Advance Care Directive – Planning for the future.

In Australia, and probably within many other countries, every competent adult has the legal right to accept or decline any medical treatment.

However, if you are unable to communicate your wishes or have lost the mental capacity to make your own decisions, what then?

This is when an Advance Care Directive comes in to support you.

In this article I will briefly discuss Advance Care Directive – What is it and why is it important?

Many people believe that if they have a ‘Last Will and Testament’ in place this will cover their medical wishes…. But this is wrong. A will is a document that records your wishes regarding the distribution of your property and the care of any minor children, and only comes into effect after you have died.

Furthermore, many people believe that if they have an ‘Enduring Power of Attorney’ appointed, once more their medical wishes will be observed… but again this is wrong. An Enduring Power of Attorney only authorises someone to make financial decisions for you when you’re not able to for yourself.

An Advance Care Directive is a simple document that records your wishes regarding your current and future health care, and is greatly influenced by your values, beliefs and what you cherish in life.

This document records the medical treatments you want to have, and most importantly which medical treatments that you do not want to have, and only comes into effect if you are incapacitated and unable to communicate your wishes or have lost the mental capacity to make your own decisions.

What is Mental Capacity?

To have mental capacity means being able to make decisions for ourselves. This is a legal term and each  Australian state and/or Territory offers a variation to the definition of having mental capacity. However,  broadly speaking when a person has mental capacity they can do all of the following:

• Comprehend information given to them

• Be able to weigh up the information available to make a decision

• Understand the consequences of their decision

• Retain that information long enough to be able to make a decision

• Communicate their decision to others

 What is Mental Incapacity?

Having a mental incapacity means not being able to make some decisions even after the necessary information, advice and support has been given, and mental incapacity may be temporary or ongoing. Capacity to make a particular decision will be in doubt if a person:

• Does not understand the information given or

• Unable to consider the main issues, options and likely consequences involved in making that decision or

• Does not remember relevant information long enough to be able to make a decision or

• Cannot communicate their decision to others

Under Australian law, every adult is presumed to have mental capacity and this is probably similar within many other countries. However, mental capacity is compromised when a person is unconscious or has a severe cognitive disability, such as dementia. If a person doesn't have mental capacity, someone called a 'substitute decision-maker' might need to make the decision for them, and an Advance Care Directive would have your healthcare wishes recorded to direct this person to act accordingly to your wishes.

As with a Last Will and Testament, if you do not have an Advance Care Directive in place when it is needed your wishes are unknown and medical professionals may use aggressive and invasive medical treatments that you may not want.

Although Advance Care Directives may be different between Australian states and/or territories, recording your preferences and future medical care wishes in an Advance Care Directive is simple.  

An organisation called ‘Advance Care Planning Australia’ have government approved FREE kits for each state and/or territory. Links to these are below and are correct as of June 2022.

New South Wales

Victoria

Queensland

Tasmania

South Australia

Western Australia

Northern Territory

Australian Capital Territory

Legal professionals are required when creating both your Last Will and Testament and when appointing an Enduring Power of Attorney, however no lawyers are necessary with an Advance Care Directive, and this is a valid legal document and health professionals and family members must follow a valid directive. They cannot override it. However, you will need to nominate a substitute decision-maker who can speak on your behalf, and different Australian states and/or territories may have different titles for a substitute decision-maker,  but they all have the same function.

Selecting a substitute decision-maker.

Choosing who will be your substitute decision-maker is very, very important. Think carefully about who this person will be because they will be making decisions for you, and following your instructions if you no longer have decision-making capacity. To formalise your pick of a substitute decision-maker, you simply complete the relevant form corresponding to your state/territory.

This substitute decision maker should be a person-

• you trust

• who is over 18 years

• who will listen to and understand your preferences and values for future care

• who will be comfortable making decisions in difficult situations.

Most importantly ask yourself the question: ‘Am I confident this person will make decisions based on what I would want?’ You can also choose a second person to be an alternate decision-maker and they will step in if your first decision-maker is unable to make decisions on your behalf.

Get your doctor involved

Gather advice and information regarding your current health situation from your doctor and also discuss what may happen in the future and potential changes if there are any specific areas of concern. It would be appropriate to discuss with your doctor your Advance Care Directive.

Once your Advance Care Directive is completed, you need to sign and date it, and your substitute decision-maker and your doctor can also sign it.

Finally, give copies of your directive to:

• your family

• your substitute decision-maker

• your doctor

• anyone else who you feel is appropriate

More information about Advance Care Directives is available from a short video on my YouTube channel ‘Ask a Dementia Champion’.

