It had been a tense Christmas and New Year because my daughter, Doris, was waiting to hear if her heart’s desire was to be realised and that, subject to getting the right exam results, she would get a place at Cambridge to read medicine. The college had said they would send out letters on January 2nd and early on the morning of the 3rd we were on our way home from where we’d spent the holiday.

The atmosphere in the car was fraught. Doris, understandably anxious, couldn’t stop herself repeatedly wondering out loud if the letter would have arrived and what it would say, I was angsting about what to do and say if she had not got in, and her younger brother, JD, was trying to divert her with daft jokes and silly comments. All of a sudden her dad said, in a snide voice, ‘Oh for God’s sake shut up. Cambridge doesn’t take people like you’.

For a few seconds the shock and disbelief at his words was a distraction, then Doris burst into tears, he became mute, and the rest of the journey was spent in total misery. Long story short she did get in, is now qualified and practising, but those words and their delivery left a legacy — as did the time when he stormed out and disappeared for 3 days because Doris had said she didn’t like the (frankly horrible) desk he purchased as ‘an investment’ and insisted she accommodate in her bedroom.

Three years on

Fast forward three years. I’m working overseas, seven hours behind UK time and I’m woken at two in the morning. JD is on the phone, very distressed and spilling over into tears. Between sobs he tells me his dad had shaken him awake at 4am and with lots of shouting, abuse and physical violence, had made him sort the rubbish for the recycling collection. JD’s protestation that he had an important exam in his weakest subject at nine cut no ice. That exam had to be re-sat because by eight in the morning he was in the grip of a migraine, and couldn’t even see the page, let alone write sensible words, and consequently failed. He was OK in the end, got a good retake result and six years later graduated top of his cohort, although his already shaky academic confidence was damaged further by that episode.

Lots of kids experience abusive parents, or parents who are unsupportive (or worse) of their education, and quite a few probably fear for their lives every time they get in the car with a mum or dad who’s an erratic driver as did mine every time they drove with their father. For my family however, the events described above came early on in a trajectory that escalated in terms of the bizarreness and awfulness of the incidents and which culminated in their dad being diagnosed with young onset vascular dementia.

Police call outs, seizures and sulks

Our journey has not ended yet and five years on from diagnosis we have gone through numerous police call outs to find him when he slipped out of the house and went missing, many tantrums and sulks, violent episodes, countless sleepless nights due to constant wandering, urine and faeces deposited in inappropriate places, and daily falls, bumps and scrapes caused by seizures and an inability to see clearly or walk over different textures. We eventually felt that we couldn’t keep the man safe at home and nor did I feel able to give up my work, income and sanity to look after him, so he is now in a care home, unable to put together a sentence, apparently interested in nothing and no-one, and moving inexorably towards an untimely death.

Watching and reflecting on what happened to my kids (and to me) over the years led me to set up a project, funded by the Alzheimer’s Society in the UK, to investigate the perceptions and experiences of other children and young people who have a parent with dementia.

Sharing experiences

Advertising the project on the internet demonstrated how little information is out there about young onset dementia because we immediately started to hear from people looking for advice and support and who wanted to share their experiences.

Using an approach that focuses on collecting personal stories Dr Mel Hall, the research associate on the project, has interviewed 16 youngsters in depth, some more than once, and we are building up an amazing database of what it’s like for these kids including their thoughts on:

how they are fed up with the public perception of dementia = Alzheimer’s = forgetful old people

how the sorts of behaviour and emotional changes their parents exhibit impact their lives, affecting their education, their career choices, their personal relationships

how they experience ‘cancer envy’, because people respond in a far more positive way to those with cancer than they do to those living with dementia

how they feel marginalised, isolated and without any information or guidance

how they suffer guilt and distress because of their negative feelings about their parent; their fears of inheriting the condition.

We need to raise public awareness of young onset dementia and what living with it can be like for family members because it is by only by telling stories that policy might change and services improve.

Read this please and spread the word.

Find out more about our project, or get in touch with us, through our website - Children and Young People with a Parent with Dementia