Receiving a dementia diagnosis, or worrying that one may be imminent, is a frightening time.
Sadness that an imagined future has been ripped away. Anger that this has happened you or a loved one. Denial, because it seems impossible to believe. And fear, fuelled by the many misconceptions about dementia.
They’re all normal reactions.
But if you can get past these emotions, now is also the time to ensure many of those fears don’t come to fruition, by making plans to help take control your own or a loved one’s future.
The reason for the urgency is because there are more than 100 types of dementia – Alzheimer’s disease is the most common – and how the condition progresses is entirely individual. This means it’s impossible to know with certainty when someone with dementia may lose their capacity to make important decisions.
“For some, [the progression] can be fast, but we also see people who’ve been living with dementia for 20 years,” Susan McCarthy, the executive director of client services at Dementia Australia, explains.
“We see the impact on people and their families and carers when this planning hasn’t been put in place – issues can become very complicated.”
This is not an issue that impacts only a small number of Australians. In the next five years, 500,000 people will receive a dementia diagnosis. As it is, more than 413,000 Aussies are currently living with dementia.
There are many ways to establish a framework that dictates your wishes for the short and longer term, but below are the key post-diagnosis planning issues to consider.
Understand the meaning of ‘capacity’
Capacity is a legal term that broadly means you’re able to understand decisions about matters that impact you, can voluntarily make those decisions, and can communicate them to others.
A dementia diagnosis doesn’t mean an automatic loss of capacity – many people live independently and retain the capacity to make their own financial, legal, healthcare and lifestyle decisions for many years following diagnosis, McCarthy says.
But it’s vital to put firm plans in place while capacity exists, Alzheimer’s Queensland warns.
“It’s too late to attend [to] legal matters once dementia has progressed to the point where mental capacity is lost,” the organisation says.
It’s important to note that capacity isn’t a universal concept, so you can have capacity to make decisions on one issue but not another. Likewise, there are several people who can determine whether you have lost capacity, ranging from your doctor or lawyer to a guardian you legally appointed.
Legal Aid provides the contact details for many groups that advise on capacity issues, so check the Legal Aid website in your state for more information.
Look into an enduring power of attorney or guardianship
An enduring power of attorney (EPOA) is a legal document in which you appoint someone to make decisions for you when you no longer have capacity to do so, set out the decisions they have the power to make, and how you would like those decisions made.
It’s possible to appoint an enduring guardian instead, but guardianship powers extend only to lifestyle and healthcare decisions, and not to legal and financial matters.
If you don’t enact an EPOA while you have the capacity to do so, the courts can appoint a guardian or administrator to act on your behalf when one is required. But this can be time-consuming and stressful for your family, and the court can override your own wishes when doing so. This means that an EPOA is the best opportunity to make your desires clear and have them followed.
It’s advisable to see a solicitor when preparing an EPOA, as well as talking the matter over with your family so that they clearly understand your decisions.
EPOA is a complex topic, which we’ve explored in more depth here.
You can also find more information on the related laws in your state or territory at the federal government’s MyAgedCare website.
Consider an advanced health directive
You can allow your EPOA appointee to make healthcare decisions on your behalf, but if you wish to separate the responsibilities, an advanced health directive (AHD) is a common way to do so.
An AHD, which comes into effect when you’re deemed to have lost capacity, allows you to set out your wishes on care issues, including life support, artificial feeding, resuscitation and organ donation. You can dictate when you want life-sustaining measures withheld or withdrawn.
To obtain an AHD, you must discuss your instructions with your doctor and ask them to complete part of the document. Each state and territory has its own AHD document – to find the relevant one, search online for advanced health directive in your location.
If you don’t appoint an EPOA or and AHD before you lose capacity to do so, Alzheimer’s Queensland explains that the law recognises the authority of certain people to make healthcare decisions on your behalf.
Each state and territory has a different title for such a person (statutory health attorney, health attorney, person responsible and substitute decision-make are common terms), rules on who is eligible (ranging from a spouse or partner to an unpaid carer), and restrictions on their power.
Their authority is recognised on a decision-by-decision basis, however, so could potentially lead to disputes where there are several people of an equal status with different opinions on your best treatment. This means an AHD is your best opportunity to clearly set out your own choices and have them followed.
The Public Guardian in your state or territory can provide more information on AHDs, healthcare representatives and their equivalents.
Organise your finances
MyAgedCare recommends speaking to your bank or a financial advisor to ensure your finances are set up provide you with the optimum care and freedom from money worries over the longer term, as well as ensure your wishes are honoured after your death.
A will, for example, can be contested on the grounds the person didn’t have capacity at the time it was signed, which makes your will one of the most important pieces of financial planning to attend to in the early stages of dementia.
Another key move is to organise your important financial documents, and discuss them with your EPOA so that they understand your money situation in detail.
Broadly speaking, however, as long as you or your loved one retains capacity to do so, continuing to manage your own financial affairs is beneficial, because it helps prevent the feeling of isolation that a dementia diagnosis can cause.
In September, St. George became Australia’s first ‘dementia-friendly bank’, training its staff and designing its branches to better cater to customers with dementia, and setting up technology to make it easier for customers and their family to manage the potential impacts of the condition.
McCarthy of Dementia Australia says small changes make a big difference if you have dementia. For example, the colour or pattern of a carpet can make it harder for people with a dementia-related cognitive impairment to judge distances.
“If it’s very noisy, or there’s bright lighting, that could stop someone from even going to in a branch,” she explains, in reference to helpful changes St. George made to its outlets.
The dementia expert hopes more business will follow St. George into offering dementia-friendly environments.
“Just being able to say that you have dementia and not being judged is great,” McCarthy says. “Going to the bank, going to the supermarket, catching a bus – being able to do that and feel supported is hugely important.”
If you or a loved one have received a dementia diagnosis, or enacted a EPOA, it’s important to speak to your bank to ensure it has the information required.
“Our bankers will then know to provide the extra level of care required and set up a dementia-friendly banking plan,” Ross Miller, general manager of St. George’s retail bank, explains.
“This includes options such as setting up withdrawal notification alerts, withdrawal limits on accounts, direct debits as well as alternative accounts and contacts.”
Have you helped a loved one live with dementia? Or are you managing a dementia diagnosis of your own? What piece of life-planning do you consider the most important?