Thread by @lewis_goodall

COVID AND DEMENTIA

Have spent the last few days looking into the situation with care, cover and dementia.

Dementia sufferers are dying at an alarming rate in this epidemic, one of the worst affected groups.

These are the reasons why and what could change it. (thread)

First some numbers

App 42% of all those who have died in a care home setting have Alzheimer’s or dementia.

25% of those who have died from cover overall have Dementia

Overall excess deaths for dementia patients have rocketed- 83% above normal in England in April.

And this isn't just about their vulnerability. Data from @alzheimerssoc and shared exclusively with Newsnight shows 79% of care home managers feel lockdown is damaging their dementia residents' physical health and wellbeing.

There are a number of reasons for these figs

The first is there isn't enough dementia specific guidance for care homes

Eg: the primary virus containment method in care homes is confinement of residents to their rooms

This is basically impossible for dementia patients

I was in St Cecilia's, a specialist dementia home in Scarborough today

Staff there told me they have to keep repeating to their residents why they have to stay in their rooms

Some can understand for a while

But some can't understand at all- and they go wandering.

There are things they can do- including reverse isolating, isolating residents who can understand as opposed to those who can't

As a last resort they can try and put PPE on residents but this isn't easy either. Imagine trying to put a mask on someone who doesn't understand why

Dementia homes are having to recognise they have to let deeply affected patients wander the corridors. But the infection risk here is very obvious. Residents often try and hug others, if they're infected or not. As a manager told me "it only takes a second"

But there often isn't enough staff to watch someone all the time. Locking in a room would cause huge distress. Charities and homes want govt to start focussing on specific guidance on this point for the autumn and winter.

Given the fact that this is such a physical group of people (they often really want hugs and physical intimacy and it isn't sensible to deny them) PPE is all the more important. This has improved- but there are still some problems.

Staff in dementia homes are desperate for routine testing of residents and by routine, we're talking at least once a week. This is all the more important to suppress dementia cover death because often these are people who might not be able to describe and express their symptoms.

But people with dementia have been affected in other ways. Dementia and depression are often connected and many dementia residents are falling into a deep sadness. They can't see their families, they don't understand (or can't retain) why not and it's profoundly affecting them.

When depression comes and lack of stimulation and routine sets in, I've been told that the speed of cognitive and physical decline can be remarkable. Residents are stopping eating, drinking and losing the ability to speak.

I spoke to Trevor, whose wife Yvonne developed Alzheimer's at 53. He worries she's forgotten his face, having not been able visit her in 2.5 months: "The sparkle went from her eyes. She's in a lost world. Carers wearing masks made it hard-scary. She doesn't recognise them."

As Kate Lea of @alzheimerssoc told me: “social isolation has a huge and disproportionate impact on people with dementia"-this is why so many of our non-covid excess deaths seem to be coming from our dementia sufferers:“if this was our children we’d be screaming from the rooftops”

It won't be a case of simply allowing visitation- but there is a recognition that blanket prohibition of visitation for dementia sufferers is very, very damaging and probably needs to be altered. This goes back to the point of needing dementia specific guidance from DHSC.

There are also reports of some GPs being reluctant to visit care homes on site- so the other medical needs of dementia residents aren't always being attended to. Care support plans aren't always being created or maintained. As one manager said to me: "it's all slowly unravelling"

Structurally though, it all comes back to the same thing. I've said it before, it's not original but it's true: care is the poor relation of health. It is crazy that the NHS will pay in its entirety for a heart attack but not necessarily for your dementia related costs.

Frankly- this is killing people. If the sector were properly funded, those with dementia might have the 24hr care they need. Carers are trying v hard but for reasons I've explained, it's not always enough.

Worse, the cost pressures are getting worse as this crisis proceeds.

It's worth just saying this: people with dementia are still people, they're just not the people they used to be. Sometimes, there's a real tendency to write them off. That's wrong. They can live happy, full lives. Some are dying before their time.

Also worth saying- one of the silver linings for me in this crisis is the time I've got to spend with carers. I've truly not met a more extraordinary dedicated group of people. We are a lucky country- they're often more than we might deserve.

In terms of injustice little can rival the needless deaths of those who might not know they’re dying, who can’t know why, who cannot help themselves- who aren’t even aware they need help.

More to say on this but do tune into Newsnight for my full report- BBC 2, 1045pm.

Thanks v much for your kind words about the piece. Have been struck by how many have got in touch with your experiences of relatives with dementia who have declined and sadly died in this period, for no apparent physical reasons. ONS data today confirms how big an issue this is.

If you missed the full report from me and @lharriswhite on last night’s @BBCNewsnight on dementia and how it’s driving our tragic excess death figures, you can watch it here: