#DiverseAlz Transcript
Healthcare social media transcript of the #DiverseAlz hashtag.
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See #DiverseAlz Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Diverse Alzheimers @DiverseAlz Who knew that the T words@could be so powerful, Trust, Taboo, Talk. More soon as we get ready to #diversealz diagnosis and #a2zdementia. Like..now! |
| Diverse Alzheimers @DiverseAlz Good day wherever you are and welcome to #diversealz on board to talk about dementia and diagnosis Dementia. |
| Diverse Alzheimers @DiverseAlz Of course, before we begin #diversealz conversation around diagnosis, let’s start with our #a2zdementia. We are up to the letter T |
 | Bikerwise @bikerwise #diversealz Too bright. Too loud. Too quiet. Too dark. Too fast. Too slow. Too hot. Too cold. Too much. Too little. Too sweet. Too sour. Too many. Too few. |
| Diverse Alzheimers @DiverseAlz Of course @journeyofcareM T is for topic. Today’s topic is diagnosis. Dementia is all about topics and when we seek info, especially from health care professionals, it can be about keeping to the topic. Also topics we miss/ignore. #diversealz #equalities #inclusion |
| Diverse Alzheimers @DiverseAlz #diversealz started playing around with #a2zdementia words for the week. Seeing @bikerwise going to carry on BUT we use the two words. Join in with us! |
| Diverse Alzheimers @DiverseAlz This for terrible #a2zdementia. Can we have Terrible Topic? Well, dementia would be for some #diversealz |
| Diverse Alzheimers @DiverseAlz RT @nchadborn: |
| Diverse Alzheimers @DiverseAlz Welcome to @nchadborn who gives us timely diagnosis and terrifying #diversealz #a2zdementia |
| Bikerwise @bikerwise @derekfisher2907 #diversealz And Try it again at a later date perhaps? Sometimes it is about stage. So Try and Try again. |
| Diverse Alzheimers @DiverseAlz Anyone ever thought to link Terminal with dementia and there we have Think and thought #diversealz #a2zdementia |
| Diverse Alzheimers @DiverseAlz T is for thanks #a2zdementia #diversealz. Picked it out from @Shedfieldlodge saying thanks for welcome, think! |
| Diverse Alzheimers @DiverseAlz RT @DeeDavies12: |
| Diverse Alzheimers @DiverseAlz Welcome to @DeeDavies12 who gives us Testing Times. Let’s test views on diagnosis and how much it matters. Please Keep T words coming but let’s start chat #diversealz |
| Diverse Alzheimers @DiverseAlz RT @helenfindlay: |
| Diverse Alzheimers @DiverseAlz Talking is a popular #a2zdementia T word in Timeline (another important T word) we will be tweeting as opposed to talking but it works. Question 1 follows #diversealz |
| Diverse Alzheimers @DiverseAlz Question 1: Dementia. Does it [all] start with a diagnosis? #diversealz |
| Bikerwise @bikerwise @helenfindlay @DiverseAlz #diversealz In my experience, not enough talking happens. 😥 |
| Diverse Alzheimers @DiverseAlz RT @bikerwise: @helenfindlay @DiverseAlz #diversealz In my experience, not enough talking happens. 😥 |
| Bikerwise @bikerwise RT @Shedfieldlodge: |
| Diverse Alzheimers @DiverseAlz Much to discuss on this topic and have constructed in such a way that have three key questions and will then draw on your thoughts. Talking was not a question but will be one now! Hope you can stay for long haul talkers! #diversealz |
| Bikerwise @bikerwise @DiverseAlz #diversealz The dementia journey starts long before diagnosis. Damage will have already been done to confidence, self esteem, relationships and perspective. |
| Diverse Alzheimers @DiverseAlz RT @bikerwise: @DiverseAlz #diversealz The dementia journey starts long before diagnosis. Damage will have already been done to confidence, self esteem, relationships and perspective. |
| Diverse Alzheimers @DiverseAlz RT @helenfindlay: |
 | Caroline @journeyofcareM @DiverseAlz #diverseAlz I'm wondering about the opinion of the value of sharing the diagnosis with family members sooner, rather than later. My father died before we found out that our mother had been diagnosed a year before. it would have helped to know sooner, caused complications. |
| Bikerwise @bikerwise @MAREP_UW @DiverseAlz #diversealz Should be the first step to services and support. In our experience it is the first step in a struggle to gather knowledge, support and care. |
| Diverse Alzheimers @DiverseAlz Timeline pointing out how dementia can present/occur before a diagnosis. @nchadborn mentioning importance of a “timely diagnosis” #diversealz. Think so important that this fact should be part of awareness raising, information via health care professionals and campaigns. |
