ISO 25551:2021

Ageing societies — General requirements and guidelines for carer-inclusive organizations

This document specifies requirements and provides guidelines for an organizational program for working carers providing care to: — adult care recipients (e.g. adults with cognitive, sensory, physical, and invisible disabilities, adults with chronic or episodic conditions and older dependents); — long-term childcare recipients (e.g. due to chronic illness or permanent cognitive, sensory or physical disability or injury). This document is applicable to any organization, regardless of size, sector or community setting (i.e. urban, rural or remote). This document can be used in conjunction with an organization’s management systems, human resource programs, and/or equity, diversity and inclusion programs, or on its own in the absence of a formal workplace program to support working carers.

Vieillissement de la population — Exigences générales et lignes directrices pour les organisations favorisant et appuyant les aidants naturels

Starajoča se družba - Splošne zahteve in smernice za oskrbovalcem prijazne organizacije

Ta dokument določa zahteve in podaja smernice za organizacijski program za oskrbovalce, ki skrbijo za:
– odrasle oskrbovance (npr. odrasle s kognitivnimi, senzoričnimi, telesnimi in nevidnimi motnjami, odrasle s kroničnimi ali epizodnimi boleznimi ter starejše odvisne osebe);
– dolgotrajne otroške oskrbovance (npr. zaradi kronične bolezni ali trajne kognitivne, senzorične ali fizične prizadetosti ali poškodbe).
Ta dokument se uporablja za vse organizacije ne glede na njihovo velikost, sektor ali okolje (tj. mestno, podeželsko ali oddaljeno).
Ta dokument je mogoče uporabljati v povezavi s sistemi vodenja organizacije, programi človeških virov in/ali programi pravičnosti, raznolikosti in vključevanja oziroma samostojno, če ni uradnega programa za delovno mesto oskrbovalca.

General Information

• Status: Published
• Publication Date: 16-Nov-2021
• ICS: 03.080.30 - Services for consumers
• ICS: 03.100.30 - Management of human resources
• ICS: 11.020.10 - Health care services in general
• Technical Committee: ISO/TC 314 - Ageing societies
• Drafting Committee: ISO/TC 314/WG 3 - Carer inclusive
• Current Stage: 6060 - International Standard published
• Start Date: 17-Nov-2021
• Due Date: 08-Apr-2022
• Completion Date: 17-Nov-2021
• Ref Project: SIST ISO 25551:2022 - Ageing societies - General requirements and guidelines for carer-inclusive organizations

Standards Content (Sample)

SLOVENSKI STANDARD
SIST ISO 25551:2022
01-marec-2022
Starajoča se družba - Splošne zahteve in smernice za oskrbovalcem prijazne
organizacije
Ageing societies - General requirements and guidelines for carer-inclusive organizations
Vieillissement de la population -- Exigences générales et lignes directrices pour les
organisations favorisant et appuyant les aidants naturels
Ta slovenski standard je istoveten z: ISO 25551:2021
ICS:
03.080.30 Storitve za potrošnike Services for consumers
03.100.30 Vodenje ljudi Management of human
resources
11.020.10 Zdravstvene storitve na Health care services in
splošno general
SIST ISO 25551:2022 en
2003-01.Slovenski inštitut za standardizacijo. Razmnoževanje celote ali delov tega standarda ni dovoljeno.

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SIST ISO 25551:2022

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SIST ISO 25551:2022
INTERNATIONAL ISO
STANDARD 25551
First edition
2021-11
Ageing societies — General
requirements and guidelines for
carer-inclusive organizations
Vieillissement de la population — Exigences générales et lignes
directrices pour les organisations favorisant et appuyant les aidants
naturels
Reference number
ISO 25551:2021(E)
© ISO 2021

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SIST ISO 25551:2022
ISO 25551:2021(E)
COPYRIGHT PROTECTED DOCUMENT
© ISO 2021
All rights reserved. Unless otherwise specified, or required in the context of its implementation, no part of this publication may
be reproduced or utilized otherwise in any form or by any means, electronic or mechanical, including photocopying, or posting on
the internet or an intranet, without prior written permission. Permission can be requested from either ISO at the address below
or ISO’s member body in the country of the requester.
ISO copyright office
CP 401 • Ch. de Blandonnet 8
CH-1214 Vernier, Geneva
Phone: [phone]
Email: [e-mail]
Website: www.iso.org
Published in Switzerland
ii
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SIST ISO 25551:2022
ISO 25551:2021(E)
Contents Page
Foreword .iv
Introduction .v
1 Scope . 1
2 Normative references . 1
3 Terms and definitions . 1
4 Principles . 4
4.1 General . 4
4.2 Guiding principles . 4
5 Carer-inclusive program . 5
5.1 General . 5
5.2 Top management commitment, support, and leadership . 5
5.3 Worker consultation and participation . 6
5.4 Carer-inclusive organization policy . 6
5.5 Regulatory and other requirements . 7
5.6 Social responsibility . 7
5.7 Review of internal practices and available supports . 7
5.8 Identify gaps and barriers . 8
5.9 Objectives and targets . 8
5.10 Confidential disclosure of working carers . 9
5.11 Awareness, competence, and training . 9
5.11.1 General . 9
5.11.2 Training . 9
5.12 Communication of available services . 9
5.13 Carer culture . 10
5.14 Actions by organizations to provide necessary supports for working carers . 10
5.14.1 General . 10
5.14.2 Suggested actions . 11
5.15 Response to unplanned or emergency caregiving situations . 11
5.16 Monitoring and measurement . 12
5.16.1 General .12
5.16.2 Documentation.12
6 Management review and continual improvement .12
6.1 Review process . .12
6.1.1 General .12
6.1.2 Review input . 13
6.1.3 Review output . 13
6.2 Continual improvement . 13
Annex A (informative) Sex-/gender-based lens .15
Annex B (informative) Sample internal review checklist .17
Bibliography .20
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SIST ISO 25551:2022
ISO 25551:2021(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
through ISO technical committees. Each member body interested in a subject for which a technical
committee has been established has the right to be represented on that committee. International
organizations, governmental and non-governmental, in liaison with ISO, also take part in the work.
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
constitute an endorsement.
For an explanation of the voluntary nature of standards, the meaning of ISO specific terms and
expressions related to conformity assessment, as well as information about ISO's adherence to
the World Trade Organization (WTO) principles in the Technical Barriers to Trade (TBT), see
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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SIST ISO 25551:2022
ISO 25551:2021(E)
Introduction
0.1  General
Worldwide, 349 million people are estimated to be care-dependent and of these, 101 million people
[1]
are over the age of 60 years . The form that long-term care takes varies significantly among and
within countries, from home care services to institutional hospital-based care. In most countries,
individuals assume caregiving responsibilities for a spouse, family member, or friend who needs care
because of limitations in their physical, mental or cognitive functioning and the majority of these carers
are women. Although caregiving is a valued societal resource and often viewed positively by carers
themselves, family/friend carers are largely a hidden and unacknowledged workforce.
Caregiving has become one of the most important social and economic issues worldwide and as
population ages, carers will play an increasing critical role in every society, providing substantial
economic value globally. For example, a study in Finland showed that the availability of unpaid care
[2]
considerably reduces public care expenditure (estimated cost savings of 338 million euros) . As
unpaid care reduces costs of health system expenditure, it needs to be recognized that both unpaid
and paid care is more often done by women. This can result in women leaving paid work to meet the
demands of their unpaid care work and/or experiencing workplace inequalities. Caregiving is impacting
workforces, health care systems, families and societies in general.
One of the greatest challenges for working carers is trying to balance employment with caregiving
responsibilities. For example, labour force participation (the percentage of working age people in
an economy who are either employed or unemployed but actively looking for work) is significantly
affected by the family care needs of the growing ageing population. At the same time, family sizes are
decreasing, more women are employed in the labour force, mobility is increasing, life expectancy is
increasing, and the number of older adults in need of care is projected to continue to grow. These trends
[3][4][5][6]
are impacting the growing number of working carers. Studies show that their paid work is
negatively impacted by becoming a carer and in most situations, employers do not have policies or
[7]
programs in place to support these working carers .
0.2  Supports for working carers
Employers can play a key role in supporting their employees who are also carers. Organizations can
opt to sponsor benefits to working carers, such as education, skills training or supportive services, or
to implement carer-supportive personnel policies and programs. These policies and programs help
working carers to manage their paid work alongside their caring role, providing equal opportunities for
them to remain in/or return to work, and help to reduce work-family conflict and/or support work-life
balance. However, there is a lack of clear guidance for employers on how to support working carers.
The workplace is but one arena where working carers can be supported. Although the majority of
waking hours are often spent at work, making it a key environment for carer supports, there are other
arenas where carer supports are available. These include those available through the government or
state, via the provision of public health care services and supports, such as family leaves. There are also
a range of non-governmental, charitable and/or disease-specific organizations (i.e. cancer, dementia)
that also provide supports, whether transportation services or personal care, for example. Finally, each
working carer also has their own informal support system made up of extended family, friends and/or
neighbours.
In some jurisdictions, working carers can be entitled to statutory care leaves, income support or credits,
insurance schemes, financial support for care expenses, etc. For example, in June 2019, the European
Union updated its Work-Life Balance Directive to introduce carer leaves and extended the right to
[8]
request flexible working arrangements to working carers (previously available to working parents) .
The intent of this document is to complement relevant existing programs and supports, whether state
provided or otherwise.
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SIST ISO 25551:2022
ISO 25551:2021(E)
0.3 Benefits of implementing a carer-inclusive program
Studies have shown that carer-inclusive policies and programs can help to:
— retain skilled staff;
— improve worker morale and productivity;
— reduce absenteeism and presenteeism;
— avoid the number of staff coming to work sick;
— reduce disability costs and mental health claims;
— give organizations a competitive advantage;
— build a more engaged workforce;
— support the organization’s efforts for a more inclusive workforce;
— demonstrate the organization’s investment in society through their support of working carers.
0.4  Application of document and relevant publications
This document can be selectively applied by organizations, recognizing that resources and supports
available will differ from organization to organization depending on the size and sector of the
organization and the jurisdiction. The development of a carer-inclusive program is seen as a process
that requires flexibility in terms of implementation.
A carer-inclusive program can be as basic as recognizing working carers as recipients that would
benefit from existing supports. For example, many organizations have existing employee support
programs which can be used to support working carers. A carer-inclusive program can build on these
existing supports or be a stand-alone program, if these are not available. Strategies need to include
raising awareness of these supports and targeting them appropriately.
Achieving a carer-inclusive workplace requires a holistic approach and depends on the engagement of
many stakeholders and integration of systems. For example, programs to address equity, diversity and
inclusion, human resources management and health and safety management would be relevant to the
application of this document. As such, there are related documents that can be used in conjunction with
this document, e.g. ISO 30415, ISO TR 30406, ISO 45001 and ISO 45003.
0.5  Caregiving and sex/gender issues
A sex/gender lens is important to consider in developing carer-inclusive policies and practices. For
example, estimates from across different countries indicate that 57 % to 81 % of all carers of older
[9]
adults and others requiring long term care are females, and are likely to work outside the home .
For female carers the impact that caregiving can have on employment can be considerable given that
they provide significantly more caregiving hours than males. Recent European research shows that
only 50 % of female working carers can work full-time and specifies that caregiving impacts their
[10][11]
financial circumstances . In addition, when compared to males, female working carers are more
[11]
