#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 and doubt. |
| Diverse Alzheimers @DiverseAlz Dementia and doubt. Lots of things spring to mind when we think about doubt with regard to dementia. #diversealz |
| Diverse Alzheimers @DiverseAlz So let’s start with our icebreaker. What. Do you think of when you hear the words doubt and dementia. That simple...or is it? #diversealz |
 | nursesKidONE @nursesKidONE RT @DiverseAlz: Good day wherever you are and welcome to #diversealz here to talk about dementia and doubt. |
| nursesKidONE @nursesKidONE RT @DiverseAlz: Dementia and doubt. Lots of things spring to mind when we think about doubt with regard to dementia. #diversealz |
| Diverse Alzheimers @DiverseAlz We are asking as an icebreaker, what springs to mind on hearing the words doubt and dementia #diversealz |
| Diverse Alzheimers @DiverseAlz Welcome to @nursesKidONE #diversealz |
| nursesKidONE @nursesKidONE RT @DiverseAlz: So let’s start with our icebreaker. What. Do you think of when you hear the words doubt and dementia. That simple...or is it? #diversealz |
| Diverse Alzheimers @DiverseAlz We have an agenda of course re: dementia and doubt conversation. We will be looking at three main issues but our icebreaker might pull up some other things. #diversealz |
| Diverse Alzheimers @DiverseAlz Doubt will get much response immediately from icebreaker asking what springs to mind when you think of doubt and dementia! Let’s keep it in mind but start with first question! #diversealz |
| Diverse Alzheimers @DiverseAlz First thing for #diversealz is doubt that diagnosis is the right one. What does it mean to say dementia and leave it like that, so here goes #diversealz |
| Diverse Alzheimers @DiverseAlz Question 1: is one right to have doubts about a diagnosis and if so, why? This is not a question about “fake dementia” or “faking dementia” #diversealz. That question is yet to come. |
| Diverse Alzheimers @DiverseAlz Welcome @helenfindlay and to @LEAD_Coalition thanks for watching if the case! #DiverseAlz |
| Diverse Alzheimers @DiverseAlz RT @TommyTommytee18: |
| Diverse Alzheimers @DiverseAlz @TommyTommytee18 Yes. We asked that earlier but will make it question two. First, diagnosis. Dementia is often not enough even though realise can be difficult to get exact type. #DiverseAlz |
 | 🥇 marie goudreau 👈🏼 😊 🐦⬛ 🇨🇦 @Justmemarie2 RT @TommyTommytee18: |
| Diverse Alzheimers @DiverseAlz @TommyTommytee18 It can take months and months of tests if one is lucky #diversealz |
| nursesKidONE @nursesKidONE Geriatrician recommending that my mom be sent home instead of to an inpatient rehab program “because of the dementia.” Showed doctors short video of her walking & pushing shopping cart in grocery store approx 6 weeks earlier. Professionals were indifferent or hostile. #diversealz |
| Diverse Alzheimers @DiverseAlz Reading two tweets and seeing, already, the complexities of this. Make it three: importance of diagnosis, months for testing for diagnosis, sometimes not months of testing and then assumptions see @nursesKidONE @TommyTommytee18 tweets for question 2 - our 2nd theme #diversealz |
| Diverse Alzheimers @DiverseAlz RT @TommyTommytee18: |
| Diverse Alzheimers @DiverseAlz RT @Shedfieldlodge: |
| Diverse Alzheimers @DiverseAlz RT @Shedfieldlodge: |
| nursesKidONE @nursesKidONE @ThatVDOVault @DiverseAlz I agree. But it can be difficult to do the kind of research that needs to be done if you don’t have anyone to guide who is knowledgeable abt dementias beyond the stereotypes & very expensive if you don’t have access to an academic library. #diversealz |
 | billshankly💙 @williamshankly RT @TommyTommytee18: |
| Diverse Alzheimers @DiverseAlz RT @nursesKidONE: @ThatVDOVault @DiverseAlz I agree. But it can be difficult to do the kind of research that needs to be done if you don’t have anyone to guide who is knowledgeable abt dementias beyond the stereotypes & very expensive if you don’t have access to an academic library. #diversealz |
| Diverse Alzheimers @DiverseAlz Question 2 coming up as it follows on from last question #diversealz |
| Diverse Alzheimers @DiverseAlz Question 2: why would people doubt a diagnosis? #diversealz any examples? |
