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:
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:
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:
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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:
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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:
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Harry, who is an administrator on the Forget Me Not page, posts there frequently, and sometimes shares those posts on his personal page. This particular post really resonated with me:
“Are we missing the point concerning raising dementia awareness? Are we so focused on finding a cure for Alzheimer’s that we are forgetting about the people living other forms of dementia? Today Hazel and I volunteered at the Alzheimer’s Associations Walk to End Alzheimer’s and had a wonderful time, but something was missing.
I listened to the speakers and heard the statistics and how horrible this disease is. What I didn’t walk away with, was the feeling of Hope. It was nice to hear how much money sponsors contributed and who gave the most, but is that how we are going to end Alzheimer’s?
I know I am being over critical and going to catch Hell from many directions, but the path of dementia I am walking on is comprised of people living with various forms and stages of dementia. Money is not going to get them off that path, only Hope can.
Money is needed to find a cure for future generations and I’m for it, but damn it, don’t people realize that my friends don’t want to hear about the miseries or the statistics, they want to hear how they can live with their disease today.
Why is it so hard to speak about Hope and how we are spending money toward finding ways to live a better life? When we talk about finding a cure, why can’t we also want to find a cure for Vascular Dementia, Lewy Body Dementia, Frontotemporal Dementia and all the other forms.
My biggest question is, why do we need to sell the miseries of our disease to raise funds. Maybe if people saw the Hope and progress the grass roots are making into how people think about dementia, they would give more.”
Several people who also live with dementia made these comments on Harry’s post:
“The negative narrative feeds fear and dread and disables people upon diagnosis. When we speak out our diagnosis are questioned because of the negative perceptions of professionals who should know better. Other diseases are portrayed in a more positive light, breeding enablement and hope, why can that not be the narrative around Dementia.” ~ HG
“This is precisely the problem. Perpetuating the tragedy stereotype is what They use to raise money. Dispelling myths and demonstrating we’re still human with equal human rights is what We do to raise hopes. Someone needs to get Our truth to the masses.” ~ Mary Radnofsky
“Very well said! I have often felt that some of the big associations care much more about the money than they do about people living with the disease.” ~ SW
Like Harry and I, others in the worldwide dementia care advocacy network are asking pertinent and powerful questions such as: why do we need to sell misery and our souls to get funding for dementia care?
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There’s a big myth out there that dementia causes the people who live with it to be anxious when it’s actually a whole bunch of other stuff that, in most cases, lies behind the words and actions they use to communicate and that those around them find challenging.
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Someone asked me this question on Quora. I thought it might be useful to share my reply here as well so others might be helped with the information.
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How difficult it is depends in large part on you, the care partner.
If a care partner is devastated and grieving over the fact the person they love who is living with dementia doesn’t recognize them, I think she or he will find it much more difficult and stressful to provide good, loving, compassionate care.
On the other hand, if the care partner can let go of his or her ego, and understand that being recognized by name or by face is really not that important, then I believe he or she will have a much easier time as a care partner. She or he will be less stressed, more relaxed, more loving and compassionate, more open to going with the flow, and more able to find joy, happiness and fun.
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“It enrages, sickens and saddens me when I see Alzheimer’s Disease International promoting Eli Lilly and Janssen R&D/Johnson & Johnson,” I rant in an email to a fellow dementia care advocate/activist on the other side of the world. Half a planet separates us, but my gut tells me we’re on the same page. My gut is right.
“It f*****g sickens me too!” she replies in short order.
The “documentary” comprises a total of thirty-five four- to five-minute videos; they are divided into three sections. Topics range from “maintaining quality of life” to “person-centred care.” The videos are in a news-magazine-like format to give the impression they are, well, news. It’s a clever way to camouflage the fact that the “documentary” actually features sponsored content from “leading academic, research and care organisations,” which means the corporations and organisations paid to be in the “documentary,” which means it’s not a documentary at all; it’s an advertorial.
Noteworthy among the participating sponsor/advertisers are two of the world’s biggest drug companies: Eli Lilly and Janssen Inc. a pharmaceutical company of Johnson & Johnson. Each has its own five-minute video in the larger advertorial.
“Making medicines that help people live longer and healthier lives is what the Eli Lilly company was created for, and working on Alzheimer’s disease has long been a priority,” a “reporter” gushes at the start of the Lilly commercial, which, predictably, goes on to heap praise on the #BIGPharma giant.
X in 2009, Eli Lilly pleaded guilty to actively promoting Zyprexa for off-label uses, particularly for the treatment of dementia in the elderly. The $1.415 billion penalty included an $800 million civil settlement and a $515 million criminal fine, the largest ever in a healthcare case and the largest criminal fine for an individual corporation ever imposed in a US criminal prosecution of any kind (as of 2009).
Nor does it mention the fact that Lilly ‘threw in the towel’ on its most recent Alzheimer’s drug research in June 2018.
The five-minute Janssen commercial, which is the tenth in the series of thirty-five videos, begins with a short intro that leads into this statement: “Research into dementia and Alzheimer’s disease has certainly come a long way in recent years. That’s in large part due to new technology, and also a greater conversation between scientists and the wider community. Leading the field is Janssen Research and Development, one of the pharmaceutical companies of Johnson & Johnson, whose neuroscience teams are researching how to stop or slow the progression of dementia.”
