For #WAM2018, and on day 3, I am continuing my series of blogs, highlighting why many other people also believe we need to BanBPSD. On June 9, 2018 Susan Macaulay wrote an open letter to members of the dementia community worldwide, highlighted below. She outlines what happened to her late mother, the harm caused by the term BPSD, and how it ensured her mother was wrongly chemically restrained.
Susan is an incredible advocate for all people with dementia, and for their families. Many of her blogs articulate well the problems we are all facing, and also offers many easy solutions.
We now need governments, health care providers, including doctors and nurses, and care providers, to listen, and then take positive action to ensure better care and support for everyone.
“Dear dementia educators, researchers, geriatric professionals, Alzheimer’s societies, associations, and organizations, and members of the worldwide dementia care community,
My mother spent most of the last four years of her life in a catatonic state because the people who were meant to care for her were blind.
They were blind because of what they had been taught. Teachers, trainers, supervisors and peers had told them Alzheimer disease causes the people who live with it to “wander,” “become aggressive,” “try to escape,” and “resist care,” among 101 other things. Unfortunately, when people who live with dementia (PLWD) respond in reasonable ways to adverse conditions and circumstances (RRACC), their actions are labelled “behavioural and psychological symptoms of dementia,” or BPSD, despite the fact that what they do is perfectly normal under the circumstances and in most cases has little if anything to do with dementia.
Later in her Open Letter, Susan provides a clear (and possibly more accurate than my original explanation!) of where the term BPSD came from:
The first two iterations of the IPA’s BPSD Educational Pack were “produced by the IPA under an educational grant provided by Janssen-Cilag,” a subsidiary of Johnson & Johnson Pharmaceuticals, the manufacturer and distributor of risperidone, which is marketed under the brand name Risperdal, and which was subsequently sold as a treatment for BPSD. Risperidone and other antipsychotics such as quetiapine (Seroquel) and haloperidol (Haldol) are still prescribed to PLWD despite being contraindicated for anything other than a diagnosis of psychosis and “black boxed” in the USA and other countries.
Further on, her letter says:
“Pain is one of the most common causes of BPSD.”
If this is true, then a PLWD’s reasonable response to pain is a behavioural and psychological symptom of experiencing pain, not of living with dementia. If, when the pain is addressed, the symptoms disappear, then the symptoms are a result of the pain, not of dementia, which remains after the pain is relieved. This same logic applies to all the “triggers” in the guide.”
Pain has little if anything to do with the pathology to dementia, and untreated pain also has NOTHING to do with the pathology of dementia. Many of the ways we respond to having dementia are completely normal; we need those supporting us to find ways to learn what it is we need, which may take time, more education, and some work on communicating with people who have dementia, and which may include varius types of aphasia or other cognitive changes and disabilities. It is others who have to learn and change, not the person with dementia.
I’ve also wondered if BPSD has led to a form of bullying by famileis and health care staff, as the expectation is on the person with dementia to ‘behave’ (act in ways others find easy to manage or reasonable!!!), and far too often, people with dementia are being blamed for their normal human responses…
But more about that in another blog this month!
Please do follow the link to read Susan’s open letter in full, if you ran out of time yesterday!
Ps. Check out DAI’s World Alzheimer’s Month daily #Hello my name is blog series with personal stories by members of Dementia Alliance International.