| Diverse Alzheimers @DiverseAlz RT @journeyofcareM: @DiverseAlz #diverseAlz I'm wondering about the opinion of the value of sharing the diagnosis with family members sooner, rather than later. My father died before we found out that our mother had been diagnosed a year before. it would have helped to know sooner, caused complications. |
| Diverse Alzheimers @DiverseAlz Taking the opportunity (#a2zdementia) to thank you on your thoughts for this subject. Suddenly realising it could be an emotive one for some #diversealz but also one of profound thought sharing. |
| Caroline @journeyofcareM @willow_lodge @DiverseAlz #diverseAlz T for terrified when one knows it is in the family , and as dementia starts as @willow_lodge says far before diagnosis, apprehension becomes an aspect of one's life. |
| Diverse Alzheimers @DiverseAlz @ThatVDOVault @teepasnow Thank you. Lots of statistics and research to back this up about early diagnosis including the Alzheimer’s organisations. Hopefully other dementia organisations. @LEAD_Coalition has mentioned interest, if not work, in area. Hope to hear more #diversealz |
| Bikerwise @bikerwise @MAREP_UW @DiverseAlz #diversealz I often compare my husband's dementia diagnosis with my cancer diagnosis. Mine was a proactive response on the part of the services who swung into action. Was it because they thought there was a cure. Do I deserve a cure more than he deserves care? |
| Diverse Alzheimers @DiverseAlz Tweet from @howardgordon54 mentions that he knew something was wrong before diagnosis. This is telling point. Can also be something many of us aware of and don’t think that. Then sometimes followed by guilt on discovery if applied to someone you know. The IF...#Diversealz |
| Diverse Alzheimers @DiverseAlz Terrifying is getting an outing on timeline but more later as can apply to diagnosis. #diversealz #a2zdementia |
 | nursesKidONE @nursesKidONE RT @DiverseAlz: Of course @journeyofcareM T is for topic. Today’s topic is diagnosis. Dementia is all about topics and when we seek info, especially from health care professionals, it can be about keeping to the topic. Also topics we miss/ignore. #diversealz #equalities #inclusion |
| Diverse Alzheimers @DiverseAlz RT @bikerwise: @MAREP_UW @DiverseAlz #diversealz I often compare my husband's dementia diagnosis with my cancer diagnosis. Mine was a proactive response on the part of the services who swung into action. Was it because they thought there was a cure. Do I deserve a cure more than he deserves care? |
| nursesKidONE @nursesKidONE RT @Shedfieldlodge: |
| Diverse Alzheimers @DiverseAlz RT @nchadborn: |
| Diverse Alzheimers @DiverseAlz @nchadborn We’ll get tomthat as few years back there was something about timely diagnosis from GPS and most like a reward. Do you recall? #diversealz |
| Diverse Alzheimers @DiverseAlz RT @helenfindlay: |
| Bikerwise @bikerwise @howardgordon54 @DiverseAlz #diversealz Having supported mother and mother-in-law through dementia I recognised many of the early symptoms. It was why I fought so hard to get my husband diagnosed. I thought there might be early support that would mitigate some of the issues. |
| Diverse Alzheimers @DiverseAlz RT @DeeDavies12: |
| nursesKidONE @nursesKidONE RT @helenfindlay: |
| nursesKidONE @nursesKidONE RT @DiverseAlz: Question 1: Question 1: Dementia. Does it [all] start with a diagnosis? #diversealz |
| Caroline @journeyofcareM @howardgordon54 @DiverseAlz #diverseAlz I am wondering what the reasons were @howardgordon54 that you did not recognise what was happening ? Was it because there wasn't much info/knowledge on dementia, because it can mimic other diseases, the symptoms have other causes ? |
| Diverse Alzheimers @DiverseAlz RT @nchadborn: |
| Diverse Alzheimers @DiverseAlz Let’s hold this thought. Familial dementia #diversealz |
| Diverse Alzheimers @DiverseAlz Question 2 coming up. This is a fast and furious conversation so please tweet if there is a response you are looking for from this end. You are not ignored #diversealz |
| Diverse Alzheimers @DiverseAlz Question 2: is there a way to discuss or break news of the diagnosis? #diversealz. A few of you have alluded to this |
| Diverse Alzheimers @DiverseAlz RT @nchadborn: |
| Bikerwise @bikerwise @DiverseAlz #diversealz Not all genetic tendencies are familial, many more are environmental. But no testing is done for those factors that could help younger members. |
| Diverse Alzheimers @DiverseAlz We need to@factor in a question on the implications of a diagnosis. One always thinks support will be available, all the difficulties erased but clearly not the case in all circumstances. And no...we are not talking about doom and gloom all the time. #diversealz |
| Diverse Alzheimers @DiverseAlz RT @nchadborn: |
| Diverse Alzheimers @DiverseAlz RT @nchadborn Odd thing about early diagnosis is that it requires greater expertise to get it right. #diversealz might sound silly question but some folk have asked/are asking who has that expertise? |
| Bikerwise @bikerwise @DiverseAlz #diversealz In our experience diagnosis is often presented as a death sentence rather than limit to some aspects of life. You may find this more difficult but you can still do this. You might find doing this can mitigate some of the effects. Etc |
| Diverse Alzheimers @DiverseAlz RT @helenfindlay: |
| Diverse Alzheimers @DiverseAlz RT @bikerwise: @DiverseAlz #diversealz Not all genetic tendencies are familial, many more are environmental. But no testing is done for those factors that could help younger members. |
 | Laura Hurst @LauraHurstLPN RT @bikerwise: @MAREP_UW @DiverseAlz #diversealz I often compare my husband's dementia diagnosis with my cancer diagnosis. Mine was a proactive response on the part of the services who swung into action. Was it because they thought there was a cure. Do I deserve a cure more than he deserves care? |
| nursesKidONE @nursesKidONE @DiverseAlz @nchadborn Hello! Sorry to be late. I think you have to note that diagnosis now includes a stage before clinical symptoms of dementia are manifest. This is so people can be encouraged to participate in clinical trials to test drugs that will prevent or modify progression. #diversealz |
| Diverse Alzheimers @DiverseAlz RT @nursesKidONE: @DiverseAlz @nchadborn Hello! Sorry to be late. I think you have to note that diagnosis now includes a stage before clinical symptoms of dementia are manifest. This is so people can be encouraged to participate in clinical trials to test drugs that will prevent or modify progression. #diversealz |
| Bikerwise @bikerwise @howardgordon54 @DiverseAlz #diversealz That is what happened with my cancer diagnosis. The doctor delivered the cold facts, the nurse talked about feelings, strategies and possible family reactions. |
| Diverse Alzheimers @DiverseAlz @willow_lodge @Shedfieldlodge what are your views on diagnosis and especially from your care perspectives? #diversealz |
 | JOANNA 🐕🐈🐭🐁🐰🐴👮 @charitybegin4 RT @bikerwise: #diversealz Transport. Formerly independent people need transporting everywhere and not all methods remain easy. |
| Diverse Alzheimers @DiverseAlz @ThatVDOVault Words cannot express thoughts/feelings on reading this. How can one respond/forget even. Working@out what to say from here #diversealz #nowords |
| Diverse Alzheimers @DiverseAlz RT @bikerwise: @howardgordon54 @DiverseAlz #diversealz That is what happened with my cancer diagnosis. The doctor delivered the cold facts, the nurse talked about feelings, strategies and possible family reactions. |
| JOANNA 🐕🐈🐭🐁🐰🐴👮 @charitybegin4 RT @bikerwise: #diversealz Teeth. Cleaning teeth thoroughly is an amazingly complex operation. Without it chances of gum disease and tooth we at increase. |
| Diverse Alzheimers @DiverseAlz RT @helenfindlay: |
| JOANNA 🐕🐈🐭🐁🐰🐴👮 @charitybegin4 RT @bikerwise: @DiverseAlz #diversealz The dementia journey starts long before diagnosis. Damage will have already been done to confidence, self esteem, relationships and perspective. |
| Diverse Alzheimers @DiverseAlz Corse can’t generalise but many people testify to fact that “cold words” taking that from @bikerwise ? accompany a diagnosis #diversealz. @YODsupporter mentioned how important it is to deliver with compassion (#diversealz) word. Makes difference. |
| nursesKidONE @nursesKidONE @nchadborn Agreed. For example, authority to remove someone from their home, to deny insurance coverage for a pre-existing condition, to revoke driving privileges,or increase auto insurance rates. What is impact on legal documents signed, right to marry, guardianship, etc? #diversealz |
| nursesKidONE @nursesKidONE RT @DiverseAlz: RT @nchadborn Odd thing about early diagnosis is that it requires greater expertise to get it right. #diversealz might sound silly question but some folk have asked/are asking who has that expertise? |
| Diverse Alzheimers @DiverseAlz @FPfende @nchadborn Let’s come back to that. Thanks for joining. Please send reminder if you don’t see it. #diversealz |
| Diverse Alzheimers @DiverseAlz RT @Shedfieldlodge: |
| Diverse Alzheimers @DiverseAlz RT @nchadborn: @DiverseAlz Diagnostic expertise: |
| Diverse Alzheimers @DiverseAlz RT @nchadborn: |
| Bikerwise @bikerwise RT @Shedfieldlodge: |
| Diverse Alzheimers @DiverseAlz Last question via #diversealz coming ip@amd then we highlight some of your points as questions of course? Prepare for question 3 #Diversealz |
| Diverse Alzheimers @DiverseAlz Question 3: Is it enough to say “it’s dementia” given that people might take it as Alzheimer’s or even “senility”? #diversealz |
| nursesKidONE @nursesKidONE @nchadborn @DiverseAlz Based on my experience w/ a geriatrician, a psychiatrist, it's not just abt medical specialty. It has to be someone w/ extensive experience w/ various types of dementia or who at least understands that goal isn't to fit patient into their limited range of knowledge.#diversealz |
| Bikerwise @bikerwise RT @nchadborn: |
| Caroline @journeyofcareM @DiverseAlz My mother had to do her MOCA test in front of a geriatrician,his 2 observers, a community care manager, a nurse practitioner and 2 family members. Her doctor set it up. Put on the spot like that, her score was abysmal. She refused all testing afterwards. Who wouldn't. #diversealz |
| Bikerwise @bikerwise #diversealz Husband pretty much the same. |
| nursesKidONE @nursesKidONE RT @nchadborn: |
| Bikerwise @bikerwise @derekfisher2907 @howardgordon54 @nchadborn @DiverseAlz #diversealz Had to fight for husband to be assessed and have a care plan. |
| Diverse Alzheimers @DiverseAlz RT @howardgordon54 For most people especially under 65 there is no one #diversealz wearing diversity hat will say this is what people from many Black, Asian and Minority Ethnic groups can say. This group is wide. Sadly tend to forget this but then awareness. |
| Diverse Alzheimers @DiverseAlz RT @Shedfieldlodge: |
| nursesKidONE @nursesKidONE Now I would look for a doctor who is curious and willing to challenge conventional thinking about dementia. #diversealz |
| Diverse Alzheimers @DiverseAlz Diagnosis of dementia needs to be specific tweets @Shedfieldlodge. Who would disagree and yet, if research true, some dementias hard to define accurately #diversealz |
| Diverse Alzheimers @DiverseAlz RT @nchadborn: |
| Diverse Alzheimers @DiverseAlz All about the doctor. This says something...liking it. WjAt do you think #diversealz ers |
| Diverse Alzheimers @DiverseAlz RT @nursesKidONE: Now I would look for a doctor who is curious and willing to challenge conventional thinking about dementia. #diversealz |
 | S Olson, B.S, J.D. @ThatVDOVault @DiverseAlz @Shedfieldlodge For the #family #carer #caregiver #carepartner's sake this is very true. Harder to speak to what the person about to be living with a #dementia #diagnosis is going to think & feel #DiverseAlz |
| Diverse Alzheimers @DiverseAlz Please keep responding tonqiesrion 3 jut would like to get this point in from @FPfende for question 4 #diversealz |
| Caroline @journeyofcareM @DiverseAlz #diverseAlz Diagnosis needs to be specific as most people still equate all dementia with Alzheimers . And what was called senility before now has many different causes and diseases, and some that can be treated. |
| Diverse Alzheimers @DiverseAlz Question 4 Do learning disability nurses have a role to play in dementia? We hear much about admiral nurses in U.K. even though need more. #diversealz |
| Bikerwise @bikerwise RT @helenfindlay: |
| S Olson, B.S, J.D. @ThatVDOVault @DiverseAlz Honestly a 10 minute conversation with @teepasnow would be better than like 98% of licensed MDs out there (in the USA anyway). Because she has so much life experience working with actual people living with #dementia & is genuinely interested in & curious about them #DiverseAlz |
| Diverse Alzheimers @DiverseAlz @FPfende you mentioned stigma when mentioning learning disability nurses. Could be term but also fact people unaware of full capabilities of LD nursss. Plus, what do they know about dementia? See @nchadborn to include LDs in list. #diversealz |
| Diverse Alzheimers @DiverseAlz RT @journeyofcareM: @DiverseAlz My mother had to do her MOCA test in front of a geriatrician,his 2 observers, a community care manager, a nurse practitioner and 2 family members. Her doctor set it up. Put on the spot like that, her score was abysmal. She refused all testing afterwards. Who wouldn't. #diversealz |
| Diverse Alzheimers @DiverseAlz @journeyofcareM Thank you for this share. Again #lostforwords #diversealz |
| Diverse Alzheimers @DiverseAlz RT @helenfindlay: |
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