Global action plan on the public health response to dementia 2017 2025
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Global action plan
on the public health
response to dementia
2017 - 2025
Global action plan
on the public health
response to dementia
2017 - 2025
FOREWORD
Dementia is a major cause of disability families. It is an important opportunity
Global action plan on the public health response to dementia 2017–2025 and dependency among older adults for individuals, communities and Member
worldwide, affecting memory, cognitive States to realize the vision of a world in
ISBN 978-92-4-151348-7
abilities, and behavior, ultimately interfering which dementia is prevented and people
© World Health Organization, 2017 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
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IGO licence (CC BY-NC-SA 3.0 IGO; https://creativecommons.org/licenses/by-nc-sa/3.0/igo). only significant in financial terms, but also life with meaning and dignity. The World
represents substantial human costs to Health Organization looks forward to
Under the terms of this licence, you may copy, redistribute and adapt the work for non-commercial purposes, provided
the work is appropriately cited, as indicated below. In any use of this work, there should be no suggestion that WHO
countries, societies, families and individuals. fulfilling the ambitious targets presented
endorses any specific organization, products or services. The use of the WHO logo is not permitted. If you adapt in the action plan by working alongside
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translation of this work, you should add the following disclaimer along with the suggested citation: “This translation The global action plan on the public
was not created by the World Health Organization (WHO). WHO is not responsible for the content or accuracy of this including people with dementia and their
translation. The original English edition shall be the binding and authentic edition”. 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
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physical, mental and social wellbeing for for present and future generations.
people with dementia, their carers and
Suggested citation. Global action plan on the public health response to dementia 2017–2025. Geneva: World Health
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4
CONTENT
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
Appendices 36
Decision on the global action plan on the public health response 36
to dementia
Indicators for measuring progress towards the defined targets of 37
the global action plan on the public health response to dementia
and means of verification
Links to other global action plans, strategies and programmes 43
List of other documents that are linked to the global action plan on 43
the public health response to dementia
1
OVERVIEW OF worldwide, having a significant impact
not only on individuals but also on
dementia in low- and middle income
countries will contribute further to
THE GLOBAL their carers, families, communities and
societies. Dementia accounts for 11.9%
increasing inequalities between
countries and populations.
SITUATION of the years lived with disability due to a
noncommunicable disease.1 In light of the
improved life expectancy globally, this
6. Currently, the gap is wide between
the need for prevention, treatment
figure is expected to increase further. and care for dementia and the actual
provision of these services. Dementia
1. Dementia is an umbrella term for several 3. Crucially, although age is the strongest 5. Dementia leads to increased costs for is underdiagnosed worldwide, and, if
diseases that are mostly progressive, known risk factor for the onset of governments, communities, families and a diagnosis is made, it is typically at
affecting memory, other cognitive dementia, it is not an inevitable individuals, and to loss in productivity a relatively late stage in the disease
abilities and behaviour, and that interfere consequence of ageing. Further, dementia for economies. process. Long-term care pathways (from
significantly with a person’s ability to does not exclusively affect older people, diagnosis until the end of life) for people
maintain the activities of daily living. with young onset dementia (defined as ●● In 2015, dementia costs2 were with dementia are frequently fragmented
Alzheimer disease is the most common the onset of symptoms before the age estimated at US$ 818 billion, equivalent if not entirely lacking. Lack of awareness
form of dementia and may contribute of 65 years) accounting for up to 9% to 1.1% of global gross domestic and understanding of dementia is often
to 60–70% of cases. Other major forms of cases.4 Some research has shown a product, ranging from 0.2% for low- to blame, resulting in stigmatization
include vascular dementia, dementia with relationship between the development of and middle-income countries to 1.4% and barriers to diagnosis and care.
Lewy bodies, and a group of diseases that cognitive impairment and lifestyle-related for high income countries. By 2030, it People with dementia are frequently
contribute to frontotemporal dementia. risk factors that are shared with other is estimated that the cost of caring for denied their human rights in both the
The boundaries between different forms noncommunicable diseases. These risk people with dementia worldwide will community and care homes. In addition,
of dementia are indistinct and mixed forms factors include physical inactivity, obesity, have risen to US$ 2 trillion, a total that people with dementia are not always
often coexist. unbalanced diets, tobacco use and could undermine social and economic involved in decision-making processes
harmful use of alcohol as well as diabetes development globally and overwhelm and their wishes and preferences for
mellitus and mid-life hypertension. Other health and social services, including care are often not respected.
