FLD: IT’S FAR WORSE THAN ALZHEIMER’S
Next time you pray for protection against Alzheimer’s, include a clause for protection against FLD – it’s a far worse condition.
FLD, or frontal lobe dementia, hits people in their 50s and 60s, just as they are about to retire and enjoy the rewards of a working life. It takes hold and insidiously changes their personalities, eventually making them unrecognisable to their families. ‘This is not the person I married’ is a common expression from bewildered spouses.
While Alzheimer’s tends to damage the back of the brain in advanced age, FLD damages the front of the brain in middle age. Over time it may cause the frontal lobes to shrink so much that at autopsy the brain looks like a Volkswagen Beetle.
FLD, also known as Pick’s disease, is more tragic than Alzheimer’s. At least Alzheimer’s leaves the personality intact. A sufferer is able to respond to physical touch and emotional cues until late in the disease. When a person with Alzheimer’s goes into a nursing home, their family usually feels some regret and guilt.
When an FLD sufferer goes into care, there is an overwhelming sense of relief. Family members have had all they can take and want no more.
In fact, it is as a result of a breakdown in family relationships that FLD sufferers often go into nursing homes much earlier than their disabilities require.
The frontal lobes of the brain are what make us successful as humans. They allow us to take on socially elaborate roles, to plan, to organise and to have both insight and foresight. They also have an executive function and coordinate basic cognitive functions such as memory and language.
When this executive function is defunct, the other functions are still intact but can’t be utilised appropriately. Atypical behaviour then develops. People with FLD may have perfectly good memories and reasoning abilities but become increasingly inefficient at using them. They may speak less and less and eventually become silent. Or they may say the same things over and over again or use the wrong words.
Sometimes they keep food in their mouth for a long time without swallowing. There is no mechanical difficulty swallowing, just a failure of their brain to initiate the appropriate action.
In the early stages of the disease, sufferers gradually lose interest in hobbies and appear unable to concentrate. Some become restless and begin to wander, while some neglect their hygiene.
At the same time, and much to the distress of the families, they become increasingly selfish and self-absorbed. Having lost the ability to empathise, they are without compassion. Their moods are flat, they have no insight and they certainly cannot appreciate what is happening to them.
In its early stages, this condition is difficult to diagnose because its traits can look like exaggerations of normal behaviour. Usually, the family is baffled. It looks like there is a relationship problem, a mid-life crisis or an inability to cope with retirement. If the disease hits early, the man’s children are teenagers and are left feeling utterly rejected: their father no longer seems to care about or even have an interest in them.
Although FLD usually begins between 50 and 65, it can start much earlier, and there are Australian cases of people getting it in their 30s. It has only been identified as a distinct condition for just over 10 years. Before that it was lumped together with other brain disorders under the general name of dementia.
FLD is progressive and, like Alzheimer’s, usually takes about 8 years from diagnosis to death. It is not fatal in itself, but death comes about as a result of debility. Many sufferers experience marked increases in appetite. This can take the form of eating everything available, including food from other people’s plates, to drinking alcohol with uncharacteristic enthusiasm. Not surprisingly, therefore, the condition can be misdiagnosed as late-onset alcoholism. One socially prominent man, who no longer took his wife to social engagements because she was such an embarrassment, was appalled to hear that she had been seen hanging around public bars.
Social disinhibition is a common feature of FLD. Some sufferers become shameless. One man spent his days trying to visit prostitutes. He made no effort to conceal this from his wife and had no idea it would upset her. But she controlled the purse strings and he had no money. If she left the telephone unlocked, he would call sex lines. During the day he would look up addresses of brothels in the paper and then roam vast distances across Sydney in search of them. He would present himself, ask for sex, say he had no money and be turned away. That was his entire routine. It showed he was capable of taking public transport and organising himself to cover great distances with an intention in mind.
Another common feature is compulsive behaviour. Sufferers have been known to roam the same path around the neighbourhood, knocking on the same doors and asking to visit. They are unable to provide social interaction but keep roaming and knocking.
Most families ask if there is a genetic risk. The answer is that, while the disease appears to run in families, it can also afflict people with no family history of the condition.
Sometimes men with FLD who behave in a selfish or awkward way give the impression that they are being deliberately wilful. As sufferers often look very well, it is difficult to curb expectations of normal behaviour, but it makes it a little easier for families to bear when they realise that sufferers are not responsible for their awkward behaviour.
Medicine can do nothing for such men, but it can guide and assist their carers. It helps partners to understand that it’s not their relationship that is falling apart but the person with FLD and that he doesn’t know what is happening to him. This knowledge makes it possible for partners to forgive.
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