#DiverseAlz Transcript
Healthcare social media transcript of the #DiverseAlz hashtag.
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See #DiverseAlz Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Diverse Alzheimers @DiverseAlz Good day wherever you are and welcome to #Diversealz here to talk about dementia - the word, what it means and if it is time to change...so be prepared to get creative! |
| Diverse Alzheimers @DiverseAlz Our one word icebreaker is to complete this sentence. Dementia is... #diversealz |
| Diverse Alzheimers @DiverseAlz RT @Shedfieldlodge: |
| Diverse Alzheimers @DiverseAlz RT @nursesKidONE: How much should they be paid? 2017:"No occupation is projected to add more workers than personal-care aides, who perform non-medical duties for older Americans, such as bathing and cooking. Along with home-health aides...."#DiverseAlz #AlzChat via @DKThomp https://t.co/Eic3JYevxo |
| Diverse Alzheimers @DiverseAlz RT @nchadborn: |
| Diverse Alzheimers @DiverseAlz RT @nursesKidONE: “This year's Doodle for Google theme was ‘When I grow up, I hope...’ ...The rendering also depicts an adult version of Artantza standing in front of the framed portrait while caring for her mother as she ages.” https://t.co/TKFsg8qegk via @usatoday #DiverseAlz #AlzChat |
| Diverse Alzheimers @DiverseAlz #Diversealz Thurs and we are talking about dementia - the word. |
 | nursesKidONE @nursesKidONE RT @DiverseAlz: Good day wherever you are and welcome to #Diversealz here to talk about dementia - the word, what it means and if it is time to change...so be prepared to get creative! |
 | Barbara Ivey @alzbarbie RT @DiverseAlz: #Diversealz Thurs and we are talking about dementia - the word. |
| nursesKidONE @nursesKidONE RT @DiverseAlz: #Diversealz Thurs and we are talking about dementia - the word. |
| Diverse Alzheimers @DiverseAlz Question 1: Why do you think the word dementia stirs several emotions? (think word first!) #diversealz |
| nursesKidONE @nursesKidONE RT @DiverseAlz: Our one word icebreaker is to complete this sentence. Dementia is... #diversealz |
| Diverse Alzheimers @DiverseAlz Dementia is....petrifying via @TommyTommytee18 #diversealz |
| Diverse Alzheimers @DiverseAlz RT @helenfindlay: |
| Barbara Ivey @alzbarbie @DiverseAlz Q1: The word 'dementia' stirs up emotions because it is vague & ominous. It's a sense of foreboding - that something serious & terrible is on the horizon. #Diversealz |
| Barbara Ivey @alzbarbie RT @DiverseAlz: Dementia is....petrifying via @TommyTommytee18 #diversealz |
| Barbara Ivey @alzbarbie RT @helenfindlay: |
| Diverse Alzheimers @DiverseAlz Shock, fear (see @dr_shibley point via #diversealz dementia diversity day), petrifying....thoughts around dementia |
| Barbara Ivey @alzbarbie RT @helenfindlay: |
| Barbara Ivey @alzbarbie RT @DiverseAlz: Shock, fear (see @dr_shibley point via #diversealz dementia diversity day), petrifying....thoughts around dementia |
| Barbara Ivey @alzbarbie RT @DementiaView: |
| Diverse Alzheimers @DiverseAlz RT @alzbarbie: @DiverseAlz Q1: @DiverseAlz Q1: The word 'dementia' stirs up emotions because it is vague & ominous. It's a sense of foreboding - that something serious & terrible is on the horizon. #Diversealz |
| Diverse Alzheimers @DiverseAlz Goodness. Hope you are all reading the timeline...foreboding, fear etc rules though recognise these are also the thoughts of many along the different stages of the journey. Plus people who are navigating that journey #diversealz. Got answers to question 1 via icebreaker |
| Diverse Alzheimers @DiverseAlz Question 2: Is there an argument for a name change even though it appears to be set in stone? #diversealz |
| Diverse Alzheimers @DiverseAlz RT @helenfindlay: |
| Barbara Ivey @alzbarbie RT @helenfindlay: |
| Diverse Alzheimers @DiverseAlz via @dementiaview tweets about some organisations that have changed their names #diversealz |
| Diverse Alzheimers @DiverseAlz RT @LynnGamble20: |
| Barbara Ivey @alzbarbie @DiverseAlz Q2: Or is it time to do away with the comprehensive term entirely. Instead use only specific terms: #LewyBodies, #FTD, #Alzheimer's etc.? #Diversealz |
| nursesKidONE @nursesKidONE Agreed, but also cruel is misdiagnosis - or nondiagnosis - of specific type by professionals - who feel entirely too comfortable ignoring input from family member. Also cruel when term inappropriately applied to someone, e.g., w/ a hearing impairment or denied care.#diversealz |