2. In 2015, dementia affected 47 million potentially modifiable risk factors more long term care systems specifically.3
people worldwide (or roughly 5% of the specific to dementia include mid-life 7. WHO and the World Bank estimate
world’s elderly population), a figure that depression, low educational attainment, ●● People with dementia and their a need by 2030 for 40 million new
is predicted to increase to 75 million in social isolation and cognitive inactivity. families face significant financial health and social care jobs globally
2030 and 132 million by 2050. Recent Additionally, non-modifiable genetic risk impact from the cost of health and and about 18 million additional health
reviews estimate that globally nearly 9.9 factors exist that increase a person’s risk social care and from reduction workers, primarily in low-resource
million people develop dementia each of developing dementia.5 There is also or loss of income. In high-income settings, in order to attain high and
year; this figure translates into one new evidence suggesting that overall more countries, the costs related to effective coverage with the broad
case every three seconds. Nearly 60% women develop dementia than men.3 dementia are shared between range of necessary health services.
of people with dementia currently live in informal care (45%) and social care In addressing dementia, expanding
low- and middle-income countries and (40%). In contrast, in low- and the health and social care workforce
most new cases (71%) are expected to 4. Dementia is a major cause of disability middle-income countries social care with appropriate skill mixes as well as
occur in those countries.2,3 and dependency among older adults 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.
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). 1. Prince M, Albanese E, Guerchet M, Prina M. World Alzheimer Report 2014. Dementia and risk reduction: an analysis of
3. Prince M, Wimo A, Guerchet M, Ali GC, Wu Yutzu, Prina M. World Alzheimer Report 2015. The global impact of dementia: an protective and modifiable risk factors. London: Alzheimer’s Disease International; 2014 (http://www.alz.co.uk/research/
analysis of prevalence, incidence, cost and trends. London: Alzheimer’s Disease International; 2015. WorldAlzheimerReport2014.pdf, accessed 8 March 2017).
4. Alzheimer’s Disease International and WHO. Dementia: a public health priority. Geneva: World Health Organization; 2012 (http:// 2. Direct medical and social care costs and costs of informal care.
www.who.int/mental_health/publications/dementia_report_2012/en/, 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
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/ analysis of prevalence, incidence, cost and trends. London: Alzheimer’s Disease International; 2015.
S0140-6736(13)60630-3.
2 3
VISION, HUMA
RIGH N
GOALS AND TS
CROSS-
CUTTING a. Human rights of people b. Empowerment and c. Evidence-based
PRINCIPLES with dementia
Policies, plans, legislation,
engagement of people
with dementia and
practice for dementia
risk reduction and care
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
Vision Cross-cutting expectations and human organizations that strategies and interventions
8. T
he vision of the global action principles rights of people with
dementia, consistent with
represent them should be
empowered and involved
for dementia risk reduction
and care that are person-
plan on the public health response the Convention on the in advocacy, policy, centred, cost-effective,
10. The global action plan is Rights of Persons with planning, legislation, sustainable and affordable,
to dementia is a world in which
grounded in the following Disabilities and other service provision, and take public health
dementia is prevented and people
seven cross-cutting principles. international and regional monitoring and research principles and cultural
with dementia and their carers
human rights instruments. of dementia. aspects into account.
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 e. Universal health and Equity
f. g. Appropriate attention
dementia, their carers and families, public health response to dementia social care coverage to dementia prevention,
while decreasing the impact of All efforts to implement
for dementia cure and care
dementia on them as well as on A comprehensive and coordinated public health responses
response to dementia requires Designing and to dementia must support Steps to realize this focus
communities and countries.
