When my aunt was diagnosed with Alzheimer’s at the age of 68 years old, she left the psychiatrist’s office with a prescription and no information on what to do next.
As a family, we made countless phone calls and trawled through pages of online information to find out about practical support and future planning. This caused unnecessary stress at a time when we wanted to remain calm and present.
After this experience, my aunt lived with me for six months, which was challenging – particularly since I was remaining at work. Eventually, it became apparent that I would need to look into aged care; a process far more difficult than I expected.
Since then I have become an advocate with Dementia Australia, was selected as a member of Dementia Australia’s Business Advisory Group, and became a Dementia Friends Group Facilitator.
I met Ceri Cameron, a designer of dementia-friendly spaces and a fellow Dementia Australia volunteer, at a Dementia Alliance meeting in Orange. We soon discovered we share some very similar experiences.
Ceri and I agreed there was a need for a local resource providing families with key information after a loved one receives a dementia diagnosis. Online seemed like the best option due to the ease of accessibility.
After discussions with local medical experts regarding the ‘gaps’ we perceived in the community when it came to dementia, then determining whether there was truly a need for what we were looking to provide beyond our personal experiences, we created Dementia Lens: Orange.
Dementia Lens: Orange is an online resource that provides key information for the carers of people living with dementia, all in one easily accessible space. While it’s tailored to residents of Orange, there is a considerable amount of information that will assist people in other areas.
The key topics on the site include:
Assisting with long-term planning wasn’t high on our ‘to-do’ list after our aunt’s dementia diagnosis, but we soon discovered it needs to be one of the earliest priorities.
The law requires that a person has mental capacity (legal capacity) when making certain decisions in their life, in order for these decisions to be considered valid. These include making a Will, appointing an Enduring Power of Attorney, appointing an Enduring Guardian, and completing an Advance Care Directive.
A person living with dementia will often still be considered to have ‘capacity’ in the earlier stages of their diagnosis, so if these documents haven’t already been prepared, it’s important to do so as soon as possible. Dementia Lens: Orange provides the information and links needed.
There are many forms of dementia; it’s not a single disease, but an overall term to describe a collection of symptoms one may experience if they are living with diseases such as Alzheimer’s Disease, Vascular Dementia, Lewy Body Disease and more.
Dementia Lens: Orange provides links to some great information sources to find out more about the different diseases that cause dementia, as well as avenues for emotional support – both for people living with dementia and their carers.
Studies have shown that people living with dementia have a significantly higher quality of life if they remain in their own home, compared to living in an aged care facility. They have more social contact, higher levels of activity, more exposure to daylight, and less use of psychotropic medications.
However, sometimes dementia specific care is the best — or the only — option. It is important carers don’t feel guilty about this decision, as caring for someone is a full-time job, and we can each only do our best.
Dementia Lens: Orange provides information about these options, from Home Care Packages to checklists you can use when choosing residential care.
Over time, we plan to provide more information at Dementia Lens: Orange, with a goal to improve the lives of people living with dementia and their carers. This project is run on a volunteer basis, and we value your feedback and ideas.
Thank you to Central West Mums for supporting this project by allowing us to provide this information to the ever-growing CWM community.
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Learn more: www.dementialensorange.net
Get in touch: dementialensorange@gmail.com
