ISO 25552:2022

INTERNATIONAL ISO
STANDARD 25552
First edition
2022-02
Ageing societies — Framework for
dementia-inclusive communities
Vieillissement de la population — Collectivités inclusives à l'égard des
personnes atteintes de démence
Reference number
ISO 25552:2022(E)
© ISO 2022

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ISO 25552:2022(E)
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© ISO 2022
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ISO 25552:2022(E)
Contents Page
Foreword .v
Introduction . vi
1 Scope . 1
2 Normative references . 1
3 Terms and definitions . 1
4 Development of a dementia-inclusive community . 6
4.1 General . 6
4.2 Systematic development process . 6
4.2.1 General . 6
4.2.2 Establish the general process . 7
4.3 Process elements of a dementia-inclusive community . 7
4.3.1 General . 7
4.3.2 Establish basic processes elements . 7
5 Guiding principles: outcomes and enabling factors . 8
5.1 General . 8
5.2 Key outcomes for persons with dementia and their carers . 9
5.2.1 General . 9
5.2.2 The individual right to choose and control . . 9
5.2.3 Accessibility and seamless integration . 9
5.2.4 Protection, safety, and safeguarding . 10
5.3 Enabling factors for a dementia-inclusive community . 10
5.3.1 General . 10
5.3.2 Responses to the life cycle of dementia . 10
5.3.3 Promotion of prevention strategies . 10
5.3.4 Competence and skills . 10
5.3.5 Sustainability . 11
5.3.6 Awareness . 11
5.3.7 Involvement, participation, and engagement . 11
5.3.8 Orientation and safety . . 11
5.3.9 Consideration of cultural norms . 11
6 Integrated community: creating a dementia-inclusive network .12
6.1 General .12
6.2 Integration & community network .12
6.2.1 General .12
6.2.2 Develop statement of purpose.12
6.2.3 Empower and support independent living .12
6.2.4 Support family life.12
6.2.5 Strengthen the social network . 13
6.2.6 Create an integrated, comprehensive, and phased health and social care
network . 14
6.2.7 Facilitate the design of workplaces that foster inclusion of persons with
dementia . 14
6.2.8 Emergency, safety, and protection . 14
6.2.9 Prevention of decline associated with dementia . 16
6.3 Persons with dementia and the informal care system . 16
6.3.1 General . 16
6.3.2 Supporting the informal care system . 16
6.3.3 Assessment of the carers . 16
6.3.4 Carer education, training, and coaching . 16
6.3.5 Self-care of the informal carers . 17
7 Action areas: community sectors working towards a dementia-inclusive community .18
7.1 General . 18
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ISO 25552:2022(E)
7.2 Action areas to address . 19
7.3 Integration between action areas . 19
7.4 Housing. 20
7.5 Public space . 20
7.6 Public transport . 20
7.7 Businesses, shops, financial institutions, products, and services . 20
7.8 Infrastructure .20
7.9 Leisure, recreation, and social activities . 20
7.10 Health and social care network . 21
7.11 Community, voluntary, faith groups and organizations . 21
7.12 Children, young people, and students . 21
7.13 Additional community sectors specific to the target community . 21
Annex A (informative) Action areas – Possible considerations when implementing
requirements .22
Annex B (informative) Possible further considerations.26
Annex C (informative) Stages of dementia and their implications on action areas of the
dementia-inclusive community .28
Annex D (informative) Other frameworks available for consideration .31
Annex E (informative) Implementation and progress evaluation checklist .32
Bibliography .37
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ISO 25552:2022(E)
Foreword
ISO (the International Organization for Standardization) is a worldwide federation of national standards
bodies (ISO member bodies). The work of preparing International Standards is normally carried out
through ISO technical committees. Each member body interested in a subject for which a technical
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ISO collaborates closely with the International Electrotechnical Commission (IEC) on all matters of
electrotechnical standardization.