collaboration among all stakeholders implementing health gender equity and include using existing
to improve prevention, risk reduction, programmes for universal take a gender-sensitive knowledge and experience
diagnosis, treatment and care. health coverage must perspective, keeping in mind to improve prevention,
Achieving such collaboration requires include financial risk all vulnerabilities specific risk reduction, care and
engagement at the government level protection and ensuring to each national context, support for people with
of all relevant public sectors, such as equitable access to a consistent with the 2030 dementia and their carers
health (including alignment of existing broad range of promotive, Agenda for Sustainable and generation of new
noncommunicable disease, mental preventive, diagnostic and Development, which knowledge towards
health and ageing efforts), social care services (including recognizes that people who finding disease-modifying
services, education, employment, palliative, rehabilitative are vulnerable, including treatments or a cure,
justice, and housing, as well as and social support) for all people with disabilities, effective risk reduction
partnerships with relevant civil society people with dementia and older people and migrants, interventions and
and private sector entities. their carers. must be empowered. innovative models of care.
4 5
ACTIONS 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.
6 7
Action areas
15. The global action plan comprises seven action areas, which form the
underlying structural framework:
Dementia as a Dementia awareness Dementia Dementia diagnosis,
public health priority and friendliness risk reduction treatment, care and
support
1 2 3 4
Support for Information systems Dementia research
dementia carers for dementia and innovation
5 6 7
8 9
Action area 1: 20. Promote mechanisms to monitor entity responsible for noncommunicable
the protection of the human rights, diseases, mental health or ageing within
Dementia as a
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
public health objectives of the Convention on the
Rights of Persons with Disabilities and
planning, implementation, mechanisms
for multisectoral collaboration, service
priority other international and regional human
rights instruments. These mechanisms
evaluation, monitoring and reporting
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
16. Given the range of the population comprehensive, multisectoral approach exploitation and abuse in institutions as other resources required to implement
affected directly or indirectly by will support the recognition, and address well as in the community. national dementia plans and actions,
dementia and the complexity of this the complex needs, of people with and set up mechanisms for tracking
condition, dementia requires a whole- dementia within the context of each 21. Set up a focal point, unit or functional expenditures on dementia in health,
of-government, broad, multistakeholder, country. This approach is in line with the division responsible for dementia or social and other relevant sectors such as
public health approach. Such an principle of universal health coverage and a coordination mechanism within the education and employment.
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: ACTIONS FOR THE SECRETARIAT
carers and other relevant stakeholders 75% of countries will have
and partners. 23. Offer technical support, tools and partners and establishing or
developed or updated national
guidance to Member States, and strengthening national reference
17. Rationale. The development and policies, strategies, plans or strengthen national capacity in: centres, WHO collaborating centres
coordination of policies, legislation, frameworks for dementia, either and knowledge-sharing networks;
plans, frameworks and integrated stand-alone or integrated into ●● leadership within health ministries
programmes of care through a other policies/plans, by 2025.1 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
PROPOSED ACTIONS FOR MEMBER STATES resource planning, budgeting and ensure maximum synergy and optimal
tracking of expenditure on dementia; use of existing and new resources.
19. Develop, strengthen and implement and disability (or equivalent). These
national and/or subnational strategies, undertakings should give consideration ●● evaluating and implementing 24. Compile and share knowledge and best
policies, plans or frameworks that to equity, dignity and the human rights evidence-based options that suit practices on existing policy documents
address dementia, whether as separate of people with dementia and support Member States’ needs and capacities dealing with dementia, including
instruments or integrated into other the needs of carers, in consultation and assessing the health impact codes of practice and mechanisms to
planned actions for noncommunicable with people with dementia and other of public policies on dementia by monitor the protection of human rights
diseases, mental health, ageing, relevant stakeholders. supporting national and international and implementation of legislation,
1. The global target indicators and means of verification are provided in the Appendix.
10 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
12 13Action area 2: 34. Global target 2.1: 35. Global target 2.2:
100% of countries will have at 50% of countries will have
Dementia least one functioning public
awareness campaign on
at least one dementia-
friendly initiative to foster a
awareness and dementia to foster a dementia-
inclusive society by 2025.1
dementia-inclusive society
by 2025.1
friendliness
PROPOSED ACTIONS FOR MEMBER STATES
29. There is a common misconception that aspects of dementia friendly initiatives 36. In collaboration with people with inclusive and age- and dementia-
dementia is a natural and inevitable part include safeguarding the human rights dementia, their carers and the friendly, promoting respect and
of ageing rather than a disease process, of people with dementia, tackling the organizations that represent them, the acceptance in a manner that meets the
resulting in barriers to diagnosis and care. stigmatization associated with dementia, media and other relevant stakeholders, needs of people with dementia and
The lack of understanding also causes promoting a greater involvement of organize national and local public their carers and enables participation,
fear of developing dementia and leads people with dementia in society, and health and awareness campaigns that safety and inclusion.
to stigmatization and discrimination. supporting families and carers of people are community- and culture-specific.