In summary

Your decision about which of these tools will help best when your are planning ahead will greatly depends on your stage of life and/or your specific circumstances, and it is hard to argue against the merits of each tool. However, where both a Last Will and Testament and an Enduring Power of Attorney are well known about, an Advance Care Directive is lesser known, but still very important to have in place. By documenting and communicating your wishes and intentions you can have peace of mind and reduce family stress, conflict, uncertainty or potential disputes with how your affairs, wishes and preferences are managed.

In short all three are legal documents with specific goals and outcomes.

·       An Advance Care Directive records a person’s  instructions, wishes and preferences for future health care, and appoints one or more substitute decision makers who are people selected to made decisions on their behalf in any period of impaired decision making capacity, or as determined by the individual creating the directive.

·       An  Enduring Power of Attorney is used for appointing an attorney (substitute decision maker) to make financial decisions on your behalf.

·       A Last Will and Testament appoints an executor and directs your estate to be distributed according to your wishes after your death.

It may be confronting to record your preferences and medical care wishes but it makes sense to plan for tomorrow so you can live for today.

Tim England – Dementia Champion

(B.Dem.Care; M.Dem)

Disclosure - Not Medical and/or Legal Advice: Information in this article is for general informational and educational purposes only and is not meant to be a substitute for the advice provided by a Medical and/or Legal Practitioner.

 

I forget stuff… therefore I have dementia… Right…???

Over the years I've hosted hundreds of dementia education events in the community to thousands of people. I’ve also been interviewed by TV, radio and newspaper journalists, and I’m also a newspaper columnist. One of the most common questions I’m always asked is….  “Do I have dementia?”

Well, lets discuss just that.

Generally speaking, when I'm about 10 minutes into one of my presentations, I start to see some expressions on some of the faces of the audience and I know what they're thinking.

They're thinking “have I got dementia?”

Well, I guess it’s quite a natural question to have especially if you're at one of my presentations, I'm sure some of you have been thinking have “I got dementia?” or “am I developing dementia?”.

So let's discuss this a little bit more.

Okay, so you think you may have dementia. Why? Because you forget things? You forgot where you left your car keys? You forget the names of some neighbours down the street that you don't see very often?  Or you forget have you seen that movie before? Have you ever walked into a room one day and thought  – “what am I doing in here?” and “why did I come in here?”. You can’t remember why you are there. Then you walk out of the room and then you suddenly remember why you went into the room in the first place.

Guess what? All of that is normal. It’s not dementia, you are just simply forgetting things.

Lost my car keys… found them in my shoe.

Why do you misplace your car keys? I regularly misplace my car keys at home. It's not uncommon for me to go looking around because I usually put them in one place, but sometimes I put them somewhere else, depending upon what I'm thinking about at the time.

In fact the other week I couldn't find them. I was searching for them around our home and my wife found them in a shoe. What where my car keys doing in a shoe? Very good question. Well it’s easy to explain, and no I don’t have dementia.

One day I was working in our garden. While I left the main part of the house via the garage to the garden I changed from my house shoes into some wellington boots. I took my car keys with me just in case I needed to move my car. As I didn’t have any pockets in my clothes to store the keys, I placed them inside one of my house shoes for safe keeping.

Hours later, I returned to the garage, removed the boots but didn’t put on the house shoes because I was going to shower after gardening activities. I simply carried my house shoes and put them back into the wardrobe, with the keys still in them, which I had completely forgotten about. Here they remained until my wife found them 4 days later after days of frantic searching.

I'm constantly not remembering the names of people that I don't see that often. I remember their faces but their names just escape me, that's why I call a lot of people “MATE”.

I just don't always remember their names. That's normal. It's okay. It's normal for you to forget things. You think about a lot of stuff every day. Some of you live busy, stressful lives. We've got a lot going on in our lives. You are collecting many memories and thoughts all day and your brain, which is  like a big filing cabinet, it gets pretty full and congested some days. Sometimes it just takes you a little bit longer to remember. That’s all normal.

Normal ageing, MCI and dementia.

Unfortunately as we age we do have a natural amount of memory loss. Researchers know about this. Memory loss has long been accepted as a normal part of ageing. Like other parts of the human body that deteriorates over time, the brain loses some function as we age.

However, some individuals experience memory loss which is far greater than expected with ageing, without other signs of dementia. This is called Mild Cognitive Impairment (MCI) and it’s not dementia. MCI is defined as significant memory loss without the loss of other cognitive functions such as Planning/Problem solving, Social skills, Visuospatial and/or Motor skills. Many people with MCI don't progress to dementia, but they are at a higher risk of developing dementia.

Individuals with MCI generally experience more memory problems than would be expected from someone at a similar age. These individuals can still function independently and don’t display other signs of dementia, such as impaired judgement and/or reasoning. Individuals with MCI generally experience difficulty remembering names of people they have recently met and following the flow of conversations. However, they can usually complete all their daily tasks, but may compensate for any memory issues by using memory prompts such a post-it notes and/or calendars.

