ISO/FDIS 25552

Ageing societies -- Framework for dementia-inclusive communities

Vieillissement de la population -- Collectivités inclusives à l'égard des personnes atteintes de démence

General Information

• Status: Published
• ICS: 11.020.10 - Health care services in general
• Technical Committee: ISO/TC 314 - Ageing societies
• Drafting Committee: ISO/TC 314/WG 2 - Dementia inclusive
• Current Stage: 5060 - Close of voting Proof returned by Secretariat
• Completion Date: 24-Dec-2021

Standards Content (sample)

FINAL
INTERNATIONAL ISO/FDIS
DRAFT
STANDARD 25552
ISO/TC 314
Ageing societies — Framework for
Secretariat: BSI
dementia-inclusive communities
Voting begins on:
2021-10-29
Voting terminates on:
2021-12-24
RECIPIENTS OF THIS DRAFT ARE INVITED TO
SUBMIT, WITH THEIR COMMENTS, NOTIFICATION
OF ANY RELEVANT PATENT RIGHTS OF WHICH
THEY ARE AWARE AND TO PROVIDE SUPPOR TING
DOCUMENTATION.
IN ADDITION TO THEIR EVALUATION AS
Reference number
BEING ACCEPTABLE FOR INDUSTRIAL, TECHNO-
ISO/FDIS 25552:2021(E)
LOGICAL, COMMERCIAL AND USER PURPOSES,
DRAFT INTERNATIONAL STANDARDS MAY ON
OCCASION HAVE TO BE CONSIDERED IN THE
LIGHT OF THEIR POTENTIAL TO BECOME STAN-
DARDS TO WHICH REFERENCE MAY BE MADE IN
NATIONAL REGULATIONS. © ISO 2021
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ISO/FDIS 25552:2021(E)
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ISO/FDIS 25552:2021(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/FDIS 25552:2021(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/FDIS 25552:2021(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

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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

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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/FDIS 25552:2021(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/FDIS 25552:2021(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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FINAL DRAFT INTERNATIONAL STANDARD ISO/FDIS 25552:2021(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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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/FDIS 25552:2021(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,
...