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Towards a dementia- inclusive society WHO toolkit for dementia-friendly initiatives (DFIs)
Towards
a dementia
inclusive
society
WHO toolkit
for dementia-friendly
initiatives (DFIs)
TOWARDS A DEMENTIA INCLUSIVE SOCIETY
iii
Towards a dementia-inclusive society: WHO toolkit for dementia-friendly initiatives (DFIs)
ISBN 978-92-4-003153-1 (electronic version)
ISBN 978-92-4-003154-8 (print version)
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Design and layout by Van Cleef Emnacen
Contents
Foreword �������������������������������������������������������������������������������������������������������� vi Module B. Integrating dementia into a related initiative ������������������������������� 48
Acknowledgements ��������������������������������������������������������������������������������������� vii B.1. Identify a joint vision based on needs 49
Abbreviations�������������������������������������������������������������������������������������������������� ix B.2. Translate the vision into focus areas and expected outcomes 51
Glossary����������������������������������������������������������������������������������������������������������� x B.3. Plan and implement activities to achieve the joint vision 51
Executive summary ������������������������������������������������������������������������������������� xvii B.4. Identify and manage risks and resources 53
About this toolkit���������������������������������������������������������������������������������������������1
Module C. Monitoring and evaluation 62
Purpose1
C.1. Identify the relevant type of evaluation 63
Structure of the toolkit 2
C.2. Develop a logic model 66
Audience2
Module D. Scaling an existing initiative 77
PART 1: Background Information ���������������������������������������������������������������������3
D.1. Assess the DFI that is to be scaled 78
Introduction�����������������������������������������������������������������������������������������������������4
D.2. Identify the type of scale-up 81
WHO mandate and other global commitments 5
D.3. Identify a scale-up vision, focus areas and expected outcomes 83
Dementia and human rights 6
D.4. Plan and implement activities to achieve the scale-up vision 83
Local grass-root initiatives to address stigma 8
D.5. Identify and manage risks and resource needs 84
DFI Framework����������������������������������������������������������������������������������������������� 10 Concluding remarks 93
Vision and key principles of dementia inclusiveness 10 Annexes��������������������������������������������������������������������������������������������������������� 94
Primary focus of dementia-inclusive societies 20 Annex 1. Timeline of international human rights laws, treaties and conventions 94
Annex 2. Role of countries under the UN CRPD 95
Annex 3. Sustainable Development Goals (SDGs) with relevance to
PART 2: Implementation and evaluation��������������������������������������������������������� 31
dementia-friendly initiatives (3) 96
Before you get started ��������������������������������������������������������������������������������� 32
Annex 4. Global consultation on dementia-friendly initiatives 97
Module A. Starting a new initiative ��������������������������������������������������������������� 34
Annex 5. Promoting dementia-inclusive communities: 98
A.1. Identify a common vision 34
A strategic communications toolkit (WHO WPRO) 98
A.2. Translate the vision into primary focus areas 36
A.3. Plan and implement activities to achieve the vision 39
References����������������������������������������������������������������������������������������������������� 99
A.4. Identify and manage risks and resource needs 40
iv v
Foreword
Foreword
An estimated 50 million people live with specifically aims to improve communities’
dementia worldwide, 60% of whom in understanding of dementia and create
low- and middle-income countries. With dementia-inclusive societies where people
approximately 10 million people diagnosed with dementia can live meaningfully, safely
with dementia every year, dementia is and with dignity. Understanding the unique
projected to affect 152 million by 2050. and multifaceted needs of people with
Dementia has a profound impact on every dementia and their carers is particularly
aspect of a person’s life and there continues important within the context of COVID-19.
to be much stigma and discrimination against
people with dementia. Stigma exacerbates WHO developed Towards a dementia-
the already significant psychological, social, inclusive society: WHO toolkit for dementia-
emotional and financial impacts of the friendly initiatives to support individuals,
disease - effects that have been amplified communities and countries in empowering
in light of the ongoing COVID-19 pandemic. people with dementia to remain in, and be
Stigma also increases the likelihood of a significant part of, their community. The
human rights violations in communities toolkit’s person-centered, rights-based
where people with dementia live. approach is grounded in international
commitments such as the United Nations
To address dementia as a global challenge, Convention on the Rights of Persons with
the Seventieth World Health Assembly Disabilities (UN CRPD), the 2030 Agenda
adopted the Global Action Plan on the for Sustainable Development and its
Public Health Response to Dementia 2017- Sustainable Development Goals (SDGs) and
2025 (1) in May 2017. The action plan Universal Health Coverage (UHC) (2)(3)(4).
represents an international commitment The toolkit can be easily and effectively
to improving the lives of people with implemented by communities worldwide to
dementia, their carers, and families. It raise awareness of dementia and improve
includes seven action areas: dementia as a the lives of those affected by the disease.
public health priority; dementia awareness
and friendliness; dementia risk reduction;
dementia treatment, care, and support; Dévora Kestel
support for dementia carers; information Director Mental Health and Substance Use
systems for dementia; and dementia research Universal Health Coverage/Communicable
and innovation. The action area focusing and Noncommunicable Diseases,
on dementia awareness and friendliness World Health Organization
vi
TOWARDS A DEMENTIA-INCLUSIVE SOCIETY Acknowledgements
Acknowledgements Australia), Paola Barbarino (Alzheimer (Alzheimer Italia), Glenn Rees (Alzheimer
Disease International), Emer Begley Disease International), Helen Rochford-
(Department of Health, Ireland), Alain Brennan (Global Dementia Ambassador),
Bérard (Fondation Médéric Alzheimer), Chris Russell (University of Worcester),
Vision and conceptualization WHO headquarters Olivier Boucher (Fondation Médéric Sanjib Saha (Fellow, Global Brain Health
Towards a dementia-inclusive society: WHO Institute), Dvera Saxton (Fellow, Global
Alzheimer), Marie-Antoinette Castel-
toolkit for dementia-friendly initiatives was At headquarters, a team comprising staff Brain Health Institute), Sherii Sherban
Tallet (Fondation Médéric Alzheimer),
developed under the overall guidance and members, consultants and interns provided (Carewell Service Southwest), Fei Sun
Emmanuel Chima (Michigan State
conceptualization of Tarun Dua and Dévora technical guidance and support to the project. (Michigan State University), Kate Swaffer
University), Mairead Creed (Department
Kestel, WHO Department of Mental Health They included: Ken Carswell, Nathalie Drew, (Dementia Alliance International), Gavin
of Health, Ireland), Sarah D’Alessio
and Substance Use. Pramudie Gunaratne, Jennifer Hall, Angela Terry (Alzheimer’s Society UK), Anke van
(Fellow, Global Brain Health Institute),
Herscheid, Alana Office, Mark van Ommeren, der Made (Dementie Vriendeijk), Jurn
Chao Fei (Jinmei Social Service, Shanghai
Project coordination and Alison Schafer. Verschraeger (Center of Expertise on
China), Daniela Fernandez Gomora
The team that coordinated the development Dementia Flanders), and Stefanija Zlobec
(Alzheimer’s Society United Kingdom),
of Towards a dementia-inclusive society: WHO regional Fiona Foley (Department of Health, (Spomincica - Alzheimer Slovenija).
WHO toolkit for dementia-friendly initiatives and country offices Ireland), James Fuccione (Massachusetts
comprised of: Katrin Seeher, Neerja Chowdhary, Global consultation
Healthy Aging Collaborative), Terry Gavin
Stéfanie Fréel, Maggie Haertsch, and Michal Key collaborators from the WHO regional participants
(Alzheimer’s Society United Kingdom),
Herz. and country offices who reviewed the toolkit
Jean Georges (Alzheimer Europe),
and provided valuable feedback included: We are grateful to the participants of
Meredith Hanley (Dementia Friendly
Steering group members Nazneen Anwar, Regional Office for South the global consultation who informed the
America), Katharina Heimerl (University
The development of the toolkit was East Asia; Florence Baingana, Regional development of the toolkit.
Vienna, Austria), Irina Ilieva (Alzheimer
informed by a steering group comprising: Office for Africa; Andrea Bruni, Regional
Bulgaria), Kevin Jameson (Dementia
the Department of Health, United Kingdom; Office for the Americas; Claudina Cayetano,
Society of America), Wambui Karanja
the Ministry of Health, Labour and Welfare, Regional Office for the Americas; Daniel Case study and commentary
(Fellow, Global Brain Health Institute),
Japan; Alzheimer’s Disease International; Chisholm, Regional Office for Europe; Khalid contributions
Paul-Ariel Kenigsberg (Fondation Médéric
Alzheimer Society United Kingdom; Dementia Saeed, Regional Office for the Eastern
Alzheimer), Irina Kinchin (Fellow,
Alliance International. Mediterranean; Elena Shevkun, Regional The following individuals prepared case
Global Brain Health Institute), Osman
Office for Europe; Steven Shongwe, Regional studies, which bring life to the document
Kucuk (Center for Dementia Sarajevo),
Technical contributions and review Office for Africa; and Martin Vandendyck, and tell powerful stories of how communities
Vincent Lacey (Department of Health,
Valuable materials, help and guidance Regional Office for the Western Pacific. can move towards a dementia-inclusive
Ireland), Xiaofu Lai (CHJ Lezhi, Beijing
was received from technical staff at WHO society:
China), Ong Lai Tin (Ministry of Health,
headquarters, WHO regional and country Expert advisers, reviewers Singapore), Eci Lin (Forget Me Not Café,
offices and many international experts and and case study authors China), Amy Little (Alzheimer’s Society Stefanie Auer, Jess Baker, Chao Fei, Daniela
technical reviewers. These contributions Fernandez Gomora, James Fuccione,
UK), Amy McColgan (Alzheimer’s Society
have been vital to the development of the WHO gratefully acknowledges the Meredith Hanley, Katharina Heimerl, Ivana
UK), Mary Manning (Ireland’s Health
toolkit. following individuals for contributing Kancheva, Wambui Karanja, Xiaofu Lai,
Services), Julie Meerveld (Alzheimer
case studies, commentaries, their Eci Lin, Amy Little, Mary McColgan, Julie
Nederland), Cheyenne Mize (Fellow,
expert opinion and technical input to the Meerveld, Mario Possenti, Petra Plunger,
Global Brain Health Institute), Damian
development of the toolkit: Glenn Rees, Helen Rochford Brennan, Chris
Murphy (Innovations in Dementia CIC),
Wies Arts (Dementie Vriendeijk), Stefanie Russell, Sherii Sherban, Gavin Terry, Ong
Ieva Petkute (Fellow, Global Brain Health
Auer (Danube University Krems), Jess Lay Tin, Stefanija Zlobec.
Institute), Petra Plunger (Alpen-Adria-
Baker (University of New South Wales
University, Austria), Mario Possenti
vii viii
TOWARDS A DEMENTIA-INCLUSIVE SOCIETY Glossary
Administrative support
Glossary
We are thankful to Grazia Motturi,
Jacqueline Lashley, Cecilia Ophelia Riano Activity: For the purpose of this toolkit, an Convention: A formal agreement between
and Diana Suzuki for the support provided activity refers to any action that promotes country leaders, politicians, and states on
in developing and publishing the toolkit. lasting change to the social and/or physical common matters, e.g. human rights.
environment to help build dementia-
Production team inclusive societies. Coordination: Refers to the guidance and
We gratefully acknowledge the team direction provided through a governance
responsible for the various contributions Carer/caregiver: A person who provides mechanism, such as a coordinating team,
leading to the final production of the toolkit. care and support to a person with dementia. in implementing, integrating, evaluating
Such support may include: and/or scaling-up a DFI.
Editing: Dorothy Lusweti, Switzerland.
zzHelping with self-care, household Coordinating team: A team of individuals,
Financial support tasks, mobility, social participation and organizations and/or partners responsible
The development of this toolkit was meaningful activities. for the oversight, management and
supported by the Department of Health of zzOffering information, advice and coordination involved in developing a new
the United Kingdom of Great Britain and emotional support, as well as DFI, integrating dementia into an existing
Northern Ireland. engaging in advocacy, providing initiative, monitoring and evaluating a DFI
support for decision-making and peer and/or scaling-up a DFI.
support, and helping with advance
care planning. Dementia: Dementia is a syndrome
zzOffering respite services. due to disease of the brain – usually of a
Abbreviations zzEngaging in activities to foster
intrinsic capacity.
chronic or progressive nature – in which
there is disturbance of multiple higher
cortical functions, including memory,
CRPD Convention on the Rights of Persons with Disabilities (United Nations) Carers/caregivers may include relatives or thinking, orientation, comprehension,
extended family members as well as close calculation, learning capacity, language and
DFI dementia-friendly initiative friends, neighbours and paid lay persons or judgement. Consciousness is not clouded.
volunteers. The impairments of cognitive function are
LMICs low- and middle-income countries commonly accompanied, and occasionally
Civil society: Refers to the wide array preceded, by deterioration in emotional
M&E monitoring and evaluation of nongovernmental and not-for-profit control, social behaviour, or motivation.
organizations that have a presence in public This syndrome occurs in Alzheimer’s
NCDs noncommunicable diseases life, expressing the interests and values of disease, in cerebrovascular disease, and
their members or others, based on ethical, in other conditions primarily or secondarily
NGO nongovernmental organization cultural, political, scientific, religious or affecting the brain, such as motor neurone
philanthropic considerations. Civil society diseases, Prion disease, Parkinson’s disease
SDGs Sustainable Development Goals is the “third” sector of society, along with and related disorders, Huntington’s disease,
government and business (31). spinocerebellar ataxia, and spinal muscular
UN United Nations atrophy. The following International
Community: A group of people unified by Classification of Diseases (ICD) codes relate to
WHO World Health Organization common interests or characteristics living dementia – ICD-9: 290, 330–331; ICD-9 BTO:
together within a larger society. B222, B210; ICD-10: F01, F02, F03, G30–G31.
ix x
TOWARDS A DEMENTIA-INCLUSIVE SOCIETY Glossary
Dementia-friendly initiative (DFI): The Evaluation: The process of tracking through a variety of activities that intend to Impact: The last step in a logic model;
activities being undertaken to make society key outcomes and impacts related to improve health. in this context, refers to the achievement
more inclusive of people with dementia. the different elements of the DFI and of, or movement towards, the DFI’s stated
its associated activities, and assessing Health care provider: A professional vision, following an action or sequence
Dementia-inclusive society: A society in whether the vision and expected providing health care to people, including of actions taken as part of the DFI, or
which people with dementia and their carers outcomes are being achieved. Information health advice and disease prevention, associated activities.
fully participate in society and have a place gathered through an evaluation can be promotion and treatment; and who
in it. It is a society where they enjoy respect, used to guide future planning, budgeting implements care, treatment and referral Implementation: The process of putting
freedom, dignity, equality, accessibility and scaling activities. plans. They have completed formal training a decision or plan into effect.
and quality of life. It is one where they are in medicine, or a related health care
empowered to live independently, free Evaluation indicators: Help determine discipline, at a recognized, university-level Input: The first step in a logic model;
from stigma, discrimination, exploitation, what information and data to collect so as school for a diploma or degree, or have refers to activities, sets of interventions
violence or abuse. to answer the evaluation questions (see acquired extensive on-the-job training. and/or resources that produce a series of
Evaluation question). Evaluation indicators results (i.e. outputs and outcomes).
Disability: The UN CRPD recognizes disability will vary based on the type of evaluation Human resources: see Resources.
as “an evolving concept and that disability selected. Key principles: A set of precepts or
results from the interaction between persons Human rights of people with dementia: values that guide the creation of a
with impairments and attitudinal and Evaluation question: Specifies what Action related to the following issues to dementia-inclusive society, including the
environmental barriers that hinders their will be measured through the evaluation. ensure the protection of a person’s human development of a new DFI, integration
full and effective participation in society on Evaluation questions vary based on the rights: least restrictive care, informed of dementia into an existing initiative,
an equal basis with others” (2) type of evaluation selected. consent to treatment, confidentiality, monitoring and evaluating a DFI and/
avoidance of restraint and seclusion or scaling-up a DFI. For the purpose of
Discrimination: Unfair treatment or Financial resources: see Resources. when possible, voluntary and involuntary this toolkit, there are four key principles:
negative behaviour towards a person or admission and treatment procedures, participation, collaboration, coordination
group of people. The UN CRPD defines Habilitation: Refers to enabling people with discharge procedures, complaints and and sustainability.
