A few months back I visited someone in Mangakino, a small New Zealand central North Island town, originally built for the workers who were constructing the huge hydro dam of the same name. I had visited there as a kid to see the massive building works.
When I returned home, a drive of around 40 minutes, my wife enquired where I had been. I knew where I had been in crisp detail, but not the name of the town. Whakamaru was the next town and that I remembered well from my schoolboy visit over 60 years ago. But Mangakino had taken fright and raced away from my finely tuned neurones. “Come back,” I wanted to shout. But I could only bleat: “It’s slipped my mind. I’ll remember later.”
Simple solution: I’ll google it, or least the neighbouring dam: Whakamaru. Sure enough, there on the map nearby was Mangakino. Problem solved.
Nope. Not solved at all. After I closed the Google screen I called out to my wife: “It was XXXX?” The pesky word remained absent, absent without leave I might add, and the Google jog had gone with it. I began to think that I’d better check in to a dementia unit as I was losing it, and what did I need to take with me?
Common sense prevailed as I felt on top of stuff otherwise. So I wrote the word Mangakino on a card and placed it beside the phone and computer. It took three days for that pesky neurone either to wake up, or pass the name to an underworked neighbour. And it did, and now I am Mangakino educated and friendly.
I don’t have dementia!
So occasional, or even common trouble with memory recall is a feature of normal ageing. When dementia arrives, at first with isolated episodes of abnormal or even bizarre behaviour, sudden mood changes, or increasing patches of forgetfulness or lack of recognition of people they know well, or increasing confusion, then it is time for action. Daily skills begin to fade; individuals can struggle with conversation; judgment becomes unreliable; they may wander without knowing where they are, and their personality can alter materially. It is time for a proper medical assessment, to be sure that the issue is dementia, as in many instances it is something else. You don’t want to get it wrong! Self-diagnosis is a wobbly zone and can prematurely label a spouse or loved one with a disturbing diagnosis that it is not.
Sometimes the individual is reacting adversely to medication; drug doses for older subjects are commonly too high. Or their thyroid gland is out of kilter, or there are disturbances of their liver or kidney. Type II diabetes can induce changes suggestive of dementia, as can mini strokes. Too much alcohol in the elderly is a common disrupter of behaviour and memory. Depression and anxiety can over-run the governors of normal behaviour. A bladder, or even deep skin infection may tip behaviours off balance and individuals can appear confused. Low levels of vitamin B12 are a common cause of abnormal behaviour and personality in older people.
So find the disorders that are not dementia and get them treated. Missing a masquerading condition that is readily identified and treated is a major lost opportunity to discard the dementia label and return life to its rightful path. There are a range of tests for dementia that doctors and psychology professionals use to cement the diagnosis.
Although there are different forms of dementia, Alzheimer’s being the most common, there are many others, such as dementia with Lewy bodies, the affliction that targeted Robin Williams and triggered major behavioural crises and hallucinations. However, with a few differences, the long term course is rather common for all causes of dementia, with slow decline, as the individual becomes withdrawn and their very sense of self becomes dragged towards the dementia realm. Even watching themselves in a mirror many see a stranger looking back at them.
What to do? Is there a cure or a treatment? There has to be, as so many conditions, even cancer, are benefitting from new treatments these days. At present there is no treatment that addresses the underlying disease process. It is essential for families, partners and spouses, once the diagnosis is certain, that they learn to accept the predictable decline in the patient, and their inevitable loss of the individual they have known, as they are replaced by a slow moving and thinking stranger who occupies their body.
There are short term drugs: anticholinesterase drugs such as Aricept or Exelone which can restore some memory and initiative and decrease anxiety. But these benefits tend to fade over 12 months. At the present time, despite billons of dollars spent on massive research programs, nothing has appeared to arrest or reverse this condition. And nothing will for a few years. This also means that occasional trials of unique interventions delivered by very caring relatives, describing very positive outcomes, are unlikely to be transferable or to move the general treatment world of dementia very far or be sustainable.
Not all is depressing. Many people with dementia are surprisingly happy with their lot and have a jolly disposition. Perhaps in some primitive way they see themselves getting away with outrageous things, they might long have wished to do. A pattern of exercise is very helpful to reduce the rate of decline into frailty and disability. At the same time people’s susceptibility to infection and physical decline can be accelerated if their nutrition is ignored, and they benefit from positively monitored dietary guidance. There are wide differences in the rate of decline as the disease plods its path rapidly in some, and slowly over some years in others. Faster decline is more common in those where the disease asserted itself at a younger age. Interaction with family and carers will assist the patient's mood, and to some extent their rate of decline.