| Diverse Alzheimers @DiverseAlz Argue that many doubters have no clue and do not understand what dementia really means or entails #diversealz |
| nursesKidONE @nursesKidONE @DiverseAlz A1. Definitely think verbal language issues, including use of screening tests that rely on verbal capabilities, are barriers to accurate diagnoses of language dementias such as #PPA —along w/professional hubris when one raises questions abt a diagnosis. #diversealz |
| Diverse Alzheimers @DiverseAlz RT @nursesKidONE: @DiverseAlz A1. Definitely think verbal language issues, including use of screening tests that rely on verbal capabilities, are barriers to accurate diagnoses of language dementias such as #PPA —along w/professional hubris when one raises questions abt a diagnosis. #diversealz |
| Diverse Alzheimers @DiverseAlz A @nursesKidONE tweet mentions language issues (right) as one of the barriers to curate diagnosis. Add the examinations, culture, ethnicity, which is broad. Inclusion #diversealz. Assumptions can be made |
 | Caroline @journeyofcareM @DiverseAlz #DiverseAlz People doubt you can still remain much the same person in many ways with dementia. Late joining in but better late than... |
| nursesKidONE @nursesKidONE Unspecified dementia is a diagnosis in the US. When it appeared on discharge after my stepfather’s hospitalization for heart failure, I asked how he was Dxed w/o his hearing aids that I’d been told to take home. #diversealz |
| nursesKidONE @nursesKidONE RT @Shedfieldlodge: |
| Diverse Alzheimers @DiverseAlz RT @journeyofcareM: @DiverseAlz #DiverseAlz People doubt you can still remain much the same person in many ways with dementia. Late joining in but better late than... |
 | Sword⚔️&Torch🔦of God🤺🛡️📖🩺🏥 @thompsonb2569 RT @Shedfieldlodge: |
| Caroline @journeyofcareM @DiverseAlz Q. 1 Best to doubt until all other ailments/diseases are ruled out. #DiverseAlz |
 | O'Bannion in NYC USA @LongTermCareCIA RT @nursesKidONE: Geriatrician recommending that my mom be sent home instead of to an inpatient rehab program “because of the dementia.” Showed doctors short video of her walking & pushing shopping cart in grocery store approx 6 weeks earlier. Professionals were indifferent or hostile. #diversealz |
| nursesKidONE @nursesKidONE But I wonder if someone who is elderly will get tested for purposes of diagnosis the way that a younger person would be. In my experience: NO! #diversealz |
| nursesKidONE @nursesKidONE RT @DiverseAlz: @TommyTommytee18 It can take months and months of tests if one is lucky #diversealz |
| Diverse Alzheimers @DiverseAlz RT @nursesKidONE: But I wonder if someone who is elderly will get tested for purposes of diagnosis the way that a younger person would be. In my experience: NO! #diversealz |
| Diverse Alzheimers @DiverseAlz RT @journeyofcareM: @DiverseAlz Q. 1 Best to doubt until all other ailments/diseases are ruled out. #DiverseAlz |
| Diverse Alzheimers @DiverseAlz RT @helenfindlay: |
 | 2centscorner @2centscorner @DiverseAlz A1. Compared to a cancer diagnosis, I believe many don’t question the diagnosis of dementia, and just go with it. Also, due to the societal prestige status given to doctors, many feel, “they must be correct.” #diversealz |
| Caroline @journeyofcareM @TommyTommytee18 @DiverseAlz #DiverseAlz One thing I don't have much doubt about, is that I have a high risk of getting dementia myself as mother has it, her mother did too. Might even have it in early stages already and not know, but sometimes, I do wonder. |
| 2centscorner @2centscorner RT @TommyTommytee18: |
| Diverse Alzheimers @DiverseAlz @LynnGamble20 How about the type or were you told? #diversealz |
| Diverse Alzheimers @DiverseAlz RT @journeyofcareM: @TommyTommytee18 @DiverseAlz #DiverseAlz One thing I don't have much doubt about, is that I have a high risk of getting dementia myself as mother has it, her mother did too. Might even have it in early stages already and not know, but sometimes, I do wonder. |
| Diverse Alzheimers @DiverseAlz RT @2centscorner: @DiverseAlz A1. Compared to a cancer diagnosis, I believe many don’t question the diagnosis of dementia, and just go with it. Also, due to the societal prestige status given to doctors, many feel, “they must be correct.” #diversealz |
