A thought experiment
Fixing schools
When I read the first couple of lines of the email, it seemed like a great idea. The school was contacting all parents to tell us that starting next semester, every child would have one hour of one-to-one tutoring every day.
Perfect, I thought. Especially for Matt, who’d been struggling to keep up in some of his classes after the move to high school last year. And for Abby too, our little star, extra coaching would surely help her to shine even brighter.
But as I read on, I realised there was nothing ‘extra’ at all. Far from it. One hour of private tuition per day was the sum total of all the teaching our kids were going to get, because the school was …
CLOSING DOWN!
And so were all the other K-12 public schools in our district.
Why? Because, the email explained, our local school board, facing funding shortages, had sought help from expert consultants. Their advice was to invest in people, not premises. Close the schools, they said, and use the savings to double the number of teachers and send them out to students in their homes for two sessions of thirty minutes each day. The teachers would set assignments, parents would assist their children in carrying them out, and the web and AI were always there to fill in any gaps. That was how to raise academic achievement without raising state taxes. The argument was so persuasive that the board had decided to implement the recommendation immediately.
I was not persuaded. So a teacher would arrive at our home, twice a day, morning and afternoon, for a half-hour session each time. For Matt and Abby that would mean four visits. And at their age, we couldn’t just leave them alone in the house all day. It meant that either Alex or I would have to stay home too. One of us would have to quit our job — and lose a salary. How would we manage to pay our mortgage?
And how would the kids react when we told them they had to stay at home all day long with one of their parents? They’d hate it, being cut off from their friends. Besides, isn’t that what school’s supposed to be about as well, learning how to live and work and play with others in a community?
Another thing. I don’t really relish the thought of spending the whole day in the house with Matt and Abby for the next several years. It’s not because I don’t love them or enjoy their company. But not all the time! We all need space for our own lives too, no matter how much we love someone.
I might not have been much help to Matt with his math homework, but I knew enough basic arithmetic to spot a huge flaw in the plan. Doubling the number of teachers wouldn’t come close. Matt’s class had 22 students. Give every one of them two home visits a day, add travelling time, and we’d need roughly four times as many teachers — in the middle of a teacher shortage.
It was a terrible plan! They hadn’t thought it through.
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Fixing dementia care
Don’t worry. This isn’t about to happen in your school district. Elected officials have been known to make crazy decisions, but none quite as crazy as this. I have a confession. The school, the email, Matt and Abby, Alex — I made the whole thing up.
Why invent such an absurd scenario? Because, here in the UK at least, we’ve built a system remarkably similar for dementia care at home. How do I know? Because after my wife Lena was diagnosed with early-onset Alzheimer’s, I spent more than 13 years as her carer and, eventually, her nurse. At home throughout.
By the time her diagnosis was confirmed, Lena was already unable to dress, shower or cook unaided. So we were offered two 30-minute visits a day from a professional home carer, who would come to the house to assist with personal care — getting washed, getting dressed, preparing food, taking medication and so forth. The idea was to give me a break as well.
I’m sure that people with dementia who live at home alone are grateful for this assistance — and for the company.
But for Lena and me it was soon clear that this was not the kind of assistance we needed or wanted. I’d already spent a couple of years helping her with those basic functions of life, and I was coping pretty well. And although our care visitors were always friendly and eager to help, we were never quite sure who was coming or when they would knock at the door.
In the fortnight we used the service, five different carers arrived. Each time, it felt like I was training the carers, explaining Lena’s condition to them, and then showing them what she enjoyed and what she didn’t. And breakfast couldn’t happen till the carer turned up.
Were the care workers to blame? Not at all. A little research revealed chronic staff shortages and high turnover in home care, not just in the UK but in the USA and the EU too. The reports I read attributed the sector’s difficulties to low pay, insecure employment and inadequate training. But is there a deeper issue? In our thought experiment, we saw that the introduction of peripatetic teachers would increase staff numbers and costs. Might that not also be the case with peripatetic carers? I’m not suggesting that we eliminate home visits; for some dementia patients they’re essential. But could we use our scarce professional carers more effectively and efficiently — while improving both pay and job satisfaction?
My starting-point was to think about the assistance that would have most benefitted us in those first six or seven years when Lena was still mobile.
- Community contact. We found that dementia quickly isolated us from others: friends and neighbours weren’t quite sure how they should react or what to say. Just like the parent and the children in our thought experiment, Lena and I were suddenly bound to one another. We’d always loved the time we spent together, but before it was never all the time and every day.
- A renewed sense of purpose. Our life together had always been such an adventure, with new plans, new projects, new places. Now dementia seemed to have sucked the energy out of us.
- Ideas and advice: Other carers must have faced the same baffling situations I did — explaining to mystified shoppers why my wife had disappeared with their shopping trolley before they’d paid, for example. I’d have loved somewhere to exchange experience and practical ideas.
- Training: I must have spent over 100,000 hours caring for Lena. Yet only in the very late stages did I have any training — and then just an hour or two, to learn the practicalities of using a ceiling hoist and a hospital bed.
This is how my thinking developed. What if, alongside the professional help some people still need at home, people with early to mid-stage dementia also had somewhere to go every day? All day. Just like kids going to school. The idea crystallised into a place I’m calling a Bine Centre: a community activity centre open throughout the working day, for seven days a week.
I chose those words ‘community’ and ‘activity’ carefully. The Bine would be a place where groups of people with dementia — assisted by professional and volunteer carers — are invited to join in community-focused projects. (Recording stories from their youth for their grandkids, for example. Or helping housebound residents with their shopping. I’ll suggest more activities in the next article in this series.)
Volunteering at The Bine would give family carers like me the opportunity to share experiences. The professionals leading the group would also be able to give us the training so lacking at present.
There would be one more huge benefit for family carers. My proposal is that, by volunteering at The Bine for just two days a week, the person they care for would be given free membership throughout the week. This could give carers back their daytime hours for the other five days of the week, allowing them to work, see friends, pursue their own interests — or simply recharge their batteries.
Would The Bine have worked for Lena and me? I have no doubt.
Will it work for every family living with dementia? Of course not.
But what am I missing?
* * *
If you’ve lived with dementia — as a carer, professional or family member — what would you want a centre like this to provide?