likely to make job adjustments (change or leave jobs) as a result of their ongoing caregiving demands .
In addition, female carers provide more emotional support to care recipients, which can have a greater
impact on a carer’s mental health and contribute to carer distress.
A sex/gender lens is key to establishing carer-inclusive policies and programs to help eliminate bias
and to promote sex and gender equality. This will help to ensure that the needs of all are given equal
consideration in organizational decisions and activities.
This document provides guidance to organizations on how to apply a sex/gender lens to the
development of carer-inclusive programs. It supports the aims of United Nations Declaration on Gender
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SIST ISO 25551:2022
ISO 25551:2021(E)
[12]
Responsive Standards and Standards Development to make standards more gender responsive .
It also contributes to the achievement of the United Nations Sustainable Development Goal (SDG) 5:
Achieve gender equality and empower all women and girls and specifically SDG Target 5.4: Recognize
and value unpaid care and domestic work through the provision of public services, infrastructure
and social protection policies and the promotion of shared responsibility within the household and
the family as nationally appropriate. Further this document contributes to SDG 8: Promote sustained,
inclusive and sustainable economic growth, full and productive employment and decent work for all,
and specifically Target 8: To achieve full and productive employment and decent work for all women
and men, including for young people and persons with disabilities, and for equal pay for work of equal
[13][14]
value . Additional guidance on sex, gender and caregiving is provided in Annex A.
0.6  Emerging and evolving issues for working carers
The COVID-19 pandemic has highlighted and increased risks for many working carers. Although
providing certain advantages for working carers, such as working from home, COVID-19 has shown
more clearly the gaps in supports for working carers in both social and health care systems. A UK survey
showed that 70 % of family carers are providing more care due to the pandemic and many working
[15]
carers have seen a dramatic reduction in their income due to lockdown policies .
While not a new situation, one group particularly at risk are the “double duty” carers. Many of the
frontline health care workers providing care to older adults are also providing unpaid care to their own
older family members, friends or neighbours. These workers are at increased risk of contracting the
virus, making it is difficult for them to carry out their family caring role.
Another critical group of working carers are the “sandwich carers”. These are people trying to look
after frail and disabled elderly relatives, often their parents, or other older family or friends at the same
time as looking after dependent children. During the pandemic, these working carers are often working
from home, doing home schooling, parenting, and caring for their older relatives, friends or neighbours.
While this document focuses on working adults, there is increasing concern about the issues facing
young carers who can also be students and workers. Some academic organizations and employers are
beginning to address this issue, but at present, there is little guidance in this area.
Phrases and words related to caregiving have developed differently in individual languages and
language communities, depending on the professional, social, economic, political, cultural, and
linguistic factors. In addition, these words and phrases have evolved over recent decades with changes
in health care systems and public views about the role of caregiving in an ageing society. Some phrases
[16]
traditionally used in this field can now be viewed as misleading or inappropriate . In the development
of this document, feedback from experts showed great variation in the use of these phrases in different
countries and contexts.
The Technical Committee has developed an informative guide on terminology related to caregiving
to show how these words and phrases are used across regions and disciplines and how they are
evolving over time. See: Terminology Related to Caregiving, available on the TC 314 website at:
[17]
https://committee.iso.org/sites/tc314/home/projects/published/resources.html .
This document can assist organizations in identifying and responding to these issues for working
carers.
In this document, the following verbal forms are used:
— “shall” indicates a requirement;
— “should” indicates a recommendation;
— “can” indicates a possibility or a capability;
— “may” indicates a permission.
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SIST ISO 25551:2022
ISO 25551:2021(E)
Information marked as “NOTE” is intended to assist the understanding or use of the document. “Notes
to entry” used in Clause 3 provide additional information that supplements the terminological data and
can contain requirements relating to the use of a term.
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SIST ISO 25551:2022
INTERNATIONAL STANDARD ISO 25551:2021(E)
Ageing societies — General requirements and guidelines
for carer-inclusive organizations
1 Scope
This document specifies requirements and provides guidelines for an organizational program for
working carers providing care to:
— adult care recipients (e.g. adults with cognitive, sensory, physical, and invisible disabilities, adults
with chronic or episodic conditions and older dependents);
— long-term childcare recipients (e.g. due to chronic illness or permanent cognitive, sensory or
physical disability or injury).
This document is applicable to any organization, regardless of size, sector or community setting (i.e.
urban, rural or remote).
This document can be used in conjunction with an organization’s management systems, human
resource programs, and/or equity, diversity and inclusion programs, or on its own in the absence of a
formal workplace program to support working carers.
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
care
activities/actions (social, physical, emotional, spiritual, mental) that take place across a variety of
settings: in the home, community, institution and all care settings
Note 1 to entry: Applies to both paid and unpaid care.
3.2
care recipient
person who is receiving care from the working carer
3.3
care worker
care provider
person who is paid to support someone who is ill, struggling or disabled and who could not manage
without this help
Note 1 to entry: In some countries and regions, similar phrases include: home care provider, home health care
professional, personal support worker, personal care assistant, certified caregiver, trained carer, care specialist,
and health care professional.
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SIST ISO 25551:2022
ISO 25551:2021(E)
3.4
carer
caregiver
family caregiver
person who cares, unpaid, for a family member, friend or significant person who, due to a lifelong
condition, illness, disability, serious injury, a mental health condition or an addiction, cannot cope
without their support
Note 1 to entry: This term includes carers who are generally unpaid but can receive some financial support for
care they provide from time to time. It does not include trained care providers affiliated with home care agencies.
Note 2 to entry: Carers can provide emotional or financial support, as well as hands-on help with different tasks.
Caregiving can also be done from long distance.
Note 3 to entry: The terms “carer”, “family caregiver” and “caregiver” are often used interchangeably. “Carer”
is more commonly used in Europe, UK, New Zealand, and Australia. In North America, “caregiver” or “family
caregiver” is more commonly used. In Asia “carer” more commonly refers to a paid care provider.
3.5
family
combination of two or more persons who are bound together over time by ties of mutual consent, birth
and/or adoption or placement and who, together, assume responsibilities for various roles and functions
Note 1 to entry: The term “family” can include “chosen families,” such as strong friendships and communities
where unrelated persons provide care normally provided by nuclear family members.
3.6
unpaid care
care provided without a monetary reward by carers
Note 1 to entry: “informal care” is often used to describe unpaid care but is becoming less acceptable as it does
not reflect the complexity and essential nature of care that is provided. Unpaid care is labour and provides
significant value to families, health care systems and the economy.
3.7
working carer
individual in full or part-time work who also provides care to a family member, friend or significant
person and where the care responsibilities have a substantial impact on their working life
Note 1 to entry: Persons with disabilities can be working carers as well as care recipients.
Note 2 to entry: Commonly used term in UK, Nordic countries and Europe. In Canada, "carer-worker" or "employee
carer" are also used.
3.8
young carer
children and young people who provide regular and prolonged care for ill or disabled family members,
including those with addictions and mental health issues
Note 1 to entry: The upper age limit for young carers can vary from 18 to 25 years. Some countries are using the
term young adult carers to distinguish between the age categories of young carers.
3.9
absenteeism
time taken off work, including periods of paid or unpaid leave, to attend to non-work-related
responsibilities such as self-care or caregiving-related matters
Note 1 to entry: Absenteeism includes any kind or amount of time off work, such as sick or vacation days, leaving
work early, or coming into work late.
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SIST ISO 25551:2022
ISO 25551:2021(E)
3.10
accommodation
intentional organizational actions, whether in policies, programs, or the organizational culture, which
relieves work-family conflict
Note 1 to entry: Accommodation can include flexible work a
...