There is no specific treatment for MCI, however, Dementia Australia recommends Cognitive Training (exercising the mind/memory) as this could reduce the risk of dementia. Also it’s important to maintain a healthy diet, have regular physical exercise, and maintain good general health.

Possible indicators between normal ageing, MCI, and dementia.

There is a demarcation line between normal ageing, MCI and dementia, but it’s a fuzzy line, and how do we know when someone has crossed it? This involves completing a functional assessment by a professional on what is called ‘Activities of Daily Living’ or ADL’s. ADL’s include personal care activities, feeding oneself, driving a car, wearing appropriate clothes for the weather conditions.

It's very important to be able to distinguish between normal ageing, MCI and dementia, and that the "threshold” varies from person to person.

Years ago experts taught me a rule of thumb to assist in distinguishing the difference, specially between MCI and dementia. It's not a clinical tool, but it's a helpful indicator that people in the real world can use to understand the difference between MCI and dementia. I ask family carers this, “Can you leave the person with MCI alone for a weekend or a week while you went on a trip and would they function independently and get by in daily life? " If the answer is “No, I can’t do that,” it’s perhaps comfortable to say that the person they care for has probably crossed the threshold.

That's the difference. It's not that memory loss or forgetting things is the big issue. The greater issue is that has memory loss caused some distress or affecting someone's safety or well-being. That's the bigger question and that's the greater concern.

In summary

So you have a loved one who does forget a few things from time to time, and it's not dramatically affecting their life and their safety and that of others. It could be just part of their natural aging process of losing a little bit of memory. However, if it is affecting their health, their safety, their well-being and that of others, well that’s a lot more serious and that definitely needs to be investigated. So, just because you forget a few things now and again does not mean that you're getting dementia, or you've got dementia. You're human and it’s part of the human condition as we age. You’ve just simply forget stuff like I do and pretty much everyone else does.

Tim England – Dementia Champion

(M.Dem; B.Dem.Care )

Disclosure - Not Clinical Advice: Information in this article is for general informational and educational purposes only and is not meant to be a substitute for the advice provided by a Medical Practitioner.

What is dementia... "It is not a normal or natural part of ageing"

The most common question I’m asked in interviews, during public speaking events, education workshops I host, and on-line is – “What is dementia”. That's a very good question which I always address in uncomplicated terms. .

 We will actively explore ‘What is dementia’, and this will be examined from two different perspectives.

 One is what is dementia, and equally and very importantly –“What dementia isn't”.

 Here’s what we will be looking at.

•  What is Dementia ?

• Is Dementia a disease or not ?

• More than Memory Loss

• Diagnosing Dementia

• What else is Dementia ?

• Dementia statistics in Australia

• Preventing Dementia

• It may not be Dementia

 What is dementia?

 Dementia is complicated. Dementia is not one thing. Dementia is an umbrella term that describes a collection of signs and symptoms that affects a person's ability to function well on a cognitive level.

 This means their ability to reason, to think, to organise and it can actually have a quite heavy effect on their ability to accomplish day-to-day activities.

 Is Dementia a disease or not?

Dementia is a condition and not a disease. That needs to be stressed. Dementia is caused by disease and/or injury. A lot of people hear the word Alzheimer's and believe that Alzheimer's and dementia are the same thing. Indeed, they are related, but are different. Alzheimer’s is a disease that causes a dementia condition.

 Alzheimer's disease is not the only disease that causes a dementia. In fact research suggests that there's over a hundred different individual diseases that will cause a dementia condition.

In Australia there are four common dementias. Although the symptoms of dementia may vary between individuals, some symptoms are characteristic of specific types of dementia as follows:

 Alzheimer’s Disease. Symptoms may include:

• Gradual changes over months/years

• Declined ability to form new memories

• Confusion

• Problems finding words

• Personality changes

 Vascular Dementia. Symptoms may include:

• Sudden changes

• Insight/judgement/behaviour ‘not-the-same’

• May bounce back and have good/bad days

• Shifts in emotion and energy

 Frontal-Temporal Dementias. Symptoms may include:

• Significant Personality/Behavioural Changes

• Impaired Planning/Judgement/Speech Production

• Loss in understanding language

• Loss of Empathy

 Lewy Body Dementias. Symptoms may include:

•  Loss of Attention

• Problems with movement

• Fine motor skills problems - hands/swallowing

• Visual Hallucinations/Nightmares/Sleep disorders

• Episodes of rigidity and fainting

More than Memory Loss

Dementia is not just simply memory loss. Yes, memory loss is a sign or symptom of Alzheimer's disease and some other causes of dementia. However, some individuals can have dementia without noticeable memory loss.