| nursesKidONE @nursesKidONE RT @DiverseAlz: Question 1: Question 1: Why do you think the word dementia stirs several emotions? (think word first!) #diversealz |
| Diverse Alzheimers @DiverseAlz Question 2 asks if there is an argument for changing the name dementia. That said, there are countries where the word dementia does not exist. We'll get to that, for question 3 otherwise, will forget #diversealz |
| Barbara Ivey @alzbarbie RT @nursesKidONE: Agreed, but also cruel is misdiagnosis - or nondiagnosis - of specific type by professionals - who feel entirely too comfortable ignoring input from family member. Also cruel when term inappropriately applied to someone, e.g., w/ a hearing impairment or denied care.#diversealz |
| Barbara Ivey @alzbarbie RT @DementiaView: |
| Barbara Ivey @alzbarbie RT @TommyTommytee18: |
| Barbara Ivey @alzbarbie RT @TommyTommytee18: |
| Diverse Alzheimers @DiverseAlz Question 3: Would it be simpler for countries to create their own word for dementia, where the word does not exist in their language? #diversealz |
| Diverse Alzheimers @DiverseAlz RT @alzbarbie: @DiverseAlz Q2: Or is it time to do away with the comprehensive term entirely. Instead use only specific terms: @DiverseAlz Q2: Or is it time to do away with the comprehensive term entirely. Instead use only specific terms: #LewyBodies, #FTD, #Alzheimer's etc.? #Diversealz |
 | the DAWN Method @theDAWNmethod RT @TommyTommytee18: |
| Diverse Alzheimers @DiverseAlz is it time to do away with the comprehensive term entirely. Instead use only specific terms: #LewyBodies, #FTD, #Alzheimer's? tweets @alzbarbie #diversealz |
| Barbara Ivey @alzbarbie RT @helenfindlay: |
| Diverse Alzheimers @DiverseAlz RT @DeeDavies12: |
| Barbara Ivey @alzbarbie RT @DeeDavies12: |
| nursesKidONE @nursesKidONE Respectfully, I think this argument may be easier to accept if you feel that you received an appropriate diagnosis and have had at least some success in getting appropriate support. When that does not happen, then you have more reasons to question why it didn't. #diversealz |
| Diverse Alzheimers @DiverseAlz RT @TommyTommytee18: |
| nursesKidONE @nursesKidONE RT @helenfindlay: |
| Diverse Alzheimers @DiverseAlz RT @nursesKidONE: Respectfully, I think this argument may be easier to accept if you feel that you received an appropriate diagnosis and have had at least some success in getting appropriate support. When that does not happen, then you have more reasons to question why it didn't. #diversealz |
| Diverse Alzheimers @DiverseAlz Question 4 is coming up from a comment in the timeline and perhaps we can focus on that. Indeed...many people have suggested it....so it's a why question #diversealz |
| Diverse Alzheimers @DiverseAlz Question 4: Do you think it would be easier to refer to type of dementia (if get diagnosis that is) and if so, why? #diversealz |
| Diverse Alzheimers @DiverseAlz RT @TommyTommytee18: |
| Diverse Alzheimers @DiverseAlz RT @helenfindlay: |
| Barbara Ivey @alzbarbie @helenfindlay @DiverseAlz Excellent question...#diversealz |
| Diverse Alzheimers @DiverseAlz Yes... continually say what is in a word but much is in it. @helenfindlay provides an example of usage tweeting "same word, different meanings" referring to media, articles, clinical settings....#diversealz On #diversealz, we see a range of definitions. Any positives by choice? |
 | Commonside Trust @CommonsideTrust RT @TommyTommytee18: |
| nursesKidONE @nursesKidONE It's time for the medical & nursing professions to do away with the term "dementia" in order to raise the standards of care 1) for diagnosis; 2) for support after diagnosis; 3) for standards of care/support provided by residential facilities. #diversealz |
| Diverse Alzheimers @DiverseAlz RT @helenfindlay: |
| Diverse Alzheimers @DiverseAlz @helenfindlay This is the point. Have read many times that it only becomes clear at autopsy. Where are the scientists? #diversealz |
| Diverse Alzheimers @DiverseAlz RT @nursesKidONE: It's time for the medical & nursing professions to do away with the term "dementia" in order to raise the standards of care 1) for diagnosis; 2) for support after diagnosis; 3) for standards of care/support provided by residential facilities. #diversealz |
