Living with Dementia

When they were in their early teens, Kia and Sian’s dad Richard was diagnosed with younger onset dementia at 53. A loving father and supportive husband, Richard was in the prime of his life. “Dad was extremely intelligent, at the time of his diagnosis he was Project Manager for an engineering company and was in charge of projects worth tens of millions of dollars.” Kia says.

Richard was diagnosed with a rare form of dementia that is always early-onset – only affecting people under 65. It is one of the puzzles of dementia, and right now, there is no treatment and no cure.

Over the years as his condition progressed, Richard’s personality and behaviour changed dramatically.
“The disease has progressively taken away his ability to understand the meaning of words,” says Sian. “For example, he knows what a cup is, but he doesn’t remember the word for it and can’t understand the word if he hears it.”

Every day they feel the loss of their dad who used to enjoy making the girls’ school lunches, and sneaking them out of school early on special days to go see Harry Potter movies.

 “We grieve for what he has lost, for what our mum has lost and what we have lost, both for the present and the future,” adds Kia.

These two strong girls help support their mother when times get tough. They’ve also found enormous comfort in a Dementia Australia support group for young carers. “We can’t describe the relief we feel sitting in a room of people our own age going through the same thing, experiencing the same hardship,” says Sian.

Over the years the family has also accessed many Dementia Australia services. “Dementia Australia has been a continual source of support and education,” says Kia. “When dad was first diagnosed we borrowed books and videos from their library to help educate ourselves about the disease, and we’ve frequently relied on the counselling service, which has been a life-saver, helping us navigate the muddy waters of dementia.”

“This amazing organisation has really made a huge difference in our lives,” adds Sian. “We will be forever grateful for all they’ve done for us, and for the thousands of other families just like us.”

Please support families like the Woodmore’s, and help solve the puzzle of dementia today.

Our Research

Dementia is the second leading cause of death in Australia. The only way we can end the emotional, financial and societal impact of the condition is through research.

Supporters of Dementia Australia are contributing to vital research that will help scientists delay, prevent and ultimately find a cure for dementia.

When you donate to Dementia Australia you could help support the Dementia Grants Program, which provides research funding for some of Australia’s best and brightest scientists in the field.

Every day their innovative research is uncovering vital new information that is taking us ever closer to a cure.

Meet two of our recent grant recipients:

Joyce Siette

Evaluating social engagement services for older adults in community care: Role of social networks in cognitive decline

Current treatments for dementia are effective in only a subset of patients, and for these individuals it only manages to temporarily halt symptom progression.

A ‘cure’ would involve reversal of a complex cognitive and non-cognitive syndromes, and likely require psychosocial changes early on in an individual’s life. Here, we aim to see if rich and meaningful social networks play a significant protective role in memory decline associated with old age. The proposed studies will inform future social engagement services through their evaluation of current social services offered in community care (e.g., meals on wheels, intergenerational interaction activities) and will form a new evidence base on how to best structure social networks in order to improve an individual’s quality of life.

Michelle Lupton

Methylation-based biomarkers for prodromal Alzheimer’s disease

Alzheimer’s disease usually affects older individuals, but hallmarks of the condition begin to be apparent in mid-life.

Michelle Lupton will investigate whether chemical modifications of the DNA, called methylation markers in blood, are associated with AD risk. She will also test for an association with brain measures showing very early stages of dementia. These include cognitive assessments and the latest innovations in brain imaging which can detect early symptoms before diagnosis.

This project will test whether DNA methylation markers are an early predictor of whether a person will develop Alzheimer’s. The identification of a blood sample based biomarker which is easily accessible will enable selection of individuals for drug trials and early intervention therapies, with an ultimate aim of preventing the condition from progressing.

To learn more about Dementia Australia Research, visit: www.dementia.org.au/research