There is irrefutable evidence that prescribing antipsychotic drugs to people who live with dementia does more harm than good in most cases. These drugs are NOT approved for use in dementia care in most countries.
So why are physicians still prescribing these medications to people who live with dementia?
Because physicians:
are often pressured by care partners, family members and/or care workers and nurses to provide a “magic pill” that will fix situations that care partners, family members and care workers find challenging
aren’t aware that non-pharmacological interventions are more effective than drugs in changing behaviour of people living with dementia that dementia care partners and care workers find challenging
don’t have time to properly counsel dementia care partners, care workers and others in effective non-drug interventions
don’t fully understand the negative impact and harmful side effects that antipsychotic drugs have on people who live with dementia
believe (erroneously!) that they are doing the right thing
Sometimes I lose hope that dementia care will ever change. It often feels as if we’re going backward instead of forward. Then someone such as Wendy Carr inspires me and renews my hope.
When Wendy began commenting on the My Alzheimer’s Story’s Facebook page in 2018, I was struck by her practical wisdom (see one of her quotes below). It was clear from her comments that she worked in a long-term care facility, and that she was keen to create change. I wanted to know more about her, because we need people like Wendy “on the ground,” changing the system and making a difference in the lives of people who live with dementia in care facilities right now.
I connected with Wendy, and asked her to tell me more about herself; here’s what she wrote:
“I was a Registered Nurse (RN), with experience in Theatre, Ophthalmology, Aged Care and Psychiatry. I left work to care for my sister, then my mum, and then, sadly, my husband. They all wanted to die at home, not in a hospital or palliative care setting. We were able to do this with a huge amount of assistance from Little Haven, a not-for-profit we have in my area. It was a privilege for me to care for my family members at home until they died, although it was emotionally very difficult – much more so for me than if they had been in a hospital or care home. For people to die at home is almost taboo here in Australia, so those who wish to go that route have little support. My Welsh background views death differently I think.
Because I was out of paid nursing for so long while caring for my family members, I would have had to retake full training to become registered again. Financially, with three children, that was impossible. So I returned to Aged Care as a Nursing Assistant, and was offered a position in the dementia unit. It is brilliant work, albeit at poor wages. One of the things I most appreciate about being a nursing assistant is that it’s the best place to initiate change. I also love the fact that I work so closely with the residents rather than attending to RN duties that often preclude the building of the vitally important relationships with the people we care for. I could return to university now, but I’m having way too much fun in this assistant role.
I work in a large one-hundred-and-sixty bed, purpose-built facility, which is amazing for a small country town in Queensland, Australia. The facility is set in a beautiful bush environment, and is transitioning from a task-oriented to a person-centred care model. Moving to understand the person’s reality is a hard concept for some carers to grasp. Many still believe any and all behaviours are caused by “the dementia” and cannot be altered or understood, so meds or restraints are still “go to” options when staff members are challenged by the behaviour of some residents. Australia has new laws to address the use of chemical and physical restraints in aged care, which is going to be a huge breakthrough. That said, it’s relatively easy to find loop holes. As with most laws, time will tell. I must admit I am impatient with the slow pace of change.
I have worked at this centre for seven years. It is a not-for-profit, and doing an amazing job. I prefer working night shifts. Although there is traditionally less staff at night, it can be the best time to build close relationships with residents. Nighttime “behaviours” require a complete reset of our own headspace!
In short, person-centred care (or wholistic nursing as I call it), is finally making inroads, and practices are starting to change. I’m old, but I’m so glad this shift is happening because my desire to provide this kind of care is one of the reasons I became a nurse forty years ago.
Your page is so helpful in redefining attitudes especially as you had first-hand experience caring for your mother. You have helped me to realise I’m not completely mad in thinking we can do this better. Together, we can create a more positive experience for people who live with dementia, care workers and family care partners.”
We need more advocates such as Wendy Carr and Joanna LaFleur in dementia care to create new care models from the ground up! Thanks Wendy and Joanna for helping to change the face of dementia care worldwide.
