The broken lens of BPSD:
Why we need to rethink the way we label the behaviour of people who live with Alzheimer’s disease 

by Susan Macaulay, November  2017


This article was published in the Journal of the American Medical Directors’ Association (JAMDA) on November 13, 2017

Problem: Assessing and reporting the behaviour of people living with dementia (PLWD) through the lens of the currently relied-on Behavioural and Psychological Symptoms of Dementia (BPSD) is problematic. Using the BPSD as an assessment tool can rob PLWD in long-term care facilities (LTCFs) and LTCF staff of their collective human rights and their quality of life, as well as their emotional well-being and dignity.

Significance of the problem: The problem of judging the behaviour of PLWD through the artificial construct of BPSD is pervasive, persistent and systemic.[1] Hundreds of thousands of PLWD and their care partners are currently negatively impacted by the inaccurate perceptions that result from seeing behaviour through the BPSD lens. Without a massive paradigm shift, this problem will only worsen, as the number of PLWD is projected to rapidly increase in the coming years.

Discussion: I will illustrate the gravity of this problem with one qualitative case study (my mother) and the results of quantitative research conducted by myself for this purpose, which together tell a compelling story that demands immediate remedial action.

In the summer of 2013, I initiated legal proceedings to gain control of my mother’s care from another family member. In the lead-up to the court hearing, the long-term care facility in which my mother resided produced nine months’ worth of nurses’ notes as proof that my mother needed antipsychotic drugs to control her behaviours,which, they said, were BPSD resulting from the progression of her Alzheimer’s disease.

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