Support for Family & Caregivers

Living with ALS/MND can be difficult for the individual and their family or close friends. Daily care for the person living with ALS/MND will often involve family members or close friends. Children and youth of a person living with ALS/MND are also often involved in daily care and are affected mentally and physically. Children and youth do not always know what is going on and may not know how to ask.

Discussing an ALS/MND diagnosis with children and youth can be difficult. There is much uncertainty regarding how the disease may progress that makes it difficult to explain and discuss ALS/MND with children and youth. In addition, the person living with ALS/MND may not be prepared to discuss or understand how it affects them. Children and youth may not be mature enough to fully understand but regardless of age, will want to know what is happening. They may seek out many avenues of information, such as the internet, to attempt to grasp the situation. Finally, grief, bereavement, sadness, and even guilt are common emotions for children, youth, and family members affected by ALS/MND.

While all caregivers have the right to regular training, resources, and education, individuals who take on a caregiving role are also affected emotionally, mentally, and physically. Caregivers take on many tasks and are often family or friends with the person. They usually take on the role of caregiver simultaneously with other roles such as parenthood for adults and student life for children/youth. This can all lead to burnout and frustration, particularly if there is little support. Coping with burnout may require support and other resources such as:

• Social worker
• Counsellor
• Psychologist
• Therapist
• Respite care workers
• Grief/bereavement services

Refer to the Fundamental Rights for People with ALS/MND and Caregivers to see the resources and support they should have the rights to access for the best care and quality of life

For more information on support for family and caregivers, refer to the resources provided below.

The following are resources from Members of the International Alliance of ALS/MND Associations on the topic of Support for Family & Caregivers.

My ALS Decision Tool

My ALS Decision Tool explains ALS care options in easy-to-understand language, breaking down the benefits and risks. The interactive tool also includes questions to help people living with ALS reflect on their needs and values. Based on each person’s answers, the tool suggests resources and next steps. My ALS Decision Tool launched in late 2021, is a web-based tool to help people living with ALS make informed health care decisions. It is the first of its kind resource in the US designed to help people living with ALS make complex medical decisions for essential aspects of their ALS care. My ALS Decision Tool currently has information about breathing and nutrition support devices. My ALS Decision Tool was co-produced with people living with ALS, caregivers, a health literacy technology company, international researchers, and health professionals.

https://lesturnerals.org/my-als-decision-tool/

Language: English
Subject Areas: Care and Support Guides and Manuals, For Clinicians, For Families and Caregivers, Navigating Healthcare Systems

ALS & Children

Children are impacted by ALS in many ways. In this guide, you will find information on how to talk with your children about ALS, how young people experience caregiving, and how to support your children during this time. Our intention is to provide you with information that you need today and tomorrow.

https://lesturnerals.org/wp-content/uploads/2022/06/Children-ALS-628.pdf

Language: English
Subject Areas: For Families and Caregivers, For Youth and Children

 https://amiquebec.org/kare/ 

Language: English, French
Subject Areas: For Families and Caregivers, For Youth and Children

Support for Children and Young People

Children and young people affected by an MND diagnosis can find information and support through this MNDA resource. This resource explains why a child or young person may need help and where they may find support. There is also information available through this resource on grants and support through their education.

https://www.mndassociation.org/support-and-information/children-and-young-people/young-carers-hub/support-for-young-carers/

Language: English
Subject Areas: Mental Health Support, For Children and Teens

ALS & Relationships, Sex, and Intimacy

Becoming a caregiver for someone with ALS is likely something you never thought you would have to do, and your relationship with your loved one is bound to change. In this guide, you will find tips on how to handle changing relationship dynamics as well as information on ALS and physical intimacy. Our intention is to provide you with information that you may need today and tomorrow

https://lesturnerals.org/support-services/als-learning-series-february-als-learning-series-webinar-als-relationships-sex-and-intimacy/

Language: English
Subject Areas: Care and Support Guides and Manuals, For Clinicians, For Families and Caregivers

Youth Education and Support

This page from the ALS Association (ALSA) contains three books developed for children and youth. The first is a graphic novel targeted towards children who are 7 to 12 years of age. A second is available for youth of 13 to 18 years of age. And the third is for young adults aged 19 to 25 which discusses how people of this age who are impacted by ALS/MND may manage their school, work, and lives while providing care and support to a loved one living with ALS/MND. Additional resources are also provided on this page for parents/guardians for how to support children and youth who are affected by a person living with ALS/MND.

https://www.als.org/navigating-als/resources/Youth-Education

Language: English (Graphic Novel available in English, French, Italian, German, and soon -Dutch)
Subject Areas: Mental Health Support, Support, Children and Youth, For Children and Teens, For Young Adults

ALS & Caregiver Self-Care

Caregivers can live fulfilling lives with the right support. Making sure you meet your own physical and emotional needs will help both you and your loved one with ALS. In this guide, you will find information on symptoms and causes of caregiver burnout as well as ways to prevent and deal with burnout.

https://lesturnerals.org/wp-content/uploads/2022/06/SelfCare-ALS-625.pdf

Language: English
Subject Areas: Care and Support Guides and Manuals, For Clinicians, For Families and Caregivers

Information for Young People

This resource, created by the MNDA, is for young people affected by ALS/MND. It breaks down what an ALS/MND diagnosis will look like, supports available to young people, and ways to build and enjoy time with family members living with ALS/MND.

