#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 communication and dementia as in how to keep the conversation going when dementia is mentioned for the first time. That room goes silent/mouth drops to floor/everything changes moment. |
| Diverse Alzheimers @DiverseAlz Long winded introduction to our #diversealz chat tonight but it will get clearer as we go along! |
| Diverse Alzheimers @DiverseAlz We're starting at the beginning tonight so let's see who's here to talk about breaking news about dementia and the conversation(s). Who's around? #diversealz |
 | nursesKidONE @nursesKidONE RT @DiverseAlz: Good day wherever you are and welcome to #Diversealz here to talk about communication and dementia as in how to keep the conversation going when dementia is mentioned for the first time. That room goes silent/mouth drops to floor/everything changes moment. |
| Diverse Alzheimers @DiverseAlz Let's start with an icebreaker and feel free to introduce yourselves or say why you are here for this particular conversation. What do you think about on hearing words communication and dementia? #diversealz |
 | Sword⚔️&Torch🔦of God🤺🛡️📖🩺🏥 @thompsonb2569 RT @DiverseAlz: We're starting at the beginning tonight so let's see who's here to talk about breaking news about dementia and the conversation(s). Who's around? #diversealz |
 | Barbara Ivey @alzbarbie @ThatVDOVault #diversealz @ThatVDOVault Glad you made it back safely! |
| Diverse Alzheimers @DiverseAlz Just getting people's thoughts on what they think of on hearing words communication and dementia. #diversealz |
| Diverse Alzheimers @DiverseAlz As we are multitaskers on #diversealz, let's start with Question 1 to get the conversation going. Will pick up on comments as we go along |
| Barbara Ivey @alzbarbie @DiverseAlz #DiverseAlz For me communication & dementia bring to mind the hightended importance of good communication among those who care about the PLWD. |
| Diverse Alzheimers @DiverseAlz #Diversealz timeline sends advance congratulations to an "excited" @ThatVDOVault celebrating 50th birthday on Sunday. |
| nursesKidONE @nursesKidONE RT @helenfindlay: |
| Diverse Alzheimers @DiverseAlz Just realising that the welcomes, hellos etc going out via #diversealz are so relevant to our topic today. Will be looking at the interactions too and the conversations within conversations so here is question 1 |
 | 2centscorner @2centscorner RT @DiverseAlz: Good day wherever you are and welcome to #Diversealz here to talk about communication and dementia as in how to keep the conversation going when dementia is mentioned for the first time. That room goes silent/mouth drops to floor/everything changes moment. |
| Diverse Alzheimers @DiverseAlz Question 1: conversation is going brilliantly and then the word dementia is mentioned as in xx has dementia, you know xx has dementia referring to individual or carer/supporter. Sudden silence. Change. Maybe even body language that is uncomfortable. What can one say? #diversealz |
| Diverse Alzheimers @DiverseAlz RT @ThatVDOVault If you can master communicating with people who live with #dementia, you have really accomplished something impressive. #diversealz Also S Olson predicting may not be an issue in 5-10 years time. Positivism |
 | billshankly💙 @williamshankly RT @TommyTommytee18: |
| Diverse Alzheimers @DiverseAlz Short version question 1 here: What can one say when mention of dementia (and for first time) shocks people and conversation becomes uncomfotable? #diversealz |
| Barbara Ivey @alzbarbie @ThatVDOVault #DiverseAlz Thankful for 'unstuck'. Glad you made it back in time /me, shaking fist at snow/ |
| Diverse Alzheimers @DiverseAlz Good @ThatVDOVault mentioning perhaps some people unsure about what dementia is. Back, perhaps to notion that it is forgetfulness, natural, Alzheimer's. We're back to referencing in this conversation - the dementias as in types #diversealz |
