" Rae and Barry (Baz) Telfer have been waiting more than 14 months for their Level Three Home Care Package. Baz is living with dementia and Rae, his wife and partner of 52 years, is now also his full-time carer. "
People living with dementia in waiting list limbo

Rae and Barry (Baz) Telfer have been waiting more than 14 months for their Level Three Home Care Package. Baz is living with dementia and Rae, his wife and partner of 52 years is now also his full-time carer.

“It is heartening to hear announcements from the government at budget time and just this week about increases in the numbers of packages and increases in funding,” Mrs Telfer said.

“But we want to see these promises turned into actions and Baz needs it now.”

The Level Three package promises the types of support services that will make a difference to the quality of their lives.

“The limbo of this promised package is in our minds every day. If we are eligible and we qualify – as all the correspondence from the government has said – then it’s wrong that we have to wait for so long,” Mrs Telfer said.

“Living with dementia already is full of changes happening all the time, challenges, stress and uncertainties. We don’t need more uncertainty and when you can’t access that help you’re just left with frustration, helplessness and disappointment.

“We’ve had invaluable support from Dementia Australia and the first thing every carer is told is to make sure you look after yourself but to do that you need support – you can’t focus on yourself first because you are so busy supporting the person you are caring for.

“As much as I love Baz, I also need to be able to plan some time for myself and my own activities.

“Every day I need to be here for Baz to plan our days together, from what and when to eat, what to wear, what’s on for the day and how we are going to get there.

“I need to be at every appointment with Baz to help him to respond to questions and take notes as he will struggle to recall the details after.”

The Telfers live in their family home where they both wish to stay together for as long as possible.

“Baz and I want to make the most of the time we have together but every day without the support impacts on his ability to live as well as he possibly can in the time he has left,” Mrs Telfer said.

Maree McCabe, CEO Dementia Australia welcomes the additional funding of $100 million over two years of the Commonwealth Home Support Program that was announced by Minister Ken Wyatt this week.

“This extra funding is much needed as the waiting list numbers for Home Care Packages have increased to over 121,000 people in need of urgent support,” Ms McCabe said.

In Australia, there are more than 436,000 people living with dementia and estimated up to 70 per cent live in the community. Dementia is the second leading cause of death in Australia and the leading cause of death of women.

“Home Care Packages allow people living with dementia the choice to live in their own homes for longer, can improve their quality of life and reduces the overall cost to the health and aged care system,” Ms McCabe said.

“More needs to be done to reduce the waiting time, particularly for people living with dementia so they can make their own decisions about their care before their symptoms impede their capacity to do so.

“Appropriately trained and qualified staff are integral to the process to ensure people are being assessed to receive the level of care they need.

“With the additional packages announced in the budget and this new $100 million funding boost we hope to see a significant decline in people on the waiting list and all people impacted by dementia will start to receive the support and care they deserve.”

 Posted: October 10th, 2018
Discussion

Romayne said:

I totally agree. My mother was assessed as level 4 in February 2016, and we have only be approved for level 2 funding. To make matters worse they reassessed her as they said the assessment needs to be done every two years. I told them it was a waste of resources, as dementia never improves, and only gets worse, and she was already level 4. Never the less someone came out to reassess. My mother is 91, and her primary carer is my frail 92 years old father. The CHSP is good, and we had a great manager, who we could contact to sort anything out. Unfortunately, the system is constantly changing, and now we have a team that is based in NSW and not in Victoria where we reside. We are constantly getting the runaround. I am unable to work full time, as I am constantly supporting my parents.

PETER N CORSER said:

Given the fact that it is so much cheaper to keep the person with dementia at home instead of in an aged care facility and that depends entirely on the ability of the carer to cope, why is this not a good reason to provide that support to the carer. As this can only be done to the extent needed by using a higher level of care packages, it would make sense for that to happen rather than waiting for the carer reaching breaking point and having to put their partner into an aged care facility because they cant cope any more. Its not only the best thing to do from the caring point of view but also the taxpayers.

Tina Kendall said:

My husband has Lewy body dementia and Parkinsonism, he was approved for a level 4 package. He has waited more than 3 years. He had to go into a nursing home before he got the package.

Tina Kendall said:

My husband has Lewy body dementia and Parkinsonism, he was approved for a level 4 package, we waited more than 3 years. He had to go into a nursing home before he even got the package.

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