https://www.mndassociation.org/support-and-information/children-and-young-people/young-carers-hub/information-for-young-carers/

Language: English
Subject Areas: Care and Support Guides and Manuals, For Clinicians, For Families and Caregivers

LUKi & the Lights

LUKi and the Lights is a silent film – using no language, only sound, to tell the story of LUKi the robot’s journey with ALS. Using the latest in visual technology, the film serves as a platform for children and families to discuss ALS and share with others. Created by Big Grin Productions, with support from the ALS Association, LUKi and the Lights will be made freely available across streaming platforms, and ALS/MND organizations around the world.

https://globalneuroycare.org/luki-and-the-lights

Language: No language, silent film
Subject Areas: Care and Support Guides and Manuals, For Clinicians, For Families and Caregivers

Guide for Family and Friends

This guide is catered to the family, friends, and caregivers of people living with ALS/MND. In this guide, the ALS Ligue Belgium discusses the importance of communication and support for people affected by ALS/MND. In addition, the multidisciplinary healthcare team for people living with ALS/MND and the changes that might occur with daily activities for a person living with ALS/MND is discussed.

https://als.be/en/node/211

Language: English, French, German, Dutch
Subject Areas: Mental Health Support, Multidisciplinary Healthcare Team, For Caregivers, For Children and Young People, For Parents

My ALS Communication Passport to Quality Care

You have a lot of information to keep track of, and this passport will help you do that. You will be able to share health information and care preferences with caregivers.

https://lesturnerals.org/wp-content/uploads/2022/07/BA-LTAF-CommunicationPassport_2022_Print-02.pdf

Language: English
Subject Areas: Care and Support Guides and Manuals, For Clinicians, For Families and Caregivers, Navigating Healthcare Systems

Families and ALS: Guide for Supporting Children and Youth

ALSA provides this guide for parents and guardians of children and youth affected by a family member’s diagnosis of ALS/MND. Information on how to communicate to children and youth about ALS/MND is discussed. This guide provides resources for support for children and youth and outlines how they may be a part of the caregiving roles.

https://www.als.org/sites/default/files/2020-04/YouthFamiliesManual-web.pdf

Language: English (soon to be in Dutch)
Subject Areas: Mental Health Support, Caregiving, Children and Young People, For Caregivers

At School Support For Children

The ALS Association (ALSA) provides this guide for teachers and educators of children and youth who are impacted by ALS/MND. This guide is concerned with the school staff and personnel who are working with and supporting children and youth impacted by ALS/MND.

https://www.als.org/sites/default/files/2020-09/Youth-Guide_At-School.pdf

Language: English
Subject Areas: Children and Youth Support, Mental Health Support, Education, For Teachers/Educators

Parents and Guardians

The MND Association (MNDA) provides this guide for parents and guardians who may need to explain an MND diagnosis to children and youth. This resource covers information on how to start the conversation with children and with teenagers. Additionally, the MNDA provides suggestions for other supports that may be useful for parents or guardians and children or teens.

https://www.mndassociation.org/support-and-information/children-and-young-people/parents-and-guardians/

Language: English
Subject Areas: Mental Health Support, Children and Teens, Parents and Guardians, For Caregivers

Bereavement Support

Support for grief and bereavement are discussed in this resource that the MNDA provides. This resource outlines the many aspects of grief that can occur when individuals are affected by an ALS/MND diagnosis. Moreover, the MNDA supplies links to additional support services that people affected by ALS/MND can access.

https://www.mndassociation.org/support-and-information/for-carers/bereavement-support/

Language: English
Subject Areas: Mental Health Support, Grief and Bereavement, For Caregivers, For Children and Young People, For People with ALS/MND

How to Help PALS

Information on caring for the caregiver is provided in this resource from the ALS Be. This resource discusses the stages of processing for caregivers of people living with ALS/MND. There is also information for caregivers on how to cope with feelings and find support.

https://als.be/en/node/210

Language: English, French, German, Dutch
Subject Areas: Mental Health Support, Burnout, For Caregivers

Support for Informal Care

The ALS Centrum Nederlands provides a brief overview of the role of the caregiver and support for some aspects of the position. This includes details about the definition of overload and respite, as well as support for both.

https://www.als-centrum.nl/kennisplatform/mantelzorg/

Language: Dutch, English
Subject Areas: Respite Care, For Caregivers, Mental Health Support

Coping with Burnout

The ALS Association created a page dedicated to defining burnout. Burnout is common for caregivers and other people affected by ALS/MND. The ALSA outlines the causes for burnout, the signs of burnout, and some solutions and support for burnout.

https://www.als.org/navigating-als/for-caregivers/coping-burnout

Language: English
Subject Areas: Mental Health Support, Burnout, For Caregivers

Respite Care

This guide is a resource for caregivers of people living with ALS/MND. The ALSA provides a step-by-step guide to gain respite care for caregivers as a means of mental health support and relief from burnout.

https://www.als.org/navigating-als/for-caregivers/respite-care

Language: English
Subject Areas: Mental Health Support, Respite Care, Burnout, For Caregivers

Caregiver Action

This website provides resources and tools for caregivers, though it is not limited only to caregivers of ALS/MND. A forum to connect with other caregivers and different ways to communicate with caregivers are available through this platform.

https://caregiveraction.org/

Language: English
Subject Areas: Support, For Caregivers