I may not remember the words you say; only the way you say them.
This seems true for most engagement when you have dementia, or are afflicted with other serious illness. The Fight Dementia rally on Thursday will be an exception, as the politicians making promises will be remembered perfectly through the recordings of the event! Ita Buttrose, as President of Alzheimer’s Australia has promised to make them live up to their words and promises, and like her, it was my first rally ever, and I too intend to
speak out until I am hoarse, or in my case, perhaps can speak no longer. Our presence and collective voice will help do the same. What we need next might be for celebrities to join the challenge, to help raise awareness and then funds for age appropriate assisted accommodation or respite for those of us with younger onset dementia. Just like the kids with cancer, and no disrespect is meant to them with this comment, we do not want to be in a bed next to someone much older.
By speaking out, my dear friend Valerie says I am becoming an advocate and lobbyist! I’m not sure about the titles, but I am joining in the political debate about the provision of health care in Australia. My background in nursing, and then health care sales has given me additional insight into the health system, and living with chronic illness has further enhanced my knowledge. The Australian system does not work. The States pass the buck onto the Federal government when accused of it not working… the Federal government passes it straight back to them. Perhaps if politicians pensions were dependent on a healthy health system, they would find the funds to fix it?
At the Summit following the rally march on Thursday, many ideas and voices were heard. These are some of my thoughts. We need many things to change in government and policy, as currently there is nowhere to go if you are unable to live alone due to illness if you fit into the 50 – 65 year age bracket. For example, in South Australia, assisted living through Disability SA cuts out at age 50. In the aged care system, it doesn’t start until you reach 65. If by some fluke and/or much manipulation of the system, you manage to get services designed for aged care, then you can only look forward to respite or living in a residential facility with people for the most part, over the age of 70.
In my opinion, we desperately need Aged Care Assessment Teams (ACAT) and a new assessment I would call DCAT (Dementia/Disability Care Assessment Teams), so that people under the age of 65 are not excluded from health care and appropriate services and treatment.
Age appropriate services are non-existent, not just for those with younger onset dementia, but for kids with cancer, people living with diseases such as multiple sclerosis and brain injury patients. In a modern, wealthy and westernised country, why is it we need to fundraise AT ALL to supplement a system we all pay high taxes for? Diagnostics for dementia need to start sooner, GP’s need more training to assess, and to refer for assessments with specialists much earlier. Much more training for Person Centred Care is required to ensure the whole person is being cared for, especially in aged care. Better care of people who are hospitalised needs to be taken; the de-conditioning that sets in caused by insufficient physical activity, physiotherapy, and other general care is urgent.
Funding for much more dementia research is urgently required. It will be the next big epidemic we have, and our health system can’t manage now. 1500 new cases currently being diagnosed in Australia per week, and this equates to 78,000 new cases of dementia in the next year. The current figure of approximately 269,000 people in Australia diagnosed with dementia is skyrocketing. The other thing we need in non-means tested carers allowances for family members who are caring for a family member with dementia. Recent studies in Scotland prove this saves their government huge slabs of money in the health sector. Why is this so hard? Why do I hear stories of couples or families having to break up, legally separate, or get divorced – in order to get assistance from Centrelink? The system stinks, and encourages people to cheat and lie, as this seems to be the only way proper financial assistance can be acquired, and at a time that is full of grief and sadness as it is usually needed due to a loved one’s failing health and ultimate demise. The policy makers have got it very wrong, and for their sakes, I sincerely hope they are not one of next weeks 1500 new cases of dementia!
It seems I could go on and on, but for today that’s it!! xx