| Diverse Alzheimers @DiverseAlz RT @TommyTommytee18: |
| Diverse Alzheimers @DiverseAlz RT @TommyTommytee18: |
| Diverse Alzheimers @DiverseAlz This telling RT via @TommyTommytee18 on thoughts on communication and dementia: I bet there’s 95% of the population think that the two can’t go together #diversealz |
| Barbara Ivey @alzbarbie @DiverseAlz #DiverseAlz A1 Focus on 'asking' (different from 'saying'). "How does it feel to be you right now?" is a good conversation starter. |
| Diverse Alzheimers @DiverseAlz Good evening @nursesteve82 who tweets Talk about it even more - educate and ask gentle questions. #dementia #diversealz |
| Barbara Ivey @alzbarbie RT @TommyTommytee18: |
| Diverse Alzheimers @DiverseAlz This via @TommyTommytee18 you can still communicate with them just have more patience and don’t talk to the person as if they are an infant #diversealz |
| Diverse Alzheimers @DiverseAlz Just seen a like by @tiapowell who is the author of forthcoming #dembk Dementia Reimagined and as work on keywords...#diversealz ers can imagine what is coming next with question 2. |
| Barbara Ivey @alzbarbie @DiverseAlz @TommyTommytee18 #DiverseAlz Yes, we always need to remember to show respect to the PLWD...and their family members. It's their news too. |
| 2centscorner @2centscorner @DiverseAlz 2. Conversations should only b relevant to who needs to know n why. Ppl are complex so differing opinions/perspectives will follow. Share and educate what’s comfortable for you. Ask questions of what they know. But be mindful, it is not ur job to do the heavy lifting. #diversealz |
| Diverse Alzheimers @DiverseAlz Question 2: Much is written on communicating but is it time that we "reimagined" how that can take place? @TommyTommytee18 @ThatVDOVault @nursesteve82 tweets have pointed to taking time to talk/explain to people and with this we think of those who feel uncomfortable #diversealz |
| nursesKidONE @nursesKidONE A1.I would have preferred to have been able to explain "primary progressive aphasia" to Mom's friends over the overwhelming challenge of getting people to put aside their presumptions about what a person with "dementia" is able to do or understand. #diversealz |
| Diverse Alzheimers @DiverseAlz RT @2centscorner: @DiverseAlz 2. Conversations should only b relevant to who needs to know n why. Ppl are complex so differing opinions/perspectives will follow. Share and educate what’s comfortable for you. Ask questions of what they know. But be mindful, it is not ur job to do the heavy lifting. #diversealz |
| Diverse Alzheimers @DiverseAlz RT @alzbarbie: @DiverseAlz #DiverseAlz A1 Focus on 'asking' (different from 'saying'). "How does it feel to be you right now?" is a good conversation starter. |
| Diverse Alzheimers @DiverseAlz RT @nursesKidONE: A1.I would have preferred to have been able to explain "primary progressive aphasia" to Mom's friends over the overwhelming challenge of getting people to put aside their presumptions about what a person with "dementia" is able to do or understand. #diversealz |
| Diverse Alzheimers @DiverseAlz RT @helenfindlay: |
| Diverse Alzheimers @DiverseAlz RT @TommyTommytee18: |
| nursesKidONE @nursesKidONE RT @DiverseAlz: This telling RT via @TommyTommytee18 on thoughts on communication and dementia: This telling RT via @TommyTommytee18 on thoughts on communication and dementia: I bet there’s 95% of the population think that the two can’t go together #diversealz |
| Diverse Alzheimers @DiverseAlz Share and educate tweets @2centscorner. #diversealz |
| Barbara Ivey @alzbarbie @DiverseAlz @TommyTommytee18 @ThatVDOVault @nursesteve82 #DiverseAlz Curious to learn more... |
| nursesKidONE @nursesKidONE RT @TommyTommytee18: |
| nursesKidONE @nursesKidONE RT @helenfindlay: |
