Over the past 10 years, Susan Macaulay says dementia has become her life. A fierce advocate for people living with dementia, Macaulay runs the website My Alzheimer’s Story, where she discusses her own experience and shares resources for care partners. Macaulay also raises awareness about the overuse of antipsychotic drugs in dementia care, something she is passionate about changing after her mother’s experience in a long-term care facility. Macaulay’s voice is one of many in the call to re-examine how dementia care is thought of and facilitated — especially the use of the label BPSD.

BPSD stands for Behavioural and Psychological Symptoms of Dementia. This is the International Psychogeriatric Association’s (IPA) categorization of behaviours that are determined to be a result of dementia. The IPA further breaks down BPSD into two groups: psychological symptoms, such as anxiety or depression, and behavioural symptoms, such as aggression, wandering or screaming.

Geriatrician, author and public speaker Dr. Al Power argues that the categorization of these behaviours as symptoms of BPSD is fundamentally incorrect. “What the abbreviation says is that people do these [things] because they are symptoms of dementia. That’s a flawed assumption,” says Power. “I see [dementia] as an enabler of distress rather than the root cause. By saying these are symptoms of dementia means that we ignore a host of relational and environmental factors that are coming into play during any interaction.”

Power uses an example of a cold shower to demonstrate — while someone without dementia would turn the knob to make the water warmer, a person living with dementia who is being given a shower and is not able to communicate in the same way might react by screaming.

“The dementia does make the person less able to cope or communicate, but the root cause is not the dementia, the root cause is the cold shower,” says Power. “We all have times when we get angry or frustrated or scared and for us that’s part of the range of human expression. But for a person with dementia, these things become a ‘behaviour’ that somehow has to be ‘managed.’”

Macaulay witnessed this during her daily visits to her mother’s long-term care facility.

“What is often done [in the long-term care system in Canada] is people are medicated with antipsychotic drugs to make them more compliant because there aren’t enough [care workers] or they aren’t trained to engage properly with people who are living with dementia,” says Macaulay. “I saw all of that every day. It was distressing for both myself and my mom. She was given medications early in the morning and would be asleep for most of the day.”

Power and Macaulay would like to see the term BPSD removed from the language surrounding dementia care. Macaulay has a powerful survey on her website that uses the Nursing Home Behavior Problem Scale to ask respondents to consider what they would do in a similar situation. One such example is the ‘symptom’ of resisting care — Macaulay asks: “If a stranger tried to take your clothes off, would you resist?” Ninety-eight per cent of respondents said yes.

“Care workers and family members who are care partners need to put themselves in the shoes of the person living with dementia and ask themselves what they would do in the same circumstances,” says Macaulay. “That’s the first step.” [ ]