discrimination on the basis of disability as disability to attain, keep or improve skills appeals processes, protection from abuse
“any distinction, exclusion or restriction and functioning for daily living; services by staff, and protection of user property. In Law/laws: A rule or set of rules, which have
on the basis of disability which has the include physical, occupational and speech- the context of dementia, this means human been enacted by the governing bodies in
purpose or effect of impairing or nullifying language therapy, pain management rights for people with dementia include a a country. For the purpose of this toolkit,
the recognition, enjoyment or exercise, on treatments, audiology and other services comprehensive approach including the full laws refer to rules that apply to people
an equal basis with others, of all human offered in hospital and outpatient settings spectrum of civil, political, economic, social with dementia, persons with disabilities,
rights and fundamental freedoms in the (RI Global, see: http://www.riglobal.org/ and cultural rights. older people and/or the population as a
political, economic, social, cultural, civil projects/habilitation-rehabilitation/). whole and typically focus on issues such
or any other field. It includes all forms of Human rights violation: When a country as civil and human rights protection.
discrimination, including denial of reasonable Health (care) system: Refers to: a) all fails in its obligations to ensure that the
accommodation.”(2) the activities intended to promote, restore economic, social and cultural rights of Leadership: In this context, refers to
and/or maintain health; and b) the people, people, including people with dementia, the action of leading a group of people
Engagement: In this context, the process institutions and resources, arranged are enjoyed without discrimination or in or organizations through the process
of consulting with, and gathering feedback together in accordance with established its obligation to respect, protect and fulfil of developing a new DFI, integrating
and opinions from, people with dementia policies to improve the health of the them. Often a violation of one of the rights dementia into an existing initiative,
and other partners and applying this input population they serve, while responding is linked to a violation of other rights (10). monitoring and evaluating a DFI and/or
throughout all phases of the DFI. to people’s legitimate expectations and scaling-up a DFI and associated activities.
protecting them against the cost of ill-health In the case of this toolkit, the leadership
xi xii
TOWARDS A DEMENTIA-INCLUSIVE SOCIETY Glossary
is likely community-based but may also be the DFI reflects the complex needs and Examples include charities, missions, faith- Primary focus area: Changes required
political, administrative, academic and/or preferences of people with dementia, their based organizations, patient and consumer to create a society that is more inclusive
clinical in nature. carers and families, leading to a shared, organizations, etc. of people living with dementia; in this case
mutually beneficial outcome. refers to changes to the social environment,
Legal capacity: The formal ability to hold Outcome: In this context, the result or physical environment or both.
and exercise rights and duties under the law Myth: A widely held but false belief or consequence of an action or sequence
(32). Everyone has a right to legal capacity; idea that is not based on proven facts or of actions taken as part of the DFI, or Priority: An issue, or set of issues, that
the UN CRPD safeguards the legal capacity evidence. associated activities, which move the DFI takes precedence over others based on
of persons with disability, including people towards achieving its stated vision (i.e. common agreement amongst partners,
with dementia. Noncommunicable diseases (NCDs): impact). including people with dementia, their carers
Diseases not passed from person to person. and families, and based on evidence.
Logic model: A causally linked step-wise They are of long duration and generally slow Output: In this context, what is produced
framework that identifies how resources progression. The four main types of NCDs are as a result or consequence of an action or Private sector: The part of a country’s
(or inputs) make it possible to carry out DFI cardiovascular diseases (e.g. heart attack sequence of actions taken as part of the economy that consists of industries and
activities. These in turn produce a series and stroke), cancers, chronic respiratory DFI, or associated activities, which move commercial, for-profit companies that are
of results (or outputs and outcomes) and diseases (e.g. chronic obstructed pulmonary the DFI towards achieving its stated vision not owned or controlled by the government.
move the DFI towards achieving its stated disease or asthma) and diabetes. Dementia (i.e. impact).
vision (or impact). represents an NCD. Ownership: Taking responsibility for an Quality of life: Individual’s perception
idea or problem, in this context the DFI. of their position in life in the context of
Monitoring: The ongoing action of Nongovernmental organizations (NGOs): the culture and value systems in which
collecting information about all project/ NGOs are created and operated to Participation: Refers to the meaningful they live and in relation to their goals,
programme activities. In this context, contribute to the public’s benefit. The involvement of people with dementia, their expectations, standards and concerns.
it determines whether the DFI, and its ways that NGOs pursue that goal vary carers and families in all stages of the It is a broad ranging concept affected in
associated activities, are being implemented widely and they usually work on a not- development and management of the DFI. a complex way by the person’s physical
as intended and helps individuals identify for-profit basis. They can be organized Participation is key to adopting a human health, psychological state, personal
and solve problems quickly. on a local, national or international level. rights-based, person-centred approach. beliefs, social relationships and their
Task-oriented and driven by people with a relationship to salient features of their
Monitoring and evaluation (M&E): common interest, they perform a variety Partner: An individual, group of individuals environment.
