Advocacy, Care Partnering, Interviews, Videos

what are the challenges and benefits of involving patients in healthcare education?

The obvious answer to “what are the benefits of patients, care partners and healthcare providers working together?” is that collaboration produces better care.

What is required for good collaboration between those who care and those who are being cared for ? I believe open minds, curiosity and humility are the cornerstones for creating a good care experience for all concerned.

More in the video below on my answer to the fifth question in the project aimed at developing educational materials for students enrolled in the healthcare faculty at a local university. 

How would you have answered?

In a nutshell, I think it’s critical that patients and care partners participate in all aspects of healthcare in Canada – from education to delivery. Click on the questions below to get to the videos with the answers to the other questions:

1) “Why should we involve patients in healthcare education?”

2) How should we involve patients in the education of healthcare providers?

3) What do you think healthcare providers think about including patients in healthcare education?

4) Have you been involved in the education of healthcare providers either formally or informally formally in the classroom or in the community and if so, how are you involved and what we’re your experiences?

Processing…
Success! You're on the list.

Take my short survey on behaviour here.

why patients and care partners should be involved in healthcare education

how should we involve patients in healthcare education?

what do healthcare providers think about including patients in healthcare education?

Advocacy, Care Partnering, Interviews, Videos

how are you involved in educating healthcare providers and what are your experiences?

I learned a lot during the time I was a care partner to my mom who lived with dementia at the end of her life. I share many of the things I learned on this blog. I’ve also done workshops and webinars to help care workers and students better understand the nature of dementia and the people who live with it.

When I was interviewed with respect to the development of educational materials for students enrolled in the healthcare faculty at a local university, I shared my experience about sharing my experience!

When the interviewer asked if I had been involved in educating healthcare providers (the fourth question in the interview), I told her of my experience as well as what has worked for me: 

How would you have answered?

In a nutshell, I think it’s critical that patients and care partners participate in all aspects of healthcare in Canada – from education to delivery. Click on the questions below to get to the videos with my answers to the other questions:

1) “Why should we involve patients in healthcare education?”

2) How should we involve patients in the education of healthcare providers?

3) What do you think healthcare providers think about including patients in healthcare education?

5) What are the challenges and benefits of involving patients in healthcare education?

Take my short survey on behaviour here.

why patients and care partners should be involved in healthcare education

how should we involve patients in healthcare education?

what do healthcare providers think about including patients in healthcare education?

Advocacy, Care Partnering, Interviews, Videos

what do healthcare providers think about including patients in healthcare education?

Both healthcare providers and patients must participate in the care process to make the system work well. Achieving participation and collaboration from both “sides” requires an adjustment in the mindsets of all involved.

This is the essence of my answer to the third question I was asked when I was interviewed with respect to the development of educational materials for students enrolled in the healthcare faculty at a local university.

When the interviewer asked “What do you think healthcare providers think about including patients in healthcare education?” I answered frankly that everybody needs to take a different tack if we are to achieve success: 

How would you have answered?

In a nutshell, I think it’s critical that patients and care partners participate in all aspects of healthcare in Canada – from education to delivery. Click on the questions below to get to the videos with my answers to the other questions:

1) “Why should we involve patients in healthcare education?”

2) How should we involve patients in the education of healthcare providers?

4) Have you been involved in the education of healthcare providers either formally or informally formally in the classroom or in the community and if so, how are you involved and what we’re your experiences?

5) What are the challenges and benefits of involving patients in healthcare education?

#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; }
/* Add your own MailChimp form style overrides in your site stylesheet or in this style block.
We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

Take my short survey on behaviour here.

why patients and care partners should be involved in healthcare education

Advocacy, Care Partnering, Interviews, Videos

how should we involve patients in healthcare education?

When I was invited to contribute to the development of educational materials for students enrolled in the healthcare faculty at a local university in 2019, I jumped at the opportunity.

As part of the project, I was interviewed about my views on including patients and care partners in the education of healthcare providers.

I answer the second question “How should we involve patients in the education of healthcare providers?” below.