I’m compiling evidence (I’ve got LOTS of it!) to include in letters of complaint to the College of Physicians of Quebec and the Order of Nurses of Quebec regarding the “care” my mother received while in a dementia jail from 2012 to 2016.
One of the environmental aspects that contributed to Mom’s anxiety and agitation was the volume and nature of the noise around her. For the first eighteen months she was there, Mom was forced to sit in an armchair beside a busy elevator and across from the facility’s call bell panel. The panel buzzed constantly and loudly. I found it extremely annoying; so did Mom. But was it just us? I decided to solicit other opinions with a mini survey.
I invited online friends and fans to listen to a 20-second audio clip:
Then I asked them to answer three questions. When I had more than sixty responses, I did an analysis. I wasn’t surprised by the results.
Question 1:
None of the respondents found the sound calming. Only three found it neutral. The large majority (83%) found the sound annoying, and nine respondents (i.e. 13% of all respondents) found it beyond annoying (for a total of 96% saying it was unpleasant in some way); those who answered “other” described it like this:
Oh my shattered nerves, horrible……I just wanted it to stop!!!
anxiety-provoking as it endures. it is indicating something is wrong, yet I don’t know what is wrong and I also can’t fix the problem
Stressful
Irritating
Distressing
so scary… a violent aggression to my ears, to my body, to my heart, to my soul! Panic… a sense of being trapped… attacked with no way out! Thank god for the sound of your soothing voice
most uncomfortable – didn’t like it at all
Almost painful
It hurts. I can’t think straight. It distracts and annoys me. I’m looking for ways to stop it.
Question 2:
Question 3:
The third and last “question” asked respondents to comment. When I did the analysis, Question 3 had generated 33 responses from a total of 68 respondents (i.e. 48% of all respondents left comments). Twenty of those who commented (i.e. 29% of all respondents and 61% of those who commented) expanded on the annoyance factor:
I have six five-year-olds in my care. I enjoy getting them rowdy, busy and boisterous. This background sound is detrimental to me and anyone who can hear it. I played it to my band of five-year-olds through a speaker. They clapped their hands over their ears. One told me to “make it shut up!”
I work at a specialized Dementia facility and this would freak out my residents
I don’t have alzheimer’s but I do have epilepsy and sounds like that really bother me especially high pitched ones.
Chaotic feel
Noise was painful
Those sounds make my brain crazy
No-one should have to put with that racket!
Get me out of there… fast.
I think this sound would be really annoying to a person with Alzheimer’s
I’m a carer and, if I didn’t like it, I’m sure my husband who has AD wouldn’t either.
I have extremely sensitive hearing and noises like this jangle my nerves.
that sound left me very unsettled…
hurts my head!
The sound is annoying, high pitched and likely induces anxiety in someone with dementia. A softer bell or other ringtone or even music could be a much better alternative.
Very annoying sound
Seems sound would cause severe stress over time.
Incredibly irritating sound, would make me furious if I was subjected to it for a long time.
I hated the noise – it set my teeth on edge & I wanted it to stop immediately.
curious when we get more info on the project, can’t imagine anyone would find it calming unless it reminds them of home (reminded me of a hotel I stayed in Lima)
Brought on anxiety
I received these additional comments on Facebook:
OMG, that was a very stressful 20 seconds!
I cant listen beyond 5 seconds. I can’t think. It eats into my brain. I want to make it stop. I put it through my speaker, I normally have music blasting through..it was hell. It hurts. I want it to stop.
Unnecessary, annoying in a sense heightening manner, with my being on spectrum may affect me differently, but it was just shy of neurological torture in that short span alone.
And one friend quipped that it wouldn’t be long before he’d take a sledge hammer to the sound panel.
If people who DON’T live with dementia find something in the environment annoying and agitating, what might it be like for those who DO live with dementia? It’s really not that hard to figure out what environmental factors might be distressing to someone who lives with demential. All you have to do is ask yourself what you find irritating and/or distressing, and put yourselves in their shoes.
The oh-so-irritating call bell alarm panel sound was eventually changed to something more like a “ping,” but only after Mom had been there for about eighteen months. And that wasn’t the only anxiety producing noise she had to endure. She had always hated loud sounds. It must have been unrelenting torture for her to be imprisoned in such a noise-filled environment. No wonder she was “agitated.”
Yes, there are solutions to addressing situations and behaviour that care partners and care workers find challenging. In most cases finding a solution involves thinking out of the box, which is what the staff at this gentleman’s care home did. He wanted to tap and clap, which people around found disturbing. Staff were stumped initially, but then they came up with an innovative solution as shown in the video below.
This is an outstanding application of a “Responsive Behavior” Assessment. Our partners at Mt. Bachelor Memory Care sent us this video with the following message: “This individual has a habit of clapping his hands or rapidly tapping silverware on the table. Staff were making him wear gloves and taking his silverware away and replacing it with plastic, this caused him to disengage. I worked with the team using the form and this is what we came up.” [Shared with permission]
The innovative team at Mt. Bachelor looked at an individual’s behavior, understood it as a response to a need, and found an alternative to meet that need which is appropriate and meaningful. Rather than allowing the person to retreat or disconnect, they adapted the environment to everyone’s benefit. Well done!
Frontier Management‘s Mt. Bachelor Memory Care is a Gold Credentialed Montessori Inspired Lifestyle Community in Bend, OR. The commitment and care shown here demonstrates why they deserve that award.
The “form” they refer to above was developed by the Center for Applied Dementia Research, and is part of their training in the Montessori approach to dementia care.
I should have known better than to invite my photographer friend Edith to do a day-in-the-life photoshoot of Mom and I on a Friday.
I had intended for Edith to capture in images the wonderful time Mom had when I brought her to my place for lunch or dinner. I wanted to show how well she was able to function, how she helped me make lunch, how close we were, how capable she was, and how much we enjoyed spending time together.
But Friday was bath day. That meant Mom was more likely to be even more drugged than usual. Why? Because she “resisted” being undressed and put in the noisy whirlpool bath with a sling-like lift that must have frightened her. Sometimes she resisted “violently,” just as 98 per cent of “normal” people would under similar circumstances (per my Short Survey on Behaviour). Adding fuel to the fire was Betsy,* the nurse who gave the baths; she was as mean as a junkyard dog. I don’t recall ever seeing her smile during my four years of daily visits to Mom’s dementia jail. On several occasions, she mocked Mom right in front of me; in one instance making fun of the fact that Mom had to pull herself along with her feet in the wheelchair to which she eventually became confined. Mom wasn’t the only resident I witnessed being subjected to Betsy’s abuse, and one of the care workers confided in me that she would sooner send her mother to hell than place her in a home that Betsy worked in.
Betsy was close to six feet tall, and solid. Real solid. They called her “the sergeant major.” Mom, on the other hand, was five foot two, osteoporosis having shrunk her a couple of inches in the previous decade. She was in her mid-eighties, living with dementia, and sedated with antipsychotic drugs because some of the staff–the ones who failed to engage her in ways that worked for her–found her challenging.
Mom’s bath time aggression was carefully recorded in the nurses’ notes I got copies of when I launched a legal bid to get control of her care in August 2013.
On April 12, 2013, for example, Betsy wrote:
Then a week later:
Hmmmm. So it wasn’t okay for Mom to call out for help when she felt threatened, and under attack, but it was perfectly fine for Betsy to do so?
I know Mom’s reactions could have been prevented with the right approach; I know it with one hundred per cent certainty. But Betsy either didn’t know the right approach, didn’t have time to use it or didn’t want to use it. Caroline or I helped Mom shower every morning for more than a year, and Mom never hit, slapped, kicked or pinched either of us. Ever. Sometimes she was slightly reluctant, saying she didn’t need a shower (for example), but we always managed to convince her, and the process always unfolded without incident. In fact, mostly it was a pleasant experience for her and for us. But Betsy didn’t use the right approach, and everything went pear shaped as a result.