| Barbara Ivey @alzbarbie RT @nursesKidONE: It's time for the medical & nursing professions to do away with the term "dementia" in order to raise the standards of care 1) for diagnosis; 2) for support after diagnosis; 3) for standards of care/support provided by residential facilities. #diversealz |
| Barbara Ivey @alzbarbie RT @TommyTommytee18: |
| Diverse Alzheimers @DiverseAlz Thoughts on this MT @nursesKidONE It's time for the medical & nursing professions to do away with the term "dementia" in order to raise the standards [and] for standards of care/support provided by residential facilities. #diversealz |
| Barbara Ivey @alzbarbie RT @TommyTommytee18: |
| Barbara Ivey @alzbarbie RT @DiverseAlz: @helenfindlay This is the point. Have read many times that it only becomes clear at autopsy. Where are the scientists? #diversealz |
| nursesKidONE @nursesKidONE @TommyTommytee18 It won't make any difference to you, but I have to speak up for my mother and my stepfather and for people in similar situations who don't have voices that are heard in the formation of current policies and research strategies. #diversealz |
| Diverse Alzheimers @DiverseAlz Question 5: Can there be two definitions, so to speak, for dementia, think general public and people who hear words its dementia, think dread, think Alzheimer's, ? #diversealz |
| Diverse Alzheimers @DiverseAlz A bit of light relief before we unpack some answers via question 6 #diversealz |
 | Sue Newsome @suenewse99 RT @TommyTommytee18: |
| Barbara Ivey @alzbarbie RT @TommyTommytee18: |
| Diverse Alzheimers @DiverseAlz Question 6: You have been asked to devise a new word that can stand beside or replace dementia. What would it be? #diversealz |
| nursesKidONE @nursesKidONE Yes, so more people can be informed, including doctors and nurses, nursing homes...and the lawyers and judges who also make guardianship decisions affecting the lives of people living with neurological conditions... all of them. #diversealz |
| Diverse Alzheimers @DiverseAlz Think question 6 highlights difficulties with the word and it is an umbrella term but let's go there and get creative in various ways. #diversealz |
| nursesKidONE @nursesKidONE @helenfindlay @DiverseAlz My understanding is that imaging is also relevant in diagnoses, because it can identify parts of the brain that are affected but is very expensive. I also understand that a brain autopsy is still considered the gold standard for diagnosis. #diversealz |
| Diverse Alzheimers @DiverseAlz Of course, we are not ignoring the medical model...#diversealz but thinking about interpretations and especially in lower middle income countries given how the word can be transcribed some times. So... |
| Diverse Alzheimers @DiverseAlz RT @nursesKidONE: @helenfindlay @DiverseAlz My understanding is that imaging is also relevant in diagnoses, because it can identify parts of the brain that are affected but is very expensive. I also understand that a brain autopsy is still considered the gold standard for diagnosis. #diversealz |
| nursesKidONE @nursesKidONE RT @DiverseAlz: @helenfindlay This is the point. Have read many times that it only becomes clear at autopsy. Where are the scientists? #diversealz |
| Barbara Ivey @alzbarbie @DiverseAlz Q6: Memory Loss Syndrome (long term or short term; temporary or permanent) #Diversealz |
| nursesKidONE @nursesKidONE RT @DiverseAlz: Thoughts on this MT @nursesKidONE It's time for the medical & nursing professions to do away with the term "dementia" in order to raise the standards [and] for standards of care/support provided by residential facilities. #diversealz |
| Diverse Alzheimers @DiverseAlz Arguably, dementia is a word that says instant stigma and can say that it is not the same as cancer #Diversealz |
| Diverse Alzheimers @DiverseAlz RT @alzbarbie: @DiverseAlz Q6: @DiverseAlz Q6: Memory Loss Syndrome (long term or short term; temporary or permanent) #Diversealz |
| Diverse Alzheimers @DiverseAlz RT @TommyTommytee18 All they have to do is say This is Mr Jones he has Alzheimer’s or this is Mrs Smith she has Frontotemporal. They don’t even have to mention the dementia word #diversealz |
 | Christine Collins MBE @christinezoo RT @helenfindlay: |