A process that provides information on of service and humanitarian functions. or an organization that work together to
what an initiative is doing, how well it is Examples include charities, missions, faith- achieve a common vision, impact or interest, Rationale: In this context, a stated reason
performing and whether it is achieving its based organizations, patient and consumer including the development of a new DFI, justifying the need for developing a new
vision and expected outcomes. organizations, etc. integration of dementia into an existing DFI, integrating dementia into an existing
initiative, monitoring and evaluation of a DFI initiative, monitoring and evaluating a
Multisectoral: Involving individuals, Not-for-profit organization: Refers to and/or scaling-up of a DFI, the human rights DFI and/or scaling-up a DFI, and why
agencies and/or organizations from the organizations that are created and operated of people with dementia and/or dementia action to raise dementia awareness and
different sectors of society, including to contribute to the public’s benefit and awareness and understanding. understanding is required.
governments, NGOs, academia, and civil do not seek to make a profit. The ways
society working, within and beyond the that not-for-profit organization pursue that Physical environment: Refers to the Rehabilitation: Refers to regaining skills,
health sector. goal vary widely and can be organized immediate physical surroundings, including abilities or knowledge lost or compromised as
on a local, national or international level. built infrastructure and industrial and a result of acquiring a disability or due to a
Multisectoral collaboration: Refers to the Task-oriented and driven by people with a occupational structures, such as roads, sidewalks, change in one’s disability or circumstances.
involvement of multiple sectors, partners, common interest, they perform a variety doorways and entryways, businesses, parks,
and levels of government to ensure that of service and humanitarian functions. libraries and other public spaces.
xiii xiv
TOWARDS A DEMENTIA-INCLUSIVE SOCIETY Glossary
Rehabilitation encompasses a wide range impairment. They provide health advice attached to dementia can lead to social Universal design: The design of products,
of activities including rehabilitative medical to patients and families; monitor patients’ exclusion, abuse and discrimination. Stigma environments, programmes and services
care, physical, psychological, speech, and conditions; and implement care, treatment can worsen the person’s mental and usable by all people, to the greatest extent
occupational therapy and support services and referral plans usually established physical health. possible, without that need for adaptation
(33)(34). by medical, nursing and other health or specialized design. Universal design does
professionals. They have completed Sustainability: In this context, refers to the not exclude assistive devices for particular
Resources: Unless otherwise specified, formal training in nursing at a recognized, DFI, an/or its associated activities, having groups of persons with disabilities where
the human and financial resources university-level school for a diploma or a lasting impact over time, as opposed to this is needed (13).
required to develop a new DFI, integrate degree, or have acquired extensive on-the- only yielding one-time outcomes.
dementia into an existing initiative, job training. United Nations Convention on the
monitor and evaluate a DFI and/or scale- Sustainable Development Goals (SDGs): Rights of Persons with Disability (UN
up a DFI. Human resources refer to the Social costs: In this context, the direct and The 17 goals adopted by world leaders on CRPD): The UN CRPD is a human rights
number of staff needed and the skill mix indirect costs to a group of individuals, or 15 September 2015 as part of the 2030 agreement adopted by 82 countries in
required. In the context of this toolkit, it society as a whole, resulting from the DFI Agenda for Sustainable Development. The 2006. It adopts a broad categorization of
may refer to community (care) workers, and associated activities. SDGs came into force on 1 January 2016 persons with disabilities and reaffirms that
advocacy, policy, programme, coordination, and include specific targets to be achieved all persons with all types of disabilities,
management and/or support staff, Social environment: The social environment over the next 15 years (3). including people with dementia, must
researchers and academics, social can be defined as social relationships and enjoy all human rights and fundamental
and health care providers such as cultural contexts within which a person, Target groups: The individuals or groups freedoms. It clarifies and qualifies how
generalist and specialized physicians, or group of people, live(s). Components of individuals, targeted by the DFI and its all categories of rights apply to persons
nurses, pharmacists, social workers, of the social environment include, but activities. Target groups may involve people with disabilities, including people with
personal support workers, community are not limited to: social and economic with dementia, their carers and/or families, dementia, and identifies areas where
health workers, amongst others. Financial processes, social and health services, social the general population, health and/or adaptations have to be made for persons
resources refer to the funds (money) that inequality, cultural practices, the arts, social care providers, emergency response with disabilities to effectively exercise their
are budgeted and allocated to support religious institutions and practices, beliefs providers, government policy-makers and rights and areas where their rights have
the development of a new DFI, integration about place and community, wealth, power politicians, financial, legal, commercial/ been violated, and where protection of
of dementia into an existing initiative, relations, government and labour markets retail sectors, and/or transportation staff, rights must be reinforced.(2)
monitoring and evaluation of a DFI and/or (11). schoolchildren, students, teachers and/or
scaling-up of a DFI. volunteers. Vision: A broad, evidence-based statement
Society: An enduring and cooperating of a desired future state that will be
Risk: In this context, the result of an activity social group of people who have developed Timeframe: The period of time by when an reached after multiple years of successful
or group of activities that jeopardize the organized patterns of relationships and action, project, programme or plan should implementation.
achievement of the DFI’s stated vision. behaviours through interaction with one be completed; in this case, the period of
another. time by when the DFI’s vision should be
Social care: Assistance with activities achieved.
of daily living (such as personal care, Stereotype: A set idea or image that people
maintaining the home); synonym – home have of what someone or something is like, Treaty: A formal contract or agreement
and community care. especially an idea that is wrong. between two or more political authorities
(e.g. countries or sovereigns), formally
Social care provider: A professional Stigma: A distinguishing mark establishing signed by representatives and confirmed by
providing basic nursing and personal care a demarcation between the stigmatized the lawmaking authority of the state.
to people due to the effects of ageing, person and others attributing negative
illness, injury, or other physical or mental characteristics to this person. The stigma
xv xviTOWARDS A DEMENTIA-INCLUSIVE SOCIETY
Executive summary
Dementia affects every aspect of a person’s and improve understanding of dementia A look inside the toolkit
life. In the early stages a person may by engaging communities and helping
experience loss of memory that causes them assume ownership of this endeavor. The toolkit supports individuals working in The exercises included in the toolkit may
them to forget how to perform simple day- This is the first step in combating stigma. communities who have little to no experience be most effective when used to facilitate
to-day tasks, such as cooking or cleaning. Dementia awareness and friendliness feature in programme planning, implementation, group discussions amongst team members
As the illness progresses, the person may prominently in the Global Action Plan on the management, and/or evaluation, to create and partners seeking to create dementia-
become more dependent on others. Public Health Response to Dementia 2017- dementia-inclusive societies. The toolkit is inclusive societies.