| nursesKidONE @nursesKidONE RT @alzbarbie: @DiverseAlz @TommyTommytee18 #DiverseAlz Yes, we always need to remember to show respect to the PLWD...and their family members. It's their news too. |
| nursesKidONE @nursesKidONE RT @2centscorner: @DiverseAlz 2. Conversations should only b relevant to who needs to know n why. Ppl are complex so differing opinions/perspectives will follow. Share and educate what’s comfortable for you. Ask questions of what they know. But be mindful, it is not ur job to do the heavy lifting. #diversealz |
| nursesKidONE @nursesKidONE RT @Shedfieldlodge: |
| Diverse Alzheimers @DiverseAlz Okay. Let's explore this notion of feeling uncomfortable in a social situation when the word dementia is mentioned or diagnosis (you know xxx has dementia). Question 3 coming up #diversealz |
| 2centscorner @2centscorner @DiverseAlz A1. Important to know the participants of the discussion. Reactions will differ with this in mind. Sometimes a bit of quietness is needed to allow the information to register before going into the elaborate. #diversealz |
| Barbara Ivey @alzbarbie RT @TommyTommytee18: |
| 2centscorner @2centscorner RT @DiverseAlz: Question 1: Question 1: conversation is going brilliantly and then the word dementia is mentioned as in xx has dementia, you know xx has dementia referring to individual or carer/supporter. Sudden silence. Change. Maybe even body language that is uncomfortable. What can one say? #diversealz |
| 2centscorner @2centscorner RT @helenfindlay: |
| Diverse Alzheimers @DiverseAlz Question 3: Jo has a party. All is going well, guests interacting. Word gets out that Jo has dementia. Reactions differ. Some folk say they thought Jo seemed lost, to sudden backing off. Atmosphere changes dramatically despite upbeat Jo and family. Thoughts? #diversealz |
| Barbara Ivey @alzbarbie @TommyTommytee18 #diversealz My new word of the day! Anosognosia. I'd guess that 75% or more of family members of PLWD have this on any given day. |
| Diverse Alzheimers @DiverseAlz Our question 3 scenario picks up on some tweets via timeline from @nursesKidONE mentioning would have been good to be able to explain nature of mum's illness to points decide when to tell, why and what, to asking what do you know and still same person #diversealz |
| 2centscorner @2centscorner @DiverseAlz I think asking a person if they want to discuss further is very important. They may need time to deal with the emotional shock, want to do a bit of research, and then reengage conversation at another time, or not at all. #diversealz |
| Diverse Alzheimers @DiverseAlz Words matter. MT @helenfindlay Person doing the talking or asking questions needs to bear in mind that the meaning of the words they use may have different meanings to person with dementia or they may not comprehend them at all. #diversealz |
| 2centscorner @2centscorner RT @TommyTommytee18: |
| Diverse Alzheimers @DiverseAlz Reminder via @Shedfieldlodge that communication is not only the spoken word. #diversealz |
| Barbara Ivey @alzbarbie @DiverseAlz #DiverseAlz Revealing any diagnosis to friends & family is a very personal decision. I look forward to the day when we all feel safe to reveal dementia diagnoses as it truly is an experience best had with a team of people nearby. |
 | JOANNA 🐕🐈🐭🐁🐰🐴👮 @charitybegin4 RT @TommyTommytee18: |
 | Naomi Martin 🇪🇺 🇺🇦 🥤🇬🇪 @GNaomiMartin RT @TommyTommytee18: |
| JOANNA 🐕🐈🐭🐁🐰🐴👮 @charitybegin4 RT @TommyTommytee18: |
| Barbara Ivey @alzbarbie RT @2centscorner: @DiverseAlz I think asking a person if they want to discuss further is very important. They may need time to deal with the emotional shock, want to do a bit of research, and then reengage conversation at another time, or not at all. #diversealz |
| JOANNA 🐕🐈🐭🐁🐰🐴👮 @charitybegin4 RT @TommyTommytee18: |
| Diverse Alzheimers @DiverseAlz Speaking of communication...Isn't it interesting when we see body language that doesn't match words being spoken at times or tone that reveals much and of course we have visual aids/prompts/sign language. #diversealz |
| JOANNA 🐕🐈🐭🐁🐰🐴👮 @charitybegin4 RT @TommyTommytee18: |
| Diverse Alzheimers @DiverseAlz RT @2centscorner: @DiverseAlz I think asking a person if they want to discuss further is very important. They may need time to deal with the emotional shock, want to do a bit of research, and then reengage conversation at another time, or not at all. #diversealz |
| JOANNA 🐕🐈🐭🐁🐰🐴👮 @charitybegin4 RT @TommyTommytee18: |
| JOANNA 🐕🐈🐭🐁🐰🐴👮 @charitybegin4 RT @TommyTommytee18: |
| billshankly💙 @williamshankly RT @TommyTommytee18: |
| JOANNA 🐕🐈🐭🐁🐰🐴👮 @charitybegin4 RT @2centscorner: @DiverseAlz 2. Conversations should only b relevant to who needs to know n why. Ppl are complex so differing opinions/perspectives will follow. Share and educate what’s comfortable for you. Ask questions of what they know. But be mindful, it is not ur job to do the heavy lifting. #diversealz |
| Barbara Ivey @alzbarbie RT @TommyTommytee18: |
| Diverse Alzheimers @DiverseAlz Reminder that it is easy to jump to conclusions when talking about dementia for the first time or saying that a person has dementia. @2centscorner mentions shock. Have to accomodate that. #diversealz |
| JOANNA 🐕🐈🐭🐁🐰🐴👮 @charitybegin4 RT @TommyTommytee18: |
| nursesKidONE @nursesKidONE @ThatVDOVault @alzbarbie @TommyTommytee18 I’d also add that in my case, I had a much better idea of what was going on with my mom than any of the professionals or her friends did. #diversealz |
| Diverse Alzheimers @DiverseAlz RT @ThatVDOVault It is very reasonable & gracious to extend an offer to someone newly diagnosed with #dementia (or their future #carer #caregiver #carepartner) to discuss it at a later time when they are more prepared to participate #DiverseAlz |
| JOANNA 🐕🐈🐭🐁🐰🐴👮 @charitybegin4 RT @TommyTommytee18: |
| nursesKidONE @nursesKidONE RT @TommyTommytee18: |
| nursesKidONE @nursesKidONE RT @TommyTommytee18: |
| Diverse Alzheimers @DiverseAlz RT @TommyTommytee18: |
| Barbara Ivey @alzbarbie RT @nursesKidONE: @ThatVDOVault @alzbarbie @TommyTommytee18 I’d also add that in my case, I had a much better idea of what was going on with my mom than any of the professionals or her friends did. #diversealz |
| Diverse Alzheimers @DiverseAlz RT @helenfindlay: |
| nursesKidONE @nursesKidONE RT @2centscorner: @DiverseAlz I think asking a person if they want to discuss further is very important. They may need time to deal with the emotional shock, want to do a bit of research, and then reengage conversation at another time, or not at all. #diversealz |
| nursesKidONE @nursesKidONE RT @DiverseAlz: Reminder via @Shedfieldlodge that communication is not only the spoken word. #diversealz |
| 2centscorner @2centscorner RT @helenfindlay: |
| Diverse Alzheimers @DiverseAlz Question 5: In context of this conversation, do people need to know that a person is living with dementia especially if the reaction may be upsetting or ill informed? #diversealz |
| Diverse Alzheimers @DiverseAlz RT @helenfindlay: |
| Barbara Ivey @alzbarbie @ThatVDOVault @nursesKidONE @TommyTommytee18 #DiverseAlz I second this. This is where professionals need to show more respect to family members and friends who contribute support of any kind. |
| Barbara Ivey @alzbarbie RT @helenfindlay: |
| Diverse Alzheimers @DiverseAlz Going to tweet question 6 as don't want to forget it and it's all about observation #diversealz |
| nursesKidONE @nursesKidONE RT @helenfindlay: |
| 2centscorner @2centscorner RT @DiverseAlz: Reminder that it is easy to jump to conclusions when talking about dementia for the first time or saying that a person has dementia. @2centscorner mentions shock. Have to accomodate that. #diversealz |
| nursesKidONE @nursesKidONE RT @helenfindlay: |
| Diverse Alzheimers @DiverseAlz Question 6: how can one react to body language that shows disrepect/contempt/withdrawal. We are looking for positive responses here. Infact, has anyone ever witnessed that kind of reaction. The face, for example, can show much #diversealz |
| Diverse Alzheimers @DiverseAlz Good point from @TommyTommytee18 RT This is infuriating when you are talking to someone and they are texting at the same time. Or the doctor who looks at the computer screen while asking you a question #diversealz |
| 2centscorner @2centscorner RT @helenfindlay: |
| Diverse Alzheimers @DiverseAlz Learning to communicate. This from @ThatVDOVault I need to meet others where they are currently at to effectively communicate with them #DiverseAlz |
| Barbara Ivey @alzbarbie @DiverseAlz #DiverseAlz I've yet to notice this w/ dementia. When I was a kid I remember responses like this to people with limbs missing, for example. I'm so encouraged that people younger than me have been taught kinder approaches. |
| Diverse Alzheimers @DiverseAlz Plus dementia and people with dementia may still fill people with curiousity. Say this cos was struck by comment along the lines that people would gather to visit a favourite uncle they had not seen for years because they wanted to see what dementia looked like #diversealz |
| Diverse Alzheimers @DiverseAlz RT @ThatVDOVault It does not hurt to be judicious in whom you tell, what you tell them, & when you tell them. #DiverseAlz |
| Barbara Ivey @alzbarbie @DiverseAlz #DiverseAlz Funny, I've heard the opposite. Family members staying away out of fear. |
| nursesKidONE @nursesKidONE @DiverseAlz @ThatVDOVault This includes enjoyment of shared humor w/ the PLWD, when appropriate, especially if humor has been part of your relationship prior to diagnosis. #diversealz |
| Diverse Alzheimers @DiverseAlz RT @alzbarbie: @DiverseAlz #DiverseAlz I've yet to notice this w/ dementia. When I was a kid I remember responses like this to people with limbs missing, for example. I'm so encouraged that people younger than me have been taught kinder approaches. |
| Diverse Alzheimers @DiverseAlz RT @helenfindlay: |
| Diverse Alzheimers @DiverseAlz RT @nursesKidONE: @DiverseAlz @ThatVDOVault This includes enjoyment of shared humor w/ the PLWD, when appropriate, especially if humor has been part of your relationship prior to diagnosis. #diversealz |
| Barbara Ivey @alzbarbie RT @helenfindlay: |
| Barbara Ivey @alzbarbie RT @nursesKidONE: @DiverseAlz @ThatVDOVault This includes enjoyment of shared humor w/ the PLWD, when appropriate, especially if humor has been part of your relationship prior to diagnosis. #diversealz |
| Diverse Alzheimers @DiverseAlz Question 7 is the opposite to question 6, so let's go there #diversealz |
| nursesKidONE @nursesKidONE RT @helenfindlay: |
| Barbara Ivey @alzbarbie @nursesKidONE @DiverseAlz @ThatVDOVault #DiverseAlz Feels like my late Mom & I laughed our way through the last 4 years or so of her life. By then I'd learned to meet her where she was. Mom loved a good joke, the joy of a good rhyme & a funny photo of any kind. Such lovely memories. |
| Diverse Alzheimers @DiverseAlz @alzbarbie Guess all about context. Yes, much said about people staying away out of fear. We need to hear more about the people who appear perhaps for gatherings. Who would think curiousity could be part of that and yet in thinking...#diversealz |
| Barbara Ivey @alzbarbie @TommyTommytee18 #DiverseAlz There's one in every crowd. 🙄 |
| Diverse Alzheimers @DiverseAlz RT @TommyTommytee18: |
| Diverse Alzheimers @DiverseAlz RT @TommyTommytee18: |
| Diverse Alzheimers @DiverseAlz RT @alzbarbie: @ThatVDOVault @nursesKidONE @TommyTommytee18 #DiverseAlz I second this. This is where professionals need to show more respect to family members and friends who contribute support of any kind. |
| Diverse Alzheimers @DiverseAlz Seems this is a conversation that is as much about respect as communication so let's go to question 8 #diversealz |
 | 4 you I will @Tiffanys_Blog @DiverseAlz Hi all! I'm Tiffany. A caregiver and Rn. I think of keeping lines of communication open btwn carers and docs about what works and doesn't and that's in regards to meds and interactions. Get sleep meds but not resting. They may not like to be touched ... #Diversealz |
| nursesKidONE @nursesKidONE As part of their community needs assessments obligations, in return for their tax exempt status, nonprofit hospitals in the US should assess options to create or expand programs to meet social health needs of PLWD in their local communities. #diversealz |
| Diverse Alzheimers @DiverseAlz Question 8: when it comes to communication: how can one respect a person with dementia? #diversealz We've seen some mentions indirectly but let's list some ways. |
| 2centscorner @2centscorner @DiverseAlz A3. Most ppl know, #dementia is a terminal illness, most also know there’s no current cure. What’s missing from the “know” is LIVING with dementia. Most societies market Dx=cure or no cure; which leaves ppl uninformed. #diversealz |
| Diverse Alzheimers @DiverseAlz @Tiffanys_Blog Hello. Welcome to #diversealz and thanks for responding |
| nursesKidONE @nursesKidONE RT @alzbarbie: @nursesKidONE @DiverseAlz @ThatVDOVault #DiverseAlz Feels like my late Mom & I laughed our way through the last 4 years or so of her life. By then I'd learned to meet her where she was. Mom loved a good joke, the joy of a good rhyme & a funny photo of any kind. Such lovely memories. |
| JOANNA 🐕🐈🐭🐁🐰🐴👮 @charitybegin4 RT @TommyTommytee18: |
| 2centscorner @2centscorner RT @DiverseAlz: Words matter. MT @helenfindlay Person doing the talking or asking questions needs to bear in mind that the meaning of the words they use may have different meanings to person with dementia or they may not comprehend them at all. #diversealz |
| Barbara Ivey @alzbarbie @jvoyageur @ThatVDOVault @nursesKidONE @TommyTommytee18 #DiverseAlz Journaling is a great goal. My Dad's hands were full as the only hands-on-caregiver in town. That plus his dyslexia meant that the journal & pen I gave him went unused. |
| 2centscorner @2centscorner RT @DiverseAlz: Reminder via @Shedfieldlodge that communication is not only the spoken word. #diversealz |
 | S Olson, B.S, J.D. @ThatVDOVault RT @2centscorner: @DiverseAlz A3. Most ppl know, #dementia is a terminal illness, most also know there’s no current cure. What’s missing from the “know” is LIVING with dementia. Most societies market Dx=cure or no cure; which leaves ppl uninformed. #diversealz |
| 2centscorner @2centscorner RT @TommyTommytee18: |
| Diverse Alzheimers @DiverseAlz Keeping the bonds of communication mentioned by @Tiffanys_Blog #diversealz |
| JOANNA 🐕🐈🐭🐁🐰🐴👮 @charitybegin4 RT @TommyTommytee18: |
 | @ABillShanklyBoy @ABillShanklyBoy RT @TommyTommytee18: |
| 2centscorner @2centscorner @TommyTommytee18 @DiverseAlz Yes, thank you for stating this. #diversealz |
| 2centscorner @2centscorner RT @helenfindlay: |
| JOANNA 🐕🐈🐭🐁🐰🐴👮 @charitybegin4 RT @TommyTommytee18: |
| Diverse Alzheimers @DiverseAlz Be prepared to use different forms of communication. Try to learn preferred metod of communication though this may change. Be you. But perhaps, most importantly, treat the person with dementia as you would like to be treated yourself #diversealz |
| JOANNA 🐕🐈🐭🐁🐰🐴👮 @charitybegin4 RT @TommyTommytee18: |
| Diverse Alzheimers @DiverseAlz Keeping the line of communication mentioned by @Tiffanys_Blog. We mentioned bond earlier #diversealz |
| 4 you I will @Tiffanys_Blog @nursesteve82 @DiverseAlz All of the above! When they are no longer verbal, don't ignore them. Pay attention to what body language is saying and facial expressions. You will miss a lot otherwise. Pain, sadness, etc. #Diversealz |
#DiverseAlz content from Twitter.