My grandpa was diagnosed with dementia in 2000, but the doctor didn’t tell us much more than that, and no one knew what to ask. That’s why I’m such an advocate for caregivers asking questions and learning as much as they can about their loved one’s diagnosis. We navigated everything on our own until hospice joined us. He passed away a month later in 2005. Now I know he should have been diagnosed much earlier, but his confusion was said to be from hearing loss. Now we know that hearing loss is a contributor to dementia and often a misdiagnosis of dementia.
Thanks for sharing, Tina. Learning about symptoms and questions is so important. I'm sorry you and your family didn't have the support you could have had, earlier.
Victoria, what you wrote about your dad. How everything started unraveling after the hospital. He spoke how many languages, and that's what goes first. Brutal.
Vascular dementia after that kind of hospitalisation, it's not what anybody reaches for first. Everyone's chasing the heart, the kidneys, checking for cancer, you know, the usual circuit. Meanwhile the mind dimming sits there quiet, until something actually breaks. By the time someone finally hands you a diagnosis, you've already spent months wrestling with the whole thing on your own. No paperwork. Just you and it.
Which is why Dementia Action Week lands funny this year. NHS quietly chucked the dementia diagnosis target out of last year's planning. Wait times from referral are 151 days now, up from 124. Some regions people are stuck for nearly a year. The campaign pushed more people through the GP door, fine. And then? The queue behind that door hasn't moved. In some places it's longer.
But your dad got to stay home. That's not nothing.
Thanks Vance - actually, he had no dementia before the hospitalisation, it was lack of oxygen after hours of a bleed and waking anaesthesia with nightmareish endoscopy that I believe led to his vascular dementia - an h pylori infection bleed + warfarin caused the bleed. So he wasn't wrestling with symptoms; he was very active and proactively managing his conditions himself before that hospitalisation.
Yes, I understand the NHS system constraints, and productivity measures - is that what needs to determine people being aware of dementia symptoms and championing their needs and care? Connecting with a GP isn't just about getting a referral; it's also about connecting to local support groups, which allow people to feel less scared and alone. I know of one person who got referred, and started acetylcholinesterase inhibitors and he & his family are in a calm period (for now). I think we need to humanise the numbers and stats.
So, I don't think I'd stop campaigning for dementia in function to the size of 'a queue behind the door'. NHS funding, operations, and plans need to be reformed to match demographic shifts and population needs. AND social care reforms are needed now (you may not know that's a different system to NHS here in the UK), but we're waiting for the report to be completed in 2028. But I can't influence that - aside from signing petitions and supporting policy changes.
Any disease awareness campaign is educating people about their health and enabling carers like me access support - it's not just about getting a diagnosis or treatment.
So, even if this, and several other awareness campaigns, 'land funny' - perhaps empowering people to seek support, and raising our needs for policy changes can help GPs, and the NHS and social care get the kind of reforms they need sooner.
I think, to your point, given the limited treatment options, the overburdened NHS system, the state of social care, and the limited assisted living options, the campaign is needed to amplify the need for change.
Meanwhile, the unpaid carers, family and those with dementia need to hear how they can help sustain themselves with whatever support they can find. The everyday reality goes far beyond Dx, Rx, Tx, etc.
Victoria, by back channel I mean the operational layer. Templates for the letter to the DON. The name of an ombudsman who actually picks up. The person at the local authority who answers the phone. The campaign moves legislation, that's years. The back channel moves Tuesday morning. Families end up there before the policy work lands because they don't have years.
You're right that the real terrain runs past the clinical alphabet. The campaign and the back channel aren't competing, they run on different clocks.
Hi Vance - (just wanted to expland on my comment.) I agree with what you're pointing to 'operational layer' and how policy takes time
The more we can do to amplify the realities, the better, especially with the ongoing independent commission review of Social care reform happening right now - hence UK charities policy work
I hope through your work and mine that we can help people - feel seen, get support from what they may not know is available today.
I'm also trying to support key charities in this window of opportunity. Change is overdue, And now, timing is even more important.
I'd be interested to read your thoughts on UK social care, and dementia support.
Victoria, the structural rot is identical on both sides of the ocean. Britain wrings families dry to a pitiful £23,250 before social care kicks in. The US guts them just as thoroughly through Medicaid spend-down until there's nothing left but lint. Different numbers, same engine.
The Casey Commission's persona work actually hits, because they finally dragged the operational reality into the room. The kind of evidence bureaucrats normally just bury in reports. Smuggled what they used to hide straight into the main hall. If the charities can get the architecture of bleeding families dry named as structural rot and not some temporary budget shortfall, the Phase 1 report has a real shot at landing differently than the last three reviews that all got quietly buried.
Anyway, let's keep this going, the conversation is live.
