News that Cardiff University researchers have uncovered five new genes linked to Alzheimer’s disease will be welcomed by hundreds of thousands of people across Britain.
The discovery, made by Professor Julie Williams and her team, doubles the number of identified genes linked to Alzheimer’s to 10.
It could help scientists better understand what causes the condition and increase the chances of developing an effective treatment. Alzheimer’s Research UK has called it “a step towards defeating dementia”.
As close relatives of an Alzheimer’s sufferer, my family and I are among those heartened by the findings.
Alzheimer’s disease is the most common cause of dementia, affecting almost half a million people in the UK. It is rarely thought of as a terminal illness, although it is exactly that.
Dementia affects one in 14 people over the age of 65 and one in six over the age of 80. However, Alzheimer’s is not restricted to the elderly. There are over 16,000 people under the age of 65 with dementia in the UK – and experts believe this to be an underestimate.
Symptoms of Alzheimer’s vary – just as each person is unique, so too are the ways in which they are affected. Common symptoms include mood swings, confusion and memory loss; at its most advanced it can render patients bedridden, unable to speak or perform even the most basic tasks.
Our relative currently lives independently, albeit with support and adjustments to her home and routine. Since her diagnosis, we have had both the privilege and misfortune of better understanding this complex condition.
It is undoubtedly one of the cruellest in existence, gradually stripping people of their memories, faculties, personalities, and often – despite a valiant battle to the contrary – their dignity. Alzheimer’s – and the tears, anger, upheaval and frustration it brings with it – can be devastating, not only for the sufferer, but for those closest to him or her.
In our experience, there are ‘good’ days and ‘bad’ days with a condition such as Alzheimer’s. On a bad day, food will be left untouched; the person will be sullen and uncooperative and you might find yourself on the receiving end of the same diatribe for hours.
Yet on a good day, generous meals are consumed, conversation is rich and varied, and laughter is plentiful. Every small task completed is a great achievement; every memory retained a triumph. These are the sunny spells that encourage you to persevere through the downpours.
In some ways, it is difficult not to marvel at Alzheimer’s and its effects. For example, we thought we’d heard every memory and tale associated with this particular relative over the years, but suddenly we’re privy to dozens of colourful, previously unheard anecdotes. Their fine detail leaves us in no doubt that they’re not dreamed up, as initially suspected. Rather, these memories – some as old as 80 years – are simply being unearthed, like tiny pebbles, through some quirk of the condition.
Some regress to a former time in their lives, which can be as heartbreaking as it is fascinating. Others might forget who they are and fail to recognise their loved ones – but when someone begins a rendition of a wartime song, they are able to chime in with perfect synchronicity despite not singing it for some 60 years. It is truly a curious condition.
Over time, my family and I have garnered the essential qualities for dealing with Alzheimer’s – not least the ability to tune out slightly as the person recounts for the umpteenth time the story about their next-door-neighbour’s dog. While Alzheimer’s patients believe they’re telling you something new, it might be the tenth time you have heard it in as many minutes – and you develop coping strategies accordingly.
People with Alzheimer’s can also lose all sense of reason and tact – assuming they had any to begin with. When encouraging them to complete a simple task, such as bathing, you’re being domineering; if you purchase basic supplies for them you’re ruthlessly spending their money, and you never bother visiting any more (you’ve been four times this week alone). By the way, you’ve gained weight, your hair looks awful and your clothes don’t suit you. Hurt and bewildered, it is all you can do not to snap back – and occasionally you do. You’re only human.
These criticisms can be especially difficult to deal with for the person or people who keep life ticking over for the sufferer. Think of the minutiae of your everyday life – cleaning, cooking, shopping, laundry, finances and appointments. Now imagine handling all of these not only for your own household, but also for another. It is, by all accounts, a relentless – and often thankless – task.
However, one of the biggest surprises of Alzheimer’s is the poignant humour to which it occasionally lends itself. Last Christmas, my relative – who usually indulges in one sweet sherry at most – ‘forgot’ she rarely drinks alcohol and subsequently had a very merry Christmas indeed. More recently, at a family meal, she ordered beef, praised the tenderness of the ‘lamb’, then said how pleased she was that she’d ordered chicken. It was impossible not to smile, and – when we informed her why – she laughed longer and louder than anyone at the table. It’s vital to find the golden threads of humour in an otherwise fairly bleak tapestry.
As I pointed out earlier, many people with Alzheimer’s – including my own relative – are able to live independent lives for a significant amount of time after diagnosis. It is important to recognise that although the support of family, friends and the health service can be invaluable, this continuing independence is also largely due to the person’s own tenacity and determination. So often perceived as a weakness, Alzheimer’s in fact demonstrates exemplary strength and perseverance.
Alzheimer’s disease can rob a person of many things, but together we’ve discovered those it cannot take away – patience, teamwork, humour, and, above all, love. Still, it is a condition we could all do without, which is why this breakthrough will bring renewed hope to thousands of people across Britain that a cure might one day be found.
See more – ITV West Country’s four-part series on dementia: