Diagnosis not the end of the world for Rebecca

At her home in a leafy Canberra suburb, Rebecca welcomes her Younger Onset Dementia Key Worker, Moses Nyapidi, and I at the door before leading us through to her lounge room where we are greeted by her excitable dog, Jaime.

After a brief chat about the Rio Olympics and some refreshments, we settle into a conversation about her experience living with younger onset dementia. 

Rebecca younger onset dementia Dementia NewsRebecca begins by explaining the greatest impact she has experienced from dementia is that she has to “work harder at remembering” and also manages with depression (although she is keen to point out the depression is not solely related to her dementia diagnosis). 

Rebecca lives independently with her dog, Jaime, who she has recently started taking to training with mindDog, a not-for-profit organisation that trains and accredits assistance dogs including those for people with dementia. Rebecca also receives regular visits from her son and daughter as well as regular contact from Moses, her Younger Onset Dementia Key Worker.
Rebecca explains that while she can still drive and cook for herself, she has a cleaner come to assist with housework and now relies on her daughter to help with financial matters. Rebecca jokes she tended to “receive a lot of red notices” before passing on major financial matters, such as her tax, onto her daughter to look after. 

With her children, Younger Onset Dementia Key Worker and health professionals around her Rebecca says she feels supported and “well resourced”. 

When I press a little further, she tells me she regrets there were not enough social interaction and volunteering opportunities available to her. To this end, Rebecca was excited about attending her first Dementia Australia Consumer Advisory Committee meeting later in the week. Rebecca also attends the Greening Australia volunteer program, but her wish is to use the skills she acquired during her career working as a nurse. Moses is currently helping to secure an opportunity for Rebecca to volunteer by helping with Morning Tea at a local aged care facility.

On our way to meet with Rebecca, Moses had told me that as a Younger Onset Dementia Key Worker an essential part of his role is identifying and arranging opportunities for social interaction and meaningful volunteering for his Younger Onset Dementia clients, such as Rebecca. I asked Moses why he became involved in the Younger Onset Dementia Key Worker Program and he spoke to me about how he felt there were “really good concepts behind it” and that he felt people with younger onset dementia had been under-served so he wanted to “see how I can help.”

Back at Rebecca’s home, I ask her whether she felt the Younger Onset Dementia Key Worker Program had helped her. Rebecca was quick to praise the program saying “it had been fantastic.” She spoke highly of the Living With Memory Loss education sessions for people with younger onset dementia arranged by her key worker where she enjoyed meeting other people with younger onset dementia and “learned what to expect” as she learned tools to deal with the every day. 

Rebecca also speaks highly of a two-day trip to Murramarang National Park, on the New South Wales south coast, she had participated in. The trip organised and staffed by Dementia Australia ACT saw Rebecca join twelve other people with dementia for a short seaside break. Rebecca spoke of how much she enjoyed spending time with other people who also had dementia, laughing and having fun. Rebecca found it incredibly rewarding and inspiring to “see these people's potential.” 

Rebecca was also eager to tell me how much the Younger Onset Dementia Key Worker Program had helped her prepare for the National Disability Insurance Scheme. The program had arranged for group education sessions about the National Disability Insurance Scheme led by National Disability Insurance Scheme Community Engagement Officers and local service providers. Her key worker helped her to identify not only her immediate needs but also what she might need, as she put it, “down the track.” Moses had spoken to me earlier of the need to take a holistic approach to National Disibility Insurance Scheme planning. 

He cited a situation where a client had gone into his National Disability Insurance Scheme planning interview alone without any preparation and had only focused on his immediate needs. The result was a plan that did not meet all the client’s needs and with plan reviews not easily or swiftly available some of the client’s needs were not supported until a review was arranged with assistance from his Younger Onset Dementia Key Worker.

Having attended an National Disability Insurance Scheme information session arranged by Dementia Australia ACT, undertaken some preparation with her Younger Onset Dementia Key Worker and having her Younger Onset Dementia Key Worker with her at her National Disability Insurance Scheme Planning Session, Rebecca was very happy with her National Disability Insurance Scheme plan. She spoke of how it covered everything she needed and the ability to actively participate in planning her care needs had been empowering. Out of curiosity, I asked Rebecca if she felt she would have had the same outcome from her National Disability Insurance Scheme planning session had she not had the support of the Younger Onset Dementia Key Worker Program. 

Her response, an emphatic “no.”

As our time was coming to an end, I asked Rebecca one last question; what advice would you give to someone who had just been diagnosed with younger onset dementia?

 “It’s not the end of the world” was her simple but positive response.

As we said our goodbyes, Rebecca remembered a “brilliant brochure” she told me had been of great help to her in “normalising the diagnosis.” Rebecca explained the personal stories of people with dementia living their day-to-day lives, found in the well-worn In Our Own Words brochure she handed me, had helped her to accept and understand her own dementia diagnosis. 

In Our Own Words can be found on the Dementia Australia website.