On February 26, 2015, I received a registered letter from the facility in which my mom had resided for two and a half years requesting that I limit my visits to my mother to between the hours of 1 p.m and 3 p.m. on Monday, Wednesday, Thursday, Friday, Saturday and Sunday, and from 2:30 p.m. to 4:30 p.m. on Tuesdays.
Mom loved to have afternoon tea in the living room with me. Tea was from 3 p.m. to 5 p.m. The restrictions meant we would only be able to have tea together once a week on Tuesdays instead of every day as we had been accustomed to do. She also got a great deal of joy from Thursday morning sing-alongs; we would no longer be able to attend those either.
Furthermore, Mom was normally in a sedated antipsychotic sleep each day until about 3 p.m., which meant she would be sleeping during the time I was “allowed” to visit. I asked for the hours to be changed. My request was refused.
Denying family members access to the people they love is a form of abuse. The abuse and the number of people who are subjected to it in Canada is finally coming to light because of advocates like me, Mary, and Tanni. See our stories in the videos and links below.
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.
During the first two years Mom was in dementia jail, she was still able to walk. I would often bring her to my house (which was a three-minute drive up the hill), for supper, a music session or just to hang out.
We would talk about everything from soup to nuts. Sometimes our conversations were light and airy, sometimes they were emotional and difficult. When they were the latter, I made a special effort to be with her in whatever space she was in so we would be connected.
My life experience has taught me that some stuff can’t be fixed, no matter how hard you try to make it better. And as a care partner, I learned that people who live with dementia are human beings with feelings just like the rest of us. They struggle just like the rest of us. They want to succeed just like the rest of us.
When Mom and I struggled, we supported each other. We found these five things helped us get through tough times (maybe they’ll work for you too):
Here’s a real life example / demonstration from a conversation Mom and I had on April 10, 2013. I had brought her to my place for supper. We were struggling, and we didn’t know what to do:
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.
People living with dementia are LIVING. They are not dead, or gone or empty shells.
They are people with abilities, skills, wants, needs, feelings, and if we help them, purpose! It’s time to recognize that, and provide PLWD the support they need – not just in a few exceptional long-term care facilities, but everywhere. We need to ditch the medical model that’s been proven to be broken and replace it with dementia care that works.
Revolutionizing Dementia Care is all about doing that. It’s full of concrete examples of the kinds of things that create positive change.
Here’s the trailer:
More important, here’s the full meal deal (I strongly encourage you to watch it in its entirety):
This is not “pie in the sky,” nor is it rocket science (as I keep saying over and over and over again). Some long-term care facilities are able to provide the kind of care that allows people living with dementia to engage life until the very end. They help PLWD to find purpose, to enjoy life, to contribute to their communities, to love, to laugh and to live fully and meaningful lives.
A real-life interaction at Landermeads care home. Not staged, not stock, not faked.
It can be done, and it is being done right now in various places around the world including in Canada. We can use this life-changing model (and others that produce the same kind of results) to transform our broken eldercare system. EVERYONE benefits. Let’s do it!
Here are some great quotes from the video below to whet your appetite:
1 ) “What great dementia care is about is saying this isn’t rocket science to create, because I believe every human being knows what it is to be human. They know when they’re walking in somewhere: Does it feel right? Does it sound right? But what happens is we get told to be ‘professional,’ we get told to have distance and to be detached. But this constrains us and limits us as human beings in the care sector.” ~ Dr. David Sheard, creator of the Butterfly Model
2 ) “I can’t really think of caring any other way apart from how I’ve learned here. Which is by caring for the family members in a way that suits them more than it suits us.” ~ Alex King, Support Worker, Landermeads
3 ) “We don’t have an activities coordinator because activities aren’t something we’d bolt on at certain times during the day. We call it ‘occupation’ because people need to feel self-worth, they need to feel involved, and included in what we do, and the best way to do that is to occupy them every day with things that are going on as we would if we were at home.” ~ Ros Heath, Co-Founder and Director, Landermeads
4 ) “People who work in traditional care don’t really understand how to interact with people on a level where they’re emotionally attached to them. I think people here get very emotionally attached, and that’s something that brings out the best in the people who live here.” ~ Jay Heath Finance Director, Landermeads
5 ) “If you can make their lives happy, and have a good time, it doesn’t need to be a bad ending where you’re sitting in a corner, and you’re sad and you’re lonely and nobody’s talking to you. We’re about having fun and having a good time right until the end.” ~ Lisa Bishop, Nurse, Landermeads
6 ) “We absolutely live and breathe what we do, we believe in it, [because of] the evidence we have from the people that we look after. It’s just a joy to see how well people can live who have a dementia.” ~ Ros Heath, Co-Founder and Director, Landermeads
7 ) “This is controversial because in a care sector that’s largely driven by business, driven by models that have been taken from the healthcare systems of hospitals, in terms of clinical efficiency or in terms of what four-star hotel care looks like. But we know [from] our own lives that the greatest thing that helps us survive, that gives us a sense of well being is being loved. And I think [it’s] a huge threat to a professional sector to say that’s what transforms lives. That’s what creates staff who want to be [here]. That’s what reduces staff sickness [and] creates staff retention. That’s what stops people falling in the care home, that’s what stops infection rates – people can’t get their head around it. [The] care sector seems so scared to embrace that as the very core, and then build a business on it.” ~ Dr. David Sheard, creator of the Butterfly Model
Take a look at what is at the core of great dementia care (tissues recommended if you’re sensitive like me!):
I’ve shared parts of this story before. It’s an afternoon in October 2015. Mom appears to be asleep in the recliner when I arrive at the LTCF to visit. I lean over and put my hands on either side of the chair. My face is about arms length from hers.