2025, adopted in May 2017 by the Seventieth divided into two parts:
Yet, as challenging as it may be to live with World Health Assembly. WHO is committed
dementia, stigma and discrimination make to helping individuals and communities zz Part I contains introductory information
it worse. Stigma heightens the already empower people with dementia to remain in, on dementia, and includes a theoretical
significant psychological, social, emotional and be a significant part of, society. This is framework.
and financial impacts that dementia has reflected in the global dementia action plan’s
on individuals, their carers, families and global target 2.2. which aims to establish zz Part II includes four practical
communities. It also exposes people at least one dementia-friendly initiative modules, each featuring a series
with dementia to potential human rights to foster a dementia-inclusive society in of practical steps and exercises,
violations in their own communities. It is 50% of countries by 2025. WHO developed focusing on: starting a new dementia-
not uncommon for people with dementia to Towards a dementia-inclusive society: WHO friendly initiative (DFI), integrating
experience physical and emotional abuse, toolkit for dementia-friendly initiatives to dementia into an existing initiative,
social isolation or loss of dignity. Supportive help communities and countries achieve monitoring and evaluating a DFI,
environments and societies are crucial in this target. The toolkit will also support the and scaling-up a DFI. The modules
helping overcome stigma and discrimination implementation of other initiatives such as can be used together or separately,
against people with dementia. the Decade of Healthy Ageing 2020-2030. and can be adapted to suit local
There is a need to raise public awareness needs and settings.
xvii xviiiWhat is dementia dementia at supermarket queues,
SUCCESS
FACTORS
Sustainability
inclusiveness and establishing mechanisms to enable
friendliness? people with dementia to vote in elections
and teaching children about dementia.
MONITORING & EVALUATION
Around the world, local communities are
planners
INPUTS
The framework
City
Bus & taxi
coming together to create more inclusive
drivers
Community
societies and supportive environments.
workers
These are fundamental in fighting stigma The (see Figure 1) provides a step-by-step
Traditional
accessibility
and discrimination and ensuring that template for carrying out, integrating,
healers
OUTPUTS
barriers/
improve
Remove
transportation
people with dementia and their families evaluating and scaling initiatives that
First responders,
Enhance
system
are adaptable to local contexts, cultural
police force
are meaningfully included in society.
enabling housing
affordable &
Leadership
Different terms have been used to refer norms, community practices and
Improve
OUTCOMES
to these efforts, including dementia- population needs. It outlines the different
Improve
safety
capable communities, memory-friendly components of the framework and
Environment
Shop owners
Physical
communities, living well with dementia in defines key principles and actors such
the community, sustainable environments as key partners and target groups. The
Use of enabling
Bank employees
technology
for people living with dementia, dementia- framework identifies the fundamental
discrimination and fully enjoy participation,
IMPACT
inclusion, empowerment, respect, dignity,
is one where people with dementia and
their careers experience no stigma and
independent living, and quality of life.
sensitive living environment, and a society process and steps that will guide the
inclusive society
equality, freedom, accessibility,
conscientious of, and friendly towards, implementation, evaluation and/or
A dementia
neurocognitive disease. scaling of DFIs in subsequent sections of
the toolkit.
For ease of communication in this
Dementia-friendly
businesses and
document we use the term, “dementia-
Pharmacists
services
inclusive society” to refer to the kind of
Vision
Hospitality staff
society to strive for, where everyone,
Environment
including people with dementia, has a
Social
place. By “dementia-friendly initiatives”
we mean the activities being undertaken
participation
Civic/socio-
Primary
Collaboration
Focus
cultural
to make society more inclusive of people
Public civil
servants
with dementia. Examples of DFIs include,
Training/
capacity
but are by no means limited to, showing
building
actions include:
campaigns
Activities/
Awareness
Implementation & scaling
activities and
45-second educational films about
Examples of
actions
raising
Religious
leaders
children
School
Volunteers
Examples of target
population
groups may
General
groups
include:
Target
Participation
principles
Key
FIGURE 1 WHO’S DEMENTIA-INCLUSIVE SOCIETIES FRAMEWORK
xxTOWARDS A DEMENTIA-INCLUSIVE SOCIETY Executive Summary
Module A: Module B: Module C: Module D:
developing a new DFI integrating dementia monitoring and scaling up DFIs
into an existing initiative evaluation (M&E)
Module A offers practical guidance and Scaling up an existing DFI is an effective way
tools to start a new DFI. Firstly, Module A Module B offers practical guidance and M&E ensures that every step of the DFI of spreading good practices and lessons
uses a series of guided steps and exercises tools to integrate dementia into an existing, implementation has been achieved. Module C learned from one geographical location
to help users identify stakeholders and initiative. Working with a series of guided offers a series of exercises and tools or target group to another. With the help
partners, as well as a coordination team steps and exercises, Module B firstly helps that enable users to decide what type of of practical tips, checklists and exercises,
that will oversee and manage the initiative. users identify stakeholders and partners, evaluation best suits their initiatives and Module D assists users in selecting a DFI
Secondly, it helps users gather the as well as a coordination team to oversee then develop a logic model. The logic model for scale-up, ensuring that it fulfils the four
information necessary to identify the most and manage the integration. Secondly, illustrates how resources (inputs) make it key principles (participation, collaboration,
pressing issues that the DFI will address and it helps users gather the information possible to carry out DFI activities, which in coordination and sustainability) included
to define a vision for the initiative. Thirdly, necessary to make an inventory of relevant turn produce results (outputs and outcomes) in the DFI framework. The module also
module A provides exercises on how to set existing initiatives. It also enables users and move the DFI towards achieving its helps users identify the appropriate type of
goals and outcome, to help users identify to pick the most pressing issues that they stated vision (impact). Module C also guides scale-up and develop a vision, focus areas
focus areas. Lastly, it guides users in will address by integrating dementia into users in formulating evaluation questions and goals. Finally, Module D helps users
translating goals and expected outcomes an existing initiative. Users together with and indicators. Evaluation questions plan and implement activities, including
into specific activities and developing a partners and stakeholders can then draw specify what the evaluation will measure. expanding DFIs to new locations, to achieve
risk- and resource-management plan. up their vision for the integration. Thirdly, Evaluation indicators on the other hand the vision, as well as develop a risk- and
Module B prepares users to jointly define specify what information and data to collect resource-management plan.