| 2centscorner @2centscorner RT @nursesKidONE: Geriatrician recommending that my mom be sent home instead of to an inpatient rehab program “because of the dementia.” Showed doctors short video of her walking & pushing shopping cart in grocery store approx 6 weeks earlier. Professionals were indifferent or hostile. #diversealz |
| nursesKidONE @nursesKidONE Respectfully, I think the diagnosis is given easily to elderly patients in hospitals whenever there is a communication problem. It also gives professionals license to ignore the wishes expressed by these patients. #diversealz |
| Diverse Alzheimers @DiverseAlz See @2centscorner tweet that some people do not question diagnosis. That they can take dementia as dementia. Is a knowledge thing? #DiverseAlz |
| 2centscorner @2centscorner RT @Shedfieldlodge: |
| Caroline @journeyofcareM @DiverseAlz The attitude that there is nothing that can be done is absolute nonsense & should never be accepted. Much can always be done in almost any situation ( life, generally ) Just have to show the effect of music for example - transformation. #DiverseAlz |
| Diverse Alzheimers @DiverseAlz RT @journeyofcareM: @DiverseAlz The attitude that there is nothing that can be done is absolute nonsense & should never be accepted. Much can always be done in almost any situation ( life, generally ) Just have to show the effect of music for example - transformation. #DiverseAlz |
| nursesKidONE @nursesKidONE RT @DiverseAlz: A @nursesKidONE tweet mentions language issues (right) as one of the barriers to curate diagnosis. Add the examinations, culture, ethnicity, which is broad. Inclusion #diversealz. Assumptions can be made |
| Diverse Alzheimers @DiverseAlz Now we get to a bit of bitty gritty and what the research also says. Picking up on a tweet via @ThatVDOVault it without prejudice. Just mentioning statistics. #diversealz |
| nursesKidONE @nursesKidONE Amen to that! Won’t repeat how my mom ended up in restraints! #diversealz |
| nursesKidONE @nursesKidONE RT @Shedfieldlodge: |
| billshankly💙 @williamshankly RT @TommyTommytee18: |
| nursesKidONE @nursesKidONE RT @helenfindlay: |
| nursesKidONE @nursesKidONE RT @journeyofcareM: @DiverseAlz Q. 1 Best to doubt until all other ailments/diseases are ruled out. #DiverseAlz |
| nursesKidONE @nursesKidONE RT @LynnGamble20: |
| nursesKidONE @nursesKidONE RT @TommyTommytee18: |
| Diverse Alzheimers @DiverseAlz Some people could doubt the research. Think of all the statistics surrounding members from BME who are susoetibke to Alzheimer’s or Vascular Dementia...actually everything? So...doubt can creep in? @arcad_ug #diversealz |
| Diverse Alzheimers @DiverseAlz RT @LynnGamble20: |
 | Prof BronwynHemsley @BronwynHemsley RT @nursesKidONE: Respectfully, I think the diagnosis is given easily to elderly patients in hospitals whenever there is a communication problem. It also gives professionals license to ignore the wishes expressed by these patients. #diversealz |
| Diverse Alzheimers @DiverseAlz Question 3 How does the don’t look like you/s-he has Dementia phrase come across? #diversealz. |
| Diverse Alzheimers @DiverseAlz RT @helenfindlay: |
| 2centscorner @2centscorner @ThatVDOVault @DiverseAlz Yes, good points. However, fear and doubt are two different things. Most elderly today have a sort of bonding relationship with their PCP, and do not delve deeper unless instructed or encouraged to do so. (My mom baked cakes for her PCP.) #diversealz |
| Caroline @journeyofcareM @DiverseAlz #diverseAlz And more of a rotten diagnosis as 'Cancer can be beaten " but dementia doesn't have a positive catchphrase . One doesn't leave the dr's office with a fighting spirit , but many ppl with it are showing it's not a instant death sentence by any means. Bravo ! |
| nursesKidONE @nursesKidONE RT @2centscorner: @DiverseAlz A1. Compared to a cancer diagnosis, I believe many don’t question the diagnosis of dementia, and just go with it. Also, due to the societal prestige status given to doctors, many feel, “they must be correct.” #diversealz |
 | S Olson, B.S, J.D. @ThatVDOVault @2centscorner @DiverseAlz Not my experience. Only true of older old who have had same PCP for a long time & as we are seeing increasing mobility in society, that lack of long established doctor-patient relationship & trust is a problem. Also consider type of #dementia #DiverseAlz |