“Patti?” I say to check if she’s really sleeping or just resting. When she opens her eyes, I know immediately she’s unhappy. I also know exactly what to do to minimize the likelihood of things deteriorating further. In the space of about an hour and a half, I created conditions under which Mom and I could move from bad to good instead of from bad to worse. There’s nothing magic about what I did, anyone can do it.
I thought it might help others to be able to hear our real-life conversation and the transformation we effected together. The five-minute audio below is divided into three segments. The first one is when I arrive to visit Mom; the second is about an hour later when her mood is shifting; and in the last segment we’ve gone all the way from sad to glad.
From sad to glad: an example of BANGS in action
Click here to listen (I highly recommend listening while reading to fully “get it”):
Read here:
Susan: We were both talking about nothing
Mom: Well that’s stupid.
Susan: That was stupid. (laughs) That was stupid, Mom.
(Susan turns down the loud music, which may have been contributing to Mom’s angry demeanour)
Susan: Pardon me?
Mom: You don’t lalalalala look stupid things.
Susan: I’m a silly Billy eh mom?
Mom: Yeah, and you’re stupid.
Susan: Am I? What have you got on your face here? It’s cake. (laughs) I’m happy to see you.
Mom: Well I’m not happy to see you.
Susan: No?
Mom: No. I’m not happy at all.
Susan: Are you mad at me?
Mom: Yeah, I am mad at you. Very mad.
Susan: Are you?
Mom: Yeah.
Susan: What have done?
Mom: Well it’s stupid.
Susan: I did a stupid thing?
Mom: Yeah.
Susan: Oh. Sorry about that.
Mom: Yeah, well it is stupid.
Susan: I didn’t mean it. I didn’t mean it. Is there anything I can do to fix it?
Mom: Well no, there’s nothing I can do to fix it. (Mom starts to “tap” Susan quite hard)
Susan: Oh god, you just whacked me. (The taps get lighter) Are those love taps or mad taps?
Mom: Mad taps.
Susan: Okay. Well at least they’re not very hard.
Mom: What do you mean hard?
Susan: Oh my goodness.
Mom: That’s awful thing to do.
Susan: I don’t know what I did, but whatever it is, I’m sorry I did it.
Mom: Well why did you do whatever stupid it was?
Susan: I don’t know. I made a mistake. I’m sorry.
Mom: Well, it’s sort of stupid that you didn’t –
Susan: I know I admit it. I admit it. I was stupid. I know. I don’t know why I did it Mom. It was a mistake. Is there anything I can do to fix it?
Mom: No!
Susan: Oh. Okay. Because if there was something, I would do it.
Mom: Yeah.
Susan: Yeah that’s what happened. Sorry about that. But maybe it’ll fade over time.
Mom: Well I don’t think so.
Susan: No? Okay. Is it okay if I sit here with you for awhile? How about if we do your nails?
Mom: Well, the nails are beautiful.
Susan: Well, they could be redone I think. Shall I redo them for you?
Mom: Na na na na no I don’t want to.
(About an hour later:)
Susan: Those are nice taps.
Mom: Yeah.
Susan: Are those love taps?
Mom: Yeah, they are nice taps.
Susan: Before you were giving me mad taps. You were mad at me before Mom.
Mom: Mad at you when?
Susan: About an hour ago.
Mom: Oh well, so what.
Susan: (laughs) That’s what I said Mom – so what? It’s okay. You have a right to be mad when you wanna, Mom.
Mom: Yeah, I guess I better.
Susan: Yeah. Life is short. Do what you want.
Mom: Yeah.
Susan: Eh?
Mom: I guess.
Susan: Yep. That’s right.
(About another half hour later:)
Susan: And then we sang “Mary had a little lamb, little lamb, little lamb…
Together: it’s fleece was white as snow…etc.
Susan: I like that nursery rhyme, it’s cute.
Mom: Well, it was a nice story.
Susan: Yeah it was a nice story, Mom. How about baa, baa..