INTERNATIONAL ISO
STANDARD 25551
First edition
2021-11
Ageing societies — General
requirements and guidelines for
carer-inclusive organizations
Vieillissement de la population — Exigences générales et lignes
directrices pour les organisations favorisant et appuyant les aidants
naturels
Reference number
ISO 25551:2021(E)
© ISO 2021

---------------------- Page: 1 ----------------------
ISO 25551:2021(E)
COPYRIGHT PROTECTED DOCUMENT
© ISO 2021
All rights reserved. Unless otherwise specified, or required in the context of its implementation, no part of this publication may
be reproduced or utilized otherwise in any form or by any means, electronic or mechanical, including photocopying, or posting on
the internet or an intranet, without prior written permission. Permission can be requested from either ISO at the address below
or ISO’s member body in the country of the requester.
ISO copyright office
CP 401 • Ch. de Blandonnet 8
CH-1214 Vernier, Geneva
Phone: [phone]
Email: [e-mail]
Website: www.iso.org
Published in Switzerland
ii
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ISO 25551:2021(E)
Contents Page
Foreword .iv
Introduction .v
1 Scope . 1
2 Normative references . 1
3 Terms and definitions . 1
4 Principles . 4
4.1 General . 4
4.2 Guiding principles . 4
5 Carer-inclusive program . 5
5.1 General . 5
5.2 Top management commitment, support, and leadership . 5
5.3 Worker consultation and participation . 6
5.4 Carer-inclusive organization policy . 6
5.5 Regulatory and other requirements . 7
5.6 Social responsibility . 7
5.7 Review of internal practices and available supports . 7
5.8 Identify gaps and barriers . 8
5.9 Objectives and targets . 8
5.10 Confidential disclosure of working carers . 9
5.11 Awareness, competence, and training . 9
5.11.1 General . 9
5.11.2 Training . 9
5.12 Communication of available services . 9
5.13 Carer culture . 10
5.14 Actions by organizations to provide necessary supports for working carers . 10
5.14.1 General . 10
5.14.2 Suggested actions . 11
5.15 Response to unplanned or emergency caregiving situations . 11
5.16 Monitoring and measurement . 12
5.16.1 General .12
5.16.2 Documentation.12
6 Management review and continual improvement .12
6.1 Review process . .12
6.1.1 General .12
6.1.2 Review input . 13
6.1.3 Review output . 13
6.2 Continual improvement . 13
Annex A (informative) Sex-/gender-based lens .15
Annex B (informative) Sample internal review checklist .17
Bibliography .20
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ISO 25551:2021(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
through ISO technical committees. Each member body interested in a subject for which a technical
committee has been established has the right to be represented on that committee. International
organizations, governmental and non-governmental, in liaison with ISO, also take part in the work.
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
constitute an endorsement.
For an explanation of the voluntary nature of standards, the meaning of ISO specific terms and
expressions related to conformity assessment, as well as information about ISO's adherence to
the World Trade Organization (WTO) principles in the Technical Barriers to Trade (TBT), see
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.
iv
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ISO 25551:2021(E)
Introduction
0.1  General
Worldwide, 349 million people are estimated to be care-dependent and of these, 101 million people
[1]
are over the age of 60 years . The form that long-term care takes varies significantly among and
within countries, from home care services to institutional hospital-based care. In most countries,
individuals assume caregiving responsibilities for a spouse, family member, or friend who needs care
because of limitations in their physical, mental or cognitive functioning and the majority of these carers
are women. Although caregiving is a valued societal resource and often viewed positively by carers
themselves, family/friend carers are largely a hidden and unacknowledged workforce.
Caregiving has become one of the most important social and economic issues worldwide and as
population ages, carers will play an increasing critical role in every society, providing substantial
economic value globally. For example, a study in Finland showed that the availability of unpaid care
[2]
considerably reduces public care expenditure (estimated cost savings of 338 million euros) . As
unpaid care reduces costs of health system expenditure, it needs to be recognized that both unpaid
and paid care is more often done by women. This can result in women leaving paid work to meet the
demands of their unpaid care work and/or experiencing workplace inequalities. Caregiving is impacting
workforces, health care systems, families and societies in general.
One of the greatest challenges for working carers is trying to balance employment with caregiving
responsibilities. For example, labour force participation (the percentage of working age people in
an economy who are either employed or unemployed but actively looking for work) is significantly
affected by the family care needs of the growing ageing population. At the same time, family sizes are
decreasing, more women are employed in the labour force, mobility is increasing, life expectancy is
increasing, and the number of older adults in need of care is projected to continue to grow. These trends
[3][4][5][6]
are impacting the growing number of working carers. Studies show that their paid work is
negatively impacted by becoming a carer and in most situations, employers do not have policies or
[7]
programs in place to support these working carers .
0.2  Supports for working carers
Employers can play a key role in supporting their employees who are also carers. Organizations can
opt to sponsor benefits to working carers, such as education, skills training or supportive services, or
to implement carer-supportive personnel policies and programs. These policies and programs help
working carers to manage their paid work alongside their caring role, providing equal opportunities for
them to remain in/or return to work, and help to reduce work-family conflict and/or support work-life
balance. However, there is a lack of clear guidance for employers on how to support working carers.
The workplace is but one arena where working carers can be supported. Although the majority of
waking hours are often spent at work, making it a key environment for carer supports, there are other
arenas where carer supports are available. These include those available through the government or
state, via the provision of public health care services and supports, such as family leaves. There are also
a range of non-governmental, charitable and/or disease-specific organizations (i.e. cancer, dementia)
that also provide supports, whether transportation services or personal care, for example. Finally, each
working carer also has their own informal support system made up of extended family, friends and/or
neighbours.
In some jurisdictions, working carers can be entitled to statutory care leaves, income support or credits,
insurance schemes, financial support for care expenses, etc. For example, in June 2019, the European
Union updated its Work-Life Balance Directive to introduce carer leaves and extended the right to
[8]
request flexible working arrangements to working carers (previously available to working parents) .
The intent of this document is to complement relevant existing programs and supports, whether state
provided or otherwise.
v
© ISO 2021 – All rights reserved

