WHEN they were just 13 and 15 years old, Professor Pat Sikes’ children had to witness their father show the devastating symptoms of young onset dementia - including going missing, obsessive hoarding and verbal abuse.
Her own family’s experience has been mirrored by young people around the country, who have contributed to a study led by Prof Sikes at the University of Sheffield to give a voice to children young adults who are living with a parent with dementia.
There are estimated to be at least 42,325 people in the UK under 65 living with a variant of young onset dementia.
Prof Sikes, whose children are now in their 20s, said: “Before and after diagnosis my children had to experience the police being called out to find him when he slipped out of the house and went missing, many tantrums, obsessive hoarding, violent episodes, verbal abuse, falls, unpleasant incidents around his failure to find the lavatory, and countless sleepless nights due to his constant wandering.
“The children involved in our study all had similar stories to tell including a little boy whose father was eventually diagnosed with dementia after they sat down together on Christmas Day to play with his new Lego and his dad simply don’t know what to do with it.
“Another girl who had always been very close to her dad was devastated when he began accusing her of stealing things and became very aggressive towards her – something which is not unusual behaviour for someone with certain forms of young onset dementia.”
Funded by the Alzheimer’s Society, the researchers, from the university’s School of Education, examined the perceptions and experiences of children and young people who have a parent with dementia by giving them the opportunity to tell their stories.
It is believed to be the first time children have been put at the forefront of research like this, and it aims to raise awareness of the impact the disease has on the youngsters – especially their education, and on family finances.
Along with research associate Dr Melanie Hall, Prof Sikes spoke in detail to 22 young people aged between six and 31 years-old. Because of the age profile usually associated with dementia the assumption is that partners or middle-aged children are the family members most affected but this is certainly not the case.
“Many of the children we spoke to had ‘cancer envy’ because they believed that if their parent had cancer at least there was hope of a cure,” said Prof Sikes.
“With cancer people offer sympathy but with dementia people often say unhelpful things like ‘they are still the same person’ or ‘at least they can still be at your wedding’ but it’s not that simple and bodily presence alone is not enough - if the parent is unaware of what is going on, they can’t share. And if they were ‘still the same’ they wouldn’t be being violent or shouting or swearing at their child.”
Professor Sikes added: “As one young woman put it, ‘I get used to it and then she gets that bit worse and I get upset. Every few weeks, or even less, there’s a new normal and it’s so unpredictable’.
Olivia Barnett was just 19 when her mother was diagnosed. Now 21, Olivia decided to take part in the project because she felt she had been left in the dark about her mums condition.
“I felt like I trawled through the whole of Google and couldn’t find anything that related to my mum’s condition or my experience aside from medical journals”, said Olivia. “It was very upsetting feeling so alone, especially when you’re a teenager and your friends can only relate to you by referring to a grandparent with dementia. I was keen to take part in this project so that other people know they’re not alone – and so that there is a wider awareness that dementia isn’t just an “old person’s disease”.