As we let the social care bar drop ever lower – are our relatives being fed and wiped? – we lose sight of all requirements for a dignified end of life
“I ought to get to dinner. We must not cogitate” says my 97-year-old grandmother, who has lived with vascular dementia for three years, after a series of strokes. Now, though she does not recognise me, she can still pluck from the dusty attic of her mind a word I – shamefully – didn’t know.
The word, like many polysyllables my erstwhile crossworder grandmother surprises me with, is now one I understand. But the act (to deeply think about something, with intent to do something about it) is unfamiliar not only to me, with my millennial distractions of boxsets, Instagram memes and eternal financial and societal insecurity, but to those in charge of the nation’s social care.
Funding for adult social care is in crisis. By 2026 it will require an extra £2.6bn. After the NHS chief Simon Stevens told the government care “must be front of the queue” in the waiting room for governmental cash injections the communities secretary, Sajid Javid, unveiled new measures to give £240m of funding for social care in 2017/18.
Councils will see their new homes bonus delivered differently, and will pass on to their citizens a 3% precept on their taxes for two years. The Local Government Authority has warned this will not only create a postcode lottery for services, but put pressure on already struggling taxpayers.
But the money is direly needed, in part to cover the specific training carers and nurses need for bodies that have outlasted minds. Dementia, including Alzheimer’s disease, afflicts 850,000 people. This number is both underestimated and rising.
Dementia and Alzheimer’s twine around sufferers’ minds with such fecund entitlement that it’s sometimes hard to make out the individual within. But now that my grandmother is in a residential care home, I no longer need to help her with her food or commode, or assist my tired and nervous grandfather to wake her at 2pm , 4pm, 6pm. With the luxury of good quality, state-run care I now have time to cogitate – to think about finding a way through to my grandmother.
Validation therapy, developed by Naomi Feil, is not a cure, she says. But: “It restores their dignity and feeling of self-worth. It’s a way of being with them, a way of stepping into their world, feeling what they feel.”
Its techniques are kind and empathetic. Patients are encouraged to describe fantasies and reminiscences, a carer mirroring their language and movement. The carer must accept the patient’s reality, and eye contact and physical touching are recommended.
A YouTube video of Feil at work shows her guiding a nonverbal Alzheimer’s sufferer to sing hymns and tap out a rhythm. She’s magic, an old-whisperer. It’s as if David Blaine were charming and enlightening, instead of, well, David Blaine.
Validation therapy seems to work on my grandmother. After one hour, she regained skills previously withered, such as reading the clock and gossiping about a co-resident. She also stopped her normal mantra (“I ought to throw myself out of the window”) and taught me a word I didn’t know. This method won’t work for everyone, and the NHS advises there’s not enough evidence to suggest it works for anyone. But, after so long feeling powerless to help, and this in turn making me reluctant to visit, it felt good.
We can all bicker about funding social care. “We” might be micro: a family flapping through files to find all the relevant bonds, savings and Isas. Or it could be macro: the government and local authorities tussling over how best to stuff the mattress. Yet as we become so wrapped up in this, we let the bar drop so low – are they being fed and wiped? – that we lose sight of any requirements for a dignified end of life.
In the meantime, family members, especially female ones, will be drafted in to do the manual care work. And while we’re commended for our communication skills, even Feil couldn’t work her magic with dirty dishes to be done. It’s also hard to pay taxes if you’re doing unpaid work.
The Alzheimer’s Society’s recent survey of sufferers found that more than half, since diagnosed, see less of their family at Christmas. Regardless of your take on validation therapy, Feil’s concern that social isolation and memory-loss conditions work in toxic coalition is just common sense.
It’s hard to gauge its precise cost, but easy to imagine how families could thrive if they were equipped with the time to find the right way through to their older people. Instead of longing to keep older people with dementia safely swaddled in madness, we must aim higher, to guide them into finding peace with their madness. How’s that for some cogitation?