---------------------- Page: 5 ----------------------
ISO 25551:2021(E)
0.3 Benefits of implementing a carer-inclusive program
Studies have shown that carer-inclusive policies and programs can help to:
— retain skilled staff;
— improve worker morale and productivity;
— reduce absenteeism and presenteeism;
— avoid the number of staff coming to work sick;
— reduce disability costs and mental health claims;
— give organizations a competitive advantage;
— build a more engaged workforce;
— support the organization’s efforts for a more inclusive workforce;
— demonstrate the organization’s investment in society through their support of working carers.
0.4  Application of document and relevant publications
This document can be selectively applied by organizations, recognizing that resources and supports
available will differ from organization to organization depending on the size and sector of the
organization and the jurisdiction. The development of a carer-inclusive program is seen as a process
that requires flexibility in terms of implementation.
A carer-inclusive program can be as basic as recognizing working carers as recipients that would
benefit from existing supports. For example, many organizations have existing employee support
programs which can be used to support working carers. A carer-inclusive program can build on these
existing supports or be a stand-alone program, if these are not available. Strategies need to include
raising awareness of these supports and targeting them appropriately.
Achieving a carer-inclusive workplace requires a holistic approach and depends on the engagement of
many stakeholders and integration of systems. For example, programs to address equity, diversity and
inclusion, human resources management and health and safety management would be relevant to the
application of this document. As such, there are related documents that can be used in conjunction with
this document, e.g. ISO 30415, ISO TR 30406, ISO 45001 and ISO 45003.
0.5  Caregiving and sex/gender issues
A sex/gender lens is important to consider in developing carer-inclusive policies and practices. For
example, estimates from across different countries indicate that 57 % to 81 % of all carers of older
[9]
adults and others requiring long term care are females, and are likely to work outside the home .
For female carers the impact that caregiving can have on employment can be considerable given that
they provide significantly more caregiving hours than males. Recent European research shows that
only 50 % of female working carers can work full-time and specifies that caregiving impacts their
[10][11]
financial circumstances . In addition, when compared to males, female working carers are more
[11]
likely to make job adjustments (change or leave jobs) as a result of their ongoing caregiving demands .
In addition, female carers provide more emotional support to care recipients, which can have a greater
impact on a carer’s mental health and contribute to carer distress.
A sex/gender lens is key to establishing carer-inclusive policies and programs to help eliminate bias
and to promote sex and gender equality. This will help to ensure that the needs of all are given equal
consideration in organizational decisions and activities.
This document provides guidance to organizations on how to apply a sex/gender lens to the
development of carer-inclusive programs. It supports the aims of United Nations Declaration on Gender
vi
  © ISO 2021 – All rights reserved

---------------------- Page: 6 ----------------------
ISO 25551:2021(E)
[12]
Responsive Standards and Standards Development to make standards more gender responsive .
It also contributes to the achievement of the United Nations Sustainable Development Goal (SDG) 5:
Achieve gender equality and empower all women and girls and specifically SDG Target 5.4: Recognize
and value unpaid care and domestic work through the provision of public services, infrastructure
and social protection policies and the promotion of shared responsibility within the household and
the family as nationally appropriate. Further this document contributes to SDG 8: Promote sustained,
inclusive and sustainable economic growth, full and productive employment and decent work for all,
and specifically Target 8: To achieve full and productive employment and decent work for all women
and men, including for young people and persons with disabilities, and for equal pay for work of equal
[13][14]
value . Additional guidance on sex, gender and caregiving is provided in Annex A.
0.6  Emerging and evolving issues for working carers
The COVID-19 pandemic has highlighted and increased risks for many working carers. Although
providing certain advantages for working carers, such as working from home, COVID-19 has shown
more clearly the gaps in supports for working carers in both social and health care systems. A UK survey
showed that 70 % of family carers are providing more care due to the pandemic and many working
[15]
carers have seen a dramatic reduction in their income due to lockdown policies .
While not a new situation, one group particularly at risk are the “double duty” carers. Many of the
frontline health care workers providing care to older adults are also providing unpaid care to their own
older family members, friends or neighbours. These workers are at increased risk of contracting the
virus, making it is difficult for them to carry out their family caring role.
Another critical group of working carers are the “sandwich carers”. These are people trying to look
after frail and disabled elderly relatives, often their parents, or other older family or friends at the same
time as looking after dependent children. During the pandemic, these working carers are often working
from home, doing home schooling, parenting, and caring for their older relatives, friends or neighbours.
While this document focuses on working adults, there is increasing concern about the issues facing
young carers who can also be students and workers. Some academic organizations and employers are
beginning to address this issue, but at present, there is little guidance in this area.
Phrases and words related to caregiving have developed differently in individual languages and
language communities, depending on the professional, social, economic, political, cultural, and
linguistic factors. In addition, these words and phrases have evolved over recent decades with changes
in health care systems and public views about the role of caregiving in an ageing society. Some phrases
[16]
traditionally used in this field can now be viewed as misleading or inappropriate . In the development
of this document, feedback from experts showed great variation in the use of these phrases in different
countries and contexts.
The Technical Committee has developed an informative guide on terminology related to caregiving
to show how these words and phrases are used across regions and disciplines and how they are
evolving over time. See: Terminology Related to Caregiving, available on the TC 314 website at:
[17]
https://committee.iso.org/sites/tc314/home/projects/published/resources.html .
This document can assist organizations in identifying and responding to these issues for working
carers.
In this document, the following verbal forms are used:
— “shall” indicates a requirement;
— “should” indicates a recommendation;
— “can” indicates a possibility or a capability;
— “may” indicates a permission.
vii
© ISO 2021 – All rights reserved

---------------------- Page: 7 ----------------------
ISO 25551:2021(E)
Information marked as “NOTE” is intended to assist the understanding or use of the document. “Notes
to entry” used in Clause 3 provide additional information that supplements the terminological data and
can contain requirements relating to the use of a term.
viii
  © ISO 2021 – All rights reserved

---------------------- Page: 8 ----------------------
INTERNATIONAL STANDARD ISO 25551:2021(E)
Ageing societies — General requirements and guidelines
for carer-inclusive organizations
1 Scope
This document specifies requirements and provides guidelines for an organizational program for
working carers providing care to:
— adult care recipients (e.g. adults with cognitive, sensory, physical, and invisible disabilities, adults
with chronic or episodic conditions and older dependents);
— long-term childcare recipients (e.g. due to chronic illness or permanent cognitive, sensory or
physical disability or injury).
This document is applicable to any organization, regardless of size, sector or community setting (i.e.
urban, rural or remote).
This document can be used in conjunction with an organization’s management systems, human
resource programs, and/or equity, diversity and inclusion programs, or on its own in the absence of a
formal workplace program to support working carers.
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
care
activities/actions (social, physical, emotional, spiritual, mental) that take place across a variety of
settings: in the home, community, institution and all care settings
Note 1 to entry: Applies to both paid and unpaid care.
3.2
care recipient
person who is receiving care from the working carer
3.3
care worker
care provider
person who is paid to support someone who is ill, struggling or disabled and who could not manage
without this help
Note 1 to entry: In some countries and regions, similar phrases include: home care provider, home health care
professional, personal support worker, personal care assistant, certified caregiver, trained carer, care specialist,
and health care professional.
1
© ISO 2021 – All rights reserved

---------------------- Page: 9 ----------------------
ISO 25551:2021(E)
3.4
carer
caregiver
family caregiver
person who cares, unpaid, for a family member, friend or significant person who, due to a lifelong
condition, illness, disability, serious injury, a mental health condition or an addiction, cannot cope
without their support
Note 1 to entry: This term includes carers who are generally unpaid but can receive some financial support for
care they provide from time to time. It does not include trained care providers affiliated with home care agencies.
Note 2 to entry: Carers can provide emotional or financial support, as well as hands-on help with different tasks.
Caregiving can also be done from long distance.
Note 3 to entry: The terms “carer”, “family caregiver” and “caregiver” are often used interchangeably. “Carer”
is more commonly used in Europe, UK, New Zealand, and Australia. In North America, “caregiver” or “family
caregiver” is more commonly used. In Asia “carer” more commonly refers to a paid care provider.
3.5
family
combination of two or more persons who are bound together over time by ties of mutual consent, birth
and/or adoption or placement and who, together, assume responsibilities for various roles and functions
Note 1 to entry: The term “family” can include “chosen families,” such as strong friendships and communities
where unrelated persons provide care normally provided by nuclear family members.
3.6
unpaid care
care provided without a monetary reward by carers
Note 1 to entry: “informal care” is often used to describe unpaid care but is becoming less acceptable as it does
not reflect the complexity and essential nature of care that is provided. Unpaid care is labour and provides
significant value to families, health care systems and the economy.
3.7
working carer
individual in full or part-time work who also provides care to a family member, friend or significant
person and where the care responsibilities have a substantial impact on their working life
Note 1 to entry: Persons with disabilities can be working carers as well as care recipients.
Note 2 to entry: Commonly used term in UK, Nordic countries and Europe. In Canada, "carer-worker" or "employee
carer" are also used.
3.8
young carer
children and young people who provide regular and prolonged care for ill or disabled family members,
including those with addictions and mental health issues
Note 1 to entry: The upper age limit for young carers can vary from 18 to 25 years. Some countries are using the
term young adult carers to distinguish between the age categories of young carers.
3.9
absenteeism
time taken off work, including periods of paid or unpaid leave, to attend to non-work-related
responsibilities such as self-care or caregiving-related matters
Note 1 to entry: Absenteeism includes any kind or amount of time off work, such as sick or vacation days, leaving
work early, or coming into work late.
2
  © ISO 2021 – All rights reserved

---------------------- Page: 10 ----------------------
ISO 25551:2021(E)
3.10
accommodation
intentional organizational actions, whether in policies, programs, or the organizational culture, which
relieves work-family conflict
Note 1 to entry: Accommodation can include flexible work arrangements, such as working from home, flexible
working hours, job sharing or giving workers more autonomy over their work schedules.
3.11
consultation
process of seeking views before making a decision
Note 1 to entry: Consultation includes engaging health and safety committees and workers’ representatives,
where they exist.
[SOURCE: ISO 45001:2018, 3.5]
3.12
organizational culture
values, beliefs and practices that influence the conduct, behaviour and knowledge of people and
organizations
[SOURCE: ISO 30400:2016, 3.2, modified — "and knowledge" has been added.]
3.13
participation
involvement in decision-making
Note 1 to entry: Participation includes engaging health and safety committees and workers’ representatives,
where they exist.
[SOURCE: ISO 45001:2018, 3.4]
3.14
presenteeism
lost productivity that occurs when employees are not fully functioning in the workplace because of an
illness, injury, or other condition
Note 1 to entry: Even though an employee can be physically at work, they might not be able to fully perform their
duties, and this leads to loss of productivity due to preo
...

FINAL
INTERNATIONAL ISO/FDIS
DRAFT
STANDARD 25551
ISO/TC 314
Ageing societies — General
Secretariat: BSI
requirements and guidelines for
Voting begins on:
2021­08­17 carer-inclusive organizations
Voting terminates on:
Vieillissement de la population — Exigences générales et lignes
2021­10­12
directrices pour les organisations favorisant et appuyant les aidants
naturels
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 25551:2021(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

---------------------- Page: 1 ----------------------
ISO/FDIS 25551:2021(E)

COPYRIGHT PROTECTED DOCUMENT
© ISO 2021
All rights reserved. Unless otherwise specified, or required in the context of its implementation, no part of this publication may
be reproduced or utilized otherwise in any form or by any means, electronic or mechanical, including photocopying, or posting
on the internet or an intranet, without prior written permission. Permission can be requested from either ISO at the address
below or ISO’s member body in the country of the requester.
ISO copyright office
CP 401 • Ch. de Blandonnet 8
CH­1214 Vernier, Geneva
Phone: [phone]
Email: [e-mail]
Website: www.iso.org
Published in Switzerland
ii © ISO 2021 – All rights reserved

---------------------- Page: 2 ----------------------
ISO/FDIS 25551:2021(E)

Contents Page
Foreword .iv
Introduction .v
1 Scope . 1
2 Normative references . 1
3 Terms and definitions . 1
4 Principles . 4
4.1 General . 4
4.2 Guiding principles . 4
5 Carer-inclusive program . 5
5.1 General . 5
5.2 Top management commitment, support, and leadership . 5
5.3 Worker consultation and participation . 6
5.4 Carer-inclusive organization policy . 6
5.5 Regulatory and other requirements . 7
5.6 Social responsibility . 7
5.7 Review of internal practices and available supports . 7
5.8 Identify gaps and barriers . 8
5.9 Objectives and targets . 8
5.10 Confidential disclosure of working carers . 9
5.11 Awareness, competence, and training . 9
5.11.1 General. 9
5.11.2 Training . 9
5.12 Communication of available services . 9
5.13 Carer culture .10
5.14 Actions by organizations to provide necessary supports for working carers .10
5.14.1 General.10
5.14.2 Suggested actions .11
5.15 Response to unplanned or emergency caregiving situations .11
5.16 Monitoring and measurement .12
5.16.1 General.12
5.16.2 Documentation .12
6 Management review and continual improvement .12
6.1 Review process .12
6.1.1 General.12
6.1.2 Review input .13
6.1.3 Review output .13
6.2 Continual improvement .13
Annex A (informative) Sex-/gender-based lens .15
Annex B (informative) Sample internal review checklist .17
Bibliography .20
© ISO 2021 – All rights reserved iii

---------------------- Page: 3 ----------------------
ISO/FDIS 25551:2021(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
through ISO technical committees. Each member body interested in a subject for which a technical
committee has been established has the right to be represented on that committee. International
organizations, governmental and non­governmental, in liaison with ISO, also take part in the work.
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
constitute an endorsement.
For an explanation of the voluntary nature of standards, the meaning of ISO specific terms and
expressions related to conformity assessment, as well as information about ISO's adherence to the
World Trade Organization (WTO) principles in the Technical Barriers to Trade (TBT), see 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.
iv © ISO 2021 – All rights reserved

---------------------- Page: 4 ----------------------
ISO/FDIS 25551:2021(E)