Furthermore, people with dementia are with dementia. The concept of dementia- This cooperative action will improve 38. Develop programmes, adapted to
frequently denied their human rights in friendliness is tightly linked to societies the accuracy of the general public’s the relevant context, to encourage
both the community and care homes. also being age-friendly. Both age- and knowledge about dementia, reduce dementia-friendly attitudes in the
dementia-friendly initiatives should take stigmatization, dispel myths, promote community and the public and
30. Dementia-awareness programmes into account the fact that a significant early diagnosis, and emphasize the private sectors that are informed
should: foster an accurate understanding number of older people are living alone need for gender- and culturally- by the experiences of people with
of dementia and its various subtypes as and are sometimes very isolated. appropriate responses, recognition dementia and their carers. Target
clinical diseases; reduce stigmatization of human rights and respect for the different community and stakeholder
and discrimination associated with 32. Dementia-awareness campaigns and autonomy of people with dementia. groups, including but not limited to:
dementia; educate people about the dementia-friendly programmes that are school students and teachers, police,
human rights of people with dementia tailored to the cultural contexts and 37. Support changing all aspects of the ambulance, fire brigades, transport,
and the Convention on the Rights of particular needs of a community can social and built environments, including financial and other public service
Persons with Disabilities; enhance the promote enhanced health and social the provision of amenities, goods and providers, education and faith-based
general population’s ability to recognize outcomes that reflect the wishes and services, in order to make them more organizations, and volunteers.
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. ACTIONS FOR THE SECRETARIAT
risk reduction behaviour in all.
33. Rationale. Increasing public awareness, 39. Offer technical support to Member organizations that represent them
31. A dementia-friendly society possesses acceptance and understanding of States in strengthening global, regional in decision-making within WHO’s
an inclusive and accessible community dementia and making the societal and national capacity: own processes and on issues that
environment that optimizes opportunities environment dementia-friendly will concern them;
●● to engage and include people
for health, participation and security for enable people with dementia to
with dementia, their carers and ●● for the selection, formulation,
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. 1. The global target indicator and means of verification are provided in the Appendix.
14 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).
16 17Action area 3:
PROPOSED ACTIONS FOR MEMBER STATES
Dementia risk
reduction
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
46. Growing evidence suggests an and the harmful use of alcohol, social
education and mentally stimulating risk reduction. Routinely update these
interrelationship between dementia engagement, promotion of cognitively
activities as well as lifelong social interventions as new scientific evidence
on one side and noncommunicable stimulating activities and learning as
engagement in line with the principle of becomes available.
disease and lifestyle-related risk factors well as prevention and management of
balancing prevention and care.
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 ACTIONS FOR THE SECRETARIAT
potentially modifiable risk factors to provide evidence-based,
are more specific to dementia and multisectoral, gender and culturally- 52. Linking to the actions specified in the ●● support the formulation and
include social isolation, low educational appropriate interventions to the global action plan for the prevention and implementation of evidence-based,
attainment, cognitive inactivity and general population, educate about and control of noncommunicable diseases multisectoral interventions for
mid-life depression. Reducing the proactively manage modifiable risk 2013–2020, offer technical support and reducing the risk of dementia.
level of exposure of individuals and factors for dementia that are shared strengthen global, regional and national
populations to these potentially with other noncommunicable diseases, capacities and capabilities to: 53. Strengthen the evidence base and
modifiable risk factors, beginning in the risk of developing dementia can be share and disseminate evidence
childhood and extending throughout reduced or its progression delayed. ●● raise awareness of the links to support policy interventions for
life, can strengthen the capacity of between dementia and other reducing potentially modifiable risk
individuals and populations to make noncommunicable diseases; factors for dementia by providing a
healthier choices and follow lifestyle database of available evidence on the
patterns that foster good health.
