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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

  • Ian Gale, Australia

    Ian Gale, Australia

  • Steve Lufkin, USA

    Steve Lufkin, USA
    IMG_3993

  • Ywan Dierick, Belgium

    Ywan Dierick, Belgium

  • Mikey Stone, ALS

    Mikey Stone, ALS

  • Shay Rishoni, Israel

    Shay Rishoni, Israel

  • Fabio Carvalho, Brazil

    Fabio Carvalho, Brazil

  • Jorge Luis Fernández Romero, Mexico

    Jorge Luis Fernández Romero, Mexico

  • Lachlan Terry, Australia

    Lachlan Terry, Australia

  • Steve Gallagher, Canada

    Steve Gallagher, Canada
    Picture1

  • Joy Blakeley, Australia

    Joy Blakeley, Australia

  • Roxana Canova, Argentina

    Roxana Canova, Argentina

  • Brigitte Wernli, Switzerland

    Brigitte Wernli, Switzerland

  • Brian Parsons, Canada

    Brian Parsons, Canada

  • Marcelo Farinelli, Brazil

    Marcelo Farinelli, Brazil

  • Kirsten Harley, Australia

    Kirsten Harley, Australia

  • Erwin Coppejans, Belgium

    Erwin Coppejans, Belgium

  • Jack Buzby, USA

    Jack Buzby, USA

  • Fayette Underwood, USA

    Fayette Underwood, USA

  • Mark Miller, UK

    Mark Miller, UK

  • Jeff Sutherland, Canada

    Jeff Sutherland, Canada
    jspic

  • Andrea Zicchieri, Italy

    Andrea Zicchieri, Italy
    AndreaZicchieri_conSLAncioItaly

  • Philip Brindle, England

    Philip Brindle, England

  • Christian Bär, Germany

    Christian Bär, Germany

  • Andres Estevez Guersznik, Ireland

    Andres Estevez Guersznik, Ireland

  • Jon Newsome, USA

    Jon Newsome, USA

  • Francisco Perez Palop, Spain

    Francisco Perez Palop, Spain

  • Marcel R. Wernard, Netherlands

    Marcel R. Wernard, Netherlands

  • David Solomon, UK

    David Solomon, UK

  • Sanjay Kumar Srivastava, India

    Sanjay Kumar Srivastava, India

  • Olga Cosentino, Argentina

    Olga Cosentino, Argentina

  • Murat Morali, Turkey

    Murat Morali, Turkey

  • Imelda Arenas, Colombia

    Imelda Arenas, Colombia

  • Claire Garry, USA

    Claire Garry, USA
    20200117_214643

  • Oscar Mauricio Linares, Colombia

    Oscar Mauricio Linares, Colombia

  • Mona H. Bahus and Camilla Knoff Glomstad, Norway

    Mona H. Bahus and Camilla Knoff Glomstad, Norway

  • Chun Ju Xiao, China

    Chun Ju Xiao, China

  • Mauricio Dorin, Argentina

    Mauricio Dorin, Argentina

  • Angela Jansen, Germany

    Angela Jansen, Germany

  • Shay Rishoni, Netherlands

    Shay Rishoni, Netherlands

  • Josée Kolijn-de Man, Netherlands

    Josée Kolijn-de Man, Netherlands

  • Gisli Jonasson, Iceland

    Gisli Jonasson, Iceland

  • Lucy Lintott, Scotland

    Lucy Lintott, Scotland

  • Jo Knowlton, Scotland

    Jo Knowlton, Scotland

  • Jay Epstein, USA

    Jay Epstein, USA

  • Catherine Pearce, Australia

    Catherine Pearce, Australia

  • Irene McCaughey, Australia

    Irene McCaughey, Australia

  • Michael Lee, Australia

    Michael Lee, Australia

  • Zabun Nassar, England

    Zabun Nassar, England

  • Joyce Rusinak, USA

    Joyce Rusinak, USA

  • Jean

    Jean
    jean

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