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International Alliance of ALS/MND Associations

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      • 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

  • Mauril Bélanger, Diagnosed 2015 , ALS Canada

    Mauril Bélanger, Diagnosed 2015 , ALS Canada

  • Timothy Holman, Switzerland

    Timothy Holman, Switzerland

  • Dr Shelly Hoover

    Dr Shelly Hoover

  • 393647_2252248542053_984912751_n

    393647_2252248542053_984912751_n

  • João Marcos Andrietta, Diagnosed 2008 , ABrELA, Brazil

    João Marcos Andrietta, Diagnosed 2008 , ABrELA, Brazil

  • Eddy LeFrançois, Diagnosed 1992,  ALS Canada

    Eddy LeFrançois, Diagnosed 1992, ALS Canada

  • Alberto Baez Murillo, Colombia

    Alberto Baez Murillo, Colombia

  • Margreth Burger-Saile, Diagnosed 2011,  ALS Schweiz,  Switzerland

    Margreth Burger-Saile, Diagnosed 2011, ALS Schweiz, Switzerland

  • Cassio Fernando da Silva, Diagnosed 2013 , ABrELA, Brazil

    Cassio Fernando da Silva, Diagnosed 2013 , ABrELA, Brazil

  • Fabrice Kamp, Germany

    Fabrice Kamp, Germany

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

    Guoqiang Xu, Diagnosed 2016 , Shaanxi ALS Association, China

  • Stephanie Christiansen Hall, Canada

    Stephanie Christiansen Hall, Canada

  • Richard Clark, MND New Zealand,  Diagnosed 2011

    Richard Clark, MND New Zealand, Diagnosed 2011

  • Jan Zuring, Diagnosed 2010 , The Netherlands

    Jan Zuring, Diagnosed 2010 , The Netherlands

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

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

  • Art Eggert, USA

    Art Eggert, USA

  • Ismail Gokcek, Turkey

    Ismail Gokcek, Turkey
    ismail_gokcek_alsmnd_tr

  • Maria Santos Garcia Tellez, Diagnosed 2017 , FYADENMAC, Mexico

    Maria Santos Garcia Tellez, Diagnosed 2017 , FYADENMAC, Mexico

  • Duncan Bayly , MND Australia

    Duncan Bayly , MND Australia

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

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

  • Conny van der Meijden, Diagnosed 2001,  ALS Netherlands

    Conny van der Meijden, Diagnosed 2001, ALS Netherlands

  • Amparo Muriel Engativa, Colombia

    Amparo Muriel Engativa, Colombia

  • Wiebke Braach, Deutsche Gesellschaft für Muskelkranke, Germany

    Wiebke Braach, Deutsche Gesellschaft für Muskelkranke, Germany

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

    Glen Elison, ALS Hope Foundation, Diagnosed 2019, USA

  • Timmy, ALS Liga

    Timmy, ALS Liga

  • Calum Ferguson, Diagnosed 2010 , MND Scotland, UK

    Calum Ferguson, Diagnosed 2010 , MND Scotland, UK

  • Joyce Rusinak, Forbes Norris ALS Center, USA

    Joyce Rusinak, Forbes Norris ALS Center, USA

  • March of Faces Photo Submission_OLGA_ELA ARGENTINA

    March of Faces Photo Submission_OLGA_ELA ARGENTINA

  • Jorge Melo, ABrELA, Brazil

    Jorge Melo, ABrELA, Brazil

  • Anita Forte, Les Turner ALS Foundation, USA

    Anita Forte, Les Turner ALS Foundation, USA

  • Irene McCaughey, Diagnosed 2011,  MND Australia

    Irene McCaughey, Diagnosed 2011, MND Australia

  • Claudia Gotti, Brazil

    Claudia Gotti, Brazil

  • Steve Lufkin, USA

    Steve Lufkin, USA
    IMG_3993

  • Rosie Riley, Les Turner ALS Foundation, USA

    Rosie Riley, Les Turner ALS Foundation, USA

  • Joy Blakeley, Diagnosed 2017 , MND Australia

    Joy Blakeley, Diagnosed 2017 , MND Australia

  • Joanne Pratt, Diagnosed 2011 , MND Australia

    Joanne Pratt, Diagnosed 2011 , MND Australia

  • Sharon Corosanite, Diagnosed 2014 , ALS Hope Foundation, USA

    Sharon Corosanite, Diagnosed 2014 , ALS Hope Foundation, USA

  • Oliver Juenke, DGM, Germany

    Oliver Juenke, DGM, Germany

  • Dad

    Dad

  • Alfredo Santos, Diagnosed 2013 , ACELA, Colombia

    Alfredo Santos, Diagnosed 2013 , ACELA, Colombia

  • Josée Kolijn-de Man, Diagnosed 2015 , ALS Patients Connected, The Netherlands

    Josée Kolijn-de Man, Diagnosed 2015 , ALS Patients Connected, The Netherlands

  • Steven Gallagher, Canada

    Steven Gallagher, Canada

  • Maurice LeClerc, ALS Canada

    Maurice LeClerc, ALS Canada

  • Hollister

    Hollister
    hollister

  • Liam Dwyer, England

    Liam Dwyer, England

  • Francisco Perez Palop, Diagnosed 2013 , FUNDELA, Spain

    Francisco Perez Palop, Diagnosed 2013 , FUNDELA, Spain

  • Ada Garrido Benavidez, Diagnosed 2016,  FYADENMAC, Mexico

    Ada Garrido Benavidez, Diagnosed 2016, FYADENMAC, Mexico

  • Enzo Maccarrone, AISLA ONLUS, Italy

    Enzo Maccarrone, AISLA ONLUS, Italy

  • Dawn Morton, Diagnosed 2014 , MND Scotland, UK

    Dawn Morton, Diagnosed 2014 , MND Scotland, UK

  • Graham Johnson, MND Australia

    Graham Johnson, MND Australia

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