49. Global target 3: ●● integrate the reduction and control of prevalence of those risk factors and the
The relevant global targets modifiable dementia risk factors into consequences of reducing them.
47. There is growing consensus that the national health planning processes
defined in the Global action
following measures are protective and and development agendas;
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.
18 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.
20 21Action area 4: people with dementia and community 59. Rationale. The needs and preferences
psychosocial support are widely available. of people with dementia can be met
Dementia 58. Adequately trained and qualified
and their autonomy from diagnosis
to the end of life respected through
diagnosis, workforces are required to provide
these interventions. The continuity of
integrated, culturally appropriate,
person-centred, community-based
treatment, care care between different care providers,
multiple sectors and system levels and
health, psychosocial, long-term care and
support and, where appropriate, the
and support
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
55. Dementia is associated with complex term care covers all activities, whether settings where people with dementia 60. Global target 4:
needs and high levels of dependency these are provided by health, social or live, ranging from their homes, the
and morbidity in its later stages, palliative care services or result from a In at least 50% of countries,
community, assisted-living facilities and
requiring a range of health and social dementia-friendly environment. Palliative nursing homes to hospitals and hospices. as a minimum, 50% of
care, including long-term-care services. care is a core component of the The skills and capacity of the workforce the estimated number of
People with dementia are also less likely continuum of care for people living with and services are often challenged by the people with dementia are
to be diagnosed for comorbid health dementia from the point of diagnosis complex needs of people with dementia. diagnosed1 by 2025.2
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 PROPOSED ACTIONS FOR MEMBER STATES
treatment (including pharmacological support with advance care planning.
and psychosocial), rehabilitation, 61. Develop a pathway of efficient, 62. Build the knowledge and skills of
palliative/end-of-life care and other 57. The global action plan proposes some coordinated care for people with general and specialized staff in the
support such as home help, transport, principles for organizing and developing dementia that is embedded in the health health workforce to deliver evidence-
food and the provision of a structured health and social care, including long- and social care system (including long- based, culturally-appropriate and human
day with meaningful activities. term care systems for dementia. Providing term care), to provide integrated, person- rights-oriented health and social care,
sustainable care across the continuum centred care as and when it is required. including long-term care services for
56. People with dementia should be from diagnosis to the end of life requires: The pathway should provide quality care people with dementia. (Mechanisms
empowered to live in the community timely diagnosis; the integration of and management that integrates multiple may include teaching the core
and to receive care aligned with their dementia treatment and care into primary services, including primary health care, competences of dementia diagnosis,
wishes and preferences. To ensure that care; coordinated continuity of health home care, long-term care, specialist treatment and care in undergraduate
people with dementia can maintain and social care including long-term care medical care, rehabilitation and palliative and graduate medical and paramedical
a level of functional ability consistent between different providers and system services, household help, food and training, and continuing training
with their basic rights, fundamental levels, multidisciplinary collaboration and transport services, other social welfare programmes for all health and social
freedoms and human dignity, they active cooperation between paid and services and meaningful activities, into care professionals, in collaboration with
need integrated, person-centred, unpaid carers. Planning responses to and a seamless bundle that enhances the key stakeholders such as regulatory
accessible, affordable health and social recovery from humanitarian emergencies capacity and functional ability of people bodies.) Earmark budgets and resources
care, including long-term care. Long- must ensure that individual support for 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.
22 23professionals, or include such budgets community-based care settings and
and resources in specific programmes. multidisciplinary, community-based
63. Improve the quality of care towards the
networks that integrate social and
health systems and provide quality care
PROPOSED ACTIONS FOR INTERNATIONAL,
end of life by: recognizing advanced and evidence-based interventions. REGIONAL AND NATIONAL PARTNERS
dementia as a condition requiring
palliative care; promoting awareness 65. Enhance access to a range of 69. Support people with dementia and teaching institutions in revising the
about advanced care planning for person-centred, gender-sensitive, their families and carers, for example, contents of curricula so as to place
all people living with dementia to culturally-appropriate and responsive by developing evidence-based, user- greater emphasis on dementia, and
document their wishes for the end of services including liaison with local friendly information and training tools ensuring that people with dementia
their life; using validated end-of-life nongovernmental organizations and concerning dementia and available are engaged, as appropriate, in
pathways and ensuring that people other stakeholders in order to provide services to allow timely diagnosis the development and provision of
with dementia have their values and information that empowers people with and enhance the continued provision education and training.
