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Opening up about dementia

Dementia is something that affects so many of us – in fact, research shows that two out of three Kiwis will be affected by dementia in their lifetimes.

And yet, so often, we’re afraid to talk about it. People in the early stages of dementia don’t want to tell others that they have it, and people whose partners or parents are showing signs of dementia may remain in denial about it for some time. Dementia can be so isolating – not least because it’s rare to hear much about it!

Why don’t we talk about it?

Dementia, much like many illnesses, is something people have typically been uncomfortable to talk about. To acknowledge dementia is to acknowledge that the brain isn’t quite functioning the way it should, which is a scary thought for many.

Thankfully, in recent times, it’s become much more socially acceptable to talk about illness that affects our brains, especially with the help of some fairly prominent celebrities spearheading the movement (Sir John Kirwan has done wonders for depression, for example). We’re beginning to realise that the only way to help manage illness like dementia is through talking about it and taking away the taboo.

So why can’t we do the same with dementia?

A dementia diagnosis can be hard to accept. People are willing to acknowledge that their physical body slowly deteriorates with age or injury, but they can be afraid to accept that sometimes their mental state can also diminish. This is completely understandable, given how highly we all value intelligence and mental fortitude, and we would hate to think that our future is going to be in any way compromised due to our decreasing mental control. Delaying a dementia diagnosis, however, is actually the fastest way of compromising your future, as it minimises the support you could receive from those around you.

Even when a diagnosis is made, people may try to prevent others from seeing what they’re experiencing. In many cases, someone with dementia may continue about their everyday life just like normal and simply refrain from revealing their diagnosis to those around them. However, this can limit people’s understanding as to your situation and why you may be coming up against certain challenges.

Some people may even choose to avoid interacting with people they once saw regularly altogether, worried they may be embarrassed by the symptoms of their dementia. This can result in decreased social interaction and real loneliness – making the person with dementia feel even more isolated.

Why should we be talking?

The good news is that sharing your dementia diagnosis can actually help. Not only will it enable people around you to be more understanding, it will also enable you to maintain meaningful social interactions (which are really great for your brain) and ensure that you’ve got supportive people around you.

Not only that, but by getting diagnosed, you can get access to free support services that can help you not only slow the progression of dementia, but also learn how to make the most of every moment and live well with dementia.

At the end of the day, dementia is nothing to be ashamed of. The negative side effects of dementia, such as forgetfulness, are not exhibited intentionally. Not being able to remember a person’s name due to dementia should cause no more embarrassment than not being able to climb some stairs due to a broken leg. While people may worry how their symptoms will affect their social interactions, nothing will impact them more than shying away from their diagnosis.

The solution – let’s take the stigma away!

Dementia should not stop someone from living a fulfilling and satisfying life. Accepting a dementia diagnosis and revealing to others that you have dementia opens the door to a world of support that you won’t have if you withhold what you are going through.

We believe anyone with dementia symptoms has a right to be assisted, on their own terms, to live well and with as much independence as possible. We recognise that living well at home is what most people prefer.

We are making a stand to encourage the de-stigmatisation of dementia, helping to lift the shame and stigma so that people can talk more freely about this common disease and the ways it can be managed. Will you be part of breaking down this stigma? Talk to your loved ones about dementia – share stories with your friends and recognise just how many people are affected. That’s how we’ll start to recognise that dementia is something that affects all of us.

About Dementia Auckland

Dementia Auckland
Dementia Auckland is a not for profit organisation dedicated to providing dementia support services and inspiring those living with dementia to make the most of life. Dementia Auckland provides a wide range of services and support across the greater Auckland region. Dementia Key Workers offer intensive support and practical strategies for the carer of a person with dementia, including home visiting, telephone consultations, and support groups. Visit www.dementiaauckland.org.nz for more info.

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