We must be open and honest about Alzheimer’s

Last February, Seth Rogen opened up about his own family battles with Alzheimer’s disease in front of a US Senate committee in Washington, and has received quite a following.

Last February, Seth Rogen opened up about his own family battles with Alzheimer’s disease in front of a US Senate committee in Washington, and has received quite a following. Maybe, just maybe, now the world is going to start facing this monstrous disease head on and without shame.

Rogen spoke out honestly and with poise about his mother in law Adele and how she was diagnosed with Alzheimer’s while only in her mid-50s. He mentioned the emotional and physical struggles of the disease as well as his former ignorance to what dementia really meant.

He admitted that he previously thought Alzheimer’s “was something only really, really old people got” and was a simple case of “forgetting your keys and mismatched shoes.” The heartbreaking reality of the disease is unfortunately so much harder than the familiar forgetfulness that is often comically associated with old age.

Cruel and frustrating

Alzheimer’s is a heartbreaking, frustrating and cruel disease. The stigma and embarrassment associated with having a family member that is so mentally ill they can no longer look after themselves is depressing and wrong.

Why should anyone be shut away because their brain has started to fail them? Many people will shy away from the subject and pretend that their ageing parents or grandparents are ‘just getting old,’ while they progressively forget who they are and everyone around them. Just 44 per cent of sufferers actually receive a diagnosis.

Being unable to recognise their loved ones is not only hard to deal with but can also be financially difficult. The cost of dementia to the UK alone is around £23 billion, and still some of the cost is hidden by family members who support their loved ones at home. The effects of dementia are devastating to everyone involved, including those suffering who are not in an oblivious dream-world, but a frustrating half-reality where nothing quite makes sense.

Tiny moments of clarity make up the day, paired with distressing confusion about their place or identity. For those looking after them, this is frustrating and upsetting to watch, particularly when the child has to become the parent.

Family experience

I am familiar with the effects of Alzheimer’s after watching it completely destroy my grandfather’s mind while I lived with my grandparents. I saw an affectionate, brilliant man turn into a complete stranger in a matter of years.

A gentle former Doctor and beloved grandfather became someone who was unrecognisable, and became agitated by everything around him. My earliest memories of my grandpa are filled with games of ‘consequences’ and his love of fruit jellies. He called me ‘Blossom’ and was never bothered by anything. Yet after a few years he was unable to recognise my grandma, let alone any of his eleven grandchildren.

I was too young to completely sympathise with what was happening, but not too young to remember it. We can all wish we had dealt with our elderly, ill grandparents differently when they were alive, but sadly turning back time is not a luxury that we possess. I am sad about what happened but I know that nothing I could have done would have changed the ferocity of the disease that took my grandfather away.

Instead of hiding from the problem, Alzheimer’s needs to be addressed and accepted, as it is not just going to disappear. According to the Alzheimer’s Society, there are 800,000 people suffering with dementia in the UK, and there will be over a million people with it by the year 2021. One in six people over the age of 80 have dementia, which increases to one in three over the age of 95.

The next chapter in finding a cure

Alzheimer’s is the most common disease associated with dementia (62 per cent of cases), which is where changes in the structure of the brain and a shortage of important chemicals mean that messages are no longer properly transmitted. This causes a build up of protein deposits in the brain. This makes it incredibly difficult for the victim to decipher what is happening and make sense of anything.

There is no cure. The prognosis for anyone with the disease is that it will get worse and worse. This is a terrifying prospect for anyone who knows a sufferer, but there is still hope. Thanks to ongoing research, there are advances being made.

There is a study at the moment where nanoparticles designed to act like lipoproteins have been shown to clear out the tangled protein deposits found in the brains of mice with a model of Alzheimer’s disease. Mice were given daily injections of the solution for four week, after which they found that the nanoparticle treatment reduced amyloid-β deposits (the protein that builds up in the brain) by 40 per cent in the cortex and 64 per cent in the hippocampus.

More research needs to be done, but this is an exciting advance towards curing Alzheimer’s. To anyone who knows somebody with this disease, don’t be ashamed. It’s easy to be in denial or get angry, but try to imagine what it’s like for your own brain to completely let you down.

Most importantly, remember that you’re not alone.  The more people that are honest and upfront about Alzheimer’s, the better we can make the world for those who suffer with it.

What do you think? Have your say in the comments section below.

Image: Garrondo / Wikimedia Commons