strengthening of both
data through development of policies on dementia and health and
targets and indicators that account social care systems.
for national circumstances, yet are
aligned as closely as possible with 92. Offer technical support to Member States
indicators and targets of the global in generating and providing information
monitoring framework. for monitoring of global, regional and
national targets as required, through the
91. Develop a core set of indicators in Global Dementia Observatory.
line with this action plan and provide
PROPOSED ACTIONS FOR INTERNATIONAL,
REGIONAL AND NATIONAL PARTNERS
93. Provide support to Member States and dementia, carers and families; and enable
the Secretariat in developing tools and an assessment of trends over time.
strengthening capacity for surveillance
and information systems that: capture 94. Advocate the involvement of people
data on core indicators on dementia; with dementia and their families and
monitor usage of health and social care carers in the creation, collection,
and support services for people with analysis and use of data on dementia.
31Action area 7:
Dementia research
and innovation
95. If the incidence of dementia is to be agenda, will increase the likelihood of
reduced and the lives of people with effective progress globally towards
dementia are to be improved, research better prevention, diagnosis, treatment
and innovation are crucial, as is their and care for people with dementia.
translation into daily practice. It is
important not only that funding and 97. There is a growing interest in, and call for,
appropriate infrastructures for dementia the use of innovative health technologies
research and innovation are available in prevention, risk reduction, early
but also that mechanisms are in place diagnosis, treatment, care and support
that assist appropriate recruitment of relating to dementia. These innovations
people with dementia, their families and aim to improve knowledge, skills and
carers into research studies. Research coping mechanisms in order to facilitate
and development costs are higher for and support the daily lives of people
dementia than other therapeutic areas, with dementia and their carers while
because of lower success rates, longer meeting, in particular, identified needs in
development times, and low recruitment an evidence-based and age-, gender- and
rates into trials; this disproportion culturally-sensitive manner.
discourages investment in this area.
98. Rationale. The successful implementation
Research is needed to find a cure
of research into dementia aligned
for dementia, but research is equally
with identified research priorities and
needed into prevention, risk reduction,
social and technological innovations
diagnosis, treatment and care, including
can increase the likelihood of effective
the disciplines of social science, public
progress towards better prevention,
health and implementation research.
diagnosis, treatment and care for people
96. Collaboration among and between with dementia.
Member States and relevant
stakeholders, with a particular focus 99. Global target 7:
on strengthening North–South, South– The output of global research
South and triangular cooperation, to on dementia doubles between
implement a global dementia research 2017 and 2025.1
1. The global target indicator and means of verification are provided in the Appendix to this Annex.
32PROPOSED ACTIONS FOR MEMBER STATES
100. Develop, implement and monitor promote projects that: support
the realization of a national research collaborative national and international
agenda on prevention, diagnosis, research; promote sharing of and open
treatment and care of people with access to research data; generate
dementia in collaboration with knowledge on how to translate what
academic and research institutions; is already known about dementia into
this work could be stand-alone or action; and support the retention of
integrated into related research the research workforce.
programmes that focus on filling
gaps in evidence to support policy or 102. Foster the development of
practice. Strengthen research capacity technological innovations that, in terms
for academic collaborations on national of design and evaluation, respond to
priorities for research into dementia the physical, psychological and social
by engaging relevant stakeholders, needs of people with dementia, their
including people with dementia. carers or people at risk of developing
Relevant steps may include: improving dementia; these innovations include
research infrastructure for dementia and but are not limited to diagnosis,
related fields, enhancing competence disease monitoring and assessment,
of researchers to conduct high-quality assistive technologies, pharmaceuticals
research, and establishing centres of and new models of care or
excellence for research into dementia. forecasting/modelling techniques.
101. Increase investment in dementia 103. Following the national ethical
research and innovative health requirements for research, promote
technologies and improve research equitable opportunities and access
governance as an integral component for people with dementia and their
of the national response to dementia. carers to be part of clinical and social
In particular, allocate budgets to research that concerns them.
ACTIONS FOR THE SECRETARIAT
104. Draw up a global research agenda research, capacities, methods
and work together with Member and collaboration in the fields of
States to strengthen and build biomedical and social sciences
capacity in the area of dementia research, inter alia, through a network
research by incorporating it in of WHO collaborating centres,
national and subnational policies and countries from all WHO regions, and
plans relating to dementia. Advocate civil society organizations.
increased investment in dementia
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