For many years, I have campaigned against the use of the harmful label, BPSD (Behavioural and Psycholoical Symptoms of Dementia), as believe strongly it was/is labelling normal human responses to issues such as a difficult diagnosis, and the multiple, ongoing violations of rights experienced by people with dementia once diagnosed,including death, as well as more cases of health incidents such as pneumonia, stroke and heart attacks. For example, in the UK, studies from around 2009-2012 estimated about 1,800 additional deaths per year due to the inappropriate use and overprescribing of antipsychotics to people with dementia. In Australia, an expert estimated about 700 premature deaths annually due to the same issue. It is my belief these deaths are caused in part by this paradigm.

It is clear medical doctors know this. Some have been invovled in the research to prove it, making it is curious that medical guidelines and government sites still refer to BPSD, or that doctors are still prescribing these harmful drugs to people with dementia.

Q: If the doctors and researchers involved in studies such as the HALT Study to reduce prescribing of drugs such as antipsychotics to people with dementia, why are they so married to the existence of BPSD, and not questioning it as part of the problem of harm to people with dementia, especially as some of those same people have started to use different terms for BPSD??????

The Covid-19 pandemic also provided significant evidence people with dementia were (still are) being held to a higher account than others experiencing distress.

Thankfully, there is a movement of activists holding the pharmaceutical industry and psychiatry to account, as they uncover multiple issues such as conflicts of interest in prescribing medications to people with mental illness, and other diagnoses such as ADHD, autism and so on. Many have had to resort to using the ‘Freedom of Information’ legislation in their activism, and it has become critical to finding the truth about the damage being done to so many people by BigPharma and psychiatry!

An article on a Substack account hosted by Illuminate the Illusion (noting, I do not know who this person is) further highlights the harm to people being caused by psychiatry. On reading the latest article, “The Ritalin Scandal We Were Told to Forget. This Is Child Abuse“, the part that stood out because it resonated with how people with dementia have been overmedicated and chemically restrained, is this:

“… Behaviours were medicalised.

Complex lives were simplified into symptoms.

…

No context.

Just a prescription pad and a justification that everyone else was doing it too.

This wasn’t healing. It was administrative psychiatry.“

I’ve repeatedly witnessed nurses and even paid carers in residential aged and dementia ‘care’ institutions request prescriptions over the phone, with doctors never seeing these patients. I’m using the term patient rather than resident or person with dementia, due to the so called patient-doctor relationship we are expected to believe exists when someone is being prescribed harmful drugs…

People with dementia are sytemically – and routinely – prescribed harmful drugs including antipsychotics, opioids, benzodiazepines, anticholinergics and corticosteroids. This is despite knowing even short term use can cause or increase the risk of stroke, heart attacks, pneumonia, falls and fractures, drug induced cognitive decline, and early mortality. Some are also known to increase cognitive disabilities.

Healthcare guidelines, such as those from the American Geriatrics Society, recommend avoiding many of these drugs in older adults due to their high-risk side effects, yet they are still being used a first line management in ‘care’. ECT is another really harmful ‘treatment’ which has gained some traction; when the heat is turned up about one harmful drug or treatment, BigPharma and psychiatry foist another one on us.

They do work perfectly as chemical restraint, and although non-pharmacological interventions are now considered first-line treatment for these so called behavioral and psychological symptoms of dementia, the chemical abuse continues… 

If we walked into a residential care facility and saw people still being shackled to chairs or beds, as they often were in the 1970’s when I was a young nurse, we’d all be outraged, but the silencing of residents with harmful drugs is too often written off as ‘their dementia is progressing”. Personally, I’d prefer shackles to chemical restraint!

It’s obviously easier to silence people with dementia through chemical (and physical) restraints than support them to overcome distress… And, Black box warnings don’t seem to matter.

Note: The term Behavioural and Psychological Symptoms of Dementia (BPSD) was introduced by the International Psychogeriatric Association (IPA), a term established following an expert consensus meeting by the International Psychogeriatric Association (IPA) in 1996, and updated in 2002. This meeting was funded by Johnson & Johnson. As some of my colleagues at the WHO and other organisations wonder, what if the so called ‘experts’ are wrong, and worse, then refuse to change when this is proven… Basically, we are all screwed!