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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

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

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

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

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

  • Ann Nicol

    Ann Nicol

  • John and Loretta Russo, USA

    John and Loretta Russo, USA
    final3878

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

    Guoqiang Xu, Diagnosed 2016 , Shaanxi ALS Association, China

  • Natalya Rybakova, Russian Charity ALS Foundation

    Natalya Rybakova, Russian Charity ALS Foundation

  • Paul Launer, USA

    Paul Launer, USA

  • Dr Shelly Hoover

    Dr Shelly Hoover

  • Lombana, Spain

    Lombana, Spain

  • Joanne Pratt, Diagnosed 2011 , MND Australia

    Joanne Pratt, Diagnosed 2011 , MND Australia

  • Wendy Hendrickson, ALS Hope Foundation, USA

    Wendy Hendrickson, ALS Hope Foundation, USA

  • Shay Rishoni, Diagnosed 2011 - Prize4Life, Israel

    Shay Rishoni, Diagnosed 2011 – Prize4Life, Israel

  • MNDaSG Group PALS & CALS, Motor Neurone Disease Association, Singapore (MNDaSG)

    MNDaSG Group PALS & CALS, Motor Neurone Disease Association, Singapore (MNDaSG)

  • Zelina Brito, Diagnosed 2018, Brazil

    Zelina Brito, Diagnosed 2018, Brazil

  • Timothy Holman, Switzerland

    Timothy Holman, Switzerland

  • Liong Ting Ngu, MND Malaysia, Diagnosed 2014

    Liong Ting Ngu, MND Malaysia, Diagnosed 2014

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

    Cassio Fernando da Silva, Diagnosed 2013 , ABrELA, Brazil

  • Juvenal Bayona Romero

    Juvenal Bayona Romero

  • Ada Garrido Benavidez, Diagnosed 2016,  FYADENMAC, Mexico

    Ada Garrido Benavidez, Diagnosed 2016, FYADENMAC, Mexico

  • Sam Hayden-Harler, Motor Neurone Disease (MND) Association, UK

    Sam Hayden-Harler, Motor Neurone Disease (MND) Association, UK

  • Chun Ju Xiao, China

    Chun Ju Xiao, China

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

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

  • Bjarne Hytjanstorp, ALS Norge, Norway

    Bjarne Hytjanstorp, ALS Norge, Norway

  • Ian and Teresa Roberts

    Ian and Teresa Roberts

  • Ali Var, Turkey

    Ali Var, Turkey

  • Wilfried Leusing

    Wilfried Leusing

  • Inta Grubb, Diagnosed 2014,  MND Australia

    Inta Grubb, Diagnosed 2014, MND Australia

  • Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

    Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

  • Hollister

    Hollister
    hollister

  • Timmy, ALS Liga

    Timmy, ALS Liga

  • Luis Antonio Pimenta Lima, Brazil

    Luis Antonio Pimenta Lima, Brazil

  • Frank "Papa" Taylor, USA

    Frank “Papa” Taylor, USA

  • Alan Liz Ogg 29042016 000799 lo res

    Alan Liz Ogg 29042016 000799 lo res

  • Kirsten Harley,  Diagnosed 2013,  Australia

    Kirsten Harley, Diagnosed 2013, Australia

  • Feng Gin Sun, Diagnosed 2014 , Shaanxi ALS Association, China

    Feng Gin Sun, Diagnosed 2014 , Shaanxi ALS Association, China

  • Nicholas (Nic) Bowman, MND Association of South Africa,  Diagnosed 2016,  Australia

    Nicholas (Nic) Bowman, MND Association of South Africa, Diagnosed 2016, Australia

  • Ailsa Malcolm-Hutton, Diagnosed 2013,  MND Association of England, Wales and N Ireland

    Ailsa Malcolm-Hutton, Diagnosed 2013, MND Association of England, Wales and N Ireland

  • England-Lee-Millard, UK

    England-Lee-Millard, UK

  • Andrietta

    Andrietta

  • Phil Rossall, MND-Association, UK

    Phil Rossall, MND-Association, UK

  • Bob Simonds and Drew O'Neil, USA

    Bob Simonds and Drew O’Neil, USA

  • Art Eggert, USA

    Art Eggert, USA

  • Shera Mukherjee, Diagnosed 2013,  Asha Ek Hope Foundation, India

    Shera Mukherjee, Diagnosed 2013, Asha Ek Hope Foundation, India

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

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

  • Ian Roberts

    Ian Roberts

  • Leon Ryba, Argentina

    Leon Ryba, Argentina

  • Chih Ching Darren Wong, MND Malaysia

    Chih Ching Darren Wong, MND Malaysia

  • H. Todd Kelly, Diagnosed 2013 , ALS Hope Foundation, USA

    H. Todd Kelly, Diagnosed 2013 , ALS Hope Foundation, USA

  • Maria Lucia Wood Saldanha, Associação Pró-Cura da ELA, Brazil

    Maria Lucia Wood Saldanha, Associação Pró-Cura da ELA, Brazil

  • Monica Soriano, Diagnosed 2011 ,  Asociación ELA , Argentina

    Monica Soriano, Diagnosed 2011 , Asociación ELA , Argentina

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