preferences respected and are cared for dementia to make informed choices of long-term care, or by setting up
in their place of choice; and providing and decisions about their care. Respect national helplines and websites with 71. Promote community-based rehabilitation
training for health care professionals and their rights and preferences and foster information and advice at local levels. as an effective strategy to enable
palliative care specialists. active collaboration between the person and support people with dementia in
with dementia, their families and carers 70. Support the training of health and preserving their autonomy and rights and
64. Systematically shift the locus of and service providers from the first social care personnel to provide ensuring that the person with dementia
care away from hospitals towards symptoms through to the end of life. 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
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).
24 25Action area 5:
PROPOSED ACTIONS FOR MEMBER STATES
Support for
dementia carers
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
72. Carers can be defined by their and well-being and social relationships. wishes and preferences of people with
for their carers.
relationship to the person with dementia Health systems must consider both dementia and their families.
and their care input. Many dementia the substantial need of people with 77. P
rovide training programmes for
carers are relatives or extended family dementia for help from others and health care and social care staff for the
members, but close friends, neighbours its significant impact on carers and identification and reduction of stress
and paid lay persons or volunteers can families, including economic impact. and burn-out of carers.
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.
Carers often know the person with
demands of their caring role. ACTIONS FOR THE SECRETARIAT
dementia well, and therefore are likely 74. Rationale. The creation and 80. Build evidence on and articulate the 81. Facilitate access to affordable, evidence-
to have knowledge of and information implementation of means to deliver importance of carers in the lives of based resources for carers to improve
about the person with dementia that multisectoral care, support and people with dementia, while raising knowledge and skills, reduce emotional
is crucial for developing effective services for carers will help to meet awareness about the disproportionate stress and improve coping, self-efficacy
personalized needs-based treatment the needs of carers, and prevent a effect on women, and offer technical and health by making use of information
and care plans. Carers should therefore decline in their physical and mental support to Member States by and communication technologies
be considered essential partners in the health and social well-being. monitoring trends in availability of such as Internet and mobile phone
planning and provision of care in all carer-support services. Provide support technologies (for instance, WHO
settings according to the wishes and 75. Global target 5: to Member States in developing iSupport2), for education, skills training
needs of the person with dementia. evidence-based information, training and social support.
75% of countries provide support
programmes and respite services for
73. It should be noted that being a carer and training programmes for
carers, using a multisectoral approach,
for someone with dementia may affect carers and families of people
and foster outcome measurement.
the carer’s physical and mental health with dementia by 2025.1
2. WHO iSupport: e-programme for caregivers of people living with dementia (http://www.who.int/mental_health/neurology/
1. The global target indicator and means of verification are provided in the Appendix. dementia/isupport/en/, accessed 8 March 2017).
26 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.
28 29Action area 6: 88. Update or create supportive policy routine reporting on dementia.
Information
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
systems for dementia and integrate this information
routinely into national health
relating to dementia in the country in
order to implement relevant policies
dementia 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
84. Systematic, routine population-level 85. Rationale. Systematic monitoring
and facilitating the use of these data
monitoring of a core set of dementia and evaluation of the usage of health
●● develop and/or reform national data to monitor outcomes. WHO’s Global
indicators provides the data needed and social care systems can provide
collection systems, including health Dementia Observatory provides the
to guide evidence-based actions to the best available evidence for policy
information systems, in order to mechanism to monitor systematically
improve services and to measure development and service delivery,
strengthen multisectoral dementia and facilitate the use of data from these
progress towards implementing and can improve prevention and the
data collection; core indicators, offering a platform for
national dementia policies. By building accessibility and coordination of care
the exchange of data and knowledge
and/or strengthening information for people with dementia across the
●● build national capacity and in order to support evidence-based
systems for dementia, the functional continuum, from risk reduction to the
resources for systematic collection, service planning, sharing of best
trajectories of people with dementia, end of life.
analysis and use of dementia specific practices and strengthening of both
their carers and families can be
data through development of policies on dementia and health and
improved. However, this will require
targets and indicators that account social care systems.