Of course Mom and dementia were blamed for the “bad bath time behaviour,” and when things got really out of control, they gave her an extra dose of whatever to subdue her. That’s why and how she ended up like this on that failed photoshoot Friday in 2014:
This video of my catatonic mom haunts me. I can’t imagine anyone watching it without being shocked, even horrified. It reminds me of the final scenes of One Flew Over the Cuckoo’s Nest in which Jack Nicholson’s “troublemaker” character Randle McMurphy is made vegetative after being lobotomized. I remember crying when, out of love and compassion, McMurphy’s big native friend (Chief) kills him by smothering him with a pillow. I never dreamed I would one day see the same vacant look in my mother’s eyes.
“It was a barbarous procedure with catastrophic consequences, and yet it was once widely accepted and even earned a Portuguese doctor a Nobel Prize. In the annals of medical history, it stands out as one of medicine’s biggest mistakes and an example of how disastrously things can go wrong when a treatment is put into widespread use before it has been adequately tested.”
Maybe one day we will also stop giving antipsychotic drugs to people living with dementia for the same undeniable reasons, and they won’t be tortured and abused like my mother was for the last four years of her life.
The ways we see dementia and the people who live with it are changing, but not fast enough! Many of our perceptions remain distorted and damaging. These distorted and damaging perceptions result in poor care, stress and unacceptable outcomes.
What if we learned to ask better questions? What if we opened our minds to possibility and out-of-the-box solutions? What if we created a new world in which people who lived with dementia were not stigmatized, shunned, and isolated? What would that world look like? What would dementia care look like?
These 20 questions are meant to get people thinking about what the world might look like if we saw dementia and the people who live with it with new eyes:
What if we weren’t afraid of dementia and the people who live with it?
What if we viewed dementia as just another life challenge some of us have to face?
What if we understood that people who live with dementia are people until they die?
Isn’t it funny how we often walk through life without pausing to ask ourselves why we’re doing what we’re doing, or even if it’s important to do it? We march through our days robotically, repeating our routines and possibly making the same mindless mistakes without a second thought.
I’ve learned it’s useful to stop and ask myself if there might be a better way. Asking questions is one of the basic techniques used in most “helping” professions. Life coaches, business coaches, doctors, psychiatrists, psychologists, social workers, nurses, doctors, and others constantly ask questions. Why? Because questions are useful tools; they help us to:
Discover new information
Diagnose problems
Think more clearly
Generate ideas
Explore possibilities
See new perspectives
Reveal patterns
Provoke reflection
Encourage conversation
Stimulate participation
As a dementia care coach and care partner, I use a technique I call “20 questions” to help others better understand themselves, the people they care for, and the process they’re in. Anyone can use 20 questions to gain insight into any challenge or issue. All you need is a pencil and paper, or your favourite word processing package, your imagination and a topic. The rest is simple:
Put your topic at the top of the page
Brainstorm questions related to it
Write or type the questions on the page
Do not edit yourself; write whatever comes to mind
Don’t worry if some questions are similar or if you repeat
Keep going until you run out of questions
Do not try to answer the questions
Leave the questions to percolate for an hour, a day, a week or a month
When you feel ready, review the questions
Be open to the answers, ideas and solutions that emerge
Here are a couple of examples of dementia care issues I’ve delved into more deeply using 20 questions.
Blow ups
It happens to everyone at one time or another: we lose our temper with someone we love, we say things we don’t mean in the heat of the moment, and we’re wracked by guilt afterward. Here are my the first three questions (the other 17 are here):
Are you doing your best? If you are truly not doing your best, how could you do better? Are you trying to do too much? Are you stretched too thin? Do you have enough support?
Do you expect other people never to lose their patience and/or get angry? If you do, is that a realistic expectation and are others always able to achieve it?