their goals and expected outcomes – in so as to answer the evaluation questions.
other words their focus areas. Fourthly,
users receive guidance to translate their
goals and expected outcomes into specific
activities so as to achieve the joint vision.
Lastly, users learn how to develop a risk-
and resource-management plan.
xxi xxiiTOWARDS A DEMENTIA-INCLUSIVE SOCIETY
About this toolkit
Thank you for your interest in WHO’s addition, six focus group discussions led by
Towards a dementia-inclusive society: WHO a steering group partner – Dementia Alliance
toolkit for dementia-friendly initiatives. We International (DAI) – made it possible to
hope that you find the material in this toolkit collect information about the needs of people
useful as you seek to promote dementia with dementia and their idea of a dementia-
inclusiveness and address stigma in your inclusive society.
community.
Dementia affects every aspect of a person’s Purpose
Conclusion
life, and stigma and discrimination make
it worse. Stigma heightens the already The purpose of the toolkit is to promote
With its solid theoretical basis, practical to the social and/or physical environment.
significant psychological, social, emotional lasting societal change and full inclusion of
guidance and exercises, the toolkit is a DFIs, therefore, need to work towards a
and financial impacts that dementia has people with dementia and their families in
valuable resource that will enhance the skills society that includes and empowers people
on individuals, their carers, families and society. More specifically, the toolkit:
and knowledge of individuals working within with dementia, as well as older people in
communities. It also exposes people
communities to build dementia-inclusive general and people with other disabilities,
with dementia to potential human rights zz presents a common framework that
societies. By providing M&E guidelines, the rather than one that segregates them. For
violations in their own communities. It is identifies key components of, and
toolkit fills a gap and helps build capacity as this reason, DFIs draw on the strengths
not uncommon for people with dementia to partners that need to be involved in
well as generate new evidence to support of people with dementia, their carers and
experience physical and emotional abuse, creating, dementia inclusiveness;
the implementation of DFIs. The toolkit is families, provided that appropriate support
social isolation or loss of dignity. There is a
person-centred, rights-based and focused is in place to enable them to participate
need to raise public awareness and improve zz provides guidance on how to use the
on raising public awareness of dementia. fully in society and the economy.
understanding of dementia by engaging framework to implement and scale
It will support communities in their efforts
communities and helping them assume up initiatives, as well as integrate
to achieve the vision of the Global Action
ownership of this endeavor. This is the first dementia into related initiatives,
Plan on the Public Health Response to
step in combating stigma and the main such as age-friendly, healthy and
Dementia 2017-2025. The specific goal of
purpose of the toolkit. barrier-free cities; and
DFIs is to help bring about lasting changes
The development of this toolkit was zz outlines steps to monitor progress
informed by an international steering group. in the initiatives’ implementation
Additionally, it drew on a synthesis of and evaluate their impact.
published and unpublished reports on DFIs
and extensive stakeholder consultations.
Civil society and government representatives
across all six WHO regions and country
income levels (high-, middle- and low-income
countries) contributed through interviews. In
xxiii 1TOWARDS A DEMENTIA-INCLUSIVE SOCIETY
Structure of the toolkit Audience
The toolkit is divided into two broad sections. The toolkit is geared towards individuals
with little to no experience in programme
Part I contains the theoretical background. planning, management, implementation
It includes information on dementia, human and/or evaluation. Intended audiences may
rights and global commitments. It also include:
provides a conceptual framework that can be
used to create dementia-inclusive societies zz members and/or leaders of local
and implement dementia-friendly initiatives communities, nongovernmental
(DFIs). organizations, consumer or patient
groups, and other civil society
Part II contains the practical steps organizations;
and exercises for developing a new
DFI, integrating dementia into an existing zz policy makers and planners at local,
initiative, evaluating DFIs, and scaling up regional and/or national levels;
DFIs. Individuals working at the community-
level can use these practical tools to facilitate zz health and social care providers
conversations related to creating dementia- and/or healers;
inclusive societies, including planning and
implementing activities to achieve this. Part zz researchers and academics;
II of the toolkit is intended to be used as a
facilitation tool in group settings, amongst zz the media;
relevant team members and partners.
zz business owners and/or staff.
PART 1:
Background information
PART 1:
Background information
PART 1: Background Information
2TOWARDS A DEMENTIA-INCLUSIVE SOCIETY Introduction
Introduction WHO mandate and other
global commitments
a shift from treating dementia as a purely
medical condition that leads to impairment and
dependence, to understanding it as an acquired
In May 2017, the Seventieth World Health progressive, cognitive and psychosocial disability.