significant changes, while respecting 86. Global target 6:
for national circumstances, yet are
existing regulatory frameworks, to the
50% of countries routinely collect aligned as closely as possible with 92. Offer technical support to Member States
routine collection, recording, linkage
a core set of dementia indicators indicators and targets of the global in generating and providing information
and disaggregation for the sharing of
through their national health and monitoring framework. for monitoring of global, regional and
health and administrative data of each
social information systems every national targets as required, through the
encounter of a person with dementia
91. Develop a core set of indicators in Global Dementia Observatory.
with the health and social care system. two years by 2025.1
line with this action plan and provide
PROPOSED ACTIONS FOR MEMBER STATES PROPOSED ACTIONS FOR INTERNATIONAL,
87. Develop, implement and improve, access to health and social care REGIONAL AND NATIONAL PARTNERS
as needed, national surveillance and data and map available services and
monitoring systems, including registers resources at national and regional levels 93. Provide support to Member States and dementia, carers and families; and enable
that are integrated into existing in order to improve service delivery and the Secretariat in developing tools and an assessment of trends over time.
health information systems, in order coverage across the care continuum strengthening capacity for surveillance
to improve availability of high-quality, from prevention through risk reduction and information systems that: capture 94. Advocate the involvement of people
multisectoral data on dementia. Enable to the end of life. 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.
1. The global target indicator and means of verification are provided in the Appendix.
30 31Action area 7:
PROPOSED ACTIONS FOR MEMBER STATES
Dementia research
and innovation
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
95. If the incidence of dementia is to be agenda, will increase the likelihood of 102. Foster the development of
gaps in evidence to support policy or
reduced and the lives of people with effective progress globally towards technological innovations that, in terms
practice. Strengthen research capacity
dementia are to be improved, research better prevention, diagnosis, treatment of design and evaluation, respond to
for academic collaborations on national
and innovation are crucial, as is their and care for people with dementia. the physical, psychological and social
priorities for research into dementia
translation into daily practice. It is needs of people with dementia, their
97. There is a growing interest in, and call for, by engaging relevant stakeholders,
important not only that funding and carers or people at risk of developing
the use of innovative health technologies including people with dementia.
appropriate infrastructures for dementia dementia; these innovations include
in prevention, risk reduction, early Relevant steps may include: improving
research and innovation are available but are not limited to diagnosis,
diagnosis, treatment, care and support research infrastructure for dementia and
but also that mechanisms are in place disease monitoring and assessment,
relating to dementia. These innovations related fields, enhancing competence
that assist appropriate recruitment of assistive technologies, pharmaceuticals
aim to improve knowledge, skills and of researchers to conduct high-quality
people with dementia, their families and and new models of care or
coping mechanisms in order to facilitate research, and establishing centres of
carers into research studies. Research forecasting/modelling techniques.
and support the daily lives of people excellence for research into dementia.
and development costs are higher for
dementia than other therapeutic areas, with dementia and their carers while
101. Increase investment in dementia 103. Following the national ethical
because of lower success rates, longer meeting, in particular, identified needs in
research and innovative health requirements for research, promote
development times, and low recruitment an evidence-based and age-, gender- and
technologies and improve research equitable opportunities and access
rates into trials; this disproportion culturally-sensitive manner.
governance as an integral component for people with dementia and their
discourages investment in this area. of the national response to dementia. carers to be part of clinical and social
98. Rationale. The successful implementation
Research is needed to find a cure In particular, allocate budgets to research that concerns them.
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 ACTIONS FOR THE SECRETARIAT
96. Collaboration among and between with dementia.
104. Draw up a global research agenda research, capacities, methods
Member States and relevant and work together with Member and collaboration in the fields of
stakeholders, with a particular focus 99. Global target 7:
States to strengthen and build biomedical and social sciences
on strengthening North–South, South– The output of global research capacity in the area of dementia research, inter alia, through a network
South and triangular cooperation, to on dementia doubles between research by incorporating it in of WHO collaborating centres,
implement a global dementia research 2017 and 2025.1 national and subnational policies and countries from all WHO regions, and
plans relating to dementia. Advocate civil society organizations.
increased investment in dementia
1. The global target indicator and means of verification are provided in the Appendix.
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