When finding inspiration for this newsletter, I often take time to reflect on common themes from recent client interactions. Whilst there’s lots of talk about aged care reforms and changes to services, I’ve touched on this in a previous newsletter. The conversation I’ve found myself having more and more regularly is making decisions for loved ones living with dementia or other illnesses that impact their decision making.
For this reason, the theme I’ve chosen for February is
Dementia and Decision Making.
WHAT IS DEMENTIA?
Dementia is the umbrella term for several neurological conditions with which the major symptom is global decline in brain function. The three most prominent forms of dementia are:
Alzheimers - makes up 70% of all dementia cases and is defined by the shrinkage of brain tissue and gradual cognitive decline
Vascular - caused by a health episode with loss of blood flow to the brain e.g. stroke
Lewy Body - commonly recognised by hallucinations, delusions and mood swings
In 2024, there are an estimated 421,000 Australians living with dementia. Without any major medical breakthrough, this number is expected to increase to more than 812,500 by 2054.
Some of the early warning signs of dementia are memory loss, trouble completing familiar tasks, confusion about time & place, problems with language, problems with abstract thinking, trouble with distance & location, misplacing things, changes in personality or behaviour and a loss of initiative. I could do an entire newsletter on spotting these signs, but I’ll link you to the Dementia Australia site which has a wealth of resources on this topic so that we can focus on decision making.
Other illnesses that can impact decision making are bipolar, schizophrenia, borderline personality disorder and depression.
SO WHAT DOES DECISION MAKING CAPACITY ACTUALLY MEAN?
When I talk about ‘decision making capacity’, I’m referring to the definition provided in the Guardian and Administration Act 2000 and Powers of Attorney Act 1998, which define capacity as the ability to:
Understand the nature and effect of decisions about a matter – understanding possible choices, consequences and outcomes of their decisions.
Freely and voluntarily make decisions about the matter – not easily
influenced by others to make decisions.
Communicate the decisions in some way – not just verbal, but can be communicated via writing, storyboards or signals. Capacity is only lacking if the adult cannot communicate at all.
It is possible for people to have decision making capacity in some areas and not others e.g. someone may be able to decide what to buy for dinner and how much to eat, but unable to consent to medical treatment.
WHY DOES IT MATTER?
If the individual is making sound decision that keep them safe and don’t negatively impact others, then it may be fine for them to continue alone. However, for many individuals with impaired decision making capacity they may need assistance making decisions in some or all aspects of their life e.g. consenting to medical treatments, moving into residential care, paying bills on time etc.
I THINK MY LOVED ONE MIGHT NOT HAVE CAPACITY…
If you’re unsure about a loved one’s capacity, it can be assessed by a health professional like a GP, geriatrician, neuropsychologist or psychiatrist. Where the is a dispute about capacity e.g. the individual themselves doesn’t believe they have any issues or another family member, the Civil and Administrative Tribunal in your state can formally determine whether the individual has decision making capacity. In South Australia this is SACAT, in Queensland in QCAT, in Victoria it’s VCAT etc.
Some of the families I work with have attended SACAT and have a formal guardian appointed to make decisions for their loved one. For others, their loved one might still be receptive to family input and not require a formal decision maker. In both situations, I find the most challenging and important aspect is how we have these discussions with the individual.
HOW DO I HAVE THIS CONVERSATION WITH THEM?
With all sensitive topics, I think the following principals apply:
Honest, respectful conversation
Providing choice wherever possible
Debrief with others
HONEST, RESPECTFUL CONVERSATION
You might read this and think ‘duh, of course I’m going to be honest and respect’. However, I think unintentionally families can try soften the blow of hard news or accidentally fall into paternalistic approaches. It’s important to keep front of mind that this individual has likely lived a life of making all their own choices, so try put yourself in their shoes.
You don’t want to waffle on for 20 minutes vaguely discussing the topic, but you also don’t want to be too direct. Whilst it’s not fail safe, I find the ‘C.O.R.E.’ method helpful:
Context
Observation
Result
Expected nExt stEps
E.g. You know the other day when your power was turned off, because you forgot to pay your bill? (Context). I’ve noticed a few instances lately where I’m worried you are having difficulty remembering tasks that didn’t used to trouble you (Observation). I want to support you to remain living at home for as long as possible, so I think it’s important we chat with your doctor to see how I can best do this (Result). I’d like to contact your GP and make a time for us to visit them together so we can discuss recent events and see what their thoughts are (Expected nExt stEps).
Now, no one can guarantee how the individual will respond in that instance. Some people living with dementia have insight into their own cognitive decline, others don’t at all. You know your loved one best to determine the best approach, but it’s important to keep the conversation as honest and respectful as possible.
PROVIDING CHOICE WHEREVER POSSIBLE
As identified earlier, just because someone has lost decision making capacity in one area of their life doesn’t mean they can’t make any decisions. As a substitute decision maker or as a support person for someone without capacity, you can still involve them in many decisions.
E.g. if the individual needs support showering in the morning, you can ask what time they like to be showered, if they’d like the person to pick out their clothes, if they would like help washing their hair or prefer to do it themselves etc.
Wherever you can provide options, give the individual as much choice and control as possible.
DEBRIEFING WITH OTHERS
Caring for someone with cognitive decline or impaired decision making can be such an incredibly heavy load to carry - especially at the times when you need to intervene and ‘make a call’.
Having a strong support network of people you can debrief with and bounce off is integral to ensuring you remain well throughout the process. This could be your siblings, a good friend, your neighbour or an aged care professional like a Geriatrician or me. It can be helpful to know that you’re on the right track and that others support your decisions.
As always, if you have any questions please get in touch. I support a lot of families navigating this space and am more than happy to be a sounding board if you want to check you’re on the right track.
As you may know, I host and produce a podcast called ‘The Truth About Ageing’. I release episodes sporadically and you can also access the full back-catalogue of episodes through your favourite podcast app (Apple Podcasts, Spotify) or at www.navigateagedcare.com.au/podcast.
Occasionally I also post updates on socials, which you can find at:
Facebook - @navigateagedcareau
Instagram - @thetruthaboutageing
Thank you again for being part of the Navigate gang. Please feel free to pass this email on to a friend of family member - the more the merrier!
I really hope you’re all having a delightful start to the year.
Big love,
Kate.
If you’d like to chat about your unique situation and gain a better understanding of options available to you, please book a free 15 minute consult via the ‘Book Now’ button below.
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