#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 chat about dementia and the unexpected. A broad topic so let’s see where it takes us. |
| Diverse Alzheimers @DiverseAlz It’s #diversealz chatting about dementia and the unexpected and we have the first question to try and entice you. Hellos will follow! |
| Diverse Alzheimers @DiverseAlz Hello @journeyofcareM hope it isn’t too early to say hello to @helenfindlay @nursesKidONE and wonder if @TommyTommytee18 is back. Do note this is a chat for anyone and everyone! #diversealz |
 | nursesKidONE @nursesKidONE RT @DiverseAlz: Good day wherever you are and welcome to #diversealz here to chat about dementia and the unexpected. A broad topic so let’s see where it takes us. |
| nursesKidONE @nursesKidONE RT @DiverseAlz: It’s #diversealz chatting about dementia and the unexpected and we have the first question to try and entice you. Hellos will follow! |
| Diverse Alzheimers @DiverseAlz Dementia and the unexpected...ever had the idea that at times one should not expect? Sounds like discussion point! #Diversealz |
| Diverse Alzheimers @DiverseAlz @Shedfieldlodge welcome! We are talking bout dementia and the unexpected. Nice to tweet you as didn’t expect to see you this particular week. #Diversealz |
| Diverse Alzheimers @DiverseAlz @Shedfieldlodge @journeyofcareM @helenfindlay @nursesKidONE @TommyTommytee18 Good evening. Any thoughts or thoughts on dementia and the unexpected. #Diversealz |
| Diverse Alzheimers @DiverseAlz Will be good to see how people respond to Question 1 as can be viewed in so many ways and it is not a test. @journeyofcareM looks at issue that also touches on stereotypes so information/knowledge, #diversealz highlights practicalities as in be prepared....who else? |
| Diverse Alzheimers @DiverseAlz RT @helenfindlay: |
| Diverse Alzheimers @DiverseAlz @helenfindlay Yes. Same thought here. Clarity though you have put succinctly. Thanks #diversealz |
| Diverse Alzheimers @DiverseAlz Clarity [of thought] mentioned by @helenfindlay which is an additional reminder that one should not talk at a person with dementia but to and also that some thoughts, acts may return to a person including recognition when thought all lost #diversealz. Even a second is special. |
 | Caroline @journeyofcareM @helenfindlay @DiverseAlz I found that too, like my mother was yesterday. Very engaged all day long, full of energy, even walking without any assistance/walker for a bit. Today, the flop from the flip.#DiverseAlz |
| nursesKidONE @nursesKidONE @DiverseAlz @Shedfieldlodge @journeyofcareM @helenfindlay @TommyTommytee18 I did not expect to learn things about dementia/Alzheimer’s after my mom died that I could-and should- have known from healthcare professionals & I feel I should have been directed to gain more information abt in the presentation by the @alzassociation. #diversealz |
 | Lynda Henderson, born on unceded land. 🖤💛❤ @YODsupporter @DiverseAlz Dementia is unexpected by definition. How it goes for any person is unpredictable. #diversealz |
| Diverse Alzheimers @DiverseAlz RT @YODsupporter: @DiverseAlz Dementia is unexpected by definition. How it goes for any person is unpredictable. #diversealz |
| Diverse Alzheimers @DiverseAlz RT @nursesKidONE: @DiverseAlz @Shedfieldlodge @journeyofcareM @helenfindlay @TommyTommytee18 I did not expect to learn things about dementia/Alzheimer’s after my mom died that I could-and should- have known from healthcare professionals & I feel I should have been directed to gain more information abt in the presentation by the @alzassociation. #diversealz |
| nursesKidONE @nursesKidONE RT @helenfindlay: |
| nursesKidONE @nursesKidONE RT @journeyofcareM: @helenfindlay @DiverseAlz I found that too, like my mother was yesterday. Very engaged all day long, full of energy, even walking without any assistance/walker for a bit. Today, the flop from the flip.#DiverseAlz |
| nursesKidONE @nursesKidONE RT @DiverseAlz: Clarity [of thought] mentioned by @helenfindlay which is an additional reminder that one should not talk at a person with dementia but to and also that some thoughts, acts may return to a person including recognition when thought all lost #diversealz. Even a second is special. |
| Diverse Alzheimers @DiverseAlz So we have our themes based on your tweets. Thanks. Here is question 2 #Diversealz |
| nursesKidONE @nursesKidONE RT @YODsupporter: @DiverseAlz Dementia is unexpected by definition. How it goes for any person is unpredictable. #diversealz |