My grandpa was diagnosed with dementia in 2000, but the doctor didn’t tell us much more than that, and no one knew what to ask. That’s why I’m such an advocate for caregivers asking questions and learning as much as they can about their loved one’s diagnosis. We navigated everything on our own until hospice joined us. He passed away a month later in 2005. Now I know he should have been diagnosed much earlier, but his confusion was said to be from hearing loss. Now we know that hearing loss is a contributor to dementia and often a misdiagnosis of dementia.
Thanks for sharing, Tina. Learning about symptoms and questions is so important. I'm sorry you and your family didn't have the support you could have had, earlier.
Thanks, Victoria. I learned a lot by figuring it out. It’s all helped along the way.
Victoria, what you wrote about your dad. How everything started unraveling after the hospital. He spoke how many languages, and that's what goes first. Brutal.
Vascular dementia after that kind of hospitalisation, it's not what anybody reaches for first. Everyone's chasing the heart, the kidneys, checking for cancer, you know, the usual circuit. Meanwhile the mind dimming sits there quiet, until something actually breaks. By the time someone finally hands you a diagnosis, you've already spent months wrestling with the whole thing on your own. No paperwork. Just you and it.
Which is why Dementia Action Week lands funny this year. NHS quietly chucked the dementia diagnosis target out of last year's planning. Wait times from referral are 151 days now, up from 124. Some regions people are stuck for nearly a year. The campaign pushed more people through the GP door, fine. And then? The queue behind that door hasn't moved. In some places it's longer.
But your dad got to stay home. That's not nothing.
Bittersweet joy, like you wrote. Yeah.
Thanks Vance - actually, he had no dementia before the hospitalisation, it was lack of oxygen after hours of a bleed and waking anaesthesia with nightmareish endoscopy that I believe led to his vascular dementia - an h pylori infection bleed + warfarin caused the bleed. So he wasn't wrestling with symptoms; he was very active and proactively managing his conditions himself before that hospitalisation.
Yes, I understand the NHS system constraints, and productivity measures - is that what needs to determine people being aware of dementia symptoms and championing their needs and care? Connecting with a GP isn't just about getting a referral; it's also about connecting to local support groups, which allow people to feel less scared and alone. I know of one person who got referred, and started acetylcholinesterase inhibitors and he & his family are in a calm period (for now). I think we need to humanise the numbers and stats.
So, I don't think I'd stop campaigning for dementia in function to the size of 'a queue behind the door'. NHS funding, operations, and plans need to be reformed to match demographic shifts and population needs. AND social care reforms are needed now (you may not know that's a different system to NHS here in the UK), but we're waiting for the report to be completed in 2028. But I can't influence that - aside from signing petitions and supporting policy changes.
Any disease awareness campaign is educating people about their health and enabling carers like me access support - it's not just about getting a diagnosis or treatment.
So, even if this, and several other awareness campaigns, 'land funny' - perhaps empowering people to seek support, and raising our needs for policy changes can help GPs, and the NHS and social care get the kind of reforms they need sooner.
Victoria, that's fair on the access piece. The back channel is where the campaign actually delivers
I'm not sure what you mean by "the back channel"?
I think, to your point, given the limited treatment options, the overburdened NHS system, the state of social care, and the limited assisted living options, the campaign is needed to amplify the need for change.
Meanwhile, the unpaid carers, family and those with dementia need to hear how they can help sustain themselves with whatever support they can find. The everyday reality goes far beyond Dx, Rx, Tx, etc.
Thanks, Vancce.
Victoria, by back channel I mean the operational layer. Templates for the letter to the DON. The name of an ombudsman who actually picks up. The person at the local authority who answers the phone. The campaign moves legislation, that's years. The back channel moves Tuesday morning. Families end up there before the policy work lands because they don't have years.
You're right that the real terrain runs past the clinical alphabet. The campaign and the back channel aren't competing, they run on different clocks.
Hi Vance - (just wanted to expland on my comment.) I agree with what you're pointing to 'operational layer' and how policy takes time
The more we can do to amplify the realities, the better, especially with the ongoing independent commission review of Social care reform happening right now - hence UK charities policy work
I hope through your work and mine that we can help people - feel seen, get support from what they may not know is available today.
I'm also trying to support key charities in this window of opportunity. Change is overdue, And now, timing is even more important.
I'd be interested to read your thoughts on UK social care, and dementia support.
Thanks for this exchange, Vance!
Victoria, the structural rot is identical on both sides of the ocean. Britain wrings families dry to a pitiful £23,250 before social care kicks in. The US guts them just as thoroughly through Medicaid spend-down until there's nothing left but lint. Different numbers, same engine.
The Casey Commission's persona work actually hits, because they finally dragged the operational reality into the room. The kind of evidence bureaucrats normally just bury in reports. Smuggled what they used to hide straight into the main hall. If the charities can get the architecture of bleeding families dry named as structural rot and not some temporary budget shortfall, the Phase 1 report has a real shot at landing differently than the last three reviews that all got quietly buried.
Anyway, let's keep this going, the conversation is live.