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!):
The state of our elder care health system (worldwide!) is atrocious. And many care workers within it are as neglected and abused as the people they are supposed to be taking care of. After former care worker Heather Reece read bullied and banned: rachel’s story, she wrote:
“Having been a carer of people with dementia, [I can tell you] it’s as frustrating for the carers as it is for the family. Understaffing is the biggest issue; the amount of people you are expected to assist to wash and dress per carer is ridiculous. It’s like a factory conveyor belt, and it shouldn’t be like that. You’re not given the time to let “Margaret” or whoever brush her own hair even though she’s more than capable of doing it but it takes her 20 mins! You’re not given 20 mins to assist to wash and dress one person let alone to help Margaret just brush her hair. It’s sad and wrong that you’re classed as not pulling your weight as a carer if you do your job properly.”
You said it Heather Reece! We need more trained, qualified and compassionate care workers who have more time to do their job properly instead of being rushed because the ratio of residents to workers is completely out of whack.
#FightTheGoodFight #WeCanCareBetter
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When I shared this post about wandering for the umpteenth time on the MyAlzheimersStory.com Facebook page, daughter and care partner Miriam Oltrogge made a comment that brought tears to my eyes:
“My father is known as a wanderer, exit seeking and as having behaviour issues at his long term care home. So now he spends his days in the locked unit with just a half floor where he walks back and forth like a prisoner. His active lifestyle kept him out of a wheelchair, and he still enjoys being up and about. Little did he know where he would end up at 88 years old because he staying so active and physically healthy. These homes could find a better way to handle this but they choose the easiest and most cost efficient for them.I am sure that some of the people on his floor go for weeks without getting any sunshine and fresh air. This wouldn’t be acceptable for children or prisoners. Why is it ok to do this to seniors? We don’t know who to complain to. Nobody seems to care.”
You said it Miriam Oltroggem, and you are so right, it does often seem like no one cares.
#FightTheGoodFight #WeCanCareBetter
~~~~~~~~~~~~~~~~
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The voice of validation is being amplified by individual advocates around the world. Here is another example of those who are willing to speak frankly about the systemic neglect and abuse that takes place in countless long-term care facilities.
“I am so very sorry about what happened to your mother. Your article and video is heart breaking. Since beginning work in healthcare facilities, I have fought to reduce then stop antipsychotic medications that are handed out like candy to PLWD. I have witnessed too many people placed on these medications because facilities do not want to pay for one more employee. I can always tell when someone is overmedicated. Working with the staff, I have seen remarkable changes when the antipsychotics are ended. Although I realize it’s cheaper for the facilities, it ruins the patients quality of life.
Hiring one more Certified Nursing Assistant (CNA) or Personal Support Worker (PSW) provides the proper amount of staff so that they do not need to use these detrimental alternatives. I stand beside you 100% to help stop the abuse that happens to PLWD, who are prescribed these medications. Once again, thank-you for sharing.”
You said it Michael, and you are so right. #FightTheGoodFight #WeCanCareBetter
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The state of dementia care (i.e. largely lacking and often substandard) is the same everywhere. I know because I get comments and messages to that effect from around the world. This one, from long-time Australian subscriber Kate G. confirms what I opined in hundreds of studies make me mad as hell. Kate wrote:
Dearest and Amazing Susan,
Thank you for this. I am studying a Bachelor’s degree in Dementia Care and fully understand your frustration. The main reason I am at university now is because I was fed up with healthcare workers not listening to me, the primary carer for my wonderful 90-year-old dad who is LIVING WELL with Alzheimer’s disease.
It’s as you describe, Susan, — behaviour is the same for all human beings whether one has dementia or not! It’s a constant battle to re-educate the people who are involved in my father’s care. He lives alone in his own place, with a carefully programmed roster of paid care givers who enable and assist him with daily life such as meals, dressing, hygiene, exercise and social interaction.
It takes him time to develop trust, respect and feelings of companionship with these caregivers, but when he develops that trust, and feels safe and secure with someone then ALL IS WELL. However, when an agency care manager arbitrarily decides to change the roster and sends a ‘stranger’ in to help with his shower you can imagine his reaction (and we would all feel the same).
Sometimes they just don’t get it.
At university, I am obliged to study the research that you refer to and often have to laugh. It is all so simple and obvious – to people like you and I. We have to keep spreading the word and educating all who cross our paths. People do not believe me when I tell them my dad is happy and well – he is on no medications (just probiotics and vitamin D), uses no mobility aids (he goes to hour-long exercise-to-music classes twice weekly to maintain strength and have fun), and we monitor his diet so that he is hydrated and consumes adequate protein. Add a sprinkling of car pool Karaoke (we sing out loud in the car), laughter (always having fun) and kindness (mutual understanding) and there we have it. Dad has little to no memory, and occasional confusion, but he is happy and he lives a meaningful life.
Thanks for all the wonderful posts, vignettes and poetry. We must keep on educating (and researching, so they say), and create that change!
