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International Alliance of ALS/MND Associations

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    • Approved Drugs
      • Nuedexta
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    • Drugs No Longer in Development
      • Amylyx – AMX0035
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Mental Health Support

A person living with ALS/MND may be challenged emotionally at all stages of the disease. Therefore, a multidisciplinary healthcare team includes support for mental health for people living with ALS/MND and their families. Mental health support throughout the progression of the disease can help a person cope with emotions that can be difficult to manage. Multiple healthcare professionals are available for mental health support for people living with ALS/MND and their families. The multidisciplinary healthcare team that can provide mental health support include:

  • General Practitioner
  • Counsellor
  • Psychologist
  • Psychiatrist
  • Social worker
  • Neuropsychologist
  • Occupational therapist
  • Spiritual or faith leader/counsellor
  • Complementary therapists

This multidisciplinary healthcare team can help a person living with ALS/MND cope with emotions regarding various aspects of their lives. Coping and coming to terms with a diagnosis, relationships, both familial and intimate, religious or spiritual faith, and managing symptoms of ALS/MND as they progress all impact a person living with ALS/MND.

Individuals with ALS/MND can also access their multidisciplinary healthcare team for treatment and management for anxiety, depression, and other mental health disorders. Medications are available for mental health in people living with ALS/MND.

In addition, the multidisciplinary healthcare team is available to help treat and manage potential symptoms of ALS/MND that affect cognition and behaviour, such as frontal temporal dementia symptoms.

Living with ALS/MND does not mean a person is alone. Support is always available.

For more information on mental health support, refer to the resources provided below.

Click on the icon below to visit our playlist of videos related to Mental Health Support.

The following are resources from Members of the International Alliance of ALS/MND Associations on the topic of Mental Health Support.

Psychological Treatment Program

Psychological support services are provided by a group of ALS trained, dedicated Psychologists and Registered Clinical Counsellors who volunteer their time to provide much-needed therapy and counselling to people affected by ALS. For people without extended health benefits, this service can be provided Pro Bono.

https://www.alsbc.ca/programs-services/psychological-treatment-program/

Language: English
Subject Areas: Mental Health Support, For People with ALS/MND, For Caregivers

What Can the Social Worker Do For You?

This resource discusses the social worker’s role as part of the multidisciplinary healthcare team for families affected by ALS/MND and for people living with ALS/MND. In addition, the type of support that a social worker can provide is discussed.

https://www.als-centrum.nl/kennisplatform/wat-doet-de-maatschappelijk-werker/

Language: Dutch, English
Subject Areas: Social Work, Mental Health Support, Multidisciplinary Healthcare Team, For People with ALS/MND, For Caregivers

What Does the Psychologist Do?

The ALS Centrum Nederlands discusses the role of a psychologist as part of the multidisciplinary healthcare team in this resource. In addition, information on the support a psychologist can provide to the patient, the caregiver and family of the person living with ALS/MND, and their healthcare team is discussed.

https://www.als-centrum.nl/kennisplatform/wat-doet-de-psycholoog/

Language: Dutch
Subject Areas: Mental Health Support, Psychologist, Multidisciplinary Healthcare Team, For People with ALS/MND, For Caregivers

Emotional Support for People With or Affected by ALS/MND

Information on supporting and managing emotions for people living with ALS/MND is provided in this guide. The guide, created by the MND Association (MNDA), outlines the multidisciplinary healthcare team that can help support mental health for a person living with ALS/MND. Tips and strategies for managing difficult emotions and emotional lability are also provided.

https://www.mndassociation.org/app/uploads/2020/07/Emotional-and-psychological-support.pdf

Language: English
Subject Areas: Mental Health Support, Multidisciplinary Healthcare Team, For People with ALS/MND

Coping with ALS/MND

This is a brief resource for people living with ALS/MND to help identify signs that they may need mental health support. The ALS Association (ALSA) discusses these signs and the treatment and support options available.

https://www.als.org/navigating-als/coping-with-als

Language: English
Subject Areas: Mental Health Support, For People with ALS/MND

Spiritual Guidance with ALS

The ALS Centrum Nederlands provides information about the spiritual counsellor’s role in supporting mental health and treatment for people living with ALS/MND. The impacts of spiritual guidance are also discussed and outlined in this resource.

https://www.als-centrum.nl/kennisplatform/geestelijke-begeleiding-voor-mensen-met-als/

Language: Dutch
Subject Areas: Mental Health Support, Multidisciplinary Healthcare Team, For People with ALS/MND

FYI: ALS, Cognitive Impairment, & Dementia

This resource provides detailed information for the multidisciplinary healthcare team about the effects of ALS/MND on cognition and frontal temporal dementia. In addition, information for care and management for people living with ALS/MND with these symptoms are discussed. The ALS Association (ALSA) also provides input on communicating these symptoms to people living with ALS/MND.

https://www.als.org/navigating-als/resources/fyi-als-cognitive-impairment-dementia

Language: English
Subject Areas: Mental Health, Dementia, Multidisciplinary Healthcare Team, For Healthcare Professionals

Changes in Thinking and Emotional Lability

The ALS Association provides this resource with information on symptoms of ALS/MND related to cognition, dementia, and depression. This information is intended for people living with ALS/MND and caregivers. People with ALS/MND and caregivers can find out more about these symptoms and how to manage and cope with them.

https://www.als.org/navigating-als/coping-with-als/changes-thinking-emotional-lability

Language: English
Subject Areas: Mental Health, Dementia, For People with ALS/MND, For Caregivers

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Care services

  • Genetic Counselling & Testing
  • Mental Health Support
  • Nursing and Symptom Management
  • Nutrition and Swallowing
  • Occupational Therapy and Activities of Daily Living
  • Physiotherapy and Mobility
  • Respiratory Care
  • Speech Therapy and Communication
  • Support for Family & Caregivers
  • Technology