How would you have answered?

In a nutshell, I think it’s critical that patients and care partners participate in all aspects of healthcare in Canada – from education to delivery. Click on the questions below to get to the videos with the rest of my answers:

1) “Why should we involve patients in healthcare education?”

3) What do you think healthcare providers think about including patients in healthcare education?

4) Have you been involved in the education of healthcare providers either formally or informally formally in the classroom or in the community and if so, how are you involved and what we’re your experiences?

5) What are the challenges and benefits of involving patients in healthcare education?

#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; }
/* Add your own MailChimp form style overrides in your site stylesheet or in this style block.
We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

Take my short survey on behaviour here.

why patients and care partners should be involved in healthcare education

what do healthcare providers think about including patients in healthcare education?

Advocacy, Care Partnering, Interviews, Videos

why patients and care partners should be involved in healthcare education

When I was invited to contribute to the development of educational materials for students enrolled in the healthcare faculty at a local university in 2019, I jumped at the opportunity.

As part of the project, I was interviewed about my views on including patients and care partners in the education of healthcare providers.

The answer to the first question “Why should we involve patients in healthcare education?” is self evident in my opinion. The short answer is to enable providers to deliver better care. Listen to the two-minute answer in this video:

How would you have answered?

In a nutshell, I think it’s critical that patients and care partners participate in all aspects of healthcare in Canada – from education to delivery. Click on the questions below to get to the videos with the rest of my answers:

2) How should we involve patients in the education of healthcare providers?

3) What do you think healthcare providers think about including patients in healthcare education?

4) Have you been involved in the education of healthcare providers either formally or informally formally in the classroom or in the community and if so, how are you involved and what we’re your experiences?

5) What are the challenges and benefits of involving patients in healthcare education?

#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; }
/* Add your own MailChimp form style overrides in your site stylesheet or in this style block.
We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

Take my short survey on behaviour here.

how should we involve patients in healthcare education?

what do healthcare providers think about including patients in healthcare education?

Care Partnering, Joy, Music, Videos

mom knew hundreds of songs, but down in the valley was her go to

I had never heard Mom sing Down in the Valley. Ever. Until a couple of years after she was diagnosed with Alzheimer disease. Then she (we) sang it every day, sometimes five or six times a day, until just before she died.

Mom and I must have sung Down in the Valley thousands of times between 2011, when I moved back to Canada to be her care partner, and 2016, when she said goodbye to this world. During that time I learned so much from our musical sessions together.

“Why don’t we sing a song Mom?” I would say when things were getting a bit out of hand, when either she or I was feeling stressed or angry or sad, or when I had run out of other things to do to keep us both occupied.

“Okay,” she would respond.

“What do want to sing Mom?” I always asked before I made any suggestions of my own. It gave her a modicum of control as her world was spinning out of it.

“How about Down in the Valley?” She would almost always reply — It was her go to.

“Okay Mom. You start.”

“Down in the valley, valley so low,” the words came out of her mouth sweet and true. “Hang your head over, hear the wind blow. Roses love sunshine, violets live dew, angels in heaven, know I love you.”

Mom had a beautiful voice. She knew all the words. I fell short on both counts, at least at the beginning. I learned the words eventually–to Down in the Valley and dozens of other tunes– but my voice would never match hers. Ever.

#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; }
/* Add your own MailChimp form style overrides in your site stylesheet or in this style block.
We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

Take my short survey on behaviour here.

down in the valley: one of our gazillion favourites

5 things I never knew until I sang with my alzheimer mom

Advocacy, Antipsychotic drugs, Music, Videos

she couldn’t sing because she was sedated

My mother, who lived with dementia, was chemically and physically restrained every day for the forty-five months she lived in a dementia jail (aka a long-term care facility or nursing home).

These restraints could have been avoided if the medical personnel in charge of her care had addressed the root causes of the behaviours they found challenging in her. All they needed to do was to take a closer look at what was going on around Mom. If I could do it, surely they should have been able to.