There are a number of physical manifestations of the dementia condition that most people don't even consider and/or recognise. Dementia can affect our gait, our digestive systems, sleep patterns, ability to use our hands properly, the ability to coordinate our actions and ability to drive. It's important that these are recognised and understood, and this will be a subject of a future article.

Diagnosing Dementia

 It is really difficult to diagnose a dementia in a living person. Confirmation of dementia occurs during a post mortem examination of the brain and brain tissue under a microscope. There's no definitive test in a living person. There's no blood test, no brain scan and/or x-ray. A probable diagnosis occurs with the assistance of a number of screening tests. However, more details surrounding a dementia diagnosis will be discussed in a later article. 

What else is Dementia?

Well it affects the brain and only the brain. It impairs cognitive function. That is, our ability to think, to reason, to rationalise.

Dementia is progressive in nature. That means it starts off very slowly and very subtly, and it’s hard to pick up. Over a period of time, such as months and years, the signs become more pronounced.

 It is not a normal part or natural part of aging. I want to stress that.

 Age is a risk factor, but age is not a cause. Indeed the chances of developing a dementia does increase dramatically over the age of 65. That is a proven fact, but surprisingly to a lot of people just because you're under the age of 65 doesn't mean you can't develop this condition.

 There are well known cases of people in their 60s, 50s, 40s even in their 30s and 20s who have developed a condition of dementia. There is also a thing known as Childhood Dementia. These cases are rare but they are there.

 Currently there is no cure and dementia impacts thousands of families, and the tentacles of this insidious condition spreads throughout the community.

 

Dementia statistics in Australia

 Currently in Australia in 2022 there are:

•  about 472,000 individuals with a level of dementia

• there is 1 new diagnoses every 6 minutes, that’s 240-250 individuals per day

• It’s the 2nd leading cause of death

• It’s the leading cause of death of Australian women

• Up to 70% of people with dementia still live in their own homes

 Furthermore, no one is immune. Dementia doesn't care about your ethnic background, or what your age is, and doesn't care about your education. Anyone can develop dementia at some stage in their life.

 Preventing Dementia

Can dementia be prevented? Well, that's a very good question and there's been a lot of research over the decades on that very subject. The encouraging news is that there is solid evidence that strongly suggests that there are things that an individual can do to dramatically reduce their chances of developing this condition.

You can't guarantee that you won't develop dementia, but there are things that you can actively do to reduce your risk of developing dementia. Brilliant researchers like Professor Gill Livingston, have investigated the potential modifiable risks in dementia, and concluded that it is never too late to try to reduce your risk of dementia.

Individuals can learn more about how they can reduce their risk of developing dementia. The University of Tasmania via the Wicking Dementia Research and Education Centre, offers a university-quality education about dementia risk, protection and prevention measures. Called “Preventing Dementia MOOC”,  this free on-line and exam-free course, provides individuals an opportunity to learn from dementia experts on the modifiable risk factors of developing a dementia.  

It may not be Dementia

 As mentioned before, dementia is complicated and it is not easy to diagnose. Although displays of confusion is a possible sign/symptom of a dementia, confusion isn't always dementia. There can be other causes of a confusion. We call these the three D’s of confusion.

 These being Delirium, Depression and Dementia.

Let’s explore this for a quick moment. Many people haven't heard of delirium, many have heard of depression, and a lot of heard of dementia. But what is the difference?

Although Delirium can have similar symptoms to dementia, it is very different. Delirium is a neuropsychiatric condition that develops rapidly, usually within hours/days. Symptoms may include poor levels of attention/concentration, confusion, and changes in personality. It is usually temporary and reversible. Often it is caused by side effects to medication, fluctuating blood sugar levels, urinary tract infections, poor nutrition, dehydration, poor sleep and/or severe pain. However, once the underlying issue has been addressed, the person often returns back to their normal self.

Depression is much more than a low mood. It is a medical illness that can develop slowly or rapidly, and is a serious condition that affects a person’s physical and mental health. Symptoms may include disturbed sleep or appetite, low energy, and poor concentration. Major changes in a person’s life can cause depression including death of a loved one, loss of independence, and developing dementia or another illness.

Both Delirium and Depression can cause changes and can be often mistaken for Dementia. It is imperative that any behavioural changes be thoroughly investigated to identify the underlying cause so that the correct treatment can be prescribed.

 In summary

We have briefly examine what is dementia and more importantly what dementia is not. Hopefully you have a greater understanding about dementia and realise that dementia is more than just memory loss. However there is much, much more to discover about dementia, such as what is Mild Cognitive Impairment (MCI). This will be discussed in a future article.

 Tim England – Dementia Champion

(M.Dem; B.Dem.Care )

 Disclosure - Not Medical Advice: Information in this article is for general informational and educational purposes only and is not meant to be a substitute for the advice provided by a Medical Practitioner.