Two thirds of people with dementia are cared for in their family homes.  They’re known as family caregivers, but they don’t think of themselves like that – they’re just looking after mum or dad, or a grandparent, or perhaps a husband or wife.  How are they coping now, I wondered, in this coronavirus quarantine that has effectively cut them off from people who help and encourage, at the very time that they need them most?  On a dementia caregivers social media group I asked, ‘There hasn’t been anything in the press, as far as I can see, about how family caregivers are coping. It must be a huge loss to them that friends and family are not able to stop by. How are they coping? If this describes you and your situation, how are you coping?’

There were 33 responses within a couple of hours.  The first two simply said,  ‘struggling; and ‘really hard.’  ‘I found it very stressful when all the Alzheimer’s groups were stopped, as they are a big part of my week,” said another, “hope we all get through this and life returns to our ‘normal’ very soon. Take care everyone.’

‘Thank you for asking,’ said K, ‘it’s very lonely being a carer at the best of times. I’m the main carer for my hubby, he had three days a week care, all that is gone for the foreseeable future. He is in the later stages, speech going but still very aware of a lot of things. He misses the company of day-care and he keeps breaking down in tears. I’ve been trying to keep him occupied, planting seeds, bought colouring books and crayons, trying some chair exercise…I’m coping well at the moment but feeling the stress.”

M posted, ‘Thank you for asking – made me feel better.’

Sir Terry Pratchett, author of the disc world books, said that dementia was a large number of small tragedies usually played out behind closed doors.  Family caregivers don’t care that their often-sacrificial care is saving the government £billions – they just want to do the best for their loved ones.

Every Thursday evening we’re going out to clap, whistle, shout, clang pots and pans to applaud our wonderful NHS workers.

Shouldn’t we be doing the same for these unsung dementia caregivers?  If you know someone, why not send them an email that includes the link below – clapping and cheering!?

Louise Morse

Louise Morse MA (CBT) is media and external relations manager for the Pilgrims’ Friend Society. She is a writer and speaker, and author of books on issues of old age, including dementia, published by Lion Monarch and SPCK. She is a cognitive behavioural therapist, and her Masters’ dissertation examined the effects of caring for a loved one with dementia on close relatives.

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