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International Alliance of ALS/MND Associations

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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

  • Jan Zuring, Netherlands

    Jan Zuring, Netherlands

  • Len Johnrose, England

    Len Johnrose, England

  • Mike Cels, Canada

    Mike Cels, Canada

  • H. Todd Kelly, USA

    H. Todd Kelly, USA

  • Susan Keldani, USA

    Susan Keldani, USA

  • Daniela Maria Daverio, Argentina

    Daniela Maria Daverio, Argentina

  • Lin Yong Yi, Taiwan

    Lin Yong Yi, Taiwan

  • Bayley, Australia

    Bayley, Australia

  • Steve Gallagher, Canada

    Steve Gallagher, Canada
    Picture1

  • Graham Johnson, Australia

    Graham Johnson, Australia

  • Mona H. Bahus and Camilla Knoff Glomstad, Norway

    Mona H. Bahus and Camilla Knoff Glomstad, Norway

  • Erwin Coppejans, Belgium

    Erwin Coppejans, Belgium

  • Ismail Gokcek, Turkey

    Ismail Gokcek, Turkey
    ismail_gokcek_alsmnd_tr

  • Ching-Liang Chu, Taiwan

    Ching-Liang Chu, Taiwan

  • Malu Araujo Ribeiro, Brazil

    Malu Araujo Ribeiro, Brazil

  • Jeff Sutherland, Canada

    Jeff Sutherland, Canada
    jspic

  • Sanjay Kumar Srivastava, India

    Sanjay Kumar Srivastava, India

  • Gudjon Sigurdsson, Iceland

    Gudjon Sigurdsson, Iceland

  • Dr. Janmejay Pradhan, India

    Dr. Janmejay Pradhan, India

  • PALS and CALS, Singapore

    PALS and CALS, Singapore

  • Steve

    Steve

  • Dick Dayton, USA

    Dick Dayton, USA

  • Bob Simonds, USA

    Bob Simonds, USA

  • Magdalena Ayala Rodríguez, Mexico

    Magdalena Ayala Rodríguez, Mexico

  • Orly Dichoso, Canada

    Orly Dichoso, Canada

  • Jose Espinosa, Argentina

    Jose Espinosa, Argentina

  • Guido De Mets, Belgium

    Guido De Mets, Belgium

  • Luis Antonio Pimenta Lima, Brazil

    Luis Antonio Pimenta Lima, Brazil

  • Christian Bär, Germany

    Christian Bär, Germany

  • David Solomon, UK

    David Solomon, UK

  • Steve Lufkin, USA

    Steve Lufkin, USA
    IMG_3993

  • Daniel Hare, USA

    Daniel Hare, USA

  • Yessenia Hernandez Mendoza, Mexico

    Yessenia Hernandez Mendoza, Mexico

  • Alfredo Santos, Colombia

    Alfredo Santos, Colombia

  • Robbie Caliste, UK

    Robbie Caliste, UK

  • Ada Garrido Benavidez, Mexico

    Ada Garrido Benavidez, Mexico

  • Emilienne Verhaegen, Belgium

    Emilienne Verhaegen, Belgium

  • Catherine Pearce, Australia

    Catherine Pearce, Australia

  • Zabun Nassar, England

    Zabun Nassar, England

  • Ana Lilia Rodriguez, Mexico

    Ana Lilia Rodriguez, Mexico

  • Ann Nicol, USA

    Ann Nicol, USA

  • Bob Spurrier, USA

    Bob Spurrier, USA

  • Hiroshi Matsuyama, Japan

    Hiroshi Matsuyama, Japan

  • Natalya Rybakova, Russia

    Natalya Rybakova, Russia

  • Imelda Arenas, Colombia

    Imelda Arenas, Colombia

  • Natalya Rybakova, Russia

    Natalya Rybakova, Russia

  • Denis Blais, Canada

    Denis Blais, Canada

  • Ian Roberts, Australia

    Ian Roberts, Australia

  • Jorge Melo, Brazil

    Jorge Melo, Brazil

  • Anthony Lynch, Australia

    Anthony Lynch, Australia

Learn more about the March of Faces

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