Introduction
0.1  General
Worldwide, 349 million people are estimated to be care­dependent and of these, 101 million people
[1]
are over the age of 60 years. The form that long term care takes varies significantly among and
within countries, from home care services to institutional hospital­based care. In most countries,
individuals assume caregiving responsibilities for a spouse, family member, or friend who needs care
because of limitations in their physical, mental or cognitive functioning and the majority of these carers
are women. Although caregiving is a valued societal resource and often viewed positively by carers
themselves, family/friend carers are largely a hidden and unacknowledged workforce.
Caregiving has become one of the most important social and economic issues worldwide and as
population ages, carers will play an increasing critical role in every society, providing substantial
economic value globally. For example, a study in Finland showed that the availability of unpaid care
[2]
considerably reduces public care expenditure (estimated cost savings of 338 million euros). As
unpaid care reduces costs of health system expenditure, it needs to be recognized that both unpaid
and paid care is more often done by women. This can result in women leaving paid work to meet the
demands of their unpaid care work and/or experiencing workplace inequalities. Caregiving is impacting
workforces, health care systems, families and societies in general.
One of the greatest challenges for working carers is trying to balance employment with caregiving
responsibilities. For example, labour force participation (the percentage of working age people in
an economy who are either employed or unemployed but actively looking for work) is significantly
affected by the family care needs of the growing ageing population. At the same time, family sizes are
decreasing, more women are employed in the labour force, mobility is increasing, life expectancy is
increasing, and the number of older adults in need of care is projected to continue to grow. These trends
[3][4][5][6]
are impacting the growing number of working carers. Studies show that their paid work is
negatively impacted by becoming a carer and in most situations, employers do not have policies or
[7]
programs in place to support these working carers.
0.2  Supports for working carers
Employers can play a key role in supporting their employees who are also carers. Organizations can
opt to sponsor benefits to working carers, such as education, skills training or supportive services, or
to implement carer­supportive personnel policies and programs. These policies and programs help
working carers to manage their paid work alongside their caring role, providing equal opportunities for
them to remain in/or return to work, and help to reduce work-family conflict and/or support work-life
balance. However, there is a lack of clear guidance for employers on how to support working carers.
The workplace is but one arena where working carers can be supported. Although the majority of
waking hours are often spent at work, making it a key environment for carer supports, there are other
arenas where carer supports are available. These include those available through the government or
state, via the provision of public health care services and supports, such as family leaves. There are also
a range of non-governmental, charitable and/or disease-specific organizations (i.e. cancer, dementia)
that also provide supports, whether transportation services or personal care, for example. Finally, each
working carer also has their own informal support system made up of extended family, friends and/or
neighbours.
In some jurisdictions, working carers can be entitled to statutory care leaves, income support or credits,
insurance schemes, financial support for care expenses, etc. For example, in June 2019, the European
Union updated its Work-Life Balance Directive to introduce carer leaves and extended the right to
[8]
request flexible working arrangements to working carers (previously available to working parents).
The intent of this document is to complement relevant existing programs and supports, whether state
provided or otherwise.
© ISO 2021 – All rights reserved v

---------------------- Page: 5 ----------------------
ISO/FDIS 25551:2021(E)

0.3 Benefits of implementing a carer-inclusive program
Studies have shown that carer­inclusive policies and programs can help to:
— retain skilled staff;
— improve worker morale and productivity;
— reduce absenteeism and presenteeism;
— avoid the number of staff coming to work sick;
— reduce disability costs and mental health claims;
— give organizations a competitive advantage;
— build a more engaged workforce;
— support the organization’s efforts for a more inclusive workforce;
— demonstrate the organization’s investment in society through their support of working carers.
0.4  Application of document and relevant publications
This document can be selectively applied by organizations, recognizing that resources and supports
available will differ from organization to organization depending on the size and sector of the
organization and the jurisdiction. The development of a carer­inclusive program is seen as a process
that requires flexibility in terms of implementation.
A carer­inclusive program can be as basic as recognizing working carers as recipients that would
benefit from existing supports. For example, many organizations have existing employee support
programs which can be used to support working carers. A carer­inclusive program can build on these
existing supports or be a stand-alone program, if these are not available. Strategies need to include
raising awareness of these supports and targeting them appropriately.
Achieving a carer-inclusive workplace requires a holistic approach and depends on the engagement of
many stakeholders and integration of systems. For example, programs to address equity, diversity and
inclusion, human resources management and health and safety management would be relevant to the
application of this document. As such, there are related documents that can be used in conjunction with
this document, e.g. ISO 30415, ISO TR 30406, ISO 45001 and ISO 45003.
0.5  Caregiving and sex/gender issues
A sex/gender lens is important to consider in developing carer-inclusive policies and practices. For
example, estimates from across different countries indicate that 57 % to 81 % of all carers of older
[9]
adults and others requiring long term care are females, and are likely to work outside the home.
For female carers the impact that caregiving can have on employment can be considerable given that
they provide significantly more caregiving hours than males. Recent European research shows that
only 50 % of female working carers can work full-time and specifies that caregiving impacts their
[10][11]
financial circumstances. In addition, when compared to males, female working carers are more
likely to make job adjustments (change or leave jobs) as a result of their ongoing caregiving demands.
[11]
In addition, female carers provide more emotional support to care recipients, which can have a
greater impact on a carer’s mental health and contribute to carer distress.
A sex/gender lens is key to establishing carer-inclusive policies and programs to help eliminate bias
and to promote sex and gender equality. This will help to ensure that the needs of all are given equal
consideration in organizational decisions and activities.
This document provides guidance to organizations on how to apply a sex/gender lens to the
development of carer­inclusive programs. It supports the aims of United Nations Declaration on Gender
vi © ISO 2021 – All rights reserved

---------------------- Page: 6 ----------------------
ISO/FDIS 25551:2021(E)

