When it comes to categorising and understanding dementia, there is an air of uncertainty that can inhibit the uniform approach to treatment that can be taken with other ailments or forms of disease.
Dementia itself is not actually a disease, but rather a collection of varying symptoms that are caused by disorders of the brain, and it is very much an individual journey for everyone living with it and affected by it.
For an individual, being diagnosed with any form of dementia can often be a confirmation that can help to provide an explanation for any number of cognitive or physical difficulty that they may have been dealing with, and often, with this confirmation, comes the harsh reality that there is a real issue and the prospect that things may only begin to get worse.
While dementia research is slowly beginning to lift the lid on a variety of innovative new techniques to improve the quality of life for those living with dementia, there is an increasing number of people who are choosing to end their lives because of dementia, rather than face the prospect of living with it.
Euthanasia has always been a hotly debated topic, with many questioning the ethics surrounding the process of voluntary dying.
On one hand, people argue that the prospect of life is too valuable to prematurely end, while others believe every individual should have the opportunity to control their own destiny which is often referred to as dying with dignity.
Euthanasia is currently legal in Canada, Luxembourg, Colombia, and the Netherlands, while assisted dying is legal in Switzerland, Germany, the Netherlands, and in a handful of US states.
Assisted dying will also become legal in the Australian state of Victoria by mid-2019.
The difference between euthanasia and assisted dying is basically the level of involvement from medical professionals.
Assisted dying entails making lethal means available to a patient that can be used at a time of their choosing, but voluntary active euthanasia entails the medical professional carrying out the request which is usually done through an intravenous delivery of a lethal substance.
Annie Zwijnenberg was a proud single mother who had lived a life of adventure but chose to be euthanized at the age of 81 after being diagnosed with dementia by a neurologist.
Annie’s journey became the basis of a documentary called ‘Before It’s Too Late,’ by director, Gerald van Bronkhorst, detailing Annie’s unwillingness to compromise her lifestyle for the sake of her actual life.
“I used to go climbing or skiing or whatever,” said Annie in the film. “In the village, they said, ‘That Annie, she’s always on the go.’ I’d put my rucksack on in the morning and start hiking. I’d walk all day. Now I can’t do anything. I get confused all the time.”
Annie also talked about the frustration that came with being unable to communicate effectively and how these complications made her want to stop trying to communicate altogether.
Cameras followed Annie and her adult children as they digested the weight of her decision through to the touching final moments of her life at the family home.
The doctor involved in the process of Annie’s death is extremely vigilant in his obligation to make sure that Annie understands the finality of her decision, asking her several times if she knows what she is doing and articulating how the process will play out.
“You’re sure you want to drink the mixture I’ll give you? You know it will put you to sleep and you won’t wake up again?” said the doctor.
Annie’s drinking of the mixture was followed by an extremely emotional final hug from family members as she drifted off to sleep, but the somber and humble finality of the moment was broken by a hint of humour as hours after the initial drinking of the lethal liquid, Annie began snoring loudly.
Until finally, fearing Annie would eventually wake up, doctors decided to administer a lethal injection that caused her life to end within a minute.
While euthanasia and assisted dying are still debated topics in the Netherlands, the concept itself is nowhere near as taboo as it is in many other countries and the number of people choosing to die via these methods has increased from 1,882 people in 2002, through to 6,585 people in 2017.
In 2009, only 12 people who were diagnosed with dementia in the Netherlands chose to end their life via euthanasia, but that number significantly increased to over 14x that amount in 2017, with 169 dutch people opting for death.
While Annie’s case might almost seem like the ideal way that one would hope that the euthanasia scenario would play out, there are still many in the Netherlands that oppose euthanasia and assisted dying, and a lot of the reluctance stems from issues that arise with consent and dementia.
Colin McDonnell is a Dementia Excellence Practica Lead at Scalabrini Aged Care & Residential Villages and has won multiple awards in the best aged-care-practice and mental health space.
Colin spoke with HelloCare and highlighted a number of issues that are faced when contemplating the idea of allowing Australians living with dementia the option of assisted dying when taking into consideration the emotions and cognitive abilities with those who may be in that position.
“I’m not against people having the right to die with dignity, I’m certainly for that,” said Colin.
“Many of the people that I have spoken to told me the first thing that happened once they were diagnosed (with dementia) was that they got depressed, and they thought about things like suicide because they have these preconceived ideas about what their life is going to be like, but then they change their mind and make new contacts and get some support, and they realise that they can live a great life for many years.”
Taking into account the number of variables with dementia makes legislating appropriate guidelines and rules for euthanasia extremely difficult. While few people would object to the notion of someone being able to make a choice about their own life, the cognitive issues that can be involved with dementia can make the issue of consent extremely tricky.
Knowing whether someone has the cognitive ability to actually make a decision of this magnitude is not an exact science, and the ramifications of error would be catastrophic, yet many still believe that people living with dementia should still have the right to exercise this option if they choose to.
“There’s lots of times that even people living with end-stage dementia can live a really meaningful life, so there’s no right or wrong, there are no patterns, dementia affects individuals differently; Life history, experiences, and personality can all play a part,” said Colin.
“I don’t know when you can actually make that decision regarding – when you’ve had enough, and do you have the capacity at that stage to make that kind of decision? People could have the option to be euthanised, but I just don’t know how you could even set up legislation around that.”
When asked about the prospects of Australians living with dementia opting for euthanasia,
Colin feels that the majority of people that he encounters would not be interested in voluntary dying.
“When I speak to people living with dementia who are able to communicate, they don’t want to do that because they have a life, they still have families and can still interact and receive love, so I don’t know how it’s possible to make that decision and ensure that the timing was right.”
We urge anyone dealing with depression or thoughts of ending their own life to contact: Beyond Blue 1300 22 4636 or Lifeline Australia 13 11 14
Hi Jakob would love to talk to you,I am the dementia friendly project officer here in Kiama NSW.
Regards
Michael Preston
Hi My name is Shirley Garbett I live in England 2 years ago I lost my husband to dementia and my self and my family went through hell ,then I spoke to my family that if ever I got it I would look into euthanasia now I just had results of ct head skan that showed small vessel cerebrovascular disease which can lead to vascular dementia would I be able to put in place euthanasia now and how would I start ,Many thanks Shirley Garbett
I’m
Heading head long into dementia. Mum and her 4 sisters were the same. I’m 60, j in Jane cognitive decline. I refuse to end up like my Mum , Aunties and Uncles.
I’ve been an RN for 43 years- I am still working. I’d rather check out early. There is nothing worse than seeing someone become vulnerable distressed and infantilised