“While the world waits for a cure for Dementia is a global challenge, currently
Assembly adopted the Global action plan on the The shift brings with it the need to empower
dementia, we need more communities and affecting approximately 50 million people
public health response to dementia 2017 – 2025 people with dementia to live their lives in a
cities to embrace and engage those living around the world (see Figure 2). Dementia
(3). The global dementia action plan represents manner that they choose and value. This does
with dementia instead of isolating and affects every aspect of a person’s life
an international commitment to improving the not merely refer to the individual’s physical and
excluding them.” as well as the lives of their family and
lives of people with dementia, their carers and mental capacity, but also to the physical and
social network. Unfortunately, dementia
families. At the same time it seeks to lessen social environments that they live in (4).
First WHO Ministerial Conference on Global Action remains shrouded in misconceptions,
the impact of dementia on them, as well as on
Against Dementia (1) false beliefs and lack of awareness (2).
communities and countries. The global dementia To accomplish this, the global dementia action
action plan’s vision is “a world in which dementia plan builds on strategic commitments and
is prevented and people with dementia and their initiatives carried out at international and
carers live well and receive the care and support national levels (see Figure 3). This includes,
they need to fulfil their potential with dignity, but is in no way limited to, the 2030 Agenda
respect, autonomy and equality” (3). for Sustainable Development and its 17
Sustainable Development Goals, Universal
The plan calls for an approach to dementia that Health Coverage and the Osaka Summit
focuses on human rights and people. There Declaration of the 2019 G20 Summit. Also
is a need to create, or improve awareness of included are other closely related strategies,
dementia. This will help educate society to better plans and initiatives concerning population
understand people affected by dementia, as ageing and endorsed by the World Health
well as their families and carers. This represents Assembly and the UN General Assembly.
FIGURE 3 RELEVANT STRATEGIC COMMITMENTS INITIATIVES
Comprehensive Global
mental health disability
action plan action plan
2013-2030 2014-2021
Global action
2030 Agenda plan on the public Global strategy
for Sustainable health response and plan of
Develoment to dementia action on
& Sustainable 2017-2025 ageing and
Development health 2016-
Goals 2020
FIGURE 2 GLOBAL DEMENTIA BURDEN IN NUMBERS
Global action plan
G20 Osaka for the prevention The Decade of
Summit 2019 and control of Healthy Ageing
noncommunicable 2020-2030
disease 2013-
2030
4TOWARDS A DEMENTIA-INCLUSIVE SOCIETY Introduction
Dementia and human rights
Commentary
There is a need to dispel myths and stereotypes One instrument that is particularly relevant Human rights and dementia-friendly movement
among the general population, as well as to people with dementia is the United Nations
health and social care professionals, (UN) Convention on the Rights of Persons
concerning dementia. Communicating accurate with Disabilities (CRPD) (6). The UN CRPD There are 37 references to human rights and the United Nations Convention
information about dementia and creating ensures among other things that persons with on the Rights of Persons with Disabilities in the global action plan on the public
supportive environments help put the disabilities, including those with dementia, health response to dementia 2017 – 2025. This is a welcome recognition by all
emphasis on the person rather than their have the right to: WHO Member States of the importance of human rights. But only if it translates
disability and impairment and are central into a better quality of life and better health services for people with dementia.
to combating stigma. Misconceptions about To achieve this people at all levels – national, regional and local – need to gain
zz equality and non-discrimination
people with dementia include for example a better understanding of what it means to walk in the shoes of people with
zz accessibility (to live independently and dementia.
perceiving it as a normal part of ageing, a
state of “craziness”, an act of God or fate, participate fully in all aspects of life)
associated with spirits or witchcraft. zz equal recognition, in terms of liberty Alzheimer’s Disease International (ADI) believes a social movement based
on dementia friendliness has the potential to help promote an everyday
and security, before the law
Negative stereotypes can lead someone to understanding of the practical means to protect the rights of people with dementia
zz live independently and be included and to assist them to access the services and enjoy the activities we all have a
unfairly judge another person and falsely
attribute negative characteristics to them, in the community right to, whether through major policy initiatives or local projects.
resulting in stigma. Stigma in turn may zz respect for privacy
cause discrimination and human rights The dementia friends initiatives in countries such as Japan, the United Kingdom
zz health
violations against people with dementia. and the Republic of Korea have reached millions of people who now have a better
zz habilitation and rehabilitation understanding of dementia. In some cases these individuals have gone on to
Some examples include coercive or forced
treatment or institutionalization, disregard zz participation in political and cultural involve themselves in their communities in volunteering or in dementia-friendly
for an individual’s legal capacity to make life, recreation, leisure and sport initiatives in their workplaces such as hospitals.
decisions, and depriving them of their dignity zz adequate living conditions and social
and autonomy. Violations of, or indifference The greater power of dementia friendliness is to inspire communities whether
protection. small or large and large organisations from health to corporations in key sectors
to, the rights of a person can have serious
health consequences or worsen poor health. such as banks, retail and insurance to address the issues of most concern to
The UN CRPD provides the foundation people with dementia and their care partners.
for identifying and eliminating barriers
International human rights agreements, also
to ensure that people with dementia can There is no one size fits all in developing dementia-friendly initiatives but there
known as human rights treaties or conventions,
live in their own communities and access is one immutable rule and that is that people with dementia should be involved
were developed to protect against human
their environment. The Annex provides from the outset.
rights violations and discrimination. These
information about the role and accountability
agreements affirm that all people are equally
of countries under the UN CRPD. Glenn Rees, Chair, ADI
entitled to their human rights without
discrimination, regardless of nationality, place
of residence, sex, national or ethnic origin,
skin colour, religion, language, or any other
status (5). See the Annex for a list of relevant
international human rights treaties.
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