When Mom was sedated, she was unable to do things she loved to do such as walking and singing. Here she is not singing (because she had been sedated an hour or so before), at some of the weekly sing-alongs conducted by volunteers at the place she resided:

Besides cruelly sedating her with antipsychotic drugs, no one who was involved with my mother’s care listened to my request to provide her with music therapy. So I hired a music therapist myself and the three of us enjoyed many happy afternoons together after the worst sedative effects of the chemical restraints had worn off. Here’s an example of one of those wonderful sessions:

a magical musical alzheimer gift

And this one was just four days before Mom died on August 17, 2016:

one last sing-along: august 13, 2016

I miss you Mom.

50 more pics that prove my mom was neglected and abused in long-term care

four years later is too late for my mom. but it’s not for others.

alzheimer disease didn’t do this. drugs and dementia jail did

10 reasons why neglect and abuse of elders with dementia may be the norm rather than the exception in long-term care facilities

25 practices long-term care workers know are elder neglect and abuse; it’s time to put a stop to it

#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; }
/* Add your own MailChimp form style overrides in your site stylesheet or in this style block.
We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

Take my short survey on behaviour here.

Advocacy, Real life, Toward better care, Videos

incontinence pads put on backwards every day for four years in long-term “care”

The bulge at the front of Mom’s pants drove me nuts.

“What a crappy design,” I thought to myself ironically each time I saw her, which was every day, religiously.

She’d always been well turned out with great style and panache. Not meticulous or fastidious. Not prim and proper. Not designer, although her wardrobe included several unique pieces. Classic country chic – that was her look. Matching shorts and tops for the golf course. Straight skirt, crisp shirt, cashmere sweater and penny loafers to show million-dollar properties to a high-end clientele.

Now she was living with dementia in a “nursing home” where she was dressed in the same dirty clothes for several days in a row to cut down on laundering costs, and her “adult protective underwear” didn’t fit as it should. As if there wasn’t enough to cry about, the butt-ugly bulge was icing on the dementia cake.

I had “changed” Mom myself many times after asking one of the Dementia Jail staff to show me how. I wanted to do everything I could to make Mom as comfortable as she could be under the circumstances.

“You wrap the long tabs around her waist and attach them at the back with this sticky bit,” the caregiver demonstrated. “It’s kind of like Velcro.”

The tabs overlapped to create a waistband.

“Then you pass the pad through her legs from front to back,” she said as she did it. “The back part also has sticky bits on the corners, they attach to the waistband. It’s sort of like an old-style baby’s diaper, except the place where the safety pins would be is at the back instead of at the front.”

I’d never changed a diaper in my life, but it wasn’t rocket science. This caregiver had been doing it for yonks; her demo and instructions were clear. No doubt she had shared the same procedure with dozens of trainees over the years, passing knowhow from one person to the next.

“But what about the bulge?” I asked.

The ridge started at the bottom right hand side of Mom’s tummy and ran down her upper thigh (think over-endowed male ballet dancer without a cup who “dresses” right). Besides being unattractive, I guessed it would be uncomfortable for her.

“What bulge?” The caregiver hadn’t noticed. I showed her.

“Hmmmm. I don’t know,” she was unhelpful on this score. “All I know is this is the way you put them on.”

The bulge continued to annoy me. I just couldn’t get over the shitty “diaper” design and the ugly bump. But I didn’t say anything more about it to anyone.

One afternoon about year into her stay in jail, I brought Mom to the toilet to change her shortly after I got there for my daily visit. I could smell she was long overdue. When I pulled down her trousers, I found that, besides being full, her “pad” had been put on backwards. The waistband’s long tabs were attached at her belly instead of at the back, as the personal support worker had shown me they should be.

My blood began to boil. Mom’s Dementia Jail hosted student nurses on practicums; a dozen or so had been there for several weeks. Apparently one of them had “done” Mom, but no one had shown her how to “do” her properly.

“You’d think they would read the instructions,” I said to Mom, exasperated. I’d sat her down on the toilet by this time; she had no idea what I was talking about.

“What instructions, Punkie?”