The procedures used to develop this document and those intended for its further maintenance are
described in the ISO/IEC Directives, Part 1. In particular, the different approval criteria needed for the
different types of ISO documents should be noted. This document was drafted in accordance with the
editorial rules of the ISO/IEC Directives, Part 2 (see www.iso.org/directives).
Attention is drawn to the possibility that some of the elements of this document may be the subject of
patent rights. ISO shall not be held responsible for identifying any or all such patent rights. Details of
any patent rights identified during the development of the document will be in the Introduction and/or
on the ISO list of patent declarations received (see www.iso.org/patents).
Any trade name used in this document is information given for the convenience of users and does not
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www.iso.org/iso/foreword.html.
This document was prepared by Technical Committee ISO/TC 314, Ageing societies.
Any feedback or questions on this document should be directed to the user’s national standards body. A
complete listing of these bodies can be found at www.iso.org/members.html.
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ISO 25552:2022(E)
Introduction
0.1  Overview
This document was developed in response to a worldwide recognition that individuals, families, and
communities need to be more inclusive concerning persons with dementia. One goal of this document is
to engage and include persons with dementia and their families, and carers, in communities of all types,
sizes, and locations.
A dementia-inclusive community is one that is committed to working together to promote a better
understanding of dementia, reduce stigma, raise public awareness, and that facilitates social inclusion
and participation. By fostering a dementia-inclusive environment, communities can support persons
with dementia to be independent citizens, to be connected as much as they want to, to feel safe and
comfortable, and to be able to maximise their abilities and opportunities to participate.
0.2  Challenges and solutions
The worldwide rise in the number of persons with dementia has led to a growing need to increase
understanding of dementia in all societies. Stigmatisation and discrimination towards persons with
dementia sometimes occur within their community, creating barriers to diagnosis, treatment, and care,
which can significantly impact their quality of life. Many societies do not support persons with dementia
adequately and discourage them from exerting maximum control over their own lives. Additional
support to enable continued engagement for persons with dementia in daily activities and community
life, or to enable participation in decision-making in life, is often provided too late or not at all.
There is a need for education to address knowledge about what a dementia diagnosis can mean for
persons with dementia and those around them, including treatment and care options as key elements,
which would support development of a dementia-inclusive community within an integrated care
approach.
NOTE Integrated care can include primary care, all allied health professionals, e.g. occupational therapists,
social workers, physiotherapists, and dementia advisers.
The creation of supportive, safe, and inclusive communities for persons with dementia and those who
care for them is essential to maximizing everyone’s quality of life.
This document provides a comprehensive and interdisciplinary framework to develop a dementia-
inclusive community.
Moreover, this document recognizes that training, resources, experience, personnel availability, and
existing organizational structures are constraints that can have a direct impact on how quickly and
effectively a dementia-inclusive community can be planned and implemented. Therefore, this document
provides guidance on how to identify these constraints and address them as part of the process of
designing a dementia-inclusive community.
A person with dementia possibly experiences physical, sensory, cognitive, social, and communication
challenges and these need to be considered as part of a dementia-inclusive community. ISO/IEC Guide 71
provides information on various human capabilities and characteristics relevant to this document.
0.3  Expected outcomes and users of this document
Some of the expected outcomes from the use of this document include the following:
— improvement of the quality of life for anyone with dementia in a community;
— development of quality services for persons with dementia;
— ability to obtain recognition for establishing a dementia-inclusive community;
— optimization of the resources needed to develop a dementia-inclusive community;
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ISO 25552:2022(E)
— creation of new opportunities for all stakeholders in a dementia-inclusive community;
— more inclusive communities generally, where the participation of everybody, including persons
with dementia, is facilitated and encouraged.
This document is aimed towards, but not limited to, user categories such as the following:
— authorities having jurisdiction within communities;
— organizations, congregations, and community groups;
— individuals, carers, and families;
— persons of interest in education, research, and development;
— decision makers;
— planners, designers, and providers of products, services, the built environment, and the community
infrastructures.
