#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 an unspecified dementia diagnosis. |
| Diverse Alzheimers @DiverseAlz We have chatted about an unspecified dementia diagnosis before but let’s try and unpack what this could mean today. #Diversealz |
| Diverse Alzheimers @DiverseAlz Busy Thursday but we ask how helpful is an unspecified diagnosis of dementia #diversealz |
| Diverse Alzheimers @DiverseAlz Question 1 How helpful is an unspecified diagnosis of dementia #diversealz |
 | Bikerwise @bikerwise @DiverseAlz #diversealz Speaking personally we found it very unhelpful. It could not guide our plans and expectations. |
| Diverse Alzheimers @DiverseAlz RT @bikerwise: @DiverseAlz #diversealz Speaking personally we found it very unhelpful. It could not guide our plans and expectations. |
| Diverse Alzheimers @DiverseAlz @bikerwise You mention two points we need to follow up on #diversealz |
| Diverse Alzheimers @DiverseAlz @TommyTommytee18 Treatment so important... guidance #diversealz |
 | billshankly💙 @williamshankly RT @TommyTommytee18: |
| Diverse Alzheimers @DiverseAlz So already, we are saying that diagnosis can help with treatment, can help in making plans and useful for guidance #diversealz |
| Diverse Alzheimers @DiverseAlz RT @helenfindlay: |
| Diverse Alzheimers @DiverseAlz RT @Dembkclub: |
 | Caroline @journeyofcareM @DiverseAlz I doubt many ppl diagnosed are told any specifics as to the kind of dementia unless it's obvious. Like early onset would be due to age related, or Pick's & some others that brain scans can show. Over 80 yrs of age, most GP's will just say it's either Alz/vascular. #DiverseAlz |
| Diverse Alzheimers @DiverseAlz Parking question 1 for a mo to move to question 2 around planning #diversealz |
| Diverse Alzheimers @DiverseAlz @journeyofcareM Yes. Still much to be done and there are references to certain dementias re: ethnicity #diversealz |
| Diverse Alzheimers @DiverseAlz RT @journeyofcareM: @DiverseAlz I doubt many ppl diagnosed are told any specifics as to the kind of dementia unless it's obvious. Like early onset would be due to age related, or Pick's & some others that brain scans can show. Over 80 yrs of age, most GP's will just say it's either Alz/vascular. #DiverseAlz |
| Diverse Alzheimers @DiverseAlz RT @ClarissaGiebel: |
| Diverse Alzheimers @DiverseAlz We have highlighted a difficulty. Let’s look at planning. See @bikerwise alluded to disruption. #diversealz |
| Diverse Alzheimers @DiverseAlz Question 2: How could an unspecified diagnosis affect planning? #diversealz |
| Bikerwise @bikerwise #diversealz Having a distinct diagnosis allows for planning eg husband's issues are predominantly visusl/spatial so we improved lighting, decluttered, cleared floors, changed colours. |
| Diverse Alzheimers @DiverseAlz @nchadborn @NetworkMARCH Well, with respect, no surprise. Guess you have to have an awareness and the knowledge of what diversity is and means and then in relation to dementias or be interested! Could be not in my backyard #diversealz |
| Diverse Alzheimers @DiverseAlz RT @helenfindlay: |
| Diverse Alzheimers @DiverseAlz Ah yes...correct medication mentioned by @helenfindlay #diversealz |
| Diverse Alzheimers @DiverseAlz RT @nchadborn: @DiverseAlz @NetworkMARCH My question from a few weeks ago #diversealz was: |
| Bikerwise @bikerwise #diversealz What activities are appropriate for this person? What should I, as a carer, continue to pursue, what should we quietly let go? |
| Diverse Alzheimers @DiverseAlz @nchadborn @NetworkMARCH Everybody is different yes but aren’t there certain symptoms one could/should look out for? Perhaps @dr_shibley is around for this in “fact checking” mode #Diversealz |
| Diverse Alzheimers @DiverseAlz RT @bikerwise: #diversealz What activities are appropriate for this person? What should I, as a carer, continue to pursue, what should we quietly let go? |
| Diverse Alzheimers @DiverseAlz RT @bikerwise: #diversealz Having a distinct diagnosis allows for planning eg husband's issues are predominantly visusl/spatial so we improved lighting, decluttered, cleared floors, changed colours. |
| Diverse Alzheimers @DiverseAlz Do see some useful points from @bikerwise #diversealz |
| Diverse Alzheimers @DiverseAlz Have you also thought about how an unspecified diagnosis could led to unwarranted thoughts, assumptions, stereotypes based on lack of understanding #diversealz cc @TommyTommytee18 |
| Diverse Alzheimers @DiverseAlz @nchadborn @NetworkMARCH We’ll work this into knowledge #diversealz |
| Diverse Alzheimers @DiverseAlz RT @helenfindlay: |
 | nursesKidONE @nursesKidONE RT @DiverseAlz: Good day wherever you are and welcome to #diversealz here to chat about an unspecified dementia diagnosis. |
| Diverse Alzheimers @DiverseAlz “Be flexible and expect surprises “ tweets @helenfindlay sound and especially so for people on dementia journey who learn this and applaud. Let’s step back for Question 4 #Diversealz |
