Finding out you have dementia is one thing, but then finding services are tailored for people who are much older than you can be an added blow. As researchers, we have found people with young onset dementia (before the age of 65) want to know things that they cannot readily find from existing services. For example, dementia is not just about memory loss and participants in our interviews said they wanted to know the ‘early warning signs’ of dementia so they knew what to look out for and seek help earlier. Others wanted greater psychological support at the point of diagnosis, ideally with someone to be there throughout their dementia journey such as a counsellor.
Some people with dementia felt that information about exercise and healthy activities was lacking and wanted more readily available information so they could make healthy lifestyle changes. This they believed would help them keep active and therefore independent for longer whilst preventing loneliness.
Family carers on the other hand felt peer support mechanisms were under-developed. They want help to identify practical and psychological coping strategies and they believe that carers have their own coping mechanisms but just need help to share them. A particular need was for greater information in a format that is digestible and timely.
This week sees the start of the Economic and Social Research Council (ESRC) Festival 2017. The ESRC Festival of Social Science takes place from 4-11 November with over 300 free events across the UK. The festival, now in its fifteenth year, is designed to promote awareness of social science research by enabling scientists to engage with the public through debates, talks, workshops, seminars, film screenings, theatre, exhibitions and much more. The festival is a unique opportunity for people to meet with some of the country’s leading social scientists and to discover more about the role research plays in their everyday life.
A full programme is available at www.esrc.ac.uk/festival. Join the discussion on Twitter using #esrcfestival. Logos for the festival can be downloaded from the ESRC website.
Our own ESRC event is a dementia services event on November 7th at Salford Museum & Art Gallery, being delivered jointly with Manchester Metropolitan University. As well as hearing about recent dementia services research at both universities, including that outlined above, we will be seeking audience views about services and their tips for others living with dementia.
For example, family carers have told us they can better support each other by sharing positive statements such as these:
“You cannot control the illness – it is OK to step back”
“Take calculated risks”
“Accept when you need help”
“Put yourself first sometimes”
“It’s OK to get it wrong”
Possible ‘early warning signs’ which carers and people living with young onset dementia said to look out for and seek help about include:
“When you can’t find the words”
“Covering up through joking”
“Writing down instructions wrongly”
“Getting lost on a familiar route”
“When the above become regular or a problem”
We need other examples of positive statements to include in a booklet and video we are producing as an output from our Young Onset Dementia study funded by the Booth Charities Salford. We are also consulting on other ‘early warning signs’. If you have experiences of young onset dementia and/or want to hear more about involvement in our study you can contact Dr Tracey Williamson on T.Williamson@salford.ac.uk or tel 0161 295 6424. We especially need to interview people from less heard populations living with young onset dementia.
Blog author: Dr Tracey Williamson, Salford Institute for Dementia, School of Health & Society, University of Salford
Acknowledgements: Young Onset Dementia study Advisory Group and research team – Luisa Rabanal, Dr John Chatwin, Chris Sewards, Andy Walker, Maria O’Sullivan. MMU research team led by Prof Josie Tetley