Supporting Derek: living with a learning difficulty and dementia

Derek's starting to feel his age…but, unlike many of us he doesn't have any family around to help him out. He never married or had children of his own, and - as a late and only child - he has no siblings either. Derek's never found it that easy to make others understand him, but now it seems to be getting even harder.

His friend Peter and carer Theresa just don't get why he's so often confused and upset. Why does he seem frightened when he goes into the bathroom - perhaps he thinks it's a stranger looking out of the mirror? Why won't he eat his dinner - he can't really tell what's food, what's plate and what's table cloth? Why can't he find his own bedroom door – maybe it needs to be a different colour from all the other doors? And why is his dear friend Peter starting to behave oddly towards him – is it because he is feeling resentful about the increasing amount of time Theresa gives to Derek instead of him? Couldn't someone take the time to explain to him, simply and honestly, what's happening to his old friend?

Derek is one of a growing number of people with a learning difficulty, who has also developed dementia. Due to improvements in medical treatment, half of people with Down's syndrome will now survive into their 50s or beyond. But research has also shown that people with Down's syndrome are more likely to develop Alzheimer’s disease – and at a much younger age.

Like Derek's carer, Theresa, care staff in the Joseph Rowntree Housing Trust are keen to develop their skills and understanding of those they support - some of whom are, or soon will be, facing the same challenges as Derek. It was these frontline workers who identified the need for our new practice development pack, 'Supporting Derek', and, together with people with learning difficulties, they also helped to develop it.

The pack - which features a training guide for those working with people with learning difficulties who have, or may develop, dementia – includes a DVD, featuring real care workers and people with learning difficulties (actors from Guyz n Dollz drama group). The DVD powerfully portrays life from Derek's perspective and helps us to understand how, as things change, his behaviour, relationships and needs are all affected.

It's not rocket science. There are so many simple ways in which people like Derek can be supported. By understanding that they will have a different sense of what is real (or a different reality to us), we can adapt their environment (or design it better in the first place), ensure the right level of stimulation, recognise and manage pain, and respond to changes in communication. We can also help friends and family understand what is happening and stay a part of their lives. Most importantly we can ensure that Derek keeps as much control as possible, and that he continues to live a meaningful life, based on strong, personal and respectful relationships.

Those already experiencing this life stage are the real experts. By listening to them we can better understand what they want and value – from life, not just from services. That's why GOLD, a group of older people with learning difficulties who have been meeting together for over ten years, were also involved in the pack. And also why they, with the help of Cally Ward (whose adult son has learning difficulties and who has worked with people like Derek and their families for many years), will also be writing their own 'Viewpoint' for JRF, to be published in spring 2011.

Old age is not about 'them' – it's about all of us. We're all heading in that direction, and some of us will require a lot of support. Our current programme, 'A Better Life', has highlighted the growing numbers and diversity of older people with high support needs, and the many challenges they face whatever setting they live in . We know that one size doesn't fit all – but we also know that, whatever our age and support needs, we all wish to be treated as citizens. Hopefully practical tools like 'Supporting Derek' will help us – and you - to achieve this.