| Diverse Alzheimers @DiverseAlz @nchadborn Very good question. Can You jog me again so that we make this question 6 and put it out there. Thanks #Diversealz |
| Diverse Alzheimers @DiverseAlz RT @nchadborn: |
| Diverse Alzheimers @DiverseAlz Question 4: Told “it’s dementia” What would you say to someone hearing those words who things world has come to end. Also that dementia is...well dementia. One wonders how far we have moved on #diversealz |
| Bikerwise @bikerwise #diversealz Would we be satisfied with getting a diagnosis of "your child has an infectious disease" from a doctor? |
| Caroline @journeyofcareM @DiverseAlz Even if unspecified, planning will be needed & the sooner the better but not necessarily implemented immediately. Many pwd cope well for a very long time with adjunct care/oversight but the arc of some can be are swift. Dementia or not we all have care plans. #DiverseAlz |
| Diverse Alzheimers @DiverseAlz RT @journeyofcareM: @DiverseAlz Even if unspecified, planning will be needed & the sooner the better but not necessarily implemented immediately. Many pwd cope well for a very long time with adjunct care/oversight but the arc of some can be are swift. Dementia or not we all have care plans. #DiverseAlz |
| Diverse Alzheimers @DiverseAlz RT @helenfindlay: |
| nursesKidONE @nursesKidONE @DiverseAlz A1.I searched for studies establishing ALZ as most common type of dementia. Many cite @alzassociation as source. This from 1976: Katzman R. The Prevalence and Malignancy of Alzheimer Disease: A Major Killer. Arch Neurol. 1976;33(4):217–218. doi:https://t.co/LuqgRixJtR #diversealz |
| Diverse Alzheimers @DiverseAlz RT @nursesKidONE: @DiverseAlz A1.I searched for studies establishing ALZ as most common type of dementia. Many cite @alzassociation as source. This from 1976: Katzman R. The Prevalence and Malignancy of Alzheimer Disease: A Major Killer. Arch Neurol. 1976;33(4):217–218. doi:https://t.co/LuqgRixJtR #diversealz |
| Diverse Alzheimers @DiverseAlz @nursesKidONE @alzassociation Funny you should tweet this as we move to question 5 about knowledge and access #diversealz |
| Diverse Alzheimers @DiverseAlz We keep repeating ourselves but there is no harm in repetition... here is question 5 though do pick and mix. @nchadborn send us hint to your question, which is next! #diversealz |
| Diverse Alzheimers @DiverseAlz RT @Dembkclub: |
| Diverse Alzheimers @DiverseAlz RT @Dembkclub: |
| Diverse Alzheimers @DiverseAlz Question 5: Is access to information or knowledge important ? #Diversealz #unspecifieddiagnosis Not inviting folk to become doctors/neurologists here |
| Bikerwise @bikerwise #diversealz In my previous life I was a researcher. I was able to find out what I needed to know about my husband's specific variety, find a specialist, get him referred and follow up on their hints. Not everyone has that background. |
| Caroline @journeyofcareM @DiverseAlz When my mum got her diagnosis her husband was still alive. She might/might not have told him but he knew. His death bed plea was look after your mother. Not the way to plan for sure. Mum left vulnerable by her own character. A diagnosis doesn't mean acting upon it. #DiverseAlz |
| Bikerwise @bikerwise @nchadborn #diversealz But the time taken for these tests and scans could be and should be vastly reduced. The support system cannot kick in till diagnosis but if started early can be of much greater help. |
| nursesKidONE @nursesKidONE @DiverseAlz A2. It can result in denial of access to appropriate support/care. It also keeps professional standards of care for "dementia" at a low level legally, which helps prevent litigation that might help to the advance the rights of people living with dementias. #diversealz |
| Diverse Alzheimers @DiverseAlz RT @nursesKidONE: @DiverseAlz A2. It can result in denial of access to appropriate support/care. It also keeps professional standards of care for "dementia" at a low level legally, which helps prevent litigation that might help to the advance the rights of people living with dementias. #diversealz |
| Diverse Alzheimers @DiverseAlz RT @helenfindlay: |
| Diverse Alzheimers @DiverseAlz This |
| nursesKidONE @nursesKidONE RT @Dembkclub: |
| nursesKidONE @nursesKidONE RT @bikerwise: #diversealz Having a distinct diagnosis allows for planning eg husband's issues are predominantly visusl/spatial so we improved lighting, decluttered, cleared floors, changed colours. |
| nursesKidONE @nursesKidONE RT @DiverseAlz: Question 2: Question 2: How could an unspecified diagnosis affect planning? #diversealz |
| Diverse Alzheimers @DiverseAlz “A diagnosis doesn’t mean acting on it” tweets @journeyofcareM Something to think about there. #diversealz |
