Rethinking Dementia: Normal Human responses #2

Let’s STOP Pathologising Normal Human Responses

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.

take off the blindfolds and #BanBPSD: an open letter to the worldwide dementia community

“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.

16 thoughts on “Rethinking Dementia: Normal Human responses #2

  1. Most interesting. One of us)me) has dementia, the other is my carer, and we’ve written to you before. We have had nothing but the most wonderful support from family, friends and the people at Dementia Australia. There has been no bullying any kind. We live at home and are able to bring services in. Yet we hear what you say. We have ourselves wondered what would be the case if there were no carer living with the person with dementia. It seems to be a lottery. We have a friend who looks after her father almost every day, though he is in a nursing home, because she is not satisfied with the level of care he receives (he is 94 and she is a former senior RN). And there is a lot of terrible stuff on TV news that exemplifies what you are saying.

    I am not always sure which room in our house I am in, and have profound short-term memory loss. Yet I am able to wash, shower, dress myself and carry on a perfectly sensible conversation with anyone, provided that the subject is of more general significance than where did I put my lipstick!

    One thought to add to yours. The diagnosis of dementia seems to us to be extraordinarily haphazard, and a specialist we talked to, most sympathetic, said something like this, ”Look, I know that you want to hang on to a label for this disease. And I understand why. But please believe me that whatever label you use will miss much of what is happening to you and why it is happening. If you must have a label, why don’t you say, “I have a mild case of dementia”. That will serve as well as any, and it has the advantage, now that I’ve talked with you, of being decently accurate.’

    So that is our preferred style if anyone asks, though virtually all we encounter now anyway know her condition.

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  2. Thanks Kate, for sharing passages from and links to my open letter, which has received 1,100 views to date. I think all of our advocacy on this issue is super important and I’m so pleased that you are doing this series for #WAM2018. However, sometimes I wonder how much impact what we do (even collectively) really has on changing the minds of those who remain committed to the medical model. How to reach them remains a challenge imho; I think it’s a really tough nut to crack. Not sure how to address it… 😦

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  3. Hi Kate I agree whole heartily that It is the responsibility of others (those not living with the challenges of dementia) who have to learn new and better strategies to understand the needs of and communicate with people who are living with dementia. This means more education for staff, families, volunteers and health professionals to do this. But where it all can goes pear shape is the willingness to provide and fund this training?? It’s not a quick fix but it needs to happen or the current inappropriate cycle of drugs not appropriate listening, communication and understanding will just go on and on. “Our lives begin to end when we become silent about things that matter”. And this definitely matters x ness

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  4. Good on Susan for doing that and good on you for doing that project, Kate-i have really enjoyed reading all your posts on that-well done to you both for speaking out-and i am glad Susan is sharing her story-like her i recently reviewed my Grandads respite care and gave it a 5 out of 5-i will start following Susan’s blog. Best wishes to you both.

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      • Hi Kate, lovely to hear from you too. I am ok thanks, been very hard with my Grandpa. My Grandma is being very mean to my Grandpa-she said to me the other day that he goes to “daycare”-WTH. I was so mortified when she said that-he does not go to ‘daycare’ he goes to a dementia programme. Sick of her being cruel to my Grandfather. She is also making him go to places when he gets tired-really mean of her. No more home help for him, although we are planning on contributing some money for his birthday, my Grandma’s birthday, and my birthday next year, and christmas to pay for home help which is good. I have a great relationship with two of his ‘potential’ caregivers which is a big positive. Take care too.

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