Handicap Vie Dignité

HVD is a non profit organization, whose mission is to advocate for the participation of adults who require long term care services and their unpaid caregivers in the decision-making about the goals of their care and quality of life in health and social service organizations.

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Susan Macaulay

Susan Macaulay

SUSAN MACAULAY, B.A. (Communications), Concordia University

Author, blogger (MyAlzheimersStory.com), advocate, activist against the inappropriate use of antipsychotic drugs in long-term care

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Susan Macaulay was the primary care partner for her mother who lived with dementia. As a result of her experience, she became a passionate care advocate for better care for people who live with Alzheimer disease and other dementias. She is an outspoken activist for better elder care who  has chosen to dedicate her life to her mom and the countless others, like her, who were  (and who still are) inappropriately medicated with antipsychotic drugs. She strongly believes that we must question and find alternatives to the generalized use of chemical  and physical restraints in long-term care settings and that we must do so in order to respect residents’ rights  to dignity and informed consent. She has facilitated workshops for students, care partners and care workers. Her  beliefs are based on personal  observations, exchanges with other care partners worldwide and the most recent pioneering research in the field. She is also a prolific blogger whose articles have been published in the Journal of the American Medical Directors Association: JAMDA , a leading peer-reviewed publication for practical information and research directly applicable to healthcare professionals providing post-acute and long-term care (PA/LTC), as well as policy-makers, organizational leaders, educators, and advocates :

  •  « Efforts to Reduce Antipsychotic Use in Dementia Care are Starting to Bear Fruit, but a lot of Work Remains to be Done » Journal of the American Medical Directors Association (JAMDA).  January 2017, pp. 204-206.
  • « The Broken Lens of BPSD: Why We Need to Rethink the Way We Label the Behaviour of People Who Live with Alzheimer’s Disease »,  Journal of the American Medical Directors Association (JAMDA) February 2018, Volume 19, Issue 2, pp. 177-180.