| Diverse Alzheimers @DiverseAlz Argument from here would be about the implications of an unspecified diagnosis for all but also people from minority ethnic groups and notion that dementia sometimes linked, incorrectly, to madness. That said, note stereotypes abound. Still. Good intro to question 6. #diversealz |
| nursesKidONE @nursesKidONE Can't speak to what happens if professionals think vascular dementia, but if they think it's Alzheimer's, they definitely want to discourage you from thinking abt it in anyway except inevitable decline; nothing can be done. #diversealz |
| Diverse Alzheimers @DiverseAlz Knowledge and information our question 5. Trawling for answers is what some people have and do go through. @TommyTommytee18 how do you build your knowledge? #Diversealz |
| Diverse Alzheimers @DiverseAlz Still need to emphasise that dementia is not about (only) forgetting. What do you think of phrase now creeping into use dementia and Alzheimer’s? #Diversealz |
| nursesKidONE @nursesKidONE "The medical community’s view changed after Dr. Katzman published an editorial in 1976, “The Prevalence and Malignancy of Alzheimer’s Disease,..." Robert Katzman, Alzheimer’s Activist, Dies at 82 https://t.co/6adSlZGEOy Have I missed anything? #diversealz |
| Diverse Alzheimers @DiverseAlz Question 6 via @nchadborn to what extent is sub-type & other expert information helpful in facilitating care & support in community, compared to personal preferences, cultural values etc? #diversealz |
| Bikerwise @bikerwise @nchadborn @DiverseAlz #diversealz Knowing how we were likely to progress allowed us to prioritise some activities over others because we knew what ability husband was likely to lose next. We followed this not strongest interest. |
| Bikerwise @bikerwise #Diversealz Sorry I have to leave now. Domestic duties call. |
| Caroline @journeyofcareM @DiverseAlz Knowledge is always valuable, especially if it helps one in some way. But we forget the ultimate big picture which is we have no clue about tomorrow so we should be writing our wishes down now as if we were to be incapacitated in any way. #DiverseAlz |
| nursesKidONE @nursesKidONE This was published in 1987. Primary Progressive Aphasia-Differentiation from Alzheimer’s Disease https://t.co/Z6TjZ80RRc Why didn't I know about it? #Diversealz |
| Diverse Alzheimers @DiverseAlz @nchadborn Question to add is what do they know about the dementias. #Diversealz |
| Diverse Alzheimers @DiverseAlz RT @nchadborn: |
| Diverse Alzheimers @DiverseAlz RT @journeyofcareM: @DiverseAlz Knowledge is always valuable, especially if it helps one in some way. But we forget the ultimate big picture which is we have no clue about tomorrow so we should be writing our wishes down now as if we were to be incapacitated in any way. #DiverseAlz |
| Diverse Alzheimers @DiverseAlz RT @bikerwise: @nchadborn @DiverseAlz #diversealz Knowing how we were likely to progress allowed us to prioritise some activities over others because we knew what ability husband was likely to lose next. We followed this not strongest interest. |
| Diverse Alzheimers @DiverseAlz RT @nchadborn: |
| Diverse Alzheimers @DiverseAlz RT @nursesKidONE: This was published in 1987. Primary Progressive Aphasia-Differentiation from Alzheimer’s Disease https://t.co/Z6TjZ80RRc Why didn't I know about it? #Diversealz |
| Diverse Alzheimers @DiverseAlz RT @nursesKidONE: "The medical community’s view changed after Dr. Katzman published an editorial in 1976, “The Prevalence and Malignancy of Alzheimer’s Disease,..." Robert Katzman, Alzheimer’s Activist, Dies at 82 https://t.co/6adSlZGEOy Have I missed anything? #diversealz |
| Diverse Alzheimers @DiverseAlz RT @nursesKidONE: Can't speak to what happens if professionals think vascular dementia, but if they think it's Alzheimer's, they definitely want to discourage you from thinking abt it in anyway except inevitable decline; nothing can be done. #diversealz |
| nursesKidONE @nursesKidONE @nchadborn @DiverseAlz It is also important to take into account the care partner, who may have a better idea of capabilities and adjustments, if any, needed. #diversealz |
| nursesKidONE @nursesKidONE RT @nchadborn: |
| Diverse Alzheimers @DiverseAlz Question 7 why do people tend to think “ inevitable decline” as in no hope. Surely , diagnosis where possible can lead to planning be it social, financial, health? #diversealz |
| nursesKidONE @nursesKidONE RT @bikerwise: @nchadborn @DiverseAlz #diversealz Knowing how we were likely to progress allowed us to prioritise some activities over others because we knew what ability husband was likely to lose next. We followed this not strongest interest. |
| Diverse Alzheimers @DiverseAlz RT @nursesKidONE: @nchadborn @DiverseAlz It is also important to take into account the care partner, who may have a better idea of capabilities and adjustments, if any, needed. #diversealz |
#DiverseAlz content from Twitter.