Isolation diary: Feeling sad

My mother died from Alzheimer’s. It was some years ago and I don’t find it difficult to write about. In fact she was in her 90s, had lived a good life and had a calm death in a supportive environment. The home where she spent the last 3 years of her life practised the Eden Alternative, which is a holistic approach to caring for people with dementia. She was very contented. So that’s not what is making me sad today.

What is often forgotten is that Alzheimer’s, along with other forms of dementia, is an irreversible terminal illness. However, unlike all other terminal illnesses, it is treated as a social rather than a medical problem, so people with it are cared for in care homes, or in their own homes, rather than hospitals. In practice that can often be a good thing, because care homes that specialise in dementia are often very good at managing people with it. They can support all aspects of that person’s life rather than just focusing on the health issue. For people living at home it can be a very different story.

Which brings me to the news from the Office of National Statistics that has upset me today. 25% of all people who have died from Covid-19 had dementia. In some way that is not surprising, since people with that condition are physically very vulnerable indeed.

The unexpected news is that 10,000 of the excess deaths in England and Wales up to the end of April have been of people in care homes with dementia who did NOT have the virus. That is 83% above the normal number of deaths of people with dementia. Where a doctor suspected that someone had died of the disease, they were counted in the Covid-19 deaths even if they hadn’t been tested.

It appears that a sizeable number of those excess deaths were virus free. So why were they dying at a rate above that which might have been expected?

The Alzheimer’s Society suggest that

The increased numbers of deaths from dementia are resulting partly from increased cognitive impairment caused by isolation, the reduction in essential care as family carers cannot visit, and the onset of depression as people with dementia do not understand why loved ones are no longer visiting, causing them to lose skills and independence, such as the ability to speak or even stopping eating and drinking.
The Guardian, 05/06/2020

My heart goes out to all those people, and also to their families who can only stand by and watch.

The research was only looking at people in care homes, so we won’t know for some time the direct and indirect impact of the virus on people with dementia living at home. But I imagine it will be a similar story.

That’s why I’m sad today. Care homes, like the one where my mother lived, can be wonderful environments in which people thrive. But, even in the best of homes, the realities of lockdown on a vulnerable person who barely understands what is happening is heartbreaking.

 

 


Please note

We have been in full self-isolation since 16th March to protect my husband whose immune system is compromised.

If you are in self-isolation then join the Lib Dems in self-isolation Facebook group.

You can find my previous Isolation diaries here.

 

* Mary Reid is a contributing editor on Lib Dem Voice. She was a councillor in Kingston upon Thames, where she is still very active with the local party, and is the Hon President of Kingston Lib Dems.

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4 Comments

  • @Martin – I took that from the ONS report. Do correct me if I have misunderstood.

  • David Garlick 6th Jun '20 - 5:52pm

    Thank you for this insight into the plight of those dementia sufferers. I hope that this information features in the inevitable reports that emerge post crisis whenever that may be, as it amplifies the damage done by the neglect of the Care Home sector, before and during, this sad time.

  • Caron Lindsay Caron Lindsay 7th Jun '20 - 3:02pm

    This is indeed heartbreaking and shows that the harm wreaked by this virus goes beyond its own physiological wake.

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