Kate G.
Kate G. mistakenly commented anonymously; thankfully, she sent me a follow-up email that said:
“Hi Susan,
I have been reading your blog for some time now, I KNOW we are totally aligned! We have so many similar stories you and I!
I left a glam life and career in Europe to come back to Australia and be with my parents. My mum had cancer, dad was fine. Then when dad was left on his own I began to notice some changes in his behaviour that was beyond grief. Off we went to doctor, then scans etc, then memory clinic, then gerontologist, then… the Alzheimer’s ride took off! Amazing times!”
You said it Kate. I’m glad you reached out to share your experience. #FightTheGoodFight #WeCanCareBetter #WhereverWeAre
~~~~~~~~~~~~~~~~
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“As a retired medical writer and care partner for my parents (both with dementia/Alzheimer’s), I am relieved to see a growing number of health care professionals who have stopped focusing on the cure and ineffective treatment options. Throwing Big Money at Big Pharma is a Big Mistake.
Concurrent to understanding the underlying physiological causes of dementia, we need to immediately address the emotional and psychological symptoms and fallout of living with it, for both the people who have it, and those who are their companions and carers. This aspect of living with dementia is largely ignored at the moment.
We also need financial assistance to help people living with dementia (PLWD) stay in their homes, given the atrocities committed in residences and long-term care facilities. Healthcare systems throughout North America and elsewhere in the world (e.g. the UK) are in crisis and are ill-equipped to do what is required; they are too big to shift quickly enough to meet the needs.
We need open-minded entrepreneurs to step up and use innovative resources to ensure a good quality of life for PLWD. People living with dementia are angry and restless and with good reason; they need to be heard, not shut up, put away and restrained. And antipsychotics? No way. We need a paradigm shift, and it’s not going to happen until more people like you, Dr. Power, with your credentials and credibility, step up and speak the plain truth. Thank you.“
Read more of Lorrie Beauchamp’s insightful thoughts on ADRD and being a care partner on her blog Unforgettable. Follow her on twitter here.
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“you said it!” is a place to discover informed comments, inspiring thoughts, short stories, good ideas, provocative opinions, quotable quotes and noteworthy snippets from across my worldwide network.
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My Alzheimer's Story 
Dearest and Amazing Susan,
Thank you for this. I am studying a Bachelor’s degree in Dementia Care and fully understand your frustration. The main reason I am at university now is because I was fed up with healthcare workers not listening to me, the primary carer for my wonderful 90-year-old dad who is LIVING WELL with Alzheimer’s disease.
Sadly, arming myself with detailed academic knowledge hasn’t helped much. Whatever I have to say still falls on deaf ears. No, I am not a registered nurse, doctor, or health care worker. BUT, I do know what keeps my dad safe and happy, and I have living proof, even though it’s not what academics and researchers might consider “evidence.”
It’s as you describe, Susan, — behaviour is the same for all human beings whether one has dementia or not! It’s a constant battle to re-educate the people who are involved in my father’s care. He lives alone in his own place, with a carefully programmed roster of paid care givers who enable and assist him with daily life such as meals, dressing, hygiene, exercise and social interaction.
It takes him time to develop trust, respect and feelings of companionship with these caregivers, but when he develops that trust, and feels safe and secure with someone then ALL IS WELL. However, when an agency care manager arbitrarily decides to change the roster and sends a ‘stranger’ in to help with his shower you can imagine his reaction (and we would all feel the same).
Sometimes they just don’t get it.
At university, I am obliged to study the research that you refer to and often have to laugh. It is all so simple and obvious – to people like you and I. We have to keep spreading the word and educating all who cross our paths. People do not believe me when I tell them my dad is happy and well – he is on no medications (just probiotics and vitamin D), uses no mobility aids (he goes to hour-long exercise-to-music classes twice weekly to maintain strength and have fun), and we monitor his diet so that he is hydrated and consumes adequate protein. Add a sprinkling of car pool Karaoke (we sing out loud in the car), laughter (always having fun) and kindness (mutual understanding) and there we have it. Dad has little to no memory, and occasional confusion, but he is happy and he lives a meaningful life.
Thanks for all the wonderful posts, vignettes and poetry. We must keep on educating (and researching, so they say), and create that change!
Kate G.
Kate G. mistakenly commented anonymously; thankfully, she sent me a follow-up email that said:
“Hi Susan,
I have been reading your blog for some time now, I KNOW we are totally aligned! We have so many similar stories you and I!
I left a glam life and career in Europe to come back to Australia and be with my parents. My mum had cancer, dad was fine. Then when dad was left on his own I began to notice some changes in his behaviour that was beyond grief. Off we went to doctor, then scans etc, then memory clinic, then gerontologist, then… the Alzheimer’s ride took off! Amazing times!”
You said it Kate. I’m glad you reached out to share your experience. #FightTheGoodFight #WeCanCareBetter #WhereverWeAre