Understanding Childhood Dementia

This MOOC certainly opened my eyes and brain regarding the complexities involved in the diagnosis of Child Dementia. My wife passed away with Vascular Dementia so I had much empathy for the families involved in looking after their child with this dreadful diagnosis as I looked after my wife for many years. It was pleasing to see that the Specialists involved in the MOOC shared their empathy with the families. It was noted in the MOOC that Childhood dementia is an umbrella term for over 100 rare, progressive genetic conditions that cause severe brain damage in children. This fact was very concerning to me and I am confident there would be immense concern to all families, support people and the medical professionals involved.
In conclusion, this MOOC taught me much more about Dementia that other MOOC'S that I have completed did. This MOOC is a must see for families who have a child with this dreadful diagnosis. I highy recommend this MOOC and as usual the Specialist's have validated their expert opinions with evidence. 10/10 again to the Wicking Centre for producing this MOOC. My heartfelt thanks to all of those involved in the MOOC particularly the families and support people.

I had never heard of childhood dementia before starting this course, so I had no expectations about what the outcome would be.
Reading about the illness and the experiences of the child, parents, family, caregivers, and professionals was challenging and, at times, so overwhelming that I had to stop.
I can only express my deep admiration for everyone who helps these children get through each day—chapeau, monsieur!
As you often mentioned, the course was challenging and perhaps repetitive at times, but I imagine this was necessary to help us understand the importance of key concepts. As with previous courses, I truly enjoyed the learning experience. Thank you very much for the tremendous effort involved in creating something like this, especially to the parents and siblings who shared their experiences with honesty and grace.

Maria NZ

This certainly was an area of childhood health that I knew nothing about. I was amazed and somewhat disheartened at the difficulty faced by young people suffering from childhood dementia. We all want to solve problems; we want to bring our children who suffer, relief and then healing. Clearly this is not available at this stage for so many different conditions.
My attitude has changed from one who might say, 'Please quieten your noisy child', to now saying, 'Their noise is beautiful, let it flow.'
I admire immensely those parents who do all that they can to bring as much brightness and purpose into their suffering children's lives, while sacrificing so much of their own lives. I also admire all carers and health staff who daily give of themselves for the good of others.
Please continue to educate the masses; help all to see the real situation; and let us hope that those in need are not kept waiting so long for the help they need.

A very thorough course from experts with lived family experience and professional specialisation in the field. The uni has put a lot of effort into shining a light on the joys of the children and their families to counterweigh the innate sadness of the topic. It is important information for anyone and everyone working in health or disability across ALL disciplines to have, with a focus on how we can all continue to improve supports from the first signs of significant developmental concern through to end of life support and beyond and the importance of research and emerging therapies.

The course is free to reach as many people as possible. There are links for further reading and to services with additional helpful information. Put aside more than 12 hours, in smaller portions of time, if you want to thoroughly listen to the words of the video clips included and take notes, as there is a lot of information.

I am a keen supporter of MOOC courses which are useful and relevant. Thanks for the effort put into compiling the information and resources, as they have really helped me gain a better understanding of childhood dementia. While the many videos were useful for hearing different perspectives from family, professional caregivers, and support workers, they became a bit tedious toward the later part of the course. Being a visual learner, I tend to prefer taking time to read and revisit information, especially when it comes to technical details, so I did lose some momentum toward the end.
The summaries, diagrams, and downloadable articles were extremely helpful in keeping me engaged. If some of the resource videos could be downloaded, that would be excellent as we could use these materials for sharing knowledge on childhood dementia with other care workers.

My Brain has been so overwhelmed by what I have learnt I really don't know where to begin to write about what a wonderful, tremendously knowledgeable learning curve I have been on. I did have to stop more than once to regain my own thoughts and wonder at the strength of the Parents before I could continue on this journey of Understanding Childhood Dementia. My heartfelt thanks and admiration go out to the Parents, Carers, Medical Personnel & Specialists, Researchers and MOOC for putting this all together.
As I have done many MOOC Courses I have a greater understanding of Dementia.
I have recently been diagnosed with Alzheimers, but, because of what I have learned over the last 10 years, I feel I have the ability to cope with whatever my future will look like and make the right choices.

A very comprehensive study of Childhood Dementia that I (and many of my contacts - family and friends) did not know about. It included many different aspects of this condition, from medical, scientific, biological, genetics, and most importantly, family input.
As I advanced through the different weekly content I received a greater awareness of the difficulties facing both the families, supporters and medical staff. So many childhood dementia health department and workers should be supported financially by government grants to improve the health of these children. Hopefully this awareness may be transferred to the appropriate government health areas. Also was the emotional aspect I experienced when listening and watching the family and support workers. Tears flowed.

The journey through the presentations were challenging , emotional but most of all insightful. I gained knowledge, understanding what families, siblings and broader community experience with caring for a person diagnosed with this life threatening condition made me look differently at those who show so much empathy caring for our precious children.

Learning about the causes and treatments for children diagnosed with this condition made me realize that a lot of work is still needed by getting involved with organizations, taking hands with institutions who can make a huge difference in advocacy and awareness programs to educate and make communities aware that Childhood Dementia is real and an early correct diagnosis is crucial in planning for the future and treatment plan going forward.

I also learned that not only one test determines whether a child has dementia, this is a complicated road to travel and time consuming and incorrect diagnosis can be made.

It is important to get in touch with the correct professionals to make correct diagnosis and enable the diagnosed child to receive correct treatments.

Compassion, support to all people involved with the child and family is very important and also to allow space for families to deal with this terrible diagnosis at their own time and pace.

Palliative care for me was also about "dying well" but during the course I realized it is more about "living well" for the time that is left.

Childhood Dementia is still a word that is "new" to me, but I also know that it is real.

A lot of work still needs to be done to get communities involved to better understand Childhood Dementia.

This course was a real eye opener. I had no idea of childhood dementia. The stories were very sad and confronting but made you want to learn more. My heart goes out to all involved in the care and the families and the support teams that are involved with looking after the kids with childhood dementia. There definitely needs to be more money thrown into the research and to get the words out there so that more people can know about this horrible disease that is killing children, so that they can get earlier diagnosis and get help. It was so sad to hear that by the time most get diagnosis that it is generally too late for most. It did upset me learning that most die before age of 10 and as I have a granddaughter who had just turned two years of age that hit home for me.

This mook was really well put together with the testimonies and real life stories and being a mother of two older children now I felt grateful that they were born healthy, but so sad that a lot are not and can not get the help that they need or are told you are just being anxious about being a first time mother. That is the trouble with a lot of medical institutions they do not listen to the parents and just dismiss what is being said because they are the professionals and we are meant to listen to them.

Thankyou I have learned a lot and will be thinking of these kids for the rest of my life.