Fairly good deal for people in care just needs a little more imagination

IT was Ronald Reagan, I think, who tried to laugh off the earlier stages of his Alzheimer’s disease by saying “the great thing about this condition is that you meet new people every day”. Sounds funny, doesn’t it. But when you’re actually in a position to witness the destruction of a once fine mind, somehow the humour disappears.

On these pages last week, Terry Prone wrote movingly about the condition too. I want to write about the public policy aspects of Alzheimer’s and dementia, so if I get personal for a minute, that’s only to declare an interest.

I’m waiting for an elderly relative to qualify for the Fair Deal scheme. There’s no reason this relative shouldn’t qualify – but if she doesn’t the result will be immensely difficult for an entire family. So it’s probably real begrudgery for me to point out that this isn’t a perfect scheme, but I’d be less than honest if I didn’t do so.

To begin at the beginning. It started with odd behaviour – walking the street in pyjamas, leaving food in an oven turned up too high and going to lie down in bed, imagining there were intruders in the house and calling the police several times a day. But always, always insisting there was nothing wrong, and no reason to question the independence of the living arrangements. And then a physical illness which brought this previously strong person to death’s door. But an astonishing physical recovery, to the point where none of the family could see anything wrong. Except that memory was almost completely gone. There was still recognition for other members of the family, but no knowledge of what day of the week it was, when a family member had last been seen, what subject had been discussed 10 minutes ago.

You know the expression “loss of short-term memory”? Well, this was so complete it was almost like the person concerned had no present tense.

This elderly lady had a fine literary mind all her life. She could hold a conversation – and win an argument – with any literary critic, and was something of an expert in the writings of people like Henry James and Oscar Wilde.

All of that is pretty well gone. It has been replaced, often, by anger. Anger at the loss of freedom and independence. Anger at the thought of being a burden on others. It’s strange that a loss of intellectual capacity – to the point where it simply isn’t possible to explain why a person needs care – can still be accompanied by a chafing for all the things she can no longer manage.

Now she depends on a nursing home, a lovely place in a gracious old house where privacy and independence is managed to the greatest extent possible.

There are staff who genuinely care and policies and practice that have been independently evaluated and praised. She’s safe, comfortable and secure. And she hates every minute of it.

The alternative, of course, is disaster. If and when an elderly person can settle in the surroundings of a nursing home – and yes, it does mean coming to terms with the loss of a life-long sense of freedom and power over your own destiny – the quality of care provided can mean a life where dignity is restored, where good physical health is some compensation for the loss of intellectual capacity and where a family can at least be secure in the knowledge that their relative is safe, nearby and accessible.

Of course, all that costs money. Up to a couple of years ago, the choice when nursing home care was needed was between a public bed and a private one.

Public beds, in public nursing homes, were frequently of a very poor standard and were usually totally inaccessible.

Private nursing home care was astonishingly expensive – to the point where the vast majority of families simply couldn’t even consider it unless they had an asset to sell.

The Fair Deal was designed to end all that. Its proper name is the Nursing Homes Support Scheme and it came into effect, after a number of years of stop-start policy implementation, in the autumn of last year.

The purpose of the scheme, according to the Department of Health, is to provide financial support for people assessed as needing long-term nursing home care.

The scheme, says the department, is founded on the core principles that long-term care should be affordable and that a person should receive the same level of state support whether they choose a public, voluntary or private nursing home. And it’s now the single funded means of accessing long-term nursing home care for all new entrants. Administered by the HSE, the Fair Deal has effectively replaced any previous subventions that might have been offered.

And here’s the good news. In the most basic terms, the Fair Deal works in that it offers a much higher sense of security than used to exist. It appears to be well run and is easy enough to understand.

The staff involved, in so far as I have been able to observe, are committed to the scheme’s success.

In all those senses, the Fair Deal might well (on its own) constitute a legacy of which Mary Harney can be justifiably proud. The first thing that happens is a test of personal care and health needs. It’s reasonably straightforward, especially if the person being tested has already been in the care of health professionals.

After that there must be full disclosure of income because the scheme enables the state to take 80% of the disposable income of the person and up to 15% of their assets (usually a house) after their death.

BUT the scheme is capped – a fixed amount is allocated each year. A total of €97 million has been allocated this year – which could well result in otherwise fully-qualified elderly people being denied access to the scheme if and when the money runs out towards the end of the year.

And the 80% of disposable income that is taken from everyone who qualifies might not seem harsh if there is a family on which the elderly person can rely for the extras in life, but it seems a cruel amount to deduct from anyone who is alone in the world.

More to the point, there are things the scheme pays for (accommodation, nursing care, laundry) and things it doesn’t. An elderly person who needs a special wheelchair, for example, has to supply that for themselves.

It’s all too easy to see how bureaucratic rules and inflexibility, applied to a scheme that is supposed to remove anxiety and undue distress, could in fact lead to more hardship rather than less.

Whatever happens in the case of the elderly person I’ve described here, she has a family who will try not to let her down. So I hope, if I describe the scheme as a really good scheme that needs some additional ingredients of flexibility and imagination if it is really to accomplish its aim of bringing dignity to elderly people in need of care, that won’t be seen as special pleading. All I would really like is to see a good ship not spoiled for a ha’porth of tar.