Dementia Australia CEO discusses the benefits of planning ahead
Dementia Australia represents the 425, 416 Australians living with dementia and the estimated 1.2 million Australians involved in their care. The organisation advocates for the needs of people living with all types of dementia, and for their families and carers. It is estimated that 250 people are joining the population with dementia each day.
Dementia Australia is a strong supporter and advocate of advance care planning. We spoke with Dementia Australia’s CEO, Maree McCabe, about how advance care planning can help people diagnosed with dementia.
“It is important to consider that people diagnosed with dementia will lose decision-making capacity at some stage as their dementia progresses. Therefore, good future planning is important, including appointing enduring powers (substitute decision-makers) and discussing future decisions early,” said Maree McCabe.
“If you or someone you know has been diagnosed with dementia, you may be feeling a range of emotions, including shock and grief. However you may also be somewhat relieved that you now have a diagnosis and can start to plan to ensure the best quality of life (for both the person with dementia and their carer).”
How advance care planning can help people living with dementia
“Having an advance care plan can ensure the decisions you make today can inform the care you receive in the future, when you may no longer be able to make these decisions.
“Ideally you will have told your loved ones your preferences, providing both yourself and them a chance to prepare for the future. Planning ahead is about putting things in place so that your choices will be known and acted on if you cannot express these choices yourself later in life.”
How advance care planning can help families and carers of people living with dementia
“When a person begins to experience the symptoms of dementia, their families and carers begin a new and difficult journey of their own. They have to try and cope with the emotional impact and implications of a diagnosis, come to terms with and manage the changes they see in their relative/friend/partner. They often need to provide emotional and practical support on a daily basis, and may have to make difficult decisions about treatment options, use of services, finances, and long-term care.
“Advance care planning completed soon after a diagnosis can help make the journey a little easier. Thinking about the possibility that a loved one may lose capacity to make decisions in the future is confronting for most of us. Carers and families may often find it difficult to know where to get information and how to start conversations with loved ones about this issue.
“While these conversations may be difficult to start, many people report that it gets easier once they ‘break the ice’. It is also true that people are often relieved to discuss the issues once they have been raised – they may have wanted to talk about the future but found it challenging to voice their wishes. We worry about upsetting people by talking openly about the later stages of our lives – but in many circumstances it can actually be empowering for people with dementia, as well as their families and carers.”
Where can people get more information?
Dementia Australia has developed targeted resources aimed at assisting people through the process of advanced care planning. Visit the Start to Talk website.
Advance care planning requirements differ across Australia. Be sure to refer to the advance care planning forms and documentation relevant to your state or territory.