| nursesKidONE @nursesKidONE RT @DiverseAlz: Will be good to see how people respond to Question 1 as can be viewed in so many ways and it is not a test. @journeyofcareM looks at issue that also touches on stereotypes so information/knowledge, #diversealz highlights practicalities as in be prepared....who else? |
| Diverse Alzheimers @DiverseAlz Question 2: unpredictability. Can we get some thoughts on this. @YODsupporter has mentioned how it differs between individuals. This is important, especially if setting out on journey. #diversealz mentioned be prepared. |
| nursesKidONE @nursesKidONE RT @helenfindlay: |
| Diverse Alzheimers @DiverseAlz With unpredictability comes awareness and just wondering if anyone has seen leaflets from the associations that mention how certain issues will affect people differently. @nursesKidONE alluded to this. From here, it’s easy when you know! #Diversealz |
| Lynda Henderson, born on unceded land. 🖤💛❤ @YODsupporter @DiverseAlz No-one is ever prepared. Not the person receiving the Dx nor those around them. #diversealz |
| Diverse Alzheimers @DiverseAlz RT @YODsupporter: @DiverseAlz No-one is ever prepared. Not the person receiving the Dx nor those around them. #diversealz |
| Diverse Alzheimers @DiverseAlz And with this is one thought via @YODsupporter that no one is ever prepared. Indeed for many the diagnosis can be unexpected and think young onset dementia. But again, awareness of possibilities help? #Diversealz |
| Diverse Alzheimers @DiverseAlz Next week we focus on care homes. The unexpected could be the sudden “decline” in an individual or realisation that a care home would be the best option. #Diversealz |
| Diverse Alzheimers @DiverseAlz RT @Shedfieldlodge: |
| Diverse Alzheimers @DiverseAlz RT @Shedfieldlodge: |
| Caroline @journeyofcareM @helenfindlay @DiverseAlz What was unexpected to me was when I found many newspapers clippings that mum had in a folder dealing with dementia, memory tips etc, with some dated before her diagnosis. She didn't want to put her head in the sand, but face it squarely on. #DiverseAlz |
| Diverse Alzheimers @DiverseAlz RT @journeyofcareM: @helenfindlay @DiverseAlz What was unexpected to me was when I found many newspapers clippings that mum had in a folder dealing with dementia, memory tips etc, with some dated before her diagnosis. She didn't want to put her head in the sand, but face it squarely on. #DiverseAlz |
| nursesKidONE @nursesKidONE @YODsupporter @DiverseAlz A2. The course is more predictable if you accept the inevitability of decline and no interventions or supports are provided after diagnosis, especially if a Dx is accepted based on limited information, such as an MMSE. #diversealz |
| Diverse Alzheimers @DiverseAlz Question 3 has to be a response to @journeyofcareM tweet whose mother had clippings about dementia. See tweet, please. #Diversealz |
| Lynda Henderson, born on unceded land. 🖤💛❤ @YODsupporter @DiverseAlz @nursesKidONE Nope, not in Oz. 1st hurdle is getting a Dx. Referrals are usually then just "go search on the Dementia Australia website". There's no pathway to local services unless diagnosing doctors are local - rare in regional Australia. #diversealz |
| nursesKidONE @nursesKidONE RT @YODsupporter: @DiverseAlz @nursesKidONE Nope, not in Oz. 1st hurdle is getting a Dx. Referrals are usually then just "go search on the Dementia Australia website". There's no pathway to local services unless diagnosing doctors are local - rare in regional Australia. #diversealz |
| Diverse Alzheimers @DiverseAlz Question 3 How important is it to face dementia. One could argue that most people do not want to think or act on it so doing so pre diagnosis or pre anything can be seen as unexpected. In fact, had always been interested in it #diversealz |
| nursesKidONE @nursesKidONE RT @helenfindlay: |
| nursesKidONE @nursesKidONE RT @journeyofcareM: @helenfindlay @DiverseAlz What was unexpected to me was when I found many newspapers clippings that mum had in a folder dealing with dementia, memory tips etc, with some dated before her diagnosis. She didn't want to put her head in the sand, but face it squarely on. #DiverseAlz |
| Caroline @journeyofcareM @helenfindlay @DiverseAlz @Shedfieldlodge @nursesKidONE @TommyTommytee18 Music and its power to revive, or calm/soothe was the unexpected but absolute delight for both myself and my mother. She even tolerates my bad ukelele playing and singing. She loves to sings along. #DiverseAlz |
| Diverse Alzheimers @DiverseAlz RT @journeyofcareM: @helenfindlay @DiverseAlz @Shedfieldlodge @nursesKidONE @TommyTommytee18 Music and its power to revive, or calm/soothe was the unexpected but absolute delight for both myself and my mother. She even tolerates my bad ukelele playing and singing. She loves to sings along. #DiverseAlz |
| Lynda Henderson, born on unceded land. 🖤💛❤ @YODsupporter 8 years after V's Dx I'm learning about advisory services that I never knew existed. We find out these things via FB support groups, which are usually people's only links to others. Of course social media is inaccessible for many. #diversealz |
 | Bikerwise @bikerwise RT @helenfindlay: |
| Bikerwise @bikerwise RT @Shedfieldlodge: |
| Diverse Alzheimers @DiverseAlz Also how important it is to note that many people knew/know about meeting the needs of the individuals they care for. Only that some do not realise it already has a name or accepted definition -person centred care. #Diversealz |
| Diverse Alzheimers @DiverseAlz Look at this... |
| Diverse Alzheimers @DiverseAlz RT @Shedfieldlodge: |
| nursesKidONE @nursesKidONE Agree, but with dementias, public access to relevant and important information from which care could be improved is restricted behind paywalls. That is a very tough barrier if the healthcare professionals themselves aren’t providing the information. #diversealz |
| nursesKidONE @nursesKidONE RT @journeyofcareM: @helenfindlay @DiverseAlz @Shedfieldlodge @nursesKidONE @TommyTommytee18 Music and its power to revive, or calm/soothe was the unexpected but absolute delight for both myself and my mother. She even tolerates my bad ukelele playing and singing. She loves to sings along. #DiverseAlz |
| nursesKidONE @nursesKidONE RT @YODsupporter: 8 years after V's Dx I'm learning about advisory services that I never knew existed. We find out these things via FB support groups, which are usually people's only links to others. Of course social media is inaccessible for many. #diversealz |
| nursesKidONE @nursesKidONE RT @helenfindlay: |
| Diverse Alzheimers @DiverseAlz Some great life stories on the timeline @Shedfieldlodge discovered they had a resident who had worked for British Intelligence, @journeyofcareM’s mother looking ahead at dementia and power of music @helenfindlay? #diversealz |
| Bikerwise @bikerwise #DiverseAlz Some next stages can be guessed, not necessarily when, but progress will go there eventually. Some preparation can make it less of a problem, just part of life, when it does arrive. |
| Lynda Henderson, born on unceded land. 🖤💛❤ @YODsupporter @DiverseAlz There's no way to NOT face it - except for those who simply run away from the person.😉 I would argue that even "denial" (anosognosia) from the person who's been diagnosed affects their interactions with others & so forces confrontation with "reality". #diversealz |
| Diverse Alzheimers @DiverseAlz Dementia and yet this... |
| Diverse Alzheimers @DiverseAlz RT @YODsupporter: @DiverseAlz There's no way to NOT face it - except for those who simply run away from the person.😉 I would argue that even "denial" (anosognosia) from the person who's been diagnosed affects their interactions with others & so forces confrontation with "reality". #diversealz |
 | JOANNA 🐕🐈🐭🐁🐰🐴👮 @charitybegin4 RT @helenfindlay: |
| Caroline @journeyofcareM @DiverseAlz All of us with dementia in the family have, maybe not faced it head on, but pondered the prospect that it will befall them. I, unexpectedly, am petrified if I got a diagnosis. The reason is that my journey won't be like my mums. No children, broken family. #DiverseAlz |
| Diverse Alzheimers @DiverseAlz Veering off for a moment to look at facing dementia and relating it to the unexpected. Question 5. #Diversealz |
| Bikerwise @bikerwise @YODsupporter @DiverseAlz #diversealz I would support that and also suggest that denial limits the positives that can be achieved. |
| Diverse Alzheimers @DiverseAlz Question 5 does a diagnosis of dementia make one face the consequences and if so, how? @YODsupporter mentions how it may affect relationships. Question 6 will take us on to knowledge thanks to @nursesKidONE #Diversealz |
| Diverse Alzheimers @DiverseAlz Do read this... |
| Diverse Alzheimers @DiverseAlz RT @journeyofcareM: @DiverseAlz All of us with dementia in the family have, maybe not faced it head on, but pondered the prospect that it will befall them. I, unexpectedly, am petrified if I got a diagnosis. The reason is that my journey won't be like my mums. No children, broken family. #DiverseAlz |
| Bikerwise @bikerwise #DiverseAlz The unexpected .... I was converted from a couch potato by the need to support my husband in his exercise regime. |
| Lynda Henderson, born on unceded land. 🖤💛❤ @YODsupporter @helenfindlay @DiverseAlz Helen, I disagree. We "carers" immediately take on future responsibilities. For me, it meant stopping work to support V. I had so many questions but no straight answers, other than "residential aged care is inevitable". #diversealz |
| Diverse Alzheimers @DiverseAlz Thanking @journeyofcareM on timeline for her openness. She tweets how her journey if she got dementia (we pray not) would be different to her mother’s as she is an only child and broken family. This is a topic that repeats and we’ll look at in depth soon. So noted. #Diversealz |
| nursesKidONE @nursesKidONE @bikerwise @YODsupporter @DiverseAlz But sometimes denial of anticipated limitations on one’s abilities can lead to positive and unexpected achievements. #diversealz |
| Diverse Alzheimers @DiverseAlz RT @YODsupporter: @helenfindlay @DiverseAlz Helen, I disagree. We "carers" immediately take on future responsibilities. For me, it meant stopping work to support V. I had so many questions but no straight answers, other than "residential aged care is inevitable". #diversealz |
| Diverse Alzheimers @DiverseAlz RT @helenfindlay: |
| nursesKidONE @nursesKidONE RT @bikerwise: #DiverseAlz The unexpected .... I was converted from a couch potato by the need to support my husband in his exercise regime. |
| Diverse Alzheimers @DiverseAlz RT @nursesKidONE: @bikerwise @YODsupporter @DiverseAlz But sometimes denial of anticipated limitations on one’s abilities can lead to positive and unexpected achievements. #diversealz |
| Diverse Alzheimers @DiverseAlz RT @bikerwise: @YODsupporter @DiverseAlz #diversealz I would support that and also suggest that denial limits the positives that can be achieved. |
| Diverse Alzheimers @DiverseAlz RT @Shedfieldlodge: |
| Caroline @journeyofcareM @DiverseAlz @YODsupporter @nursesKidONE What is also most unexpected with dementia is that you never know when you've crossed the line between being capable to making your own decisions, or not. I think it's like the frog in hot water, so gradual it doesn't notice. That's frightening to me. #DiverseAlz |
| Lynda Henderson, born on unceded land. 🖤💛❤ @YODsupporter @helenfindlay @DiverseAlz @nursesKidONE "at the pace of the person" is spot on. I still don't understand why the person with the Dx was talked about, rather than personally addressed by "dementia advisors". It was as if V suddenly had no agency. #diversealz |
| Diverse Alzheimers @DiverseAlz RT @YODsupporter: @helenfindlay @DiverseAlz @nursesKidONE "at the pace of the person" is spot on. I still don't understand why the person with the Dx was talked about, rather than personally addressed by "dementia advisors". It was as if V suddenly had no agency. #diversealz |
| Lynda Henderson, born on unceded land. 🖤💛❤ @YODsupporter @DiverseAlz @journeyofcareM Same for me BTW. #Diversealz |
| Caroline @journeyofcareM @DiverseAlz To clarify - I'm not an only child, I have 3 siblings , I just don't have children of my own. The siblings are the broken family part. #DiverseAlz |
| Diverse Alzheimers @DiverseAlz Would it be too much to say that it would be or was unexpected to be spoken to/addressed with regard. This, as seen @YODsupporter about partner V not being addressed as of present #Diversealz |
| Diverse Alzheimers @DiverseAlz PleAse note |
| Diverse Alzheimers @DiverseAlz RT @journeyofcareM: @DiverseAlz To clarify - I'm not an only child, I have 3 siblings , I just don't have children of my own. The siblings are the broken family part. #DiverseAlz |
| nursesKidONE @nursesKidONE RT @YODsupporter: @helenfindlay @DiverseAlz @nursesKidONE "at the pace of the person" is spot on. I still don't understand why the person with the Dx was talked about, rather than personally addressed by "dementia advisors". It was as if V suddenly had no agency. #diversealz |
| Diverse Alzheimers @DiverseAlz We are chatting about dementia and the unexpected. This because didn’t tweet subject matter till exceptionally late. Yet with dementia, we do face the unexpected. #diversealz |
| Lynda Henderson, born on unceded land. 🖤💛❤ @YODsupporter RT @journeyofcareM: @DiverseAlz @YODsupporter @nursesKidONE What is also most unexpected with dementia is that you never know when you've crossed the line between being capable to making your own decisions, or not. I think it's like the frog in hot water, so gradual it doesn't notice. That's frightening to me. #DiverseAlz |
| Lynda Henderson, born on unceded land. 🖤💛❤ @YODsupporter RT @nursesKidONE: @bikerwise @YODsupporter @DiverseAlz But sometimes denial of anticipated limitations on one’s abilities can lead to positive and unexpected achievements. #diversealz |
| Lynda Henderson, born on unceded land. 🖤💛❤ @YODsupporter @journeyofcareM @DiverseAlz @nursesKidONE I agree Caroline. I've watched as V gradually gave up her control over things like keys, finances, voting. Always aware of what she could no longer manage. Now battling with walking alone in safety. #diversealz |
| Lynda Henderson, born on unceded land. 🖤💛❤ @YODsupporter RT @helenfindlay: |
| Diverse Alzheimers @DiverseAlz Question 6 How important is knowledge. Imagine reeling this off, unexpectedly,so to speak to make a point somewhere. Remember people with dementia and advocates often “undermined”. But then there is information for oneself #Diversealz |
| Diverse Alzheimers @DiverseAlz RT @YODsupporter: @journeyofcareM @DiverseAlz @nursesKidONE I agree Caroline. I've watched as V gradually gave up her control over things like keys, finances, voting. Always aware of what she could no longer manage. Now battling with walking alone in safety. #diversealz |
| Caroline @journeyofcareM @DiverseAlz @YODsupporter At first as it's shocking/unexpected when the pwd is treated as if they' re not there, a non entity. Hugely insulting. What's also unexpected (less so over time) is that even when ppl are told to not do this, they persist. I've taken much umbrage on my mum's behalf. #DiverseAlz |
| nursesKidONE @nursesKidONE @journeyofcareM @DiverseAlz @YODsupporter I did not observe this to be the case w/ my mother. This is something that may vary w/ type of dementia. It also is possible that Mom did not reach a stage where she did not understand what was being said. But, the healthcare professionals ALL assumed that she had. #diversealz |
| Diverse Alzheimers @DiverseAlz Correction @journeyofcareM not only child, has siblings but does not have children. thanks for share and openness still stands #diversealz |
| Diverse Alzheimers @DiverseAlz RT @nursesKidONE: @journeyofcareM @DiverseAlz @YODsupporter I did not observe this to be the case w/ my mother. This is something that may vary w/ type of dementia. It also is possible that Mom did not reach a stage where she did not understand what was being said. But, the healthcare professionals ALL assumed that she had. #diversealz |
| nursesKidONE @nursesKidONE @DiverseAlz @YODsupporter I was surprised that a very close friend who was an MD & who loved my mom wrote her off like all the other MDs. #diversealz |
| Diverse Alzheimers @DiverseAlz Seeing type in timeline, a very real surprise (unexpected) would be caring for a certain type of dementia, let’s say Alzheimer’s when it is something else. This is where “knowledge” can come in and even observation. #Diversealz |
| Diverse Alzheimers @DiverseAlz See this |
| Diverse Alzheimers @DiverseAlz RT @nursesKidONE: @DiverseAlz @YODsupporter I was surprised that a very close friend who was an MD & who loved my mom wrote her off like all the other MDs. #diversealz |
| Diverse Alzheimers @DiverseAlz RT @nursesKidONE: @YODsupporter @DiverseAlz A2. The course is more predictable if you accept the inevitability of decline and no interventions or supports are provided after diagnosis, especially if a Dx is accepted based on limited information, such as an MMSE. #diversealz |
| Lynda Henderson, born on unceded land. 🖤💛❤ @YODsupporter @DiverseAlz Some of us call it "the dominant narrative": "capacity" gets questioned, "insight" is denied, "carers" are warned of the "burden" & told to "plan now" for placement in residential aged care. Person dismissed! #diversealz |
| Lynda Henderson, born on unceded land. 🖤💛❤ @YODsupporter @DiverseAlz Knowledge is power and comfort. #diversealz |
| Diverse Alzheimers @DiverseAlz And the unexpected could be losing friends/relatives and being exposed to people professional and otherwise who can MT @nursesKidONE write [one] off #Diversealz |
| Diverse Alzheimers @DiverseAlz RT @YODsupporter: @DiverseAlz Knowledge is power and comfort. #diversealz |
#DiverseAlz content from Twitter.