| Caroline @journeyofcareM @DiverseAlz Q.3 To those that say you don't look like you have dementia , I'd reply " Well, it's all in your mind " #DiverseAlz |
 | JOANNA 🐕🐈🐭🐁🐰🐴👮 @charitybegin4 RT @TommyTommytee18: |
| JOANNA 🐕🐈🐭🐁🐰🐴👮 @charitybegin4 RT @TommyTommytee18: |
| JOANNA 🐕🐈🐭🐁🐰🐴👮 @charitybegin4 RT @TommyTommytee18: |
| JOANNA 🐕🐈🐭🐁🐰🐴👮 @charitybegin4 RT @TommyTommytee18: |
| nursesKidONE @nursesKidONE RT @journeyofcareM: @DiverseAlz The attitude that there is nothing that can be done is absolute nonsense & should never be accepted. Much can always be done in almost any situation ( life, generally ) Just have to show the effect of music for example - transformation. #DiverseAlz |
| JOANNA 🐕🐈🐭🐁🐰🐴👮 @charitybegin4 RT @helenfindlay: |
| Diverse Alzheimers @DiverseAlz From early days #diversealz has asked what does dementia look like. That said we are living in a time where young(we) people with dementia are advocating, forming groups (@DementiaAllianc, @DementiaTweets @SURFLiverpool @3NDWG) having a voice, I nfluencing policy #diversealz |
| nursesKidONE @nursesKidONE RT @helenfindlay: |
| billshankly💙 @williamshankly RT @TommyTommytee18: |
| nursesKidONE @nursesKidONE RT @helenfindlay: |
 | Bikerwise @bikerwise @helenfindlay @LynnGamble20 @TommyTommytee18 #diversealz Husband's rarer dementia of PCA was diagnosed 5 years after his original Alzheimer's diagnosis and only then because I fought to get it. |
| nursesKidONE @nursesKidONE RT @LynnGamble20: |
| Diverse Alzheimers @DiverseAlz That said, we hear stories from people with relatives with dementia or supporters who show that age counts for nothing. Abilities @nursesKidONE led to doubters around her dementia #diversealz |
 | Naomi Martin 🇪🇺 🇺🇦 🥤🇬🇪 @GNaomiMartin RT @TommyTommytee18: |
| JOANNA 🐕🐈🐭🐁🐰🐴👮 @charitybegin4 RT @TommyTommytee18: |
| Diverse Alzheimers @DiverseAlz Thank you #diversealz ers for sharing stories re: what amounts to misconceptions about dementia. @LynnGamble20 mentioning husband’s fitness #diversealz |
| 2centscorner @2centscorner RT @LynnGamble20: |
| nursesKidONE @nursesKidONE @ThatVDOVault @TommyTommytee18 @teepasnow I think abt the consultation by a hospital psychiatrist that I arranged for my Mom & how he had nothing to say. No doctor asked me what testing had been done. #diversealz |
| Diverse Alzheimers @DiverseAlz Fitness is a prime example actually. Imagine shock for some doubters when they are outdone by somebody with dementia and it happens. #diversealz |
| Diverse Alzheimers @DiverseAlz RT @helenfindlay: |
| S Olson, B.S, J.D. @ThatVDOVault @bradboyqld @DiverseAlz @2centscorner Maternal half of my family were all downwinders (exposed to above ground nuclear tests from 1945-1960s). 2 grandparents, uncle & aunt all died of cancers. I figure Mom had chemo brain & stress from Dad's increasingly bizarre hurtful behaviors (#FTD/#CTE #dementia) #DiverseAlz |
| nursesKidONE @nursesKidONE RT @helenfindlay: |
| nursesKidONE @nursesKidONE RT @2centscorner: @ThatVDOVault @DiverseAlz Yes, good points. However, fear and doubt are two different things. Most elderly today have a sort of bonding relationship with their PCP, and do not delve deeper unless instructed or encouraged to do so. (My mom baked cakes for her PCP.) #diversealz |
| nursesKidONE @nursesKidONE RT @journeyofcareM: @DiverseAlz #diverseAlz And more of a rotten diagnosis as 'Cancer can be beaten " but dementia doesn't have a positive catchphrase . One doesn't leave the dr's office with a fighting spirit , but many ppl with it are showing it's not a instant death sentence by any means. Bravo ! |
| Diverse Alzheimers @DiverseAlz Question 4 Based on our conversation and what we know, please choose up to four words to describe a person with dementia. Profiling for example as in how football managers look for a striker or something. There is a method to this and it might work or be a bad idea #diversealz |
| 2centscorner @2centscorner @DiverseAlz Dementia represents a part, not the whole. #diversealz |
| nursesKidONE @nursesKidONE RT @helenfindlay: |
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