[12]
Responsive Standards and Standards Development to make standards more gender responsive.
It also contributes to the achievement of the United Nations Sustainable Development Goal (SDG) 5:
Achieve gender equality and empower all women and girls and specifically SDG Target 5.4: Recognize
and value unpaid care and domestic work through the provision of public services, infrastructure
and social protection policies and the promotion of shared responsibility within the household and
the family as nationally appropriate. Further this document contributes to SDG 8: Promote sustained,
inclusive and sustainable economic growth, full and productive employment and decent work for all,
and specifically Target 8: To achieve full and productive employment and decent work for all women
and men, including for young people and persons with disabilities, and for equal pay for work of equal
[13][14]
value. Additional guidance on sex, gender and caregiving is provided in Annex A.
0.6  Emerging and evolving issues for working carers
The COVID-19 pandemic has highlighted and increased risks for many working carers. Although
providing certain advantages for working carers, such as working from home, COVID­19 has shown
more clearly the gaps in supports for working carers in both social and health care systems. A UK survey
showed that 70 % of family carers are providing more care due to the pandemic and many working
[15]
carers have seen a dramatic reduction in their income due to lockdown policies.
While not a new situation, one group particularly at risk are the “double duty” carers. Many of the
frontline health care workers providing care to older adults are also providing unpaid care to their own
older family members, friends or neighbours. These workers are at increased risk of contracting the
virus, making it is difficult for them to carry out their family caring role.
Another critical group of working carers are the “sandwich carers”. These are people trying to look
after frail and disabled elderly relatives, often their parents, or other older family or friends at the same
time as looking after dependent children. During the pandemic, these working carers are often working
from home, doing home schooling, parenting, and caring for their older relatives, friends or neighbours.
While this document focuses on working adults, there is increasing concern about the issues facing
young carers who can also be students and workers. Some academic organizations and employers are
beginning to address this issue, but at present, there is little guidance in this area.
Phrases and words related to caregiving have developed differently in individual languages and
language communities, depending on the professional, social, economic, political, cultural, and
linguistic factors. In addition, these words and phrases have evolved over recent decades with changes
in health care systems and public views about the role of caregiving in an ageing society. Some phrases
traditionally used in this field can now be viewed as misleading or inappropriate.[16] In the development
of this document, feedback from experts showed great variation in the use of these phrases in different
countries and contexts.
The Technical Committee has developed an informative guide on terminology related to caregiving
to show how these words and phrases are used across regions and disciplines and how they are
evolving over time. See: Terminology Related to Caregiving, available on the TC 314 website at: https://
[17]
committee .iso .org/ sites/ tc314/ home/ projects/ published/ resources .html .
This document can assist organizations in identifying and responding to these issues for working
carers.
In this document, the following verbal forms are used:
— “shall” indicates a requirement;
— “should” indicates a recommendation;
— “can” indicates a possibility or a capability;
— “may” indicates a permission.
© ISO 2021 – All rights reserved vii

---------------------- Page: 7 ----------------------
ISO/FDIS 25551:2021(E)

Information marked as “NOTE” is intended to assist the understanding or use of the document. “Notes
to entry” used in Clause 3 provide additional information that supplements the terminological data and
can contain requirements relating to the use of a term.
viii © ISO 2021 – All rights reserved

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FINAL DRAFT INTERNATIONAL STANDARD ISO/FDIS 25551:2021(E)
Ageing societies — General requirements and guidelines
for carer-inclusive organizations
1 Scope
This document specifies requirements and provides guidelines for an organizational program for
working carers providing care to:
— adult care recipients (e.g. adults with cognitive, sensory, physical, and invisible disabilities, adults
with chronic or episodic conditions and older dependents);
— long-term childcare recipients (e.g. due to chronic illness or permanent cognitive, sensory or
physical disability or injury).
This document is applicable to any organization, regardless of size, sector or community setting (i.e.
urban, rural or remote).
This document can be used in conjunction with an organization’s management systems, human
resource programs, and/or equity, diversity and inclusion programs, or on its own in the absence of a
formal workplace program to support working carers.
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 terminological databases for use in standardization at the following addresses:
— ISO Online browsing platform: available at https:// www .iso .org/ obp
— IEC Electropedia: available at http:// www .electropedia .org/
3.1
care
activities/actions (social, physical, emotional, spiritual, mental) that take place across a variety of
settings: in the home, community, institution and all care settings
Note 1 to entry: Applies to both paid and unpaid care.
3.2
care recipient
person who is receiving care from the working carer
3.3
care worker
care provider
person who is paid to support someone who is ill, struggling or disabled and who could not manage
without this help
Note 1 to entry: In some countries and regions, similar phrases include: home care provider, home health care
professional, personal support worker, personal care assistant, certified caregiver, trained carer, care specialist,
and health care professional.
© ISO 2021 – All rights reserved 1

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ISO/FDIS 25551:2021(E)

3.4
carer
caregiver
family caregiver
person who cares, unpaid, for a family member, friend or significant person who, due to a lifelong
condition, illness, disability, serious injury, a mental health condition or an addiction, cannot cope
without their support
Note 1 to entry: This term includes carers who are generally unpaid but can receive some financial support for
care they provide from time to time. It does not include trained care providers affiliated with home care agencies.
Note 2 to entry: Carers can provide emotional or financial support, as well as hands-on help with different tasks.
Caregiving can also be done from long distance.
Note 3 to entry: The terms “carer”, “family caregiver” and “caregiver” are often used interchangeably. “Carer”
is more commonly used in Europe, UK, New Zealand, and Australia. In North America, “caregiver” or “family
caregiver” is more commonly used. In Asia “carer” more commonly refers to a paid care provider.
3.5
family
combination of two or more persons who are bound together over time by ties of mutual consent, birth
and/or adoption or placement and who, together, assume responsibilities for various roles and functions
Note 1 to entry: The term “family” can include “chosen families,” such as strong friendships and communities
where unrelated persons provide care normally provided by nuclear family members.
3.6
unpaid care
care provided without a monetary reward by carers
Note 1 to entry: “informal care” is often used to describe unpaid care but is becoming less acceptable as it does
not reflect the complexity and essential nature of care that is provided. Unpaid care is labour and provides
significant value to families, health care systems and the economy.
3.7
working carer
individual in full or part-time work who also provides care to a family member, friend or significant
person and where the care responsibilities have a substantial impact on their working life
Note 1 to entry: Persons with disabilities can be working carers as well as care recipients.
Note 2 to entry: Commonly used term in UK, Nordic countries and Europe. In Canada, "carer-worker" or "employee
carer" are also used.
3.8
young carer
children and young people who provide regular and prolonged care for ill or disabled family members,
including those with addictions and mental health issues
Note 1 to entry: The upper age limit for young carers can vary from 18 to 25 years. Some countries are using the
term young adult carers to distinguish between the age categories of young carers.
3.9
absenteeism
time taken off work, including periods of paid or unpaid leave, to attend to non­work­related
responsibilities such as self­care or caregiving­related matters
Note 1 to entry: Absenteeism includes any kind or amount of time off work, such as sick or vacation days, leaving
work early, or coming into work late.
2 © ISO 2021 – All rights reserved

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ISO/FDIS 25551:2021(E)

3.10
accommodation
intentional organizational actions, whether in policies, programs, or the organizational culture, which
relieves work-family conflict
Note 1 to entry: Accommodation can include flexible work arrangements, such as working from home, flexible
working hours, job sharing or giving workers more autonomy over their work schedules.
3.11
consultation
process of seeking views before making a decision
Note 1 to entry: Consultation includes engaging health and safety committees and workers’ representatives,
where they exist.
[SOURCE: ISO 45001:2018, 3.5]
3.12
organizational culture
values, beliefs and practices that influence the conduct, behavi
...