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International Alliance of ALS/MND Associations

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      • 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

  • Graham Johnson, MND Australia

    Graham Johnson, MND Australia

  • Bjarne Hytjanstorp, ALS Norge, Norway

    Bjarne Hytjanstorp, ALS Norge, Norway

  • Denis Blais, Diagnosed 2015 , ALS Canada

    Denis Blais, Diagnosed 2015 , ALS Canada

  • Kris Van Reusel, Belgium

    Kris Van Reusel, Belgium

  • Anita Forte, Les Turner ALS Foundation, USA

    Anita Forte, Les Turner ALS Foundation, USA

  • Jo Knowlton and her dog, Scotland

    Jo Knowlton and her dog, Scotland

  • Bruno Leanza Mantegna, Diagnosed 1999 , AISLA Onlus, Italy

    Bruno Leanza Mantegna, Diagnosed 1999 , AISLA Onlus, Italy

  • Fabio Correia

    Fabio Correia

  • Andrea Zicchieri, Associazione conSLAncio Onlus, Italy

    Andrea Zicchieri, Associazione conSLAncio Onlus, Italy
    AndreaZicchieri_conSLAncioItaly

  • Brigitte Wernli,  Association ALS Switzerland,  Diagnosed 2014

    Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014

  • Chen Chun-Chin

    Chen Chun-Chin

  • Joy Blakeley, Diagnosed 2017 , MND Australia

    Joy Blakeley, Diagnosed 2017 , MND Australia

  • Guoqiang Xu, Diagnosed 2016 , Shaanxi ALS Association, China

    Guoqiang Xu, Diagnosed 2016 , Shaanxi ALS Association, China

  • Xian-Zhang Niu, Diagnosed 2006 , Shaanxi ALS Association, China

    Xian-Zhang Niu, Diagnosed 2006 , Shaanxi ALS Association, China

  • Daniel Hare

    Daniel Hare

  • Colm Francis Davis, Ireland

    Colm Francis Davis, Ireland

  • Charlie “Hark” Dourney, Diagnosed 2007 , Hark ALS, USA

    Charlie “Hark” Dourney, Diagnosed 2007 , Hark ALS, USA

  • Kirsty Gerlach, MND New Zealand, Diagnosed 2017

    Kirsty Gerlach, MND New Zealand, Diagnosed 2017

  • Joanne Pratt, Diagnosed 2011 , MND Australia

    Joanne Pratt, Diagnosed 2011 , MND Australia

  • Sébastien Batiot, Diagnosed 2012 , ARSLA, France

    Sébastien Batiot, Diagnosed 2012 , ARSLA, France

  • David Watson,  MND Scotland,  Diagnosed 2018

    David Watson, MND Scotland, Diagnosed 2018

  • Danny Reviers, Diagnosed 1979 , ALS Liga België, Belgium

    Danny Reviers, Diagnosed 1979 , ALS Liga België, Belgium

  • Dorette Lüdi, Diagnosed 2014 , ALS Schweiz, Switzerland

    Dorette Lüdi, Diagnosed 2014 , ALS Schweiz, Switzerland

  • David Solomon, Diagnosed 2015, MND Association of England, Wales and N Ireland

    David Solomon, Diagnosed 2015, MND Association of England, Wales and N Ireland

  • Mary Thomas, Diagnosed 2013 , MND Australia

    Mary Thomas, Diagnosed 2013 , MND Australia

  • Mike Rannie,  ALS Canada,  Diagnosed 2017

    Mike Rannie, ALS Canada, Diagnosed 2017

  • Len Johnrose,  MND Association,  Diagnosed 2017,  England

    Len Johnrose, MND Association, Diagnosed 2017, England

  • Oliver Juenke, DGM, Germany

    Oliver Juenke, DGM, Germany

  • Horacio Fritzer, Argentina

    Horacio Fritzer, Argentina

  • Calum Ferguson, Diagnosed 2010 , MND Scotland, UK

    Calum Ferguson, Diagnosed 2010 , MND Scotland, UK

  • Susan Keldani, Les Turner ALS Foundation, USA

    Susan Keldani, Les Turner ALS Foundation, USA

  • Glen Elison,  ALS Hope Foundation,  Diagnosed 2019,  USA

    Glen Elison, ALS Hope Foundation, Diagnosed 2019, USA

  • Zelina Brito, Diagnosed 2018, Brazil

    Zelina Brito, Diagnosed 2018, Brazil

  • Luis Antonio Pimenta Lima, Brazil

    Luis Antonio Pimenta Lima, Brazil

  • Emilienne Verhaegen, ALS Liga Belgium, Diagnosed 2014

    Emilienne Verhaegen, ALS Liga Belgium, Diagnosed 2014

  • Frank "Papa" Taylor

    Frank “Papa” Taylor

  • Roy

    Roy
    roy

  • Jon Newsome, Les Turner ALS Foundation, USA

    Jon Newsome, Les Turner ALS Foundation, USA

  • Purningam Jacob, Diagnosed 2012 , Asha Ek Hope Foundation, India

    Purningam Jacob, Diagnosed 2012 , Asha Ek Hope Foundation, India

  • Susan Anderson, Diagnosed 2014 , Hope Loves Company,  USA

    Susan Anderson, Diagnosed 2014 , Hope Loves Company, USA

  • Jorge Melo, ABrELA, Brazil

    Jorge Melo, ABrELA, Brazil

  • Karl Hughes, Diagnosed 2010 , IMNDA,  Ireland

    Karl Hughes, Diagnosed 2010 , IMNDA, Ireland

  • Dad

    Dad

  • Art Eggert, USA

    Art Eggert, USA

  • Armando González Gómez, ACELA, Colombia

    Armando González Gómez, ACELA, Colombia

  • Guido De Mets, Belgium

    Guido De Mets, Belgium

  • Jan Zuring, Diagnosed 2010 , The Netherlands

    Jan Zuring, Diagnosed 2010 , The Netherlands

  • Sanjay Kumar Srivastava, Asha Ek Hope Foundation for ALS/MND, Diagnosed 2018, India

    Sanjay Kumar Srivastava, Asha Ek Hope Foundation for ALS/MND, Diagnosed 2018, India

  • Zabun Nassar, MND Association, Diagnosed 2016, England

    Zabun Nassar, MND Association, Diagnosed 2016, England

  • Eric Von Schaumburg, USA

    Eric Von Schaumburg, USA

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