“It’s okay Mom,” I chastised myself for not keeping my mouth shut for her benefit. “I forgot to read the instructions. Don’t worry, I’ll get them now.”

I went to the closet and grabbed the bag of TENA incontinence pads from the shelf and brought it back to the bathroom. Mom couldn’t be left alone for long without risk of her standing up and then falling down, which is what would lead to her death two years later.

I looked at the package. The instructions were poor. A series of three diagrams showed the midriff and upper thighs only. The only clue that this might be the front of the torso was a tiny dot of a belly button. Even then it was hard to figure out. The drawings only showed one perspective. There were no buttocks, nipples or other physical features that would have made it unambiguous.

I extracted a fresh pad to investigate further. Oh my God. Once I examined the pad with a curious eye and laid it on the floor, the cause of the bulge became immediately obvious – the pads were being put on backwards. One of the student nurses had obviously read the instructions or figured out for herself how the pad should be put on properly.

It was impossible not to see which bit was meant to be at the front and which at the back once the pad was relatively flat. One end was much wider and fuller than the other; it should cover the behind. The other was much smaller, narrower and far less bulky; it should go at the front. The bulge was caused by the billowy back of the pad being scrunched up bellow Mom’s belly, between her legs and down the top of her thigh instead of where it should have been – covering her bum.

The problem had nothing to do with the design of the pads and everything to do with how they were being put on.

This incontinence product was clearly meant for someone who could dress herself. The wearer wraps the long tabs around her waist and attaches them at the front like an overlapping belt. She bends down, reaches between her legs and pulls the front part through and up, then attaches its two corners to the “belt” with the sticky bits and voila!

Here’s a demo:

Easy, fast, and simple for someone who is able to do it herself; not so for a caregiver assisting someone with dementia who needs help in the toilet. For a caregiver, putting this type of pad on the way it is designed to be worn is cumbersome, slow and problematic.

I know because as soon as I discovered how the pads should be worn, I began putting them on properly. I reckoned it would be more comfortable and sanitary for Mom – not to mention that it eliminated the unsightly bulge at the front of her trousers, and reduced the likelihood of the pad overflowing and drenching the back as had happened on several occasions that I knew of.

I asked the staff questions about the toileting procedures, and suggested the pads be put on as they were designed to be. But even when I shared what I had learned, the jail staff continued to put Mom’s pads on back to front. Why? Because it was faster and easier and that’s the way they’d always done it. Why change? Who cares?

“People with dementia don’t know the difference,” some might have said.

“No one’s ever complained,” others might have echoed.

People with dementia may or may not know the difference; but I’m sure they would feel the difference just as anyone else would feel the difference if their underwear were on back to front.

Likewise, people with dementia may not complain in the same way we might. Maybe we don’t hear them because we haven’t taken the time to learn their language. Perhaps we’re not listening well enough.

Robbed of their voices, people with dementia use their physicality to communicate. As a result, they are often sedated for aggressive behaviour that is caused by the way we interact with them rather than by the disease itself. We are often the cause, they are the ones that get the blame.

My mom was much more aware and “with it” than people gave her credit for, and she knew it. Nevertheless, she may not have been able to fully articulate if, when and why something felt uncomfortable. Ill-fitting clothing that pinched or pulled or was too loose or too tight might have caused her to be anxious and distressed without her being able to say why.

I would be really unhappy if I were made to wear my underwear back to front. Wouldn’t you be? This is a perfect metaphor for the way we currently treat the elderly and people with dementia. Like my Mom’s pads, the whole damn thing is the reverse of how it should be.

Similar stories of neglect and abuse are shared by tens of thousands of others in North America and around the world. If we don’t make significant changes soon, it will be the story of millions more in the not-too-distant future.

It’s time for a change that isn’t ass backwards.

*Note: I wrote this post long before the tragedy of COVID-19 manifested. Sadly, many of my fears became a reality with the pandemic. Still, there is time to prevent more needless suffering in the future. Please speak up for better healthcare for us all, young and old.

**Note: I’ve had comments from care workers saying they have to put pads on backwards in order to make it more difficult for residents to remove them for one reason or another. I completely reject that notion as yet another form of physical restraint. Furthermore, there was no reason whatsoever that would have justified putting my mother’s pads on backwards. It was simply a matter of ignorance, convenience and efficiency.

it’s taken a pandemic and tens of thousands of deaths for people to get what long-term care advocates have known for decades: the system sucks

the story of the dirty pull-up

crazy daughter weighs mom’s wet “nappy” and writes open letter to minister of health about it

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

Take my short survey on behaviour here.

Family, Life & Living, Love, Videos

an open letter and song request for country great kenny chesney on behalf of people who live with dementia and their family and friends

Dear Mr. Chesney,

I love your song “While He Still Knows Who I Am,” but would you write another one please?

I am a dementia care advocate who learned about dementia through lived experience with my mom. She died in August 2016.

One of the tragedies of Alzheimer’s disease and other dementias is that many family members and friends of people who live with dementia think the person is “gone” when she or he no longer easily recognize family and friends, and so the family and friends stop visiting the person who is living with dementia. This is heartbreaking because this is when love, connection and compassion are most needed by the person who is living with dementia.

It really doesn’t matter if a person living with dementia recognizes us or not. We need to ask ourselves why we get so focused on the recognition part instead of on loving, connecting and being compassionate.

Furthermore, a great deal of healing, love and bonding may be shared by both the person living with dementia and friends and family until the very end. I can’t emphasize how life affirming and deeply spiritual this can be for all involved.

Your song is beautiful and touching, but it infers that people living with dementia are not worth seeing once they don’t recognize us. In fact, the worst thing we can do when a person living with dementia doesn’t recognize us anymore is to stop spending time with him or her. That’s why I’m writing to ask you to please produce another song that will encourage family members and friends to keep spending time with their loved ones who live with dementia, ESPECIALLY when their loved ones don’t know them anymore.

Mr. Chesney, in your audio commentary about “While He Still Knows Who I Am,” you say the song is “heavy” and as the narrator you “have a responsibility.” Please take your responsibility to heart and give us another song that will encourage family and friends to remain connected with people who live with dementia until the very end.

Thank you,

Susan Macaulay
Dementia Care Advocate

https://myalzheimersstory.com/2015/04/09/20-great-questions-to-ask-when-a-loved-one-with-dementia-doesnt-recognize-you-anymore/

http://handsoffmybrain.com/2018/10/are-you-my-mother

https://myalzheimersstory.com/2015/01/21/it-doesnt-matter-that-mom-doesnt-know-me-anymore/

#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; }
/* Add your own MailChimp form style overrides in your site stylesheet or in this style block.
We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

Take my short survey on behaviour here.

Family, Life & Living, Love, Videos

while he still knows who i am is beautiful and heart wrenching, but does it send the right message about love and connection?

Kenny Chesney’s song While He Still Knows Who I Am is about love, connection and re-discovering a father-son relationship. It made me cry. It may make you cry as well.

But does it send the right message about people who live with dementia, and when and how family and friends should love and connect with them? I don’t think so.

The title and lyrics infer the son is going to visit his dad while the father still knows who the son is. But what happens when father no longer recognizes son? Will the son then not go to visit? That’s the implication.

I was so saddened by the inference that I wrote an open letter to Kenny Chesney asking him to write another song — one that encourages friends and family members to visit people with dementia especially when those people don’t recognize them anymore.

I wonder if he will.

https://myalzheimersstory.com/2015/04/09/20-great-questions-to-ask-when-a-loved-one-with-dementia-doesnt-recognize-you-anymore/

http://handsoffmybrain.com/2018/10/are-you-my-mother

https://myalzheimersstory.com/2015/01/21/it-doesnt-matter-that-mom-doesnt-know-me-anymore/

#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; }
/* Add your own MailChimp form style overrides in your site stylesheet or in this style block.
We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

Take my short survey on behaviour here.

Image copyright: dolphfyn / 123RF Stock Photo