  • Margarita Pizarro, Asociacion ELA Argentina, Diagnosed 2017, Argentina

    Margarita Pizarro, Asociacion ELA Argentina, Diagnosed 2017, Argentina

  • Chih Ching Darren Wong, MND Malaysia

    Chih Ching Darren Wong, MND Malaysia

  • Jorge Melo, ABrELA, Brazil

    Jorge Melo, ABrELA, Brazil

  • Wiebke Braach, Deutsche Gesellschaft für Muskelkranke, Germany

    Wiebke Braach, Deutsche Gesellschaft für Muskelkranke, Germany

  • Claudia Gotti, Brazil

    Claudia Gotti, Brazil

  • Luis Antonio Pimenta Lima, Brazil

    Luis Antonio Pimenta Lima, Brazil

  • March of Faces Photo Submission_ALEX_ELA ARGENTINA

    March of Faces Photo Submission_ALEX_ELA ARGENTINA

  • Shay Rishoni, Diagnosed 2011 - Prize4Life, Israel

    Shay Rishoni, Diagnosed 2011 – Prize4Life, Israel

  • Francisco Perez Palop, Diagnosed 2013 , FUNDELA, Spain

    Francisco Perez Palop, Diagnosed 2013 , FUNDELA, Spain

  • Den Haag, Diagnosed 2016 , The Netherlands

    Den Haag, Diagnosed 2016 , The Netherlands

  • Orlando Ruiz, Diagnosed 2001,  ACELA, Colombia

    Orlando Ruiz, Diagnosed 2001, ACELA, Colombia

  • John Dinon, MND Australia

    John Dinon, MND Australia

  • Sally Pauls, Diagnosed 2006 , Les Turner ALS Foundation

    Sally Pauls, Diagnosed 2006 , Les Turner ALS Foundation

  • Bob Simonds and Drew O'Neill , Les Turner ALS Foundation, USA

    Bob Simonds and Drew O’Neill , Les Turner ALS Foundation, USA

  • Eric Von Schaumburg, USA

    Eric Von Schaumburg, USA

  • Maurice Leclerc, Canada

    Maurice Leclerc, Canada

  • Sébastien Batiot, Diagnosed 2012 , ARSLA, France

    Sébastien Batiot, Diagnosed 2012 , ARSLA, France

  • Emilienne Verhaegen, ALS Liga Belgium, Diagnosed 2014

    Emilienne Verhaegen, ALS Liga Belgium, Diagnosed 2014

  • David Bishop

    David Bishop

  • Anthony (Tony) Lynch, MND New South Wales, Diagnosed 2016, Australia

    Anthony (Tony) Lynch, MND New South Wales, Diagnosed 2016, Australia

  • Mahmood Anwar, UK

    Mahmood Anwar, UK

  • Frank "Papa" Taylor

    Frank “Papa” Taylor

  • Timothy Holman, Switzerland

    Timothy Holman, Switzerland

  • 727747090571358167

    727747090571358167

  • Duncan Bayly , MND Australia

    Duncan Bayly , MND Australia

  • Rolf Mauch, Association ALS Switzerland, Diagnosed 2015

    Rolf Mauch, Association ALS Switzerland, Diagnosed 2015

  • Erwin Coppejans, Diagnosed 2007 , ALS Liga België, Belgium

    Erwin Coppejans, Diagnosed 2007 , ALS Liga België, Belgium

  • Ana María Zavala, FYADENMAC, Diagnosed 2019, Mexico

    Ana María Zavala, FYADENMAC, Diagnosed 2019, Mexico

  • Mauril Belanger

    Mauril Belanger

  • Valdomiro Xavier Honório, Brazil

    Valdomiro Xavier Honório, Brazil

  • Bjarne Hytjanstorp, ALS Norge, Norway

    Bjarne Hytjanstorp, ALS Norge, Norway

  • IMG_2658

    IMG_2658

  • Wendy Hendrickson, ALS Hope Foundation, USA

    Wendy Hendrickson, ALS Hope Foundation, USA

  • Mike Rannie,  ALS Canada,  Diagnosed 2017

    Mike Rannie, ALS Canada, Diagnosed 2017

  • Ana Lilia RodriguezApoyo Integral Gila A.C., Diagnosed 2018, Mexico

    Ana Lilia RodriguezApoyo Integral Gila A.C., Diagnosed 2018, Mexico

  • 393647_2252248542053_984912751_n

    393647_2252248542053_984912751_n

  • Jon Newsome, Les Turner ALS Foundation, USA

    Jon Newsome, Les Turner ALS Foundation, USA

  • Chris McCauley, Diagnosed 2015 , ALS Canada

    Chris McCauley, Diagnosed 2015 , ALS Canada

  • Tison, USA

    Tison, USA

  • Armando González Gómez, ACELA, Colombia

    Armando González Gómez, ACELA, Colombia

  • Alan Liz Ogg 29042016 000799 lo res

    Alan Liz Ogg 29042016 000799 lo res

  • Dick Dayton, USA

    Dick Dayton, USA

  • Michael Lee, Australia

    Michael Lee, Australia

  • Zelina Brito, Diagnosed 2018, Brazil

    Zelina Brito, Diagnosed 2018, Brazil

  • Timmy, ALS Liga

    Timmy, ALS Liga

  • Imelda Arenas, ACELA, Colombia

    Imelda Arenas, ACELA, Colombia

  • Claire Garry, USA

    Claire Garry, USA
    20200117_214643

  • Marcelo Farinelli, Diagnosed 2006, ABrELA, Brazil

    Marcelo Farinelli, Diagnosed 2006, ABrELA, Brazil

  • Fabio Carvalho, Associação Pró-Cura da ELA, Brazil

    Fabio Carvalho, Associação Pró-Cura da ELA, Brazil

  • Ann Nicol

    Ann Nicol

Learn more about the March of Faces

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