I have decided to start this petition in favour of improving the current services available to those suffering from younger onset dementia. Many of you may not realise it is even possible to develop dementia before the age of 65, yet a family member of mine has this devastating illness at only 42.
It is hard to describe the exact feeling when first confronted with such a tragedy. Before I had seen the effects with my own eyes, I found it hard to empathise and to take into account how serious it actually was. To see a person you love in such a state, who only a few years ago had everything going for them - a wonderful family and two young children, a newly built home, a career - is dreadful and hearbreaking to say the least. We have come to accept this; these are the cards that were dealt to him. But what we shouldn't and won't accept is that there is very little assistance available to alleviate and manage this horrific situation.
People tend to accept dementia as a product of old age, but imagine having to accommodate and manage a person who is barely half way through their lives. These sufferers do not deserve to be cast aside and placed into aged care. They deserve to receive the same dignity that any middle aged person would require and expect. There is plentiful support for the physically disabled, the depressed, the addicted, the injured and the aged, so why not for this? It may be less common than other ailments, but even in it's rare state the severity and impact far outweighs the figures. For each young person who has completely lost thier identity, personality, and normal functioning, there are family members and friends struggling to come to terms with the concept; feeling woefully helpless, and failing to understand how this illness works. Too often we are faced with the questions, "What is he thinking?",'Is he suffering?", "Does he understand or acknowledge that he is ill?", "Has he forgotten me?". There is just not enough public awareness which ultimately leads to total frustration and isolation of everyone involved.
This personally affects me, and I feel that if there's nothing that can be done to fight this vicious disease, then perhaps the only thing we can do is strive to make it easier for the sufferers, families and children who's lives have been shattered by this. With dementia, the grieving process is ongoing. There is no solace and no closure; you're essentially grieving each and every day for the loss of someone who is still physically with you.
"Dementia profoundly affects the quality of life for thousands of younger Australians every day. Younger onset dementia is the term used to describe any form of dementia with onset of symptoms in people under the age of 65. It is estimated that younger onset dementia affects approximately 10,000 people in Australia today. The needs of this group are special because there is low awareness, even among health professionals, that younger people may have dementia. Due to this, there is poor access to services that provide care and social support for younger people and their carers and the condition can have a devastating impact on the person with younger onset dementia, their family, their children and their friends. People have a right to tailored dementia services regardless of age" - http://www.alzheimers.org.au/upload/YODCommunique2009.pdf
As it stands, aged-care facilities and private carers are among the only respites for younger Alzheimer's and Dementia sufferers and their families. Why should the middle aged be caught in limbo and grouped with the elderly? Why don’t tailored, specific facilities and respite centres exist for the approximate 10,000 early-onset suffers? Why should their quality of life deteriorate so completely for them and those around them, when resources could exist to improve the circumstances for everyone involved?
Please help push for better facilities, more understanding, less isolation and more funding.
We, the undersigned, appeal to the Australian Government to be more proactive in their approach to this devastating illness.
We would like to see improvements in the following areas; Awareness campaigns resulting in reduced stigma and social isolation, an increased investment in research, access to appropriate services, employment and financial assistance, and changes that will assist health care professionals to diagnose patients in a more timely and accurate manner.
The Increased Awareness and Support for Younger Onset Dementia/Alzheimer's petition to Government and Health bodies of Australia was written by Amy Woodward and is in the category Health at GoPetition.