Lucy* is in her early 40s and was diagnosed with a rare type of dementia about 2 years ago. She is currently studying and has a background in science and research.
There is a strong link between the type of dementia Lucy was diagnosed with and a family history of dementia, with some people carrying a gene mutation that passes the condition onto their children.
Lucy says many people in her family have been affected by dementia.
’We had seen a lot of people in the family getting dementia and dying from it and we didn't know exactly what it was…until my father went to a research group and they actually [did] the testing…And as soon as I was able to get the testing done…I found out that I also was carrying a mutation.’
Lucy was already beginning to show symptoms when she got the results of the genetic testing, but it took about 9 months to see a neurologist who specialises in dementia and receive a formal diagnosis.
‘As soon as I got to a neurologist that actually understood dementia I got a diagnosis on the spot. [The neurologist] said it was very early. He has never diagnosed anybody with this dementia that early.’
In a lot of ways, Lucy says dementia hasn’t affected her life too much. She is still able to do many of the same things as before – study, get good grades, and do the creative things she enjoys. But it does make some things more difficult.
‘I still have [a] lot of abilities to do things but the biggest issue with me is... stamina. I'm very fine when I first wake up but… towards the end of the day…I just don't have energy left. I can easily get distracted … I come to the end of the day and I haven't started or haven't finished the original task.'
'Those type of things [are] very much part of the dementia itself. It’s not as if dementia has completely changed who I am [but] it does add those extra things [that] just makes it a little bit harder. I have to work harder.’
Lucy gets most of the support she needs through the National Disability Insurance Scheme (NDIS).
’Because I’m not in [the] age care age, I am getting the NDIS instead… I have a cleaner come in fortnightly and I have someone do my yard work… I also have support workers who take me to different activities that are outside the distance that I feel safe to drive.‘
The NDIS provides support for people aged under 65 who have a significant, ongoing disability. Through this scheme individuals are provided with funding in order for them to access a range of support services and programs, including supports that assist people with daily personal activities, making home modifications to suit their needs, programs that enable and encourage participation in work or social activities, and funding towards therapeutic services.
Lucy’s mum cares full-time for her dad who also has dementia, so Lucy wanted to get access to NDIS services to relieve some of the pressure on her family.
She says it’s hard to know what the future will hold, or predict what sort of support she might need down the track.
’As my dementia progresses I [will] definitely need more help. Having my NDIS plan is good because if something bad comes we can always organise better things or extra things.’
See Aged care and support services for people with dementia for more information on support services available to eligible Australians with dementia.
* This case study is based on an interview with a person who has dementia. This personal account is not necessarily representative of the circumstances of other people with dementia or the challenges they may face, but it is our hope that it will give readers a greater awareness and understanding of the diversity of people’s experiences with dementia.
* Names and identifying characteristics have been changed. Images are not representative of individuals in the story.