Imagine you’re walking across an alien landscape where nothing is familiar. You spot no landmarks; see no recognizable faces—even the sounds you hear are completely foreign. Alone, confused and frustrated, you sink to the ground and stare at the confusing panorama, unsure of what to do next….
For a person diagnosed with Alzheimer’s disease, these feelings of chaos and confusion are frighteningly commonplace. With more than 400,000 Australians, and at least 44 million people worldwide currently living with some form of dementia, it’s important we are all aware of this global health epidemic.
Do You Know the Difference Between Dementia and Alzheimer’s?
Dementia is the overall term given to describe any condition that causes severe changes in the brain that result in memory loss and the brain no longer functioning properly.
Alzheimer’s is just one of these conditions; a disease that causes problems with memory, thinking and behaviour. Other forms of dementia include some you may have heard of like Parkinson’s and Huntington’s disease, and others you may not have like Frontotemporal, Creutzfeldt-Jakob, Wernicke-Korsakoff and others.
Harry – An Alzheimer Sufferer’s Perspective
Harry has lived with Alzheimer’s for 7 years. “I have no typical days. You have your good days, your bad days and your Alzheimer’s days,” he says. “I could wake up in the morning, get dressed, go into the kitchen—and then my world falls apart, I lose all concept of what I’m doing and what I’m supposed to be doing.”
He says he gets most frustrated when he is making a decision on something. Even if he has strong opinions about something, “if you give me choices, I get frustrated. Going to a restaurant and being faced with so many options, I get annoyed. Driving—because I get so confused—I don’t know which lane to be in, whether to go left, right or straight. If you take me shopping, I will go crazy because of all the voices, and the strange people all talking at the same time.”
He often says he becomes argumentative and exhibits bad judgement, “You can’t argue with me, I’m too headstrong. If I think it’s one way, you’re not going to convince me otherwise, and the only one who’s going to get frustrated is you. But I’m not being nasty—it’s just that this is my world. If someone is talking to me and I’m quiet or I don’t acknowledge them it’s because sometimes I’m so stressed out by this disease that I need a place to go in my mind to get away from Alzheimer’s. But you should always talk to us, because we’re still in there. You have to know that you’ve reached us, even if we don’t look at you or respond.”
He advises caregivers to, “learn what you can about this disease. Try and learn why we do the things we do. You have to learn to live in our world because we can’t live in yours—it doesn’t exist for us anymore.”
A diagnosis of Alzheimer’s is obviously life changing for the person with the disease, but often we forget how much it impacts their family and friends.
Vanessa – A Family Member’s Perspective
Vanessa’s mother was diagnosed with Alzheimer’s disease two years ago at the age of 60, and every aspect of her life has been affected by the diagnosis.
She had to retire earlier than she would have otherwise, some of her friends no longer visit and her communication has also been affected. She often has things she wants to tell the family because she still has interests and notices the things going on around her, but the words regularly escape her, leaving her scared, sad and frustrated.
Vanessa’s father has had to learn new skills that he has not needed previously, such as cooking. But at the same time he is aware that he needs to tread carefully and ensure he’s not taking tasks from his wife before she is ready to give them up, as this upsets her. One of the cruelest aspects of Alzheimer’s is that the person living with the condition is totally aware of the fact that they are losing their capacity to perform even the most menial tasks.
Vanessa’s mother has confided that her greatest fear is being in a care facility and being very aware, but without the ability to speak and express herself.
Although people with dementia may not be able to properly communicate, they often still understand a lot of what’s going on around them.
Vanessa says that her father, siblings, nephews, children and her have already lost a part of their precious mother and grandmother, and they remain heartbroken and scared about the future.
Her message to the community is this…if you meet someone you suspect has some form of dementia, PLEASE treat them with respect, kindness, patience, understanding and care.
Susan – A Carer’s Perspective
Susan, 58, moved her mum Rita in with her and her family five years ago when Rita started to get forgetful. Susan has now given up her job and is now a full time Carer.
Rita has now been with them for 5 years as she had become too confused and vulnerable to be left alone. At the time they thought she was just getting old – they knew nothing about dementia. The diagnosis of Alzheimer’s plus Vascular Dementia came a year or so later.
Rita’s dementia is now severe. She has very little short-term memory. Her behaviour is unpredictable and dis-inhibited but she is nevertheless extremely spirited. She is thrilled by both using and hearing really bad language. She is now incontinent and has reduced mobility. However, she does enjoy her food and, having regressed to being a young woman in the prime of life, she has an over-riding desire to find a mate and is not shy in going about it.
At around 7am each day something wonderful happens. Susan receives thirty minutes of help with Rita’s personal care. This has made a huge difference to them both.
The care workers are all kind and able to take the rough with the smooth in every changing second. Susan enjoys learning new tips and tricks from them too. Having this help changes her day immeasurably.
In caring for Rita in the family home, Susan finds she needs to be constantly problem-solving the physical practicalities of the moment, and forward thinking for whatever circumstances the future might throw at them.
When she’s mobile, Susan takes Rita to the local Memory Group for people with short term memory problems. Initially she was hesitant to go as in the past Rita has attended events for the elderly and Susan was asked not to bring her again as she just didn’t fit in due to her using constant bad language. Thankfully, this group is very inclusive and even though Rita can be volatile she is cherished and accepted. Susan finds it enjoyable to be able to go somewhere together and feel welcome.
Caring for someone with dementia can quickly lead to real isolation. The ability to have polite everyday conversations in the outside world starts to decline – especially when the language at home is so full of expletives. The loss of freedom can make one feel separated from society and venturing out on the spur of the moment cease altogether. Add to that the over-riding physical and emotional tiredness and a general loss of confidence can easily result.
But Susan says that, “Although there are times when it all feels pretty grim and I just yearn for some silence so I can think straight … the regular moments of light relief when Rita’s great spirit shines through ensure that I never stop being glad that she is with us.”
Dementia Awareness Month
September is Dementia Awareness month, a national awareness-raising campaign held annually. The aim of the campaign is to encourage all Australians to become more aware of dementia, gain a better understanding of what it is like to live with dementia and learn how we can support people living with dementia.
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