Together: Baa baa black sheep, have you any wool…
This approach worked wonders for me on many occasions. That’s not to say it always worked, because, just as we all do, Mom had days when she was just plain unhappy — who wouldn’t have been in her circumstances? No one is happy all the time — or at least no one I know, including myself! The point is, this way of engaging someone living with dementia has a much better chance of working than arguing, correcting, and dismissing. Try it and see for yourself.
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It’s hard for many people to believe any good can come from dementia, but those of us who have experienced transformation during the process of being a care partner to someone who lives with dementia know it to be true, and are immensely grateful for the rare gift we’ve received.
Fellow advocate Lori La Bey and I both experienced a kind of spiritual awakening during our time as care partners to our mothers. We touched on what that deep connection felt like to us when I was a guest on her popular online show AlzheimersSpeaksRadio.
Here’s a two-minute clip related to that part of our conversation:
During the hour-long show, we also talked about family dynamics, antipsychotic medications, transforming perspectives, and my BANGS model to help stop anxiety and aggression (watch the free BANGS webinar here).
In spring 2016 I gave a webinar entitled “How to become a better dementia care detective” in partnership with a former associate. This post summarizes what we discussed in that webinar. I’ve removed the case study and poll questions that were part of the full one-hour webinar, and created a 23-minute version that explains five of the 10 ways I recommend to get to the bottom of behaviour and problematic situations in dementia care both at home and in institutional environments.
Here it is (apologies for the less-than-stellar visual quality, but the audio is fine. Also, see below the video for summaries of the tips and the bottom of the post for links to things mentioned in the clip, AND you can answer the same questions I asked in the polls at this link):
Human beings tend not to be reliable witnesses, as courts have proven time after time. One of the most reliable witnesses is a CCTV camera, and I feel strongly that all long-term care facilities should be fitted with CCTV throughout public and private areas.However, at the moment, most facilities are not so equipped, and neither are most private homes, which means we must rely on people. All of that being said, I think it’s important to not dismiss the testimony of people who live with dementia as they are the most reliable witnesses of their own experience despite the impacts of their disease. Watch the video above for a GREAT real-life story.
3) Ask questions (5Ws & some Hs)
When looking at specific situations, it’s helpful to use the five “Ws” that detectives and journalists ask: who, what, when, where, and why. In the case of situations involving people living with dementia , the “why question” is probably the most important, and yet the one that is least asked because people make the assumption that the behaviour is caused by the disease when most often it’s not (see 1) above). After the five W’s, gather more information by asking a bunch of “how” questions such as: how much, how often, how long, how many, etc.
4) Re-create the “crime scene”
Do what any good detective would do, and walk through what has happened with the players or substitute players step by step in the environment in which the situation occurred. See if you can find in the sequence potential causes for what’s happened. Try to look at it from the point of view of the person is living with dementia rather than from your own perspective.
5) Use your senses
Experience the situation, again from the perspective of the person his living with dementia, using your five senses: sight, sound, touch, smell, taste. For example, were the lights too bright? Or too dim? Were there bells ringing? Alarms sounding? Loud bangs? TVs playing violent content? Sound and noise are important factors to consider. Is it or was that too hot or too cold? Was there in the noxious smell and the environment such as bleach or other cleaning material? Did the food or water taste bad? Is the medication bitter?
Here are the five additional ways I didn’t cover in the video, with short explanations and links:
6) Ask more questions
In addition to 3) above, keep probing, particularly drilling down using “why” until you get down to the root cause. From a global perspective, here are questions I’ve developed to help me better understand what may be going on. You might find them helpful too:
This can be extremely difficult. One of the hardest things is to let go of our assumptions (see 1) above) , and listen objectively. But it’s also critically important. Try not to be judgmental, particularly with respect to what the person living with dementia says or does. Step back. Be self-aware. I used audio and video recording to help me. I watched and listened to myself to check voice tone and body language so I could hear and see what I was doing well and where I could improve. Listen with the same critical ear to others’ versions of events.
8) Re-examine the “facts”
Don’t take what you have been told, or even what you observed yourself at face value. Ask yourself if the “fact” really is a fact, or is it an “alternative fact,” or even a lie. What evidence is there to back up the facts? If there is no evidence, can you source any? If not, it may be best reconsider how much weight you give to that particular piece of information.
9) Consider motives
Ask yourself what is driving behaviour – not just that of the person who lives with dementia but also of those reporting the behaviour of the person who lives with dementia. Did the care worker say she had changed the client’s brief when in fact she hadn’t? Who benefits most when someone is sedated rather than engaged with life through activities and socializing?
10) Look outside the box
Keep an open mind. Consider all possibilities and remember that reality is sometimes stranger than fiction. Sometimes the thing that appears to walk and talk like a talk is actually a swan in disguise.
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