0.4  Other requirements
There can exist other requirements, including regulatory requirements that can affect aspects of
a dementia-inclusive community as addressed in this document (e.g. revoking drivers’ licenses,
provisions, and regulations for the restriction of freedom and decision-making in later stages of
dementia). Consequently, those developing a dementia-inclusive community should identify potential
regulatory, health and other requirements that can be in conflict with a dementia-inclusive community
and discuss how these conflicts can be resolved or mitigated.
0.5  Approach and structure of this document
The challenges and solutions outlined above set the subject matter and objectives for this document.
An integrated community network is built on the development and integration of the community
sectors, referred to as action areas.
Clause 4 provides a process-based framework for the development, maintenance, and continuous
improvement of dementia-inclusive communities. To transform into a dementia-inclusive community,
a set of generic guiding principles is presented in Clause 5. Clause 6 provides a set of requirements for
the design of a dementia-inclusive network, while Clause 7 provides information about the action areas
and integration between them.
The annexes provide additional information on aspects such as possible considerations when
implementing requirements (see Annexes A and B) stages of dementia (see Annex C), other frameworks
available for consideration (see Annex D), and a compact implementation and progress evaluation
checklist (see Annex E).
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INTERNATIONAL STANDARD ISO 25552:2022(E)
Ageing societies — Framework for dementia-inclusive
communities
1 Scope
This document provides a framework for dementia-inclusive communities, including principles and the
considerations of inclusion, quality of life, built environments, special needs groups, and stakeholder
engagement. It also provides guidance on how to systematically leverage, improve, and interconnect
their existing assets and structures and transform efficiently into a dementia-inclusive community.
This document does not provide any clinical standards.
2 Normative references
There are no normative references in this document.
3 Terms and definitions
For the purposes of this document, the following terms and definitions apply.
ISO and IEC maintain terminology databases for use in standardization at the following addresses:
— ISO Online browsing platform: available at https:// www .iso .org/ obp
— IEC Electropedia: available at https:// www .electropedia .org/
3.1
dementia
set of symptoms affecting brain function that are caused by neurodegenerative and vascular diseases
or injuries
Note 1 to entry: Dementia is characterized by a decline in cognitive abilities such as memory; awareness of
person, place, and time; language, basic math skills; judgement; and planning. Dementia can also affect mood
and behaviour. As a chronic and progressive condition, dementia can significantly interfere with the ability to
maintain activities of daily living, such as eating, bathing, toileting, and dressing.
Note 2 to entry: Alzheimer’s disease, vascular disease, and other types of illnesses all contribute to dementia.
Other common types of dementia include Lewy body dementia, frontotemporal dementia, and mixed dementias.
In rare instances, dementia can be linked to infectious diseases, including Creutzfeldt-Jakob disease.
3.2
dementia-inclusive
providing equal access to opportunities and resources for persons with dementia (3.1), including, but not
limited to, a focus on stigma reduction, accessibility (3.9), individual tailored services, and participation
Note 1 to entry: In a dementia-inclusive community, people are educated about dementia, its progression, and
know that a person with dementia can sometimes experience the world differently. Persons with dementia,
their families, and their carers are empowered, supported, and included in the community. The rights and full
potential of the person with dementia are recognized and understood by all communities.
Note 2 to entry: In a dementia-inclusive community, the community facilitates persons with dementia and carers
to optimize their health and wellbeing; live as independently as possible; be understood and supported; safely
navigate and access their local communities, and to maintain their social networks.
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ISO 25552:2022(E)
3.3
community
place or group of people with an arrangement of responsibilities, activities and relationships
Note 1 to entry: A location such as a city, town, neighbourhood, village, or rural area, but it can also include groups
of people with shared interests or features, such as professional groups, religious organizations and businesses.