I have learned through personal experience, reading and research that people with dementia (PWD) behave in logical, natural and understandable ways to stressful situations – just like most of the rest of us do. But there’s still a whole world of misunderstanding among family caregivers and professional care workers about behavioural expressions in people with dementia. I built this list: 20 questions that help explain why people with dementia get agitated and physically aggressive; here are three of the questions:
I have learned through personal experience, reading and research that people living with dementia (PLWD) behave in logical, natural and understandable ways to stressful situations – just like most of the rest of us do. They react as any “normal” person would, but their behaviour is attributed to the disease rather than to whatever catalyst actually sparked it.
I hope these questions will get you thinking about how “resisting” and “refusing” care might be understood and treated differently. I also hope it will prompt solutions other than a prescription pad and antipsychotic drugs.
20 questions to ask when someone living with dementia “resists” or “refuses” care
Is the person able to do this herself? Would she prefer to do it herself?
Is the care necessary? Could it be deferred or stopped altogether?
If a stranger were doing to me what I’m doing to her, how would I feel? What would I do? How would I react?
What tone of voice am I using? What kinds of words am I using? If someone were to speak to me like I’m speaking to him, how would I feel? How might I react? What would I do?
Do I have enough time to provide this care properly? Am I hurried and rushed? If I am hurried and rushed, might this be causing her to feel anxious or uncomfortable?
Some people say there are no stupid questions. I beg to differ. I regularly see stupid questions, or perhaps ignorant questions would be more accurate, being asked about people who live with dementia.
Often the questions come into my inbox from Quora. I answer the occasional one, like this query from a grandson for example. Most I ignore because the answers may be easily found with a quick google search.
Then there are the questions such as this that make me hot under the collar: “What does it mean when a person with dementia refuses food?” To which I couldn’t help but answer pointedly: “Oh for heaven’s sake. People with dementia are PEOPLE. Their behaviour is NORMAL. Ask yourself why you might refuse food, and you will have the answer to your question.”
I went on to give a list of thirty potential reasons someone living with dementia (or someone NOT living with dementia for that matter) might decline to eat:
He is not hungry
She doesn’t care for the food she’s being offered
He doesn’t like the way the food is presented (e.g. the colour, the texture, the fact that it’s pureed, or not, or it doesn’t even LOOK like food)
She doesn’t like the smell of the food
He doesn’t like the taste of the food / the food tastes bad.
The food is too hot or too cold
She is sick
She is tired and doesn’t feel like eating
He is in pain
Her tummy is upset, she has cramps
She’s having trouble swallowing and she’s afraid she might choke
He’s so sedated with drugs that he’s not interesting in eating or he physically can’t eat
She doesn’t remember how to use the utensils, and she doesn’t want to be impolite and use her hands
It’s not his usual mealtime; it’s too early or too late
Someone is telling her / giving her an order to eat and she hates people telling her what to do
Someone is trying to feed him, when he is perfectly capable of feeding himself
She needs help to eat, but she’s too afraid to ask or there’s no around to help her
It’s too noisy / it’s too quiet
She’s tired of eating the same thing all the time
The place he’s in is unfamiliar; he prefers to eat where he usually eats
She prefers to eat what she wants, and no one asked her what she wanted
The lights are too bright / the lights are too dim.
He feels constipated / she needs to go to the bathroom
She is surrounded by strange people and she wants to go home and eat with her family
She wants to sit with her friend at another table, but she’s not “allowed”
His dentures don’t fit properly and it’s hard for him to chew
She doesn’t seem to have her dentures anymore, and she can’t eat properly without them
Whenever he eats, he gets some kind of adverse reaction, so he’s refusing to eat to avoid the reaction
She saw someone crush pills into her food, and she doesn’t want to take the pills
No doubt there are other reasons I haven’t thought of. The important thing is to remember that people who live with dementia are just like the rest of us. They are human beings with thoughts, feelings, needs, likes and dislikes.
If we took the time to ask ourselves smart questions about why people who live with dementia behave as they do, we wouldn’t need to ask stupid and ignorant ones!
And BTW, all of this is yet ANOTHER reason we need to #BanBPSD.
My Alzheimer's Story 