| Diverse Alzheimers @DiverseAlz Learning dementia is getting easier to diagnose, which is great. Argue The downside is for people who have not received a diagnosis #diversealz |
| Diverse Alzheimers @DiverseAlz RT @DeeDavies12: |
| Barbara Ivey @alzbarbie RT @DiverseAlz: RT @TommyTommytee18 All they have to do is say This is Mr Jones he has Alzheimer’s or this is Mrs Smith she has Frontotemporal. They don’t even have to mention the dementia word #diversealz |
| Diverse Alzheimers @DiverseAlz Dementia is extremely complex @Cathygr7 reminds us. #diversealz |
| nursesKidONE @nursesKidONE To add to confusion, you have 1) research framework developed by @alzassociation w/ the NIA establishing an Alzheimer's continuum along w/ 2) reports of a blood test for the presence of amyloid referred to in media as a test for "Alzheimer's". Confusion is deliberate.#diversealz |
| Diverse Alzheimers @DiverseAlz You won't believe question 8 but believe it! #diversealz |
| Christine Collins MBE @christinezoo RT @helenfindlay: |
| Barbara Ivey @alzbarbie RT @nursesKidONE: To add to confusion, you have 1) research framework developed by @alzassociation w/ the NIA establishing an Alzheimer's continuum along w/ 2) reports of a blood test for the presence of amyloid referred to in media as a test for "Alzheimer's". Confusion is deliberate.#diversealz |
| Diverse Alzheimers @DiverseAlz Question 8 Dementia is complicated as we see, so why talk about changing the name? #diversealz |
| Diverse Alzheimers @DiverseAlz Need to tweet question 9 before forget and that is a did #diversealz tweet that too! #conversations |
| Diverse Alzheimers @DiverseAlz Question 9: Could there any value in Alzheimer's organisations, changing their name(s) to or to include dementia given their interests, in the main, to cover all dementias? #diversealz There has been a name change in Australia |
| Diverse Alzheimers @DiverseAlz RT @helenfindlay: |
| Barbara Ivey @alzbarbie @helenfindlay @DiverseAlz Alzheimer's is a brain disease. I've yet to ever hear this classification used for dementia. #Diversealz |
| Diverse Alzheimers @DiverseAlz RT @DementiaView: |
| Diverse Alzheimers @DiverseAlz RT @alzbarbie: @helenfindlay @DiverseAlz Alzheimer's is a brain disease. I've yet to ever hear this classification used for dementia. #Diversealz |
| nursesKidONE @nursesKidONE The current standard of care for "dementia" and Alzheimer's keeps the standards of training/support for paid & family carers low along with the wages for paid carers. Will not be improved until importance of skills of carers in diagnosis & support is recognized. #diversealz |
| Diverse Alzheimers @DiverseAlz Re: @helenfindlay point and hearing dementia referred to as brain disease...appears many still think dementia is solely memory loss and Alzheimer's #diversealz |
| Barbara Ivey @alzbarbie Need to get back to work. Will try to catch up later. Thanks for the chat! #Diversealz |
| Diverse Alzheimers @DiverseAlz RT @nursesKidONE: The current standard of care for "dementia" and Alzheimer's keeps the standards of training/support for paid & family carers low along with the wages for paid carers. Will not be improved until importance of skills of carers in diagnosis & support is recognized. #diversealz |
| Diverse Alzheimers @DiverseAlz RT @TommyTommytee18: |
| Diverse Alzheimers @DiverseAlz RT @helenfindlay: |
| Diverse Alzheimers @DiverseAlz RT @helenfindlay: |
| Diverse Alzheimers @DiverseAlz MT @DementiaView #diversealz Is the word #Dementia so terrifying? We Have Dementia Friends ... Dementia Awareness etc I would go for the positive dementia |
| nursesKidONE @nursesKidONE RT @helenfindlay: |
| Diverse Alzheimers @DiverseAlz Words aside...question 10 coming up to change the slant of this conversation and a hint...we have been so busy talking about the word #diversealz |
| Diverse Alzheimers @DiverseAlz Question 10: Definitions aside, what are the most important issues around dementia? Care? After all, our timeline has told us that fear and host of other words come to mind on hearing it for the first time via diagnosis #diversealz |
| nursesKidONE @nursesKidONE @TommyTommytee18 I am saying that policies and strategies are being pursued which rely on the misunderstandings of the words "dementia" and "Alzheimer's." #diversealz |
 | Ruth Eley @RuthE_LSN RT @TommyTommytee18: |
#DiverseAlz content from Twitter.