Note 2 to entry: In many, but not all, contexts, a community has a defined geographical boundary.
Note 3 to entry: The following are also considered as actors in the community:
— authorities having jurisdiction within the community;
— organizations, congregations, and community groups;
— individuals, carers, and families;
— persons of interest in education, research, and development;
— planners and providers of products, services, the built environment, and the community infrastructures.
[SOURCE: ISO/TS 37151:2015, 3.1, modified — “place or” has been added, Note 1 to entry has been
modified, and Note 2 to entry and Note 3 to entry have been added.]
3.4
community-based services
community-based care
community-based programmes
health and social services integration provided to an individual or family at their place of residence
or at other non-institutional locations within the community (3.3) for the purpose of promoting,
maintaining, or restoring health, minimizing the effects of illness and disability, and supporting and
facilitating autonomy (3.5) and self-care
Note 1 to entry: Services and programmes can include healthcare workers, befriending services, delivered meals,
home care, community mental health, health education, screening, immunizations, family planning, sexual
health, palliative care etc.
[SOURCE: ISO/IWA 18:2016, 2.2, modified — “health and social services integration provided to an
individual or family at their place” has replaced “blend of health and social services provided to an
individual or family in his/her place”, “or at other non-institutional locations within the community” has
been added, “on his/her normal lifestyle” has been removed, “and supporting and facilitating autonomy
and self-care” has been added, Note 1 to entry has been removed, “community-based programmes” has
been added as admitted term, and new Note 1 to entry has been added.]
3.5
autonomy
ability to control, cope with and make personal decisions about how one lives on a daily basis, according
to one’s own rules and preferences
3.6
independent living
living at home or in a community (3.3) without the need for continuous help from another person and
with a degree of self-determination or control over one's activities
Note 1 to entry: Independent living can refer to a range of housing and community arrangements that maximize
independence and self-determination.
[SOURCE: WHO Ageing and Health Technical Report, Vol.5 and U.S. National Library of Medicine]
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ISO 25552:2022(E)
3.7
participation
active involvement in a life/community situation
Note 1 to entry: Situation can also be understood to be the community.
[SOURCE: ICF 2001, WHO; ISO 9999:2016, 2.13, modified — “active” has been added, “life/community
situation” has replaced “life situation”, and Note 1 to entry has been added.]
3.8
engagement
involvement in, and contribution to, activities to achieve shared objectives
Note 1 to entry: This involves:
— active involvement of persons with dementia in activities (social, physical, mental) that have a positive
influence on their health and wellbeing and eventually autonomy and independence;
— activities that strengthen their family life and relationships;
— active contributions to the community to enhance the persons with dementia feeling of being of value to their
community.
3.9
accessibility
extent to which products, systems, services, environments and facilities can be used by people from a
population with the widest range of user needs, characteristics and capabilities to achieve identified
goals in identified contexts of use
Note 1 to entry: Context of use includes direct use or use supported by assistive technologies.
[SOURCE: ISO 9241-112:2017, 3.15]
3.10
meaningful life
construct having to do with the purpose, significance, fulfilment, participation (3.7), and satisfaction of
life
Note 1 to entry: A meaningful life can signify many different things for different people depending on culture,
age, etc.
Note 2 to entry: What is seen as a “meaningful life” varies between cultures.
[SOURCE: A Dementia Strategy for Canada, June 2019]
3.11
quality of life
product of the balance between social, spiritual, physical, and mental health, economic and
environmental conditions that affect human and social development
Note 1 to entry: It is a broad-ranging concept, incorporating a person’s physical health, psychological state, level
of independence, social relationships, personal beliefs, and relationship to salient features in the environment.
[SOURCE: ISO/IWA 18:2016, 2.22, modified — “spiritual, physical, and mental” has been added.]
3.12
ethical aspect
aspect of organizational/community behaviour that is in accordance with a human rights-based
approach
...