A week ago I was invited to be a dinner guest with 7 fabulous couples who are part of an ‘Adelaide Hills (YOD) Social Group’ run by Nicki Peaston. It was an absolute honour to meet everyone, tell my story and learn more about people with younger onset dementia as we devoured some yummy pizza.
We chatted about many topics with many being non-dementia related. I felt it was important to talk about the lives of everyone, rather than just discussing their current situation. I did however learn a lot more about younger onset dementia (under 65) and the struggles of their partners who care for them.
I discovered that not only do they have less support options, once a person with dementia reaches 65 they are cut off from some vital groups and services. Funding ultimately dictates this, however I was disappointed that social groups were also impacted purely because an age is reached. We don’t suddenly stop being friends with people because they turn a certain age, and by putting a wedge in between them it is not ‘dementia friendly’ in my opinion.
Younger onset dementia falls into a grey area in terms of funding and support services available to them – Just because the person is under 65, should they be supported by disability services or should they be supported by aged care services? Current government funding for services means that people with younger onset dementia are not adequately supported because they don’t fit neatly into either category.
If for example I was to be diagnosed with dementia at age 47 and was needing extra support I would be placed in a nursing home that predominately caters for people 65-100+. The environment would be completely wrong for my needs, the tv programs and music would not be suitable, the activities provided would be inappropriate and my social circles would be heavily impacted.
Younger people are not interested in bingo, knitting, Andre Rieu or any other activities for older people. They need mental stimulation suited to their age which keeps their minds active. They need to go outside, get some exercise and go on excursions.
They need games, computers and people their own age to socialize with.
It is about time our younger onset people are treated properly (and fairly) and a centrally based facility built to cater for them. This way people from all suburbs can access it equally, they will then have an age appropriate environment, and be able to live a happier life. Approximately 15-20% of people diagnosed with dementia in Australia are under 65.
The current situation is unacceptable as it is putting more strain on the carers as they have less support avenues than people over 65. This situation does not sit well with me at all and I would really like to hear comments from people who are living within this seemingly inadequate system.
Whilst this is a heavy and uncomfortable topic to discuss it is a conversation that has to be had, and these people deserve to be looked after properly. I do want to commend Nicki on her commitment and support to the carers and people with dementia in the Adelaide Hills.
Thank you for having me for dinner and I hope I can come again as I really enjoyed meeting everyone and telling stories with each other. Bravo