Amongst other things, I’m a research monitor for the Alzheimer’s Society. This involves visiting researchers periodically who have received funding from the society, listening to them talk about their research plans, successes so far and issues that have come up. It is fascinating and very rewarding. There are 3 monitors attached to each funded research project. My play mates are the wonderful Louise Allen and June Copeland. We all travelled from our homes by train and met outside the station where we had a coffee before making our way to the university. They are experienced monitors so I was in their hands!
We’ve been attached to the research being carried out at Sheffield University by Professor Pat Sykes and Melanie Hall. Their research involves looking at the experience of children and young people who have a parent with dementia. Photo of all at the bottom but pleeease read about this valuable research first!!
This is such an under exposed issue. Due to many factors such as earlier diagnosis, people having children later in life, second marriages with second families etc etc, it has led to more younger children having a parent with dementia than ever before. This obviously has a profound effect on their very young lives.
Professor Pat gave us a run down of their progress so far. They had to be innovative in the way they found willing volunteers as they don’t access the normal help available as they’re age inappropriate, so Facebook was one route they went down. One theme that continued to appear is the public misconception that:
Dementia = Alzheimer’s = Old People
They’ve interviewed children from as young as 8 (obviously families are involved as well) and the stories they told were heartbreaking. What their research clearly showed is:
There is no support for these young children!!
Some older children told of the lack of support at school to enable them to juggle school and a demanding home life, which is criminal.
These young people have different support needs which are clearly not available at the moment. What 17 year old wants to attend a memory cafe that’s frequented by older people like me? They need to be able to meet people of their own age with similar problems who they can relate to and confide in.
Pat and Mel have identified and are continuing to unearth issues not currently addressed. Their education is clearly affected; their future concerns are very different from older people. Through simple ignorance they often feel unaccepted by their own peer group and so become isolated.
To have parents diagnosed with dementia later in life is bad enough but at least many people, by then, have developed the social skills and are mature enough to cope with the ensuing demands. These young people are at the start of their lives and are immediately at a disadvantage. Pat and Mel have only just broken the surface of the problem but at least the research has started. As Prof Pat said:
We often draw on storylines to make sense of situations, but dementia doesn’t have a script
A diagnosis brings us all difficulty in planning as there is no path or time line that the disease follows. I can only imagine the confusion this must create in the mind of the child and the difficulty the other parent must have in talking to the child about the disease.
Pat and Mel now have a wonderful plan to create an animation specifically for children. They’ve met with a BAFTA winning company who made the short film on the link below for children with cancer having to have radiotherapy.
This will obviously need further funding to undertake but is a much needed resource – I just hope the funding is out there. As always I had a wonderful day with wonderful people and I was so glad to finally meet everyone. I wish Pat and Mel all the best and can’t wait to hear about
The link below enables you to read a bit about the research and gives details if you’d like to contact them to know more.
If you’re interested in becoming a research network volunteer, have a look at how anyone can become involved by going to the Alzheimer’s web site for details: