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Get moving early when you spot signs of dementia

Senior woman chatting to her caretaker

So often I hear of the reluctance of individuals to seek a diagnosis for their dementia or to apply for support to live with the condition at home.  These procrastinations are understandable but counterproductive to living the best life available to you.  The benefits of timely support are undeniable, both for the wellbeing of the person with dementia and their carer.

Despite the complexity of approaching the aged care system and its wait lists, the reality is the sooner you commence the process the better your chance of securing the right care at the right time.  Failure to initiate the process as early as possible may jeopardise your chances of the right outcomes for you or a loved one.

There are currently over 100,000 Australians waiting to access the funds that will provide them with an aged care package of support to stay in the home.  The waiting list is growing longer every day.

The release of the Government’s Home Care Packages Program data report in December last year proved what many of us in the industry have known for months… there are more people who need a home care package than there are packages available.

Current waiting lists for top level home care packages are at their longest ever, up to 18 months. This means those who need the highest level of care to stay at home, whose health is at greatest risk, and whose carer has the greatest degree of demand on them to support the wellbeing of their loved one, are having to wait the longest for the support they need. While the Government’s announcement in December of an extra 10,000 high level packages will help, it is not enough.

To illustrate the point about making arrangements as soon as possible to maximise your choices, let me tell you the story of Bob and Joan (not their real names).

Bob, 78, and Joan, 77, live in suburban Perth.  They have been married for 52 years.  Joan was diagnosed with Alzheimer’s disease a few years ago. Bob and the family were somewhat relieved by the diagnosis, after noticing symptoms over a couple of years. As Joan lost the ability to perform certain tasks, Bob started taking on more and more of the household duties.  He took these duties on without complaint or asking for assistance.

Soon, Bob was looking after all the cleaning and most of the meal planning and preparation. After a visit to their GP and an ACAT assessment, Joan was approved for a level two home care package. This is a lower level of care that provides for minimal assistance.  After waiting several months for the funding to be available, Bob decided to fund some cleaning services himself to relieve some of his workload to allow more time to care for Joan.

Meanwhile, Joan withdrew from her regular social engagements, embarrassed by her diagnosis. More months passed and it became apparent that although Joan could remember all her children, and her grandchildren, she was unable to look after any of her personal care needs. Joan was now entirely reliant on Bob to help with her personal care and eating. She was waking through the night and it was up to Bob to encourage her to return to sleep.  A full night’s sleep was a distant memory for Bob.

After prompting from their family, Bob organised another ACAT assessment and Joan was approved for a level four home care package – the highest level available. Facing a rather daunting wait list for the additional support and care they needed, Bob carried on, stoic in the face of reality, supporting his wife 24 hours a day. Although they could still access some services through the level two package, these were not enough.

Soon after this, Bob needed to have surgery. The family realised they couldn’t manage the care of Joan alone, and respite care would have to be arranged. Luckily, they found a place close to Bob and Joan’s home, and with Joan in respite care it meant Bob could stop and rest for the first time in a very long time.

Without the high level home care package, Bob knew he could not manage the caring responsibilities. While Joan was in respite the family made the difficult decision to place her into full time care.

This story is true in the telling but rather over-simplified. The sad reality is there are many more people like Bob and Joan who are facing a similar situation.

With the higher level package available it is possible that Joan would still be at home with Bob.

There are no easy answers for the aged care challenge, for the Government or for people like Bob and Joan.  However, you will increase your options by enquiring and accessing what is available sooner rather than later.  In so doing, we can all hope we will maximise the choice and control we will have over our circumstances as we progress through our golden years.

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