The reporter goes on to “interview” three Janssen executives who not surprisingly talk about “promise,” “potential,” and collaboration. On the plus side, Janssen is at least transparent about its sponsorship of the video:
Johnson & Johnson has since settled thousands of cases involving the illicit promotion of Risperdal, (which is now “black boxed” in the US and other countries for use with people living with dementia), including Department of Justice (DOJ) civil and criminal complaints, for a total which was close to US $3 billion in 2015. Here are some additional details from the Consumer Safety Organization, which is run by several law firms keen to litigate:
“Through its subsidiary Janssen Pharmaceuticals, Johnson & Johnson tried multiple times in the 1990s to gain approval [to use Risperdal to treat adolescents and older adults], without success. But despite this, marketing efforts by J & J specifically targeted these groups for off-label usage. It encouraged the use of Risperdal…by geriatric dementia patients. It provided kickbacks to physicians who prescribed the drug, held golf tournaments, and provided other benefits to expand their market. Targeting seniors, J&J engaged in profit sharing with Omnicare, one of the largest nursing home pharmacy systems in the U.S.”
[In 2012], the U.S. Department of Justice (DOJ) levied a $2.2 billion fine against Johnson & Johnson and its subsidiary Janssen Pharmaceuticals. The core reason for the fine was Janssen’s marketing and sale of Risperdal and other drugs (Invega and Natrecor) for unapproved uses.
According to the DOJ’s public statement, the drug maker also had entered into an illegal kickback scheme with Omnicare Inc., a pharmacy that specializes in providing drugs to elderly care and assisted-living facilities. The $2.2 billion fine constitutes one of the larges healthcare-related fraud settlements in the history of the U.S. Even so, it is only a fraction of the $30 billion J & J had made from sales of Risperdal at the time of the settlement.”
The way companies such as Lilly and Janssen push their drugs to physicians and geriatricians who then prescribe them to people like my mom who lived with dementia makes me sick, and very, very angry. It makes me even angrier that despite the billions of dollars in fines, it’s still business as usual for #BigPharma, and that means hundreds of thousands of people who live with dementia are still being prescribed dangerous and debilitating drugs off label (i.e. despite US FDA and other countries’ black box warnings).
This is what being inappropriately prescribed Risperdal and Seroquel (which is manufactured by AstraZeneca*), did to my mom:
That’s why it infuriates me when an organization such as ADI, which is meant to advocate for people who live with Alzheimer disease, broadcasts the marketing messages of drug companies that are responsible for the pain and suffering of hundreds of thousand of older adults and people who live with dementia. By doing PR for #BIGpharma, ADI is indirectly endorsing the use of these drugs and feeding into the profits being reaped from their sales at the expense of vulnerable people living with dementia.
Accepting funding from pharmaceutical companies is a massive conflict of interest for Alzheimer’s advocacy organisations (read more about that here). Shame on ADI for producing, promoting and publicising corporate BS as if it were truth. Perhaps more important, shame on pharmaceutical industry executives worldwide for profit-making on the backs of the vulnerable older adults who live with Alzheimer’s disease and other types of dementia, making them sicker than they already are and even killing them for the sake of a making buck. Or, to be more accurate, billions of bucks.
A prominent clinical pharmacist in psychiatry summed it up like this in an email:
“The multinational pharma groups are huge, slick, polished and ruthless. They present themselves as organizations with an interest in health, [when] their actual focus is to make enormous amounts of money.”
Indeed. And that’s precisely why Alzheimer disease advocacy organisations such as ADI shouldn’t be partnering with #BIGpharma, endorsing them in any way, or — God forbid — doing their PR for them!
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When you tell people that care homes/nursing homes/long-term care facilities ban family members or threaten to ban them or restrict the hours they can see their loved ones, people are either shocked, or they don’t believe you, or they think the family members deserve it for being troublemakers.
This is what I know for sure: care facilities hold all the cards, and very rarely do family members deserve to be banned or threatened. It’s all about power and control.
I was repeatedly threatened with being denied access to my mother as a direct result of advocating for better care for her. For the last 15 months of her life, my visits were restricted to between 1 and 3 p.m. when she was “asleep.” There’s no doubt this was abuse.
“It is a heartbreaking, and sadly, oh-too-familiar story. My Mother was in care homes for nearly nine years. When I read the list of 25 things that are considered abuse, I cried. Many of them were daily and ongoing and par for the course where she was. We as a family fought constantly to have them addressed. We were labeled a troublesome family from the start and constantly made to feel we had no right to complain on behalf of our mother. There was also the underlying fear she would suffer more as a result of our “interference.” Threats were made about her being moved or certain family members not being allowed to see her. This fear was exacerbated by an incident that happened to another person who was banned from seeing her mother for a year because she complained about an incident she witnessed that concerned our mother and another resident. It upset her so much that she complained about it, and that ended up with her being cruelly punished like that! Tragically, I did not learn about that until a long while afterwards and it was not possible to right the wrong that had been done to her and her mother. Her mother has since passed away, and so has mine, but I am haunted by many things I saw during those years.”
If you have had (or are having) a similar experience, please share it so that other family members are also encouraged to speak out. It’s the only way we are going to create change around this abusive practice.
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My Alzheimer's Story 