In this blog I wanted to share two events I’ve been involved with. It is great fun to get out and about, especially when family carers or persons they care for attend. It helps to keep me grounded and keeps my ears perked up to issues carers face and possible solutions or support mechanisms. First up was an event at a Worcester pub, which was a first for me! This talk was during a national festival known as Pint of Science which encourages events all around the UK to engage members of the public in science, in its broadest sense. My talk was an overview of dementia carer’s issues and every time I show the relevant statistics, I am horrified. I’ll never glaze over these statistics as they are shocking every time I see them. What I don’t see is an adequate policy response to address those figures but if I dwell too much on that, it could be overwhelming and distract me from what needs doing, which in my role is to chip away through research and influencing wherever I can.
- 20% of female carers have gone from full-time to part-time employment as a result of their caring responsibilities and 17% felt penalised at work
- 36% of carers spend more than 100 hours per week caring for a person with dementia
- 63% of carers for people with dementia are retired while 18% are in paid work. 15% of dementia carers say they are not in work because of their caring responsibilities
(Source Alzheimer’s Research UK)
Next up was a group talk at Hay Festival in Hay-on-Wye on one of the hottest days of the year.
I was privileged to be asked to speak with colleagues about ‘Dementia: The Biggest Health Challenge of the 21st Century’ and I gave the family care perspective.
Presenters: Professor Rik Cheston (University of the West of England), Professor Tracey Williamson (Association for Dementia Studies, University of Worcester), Professor Dawn Brooker (Association for Dementia Studies, University of Worcester), Jeremy Hughes (Alzheimer’s Society) and Keith Oliver (personal perspective of living with dementia)
My audience had grown from 20 in a pub to 200 in a marquee! I talked about the term ‘carer’ and what that meant to people who may or may not see themselves as ‘a carer’. I shared anecdotes of family carers who did not like the term ‘loved one’ or who saw themselves as simply ‘caring about’ not ‘caring for’ a person with dementia in their lives. I looked back at how caring had changed over the last few decades and how support mechanisms were growing for carers, including Dementia Carers Count own courses for carers. I considered what was left to be done – development of carer focused support and carer’s needs-led technology, help for carers selecting technology and help with the skills to use it.
- Where care takes place is changing – frequently at home following a huge growth in care home numbers
- Who cares? Sandwich generation often caring for older and younger persons
- Growing recognition of carer support needs and support provision growing including or specific to carers
- Caring for persons accurately diagnosed with dementia, often younger, not misdiagnosed as ‘stress’ or ‘depression’
- Growing appreciation of the diversity of carers
- Recognition of families living away
- Busy digital, often-working society
I tried very much to give a balanced view. Many carers have highlighted to me the importance of not simply viewing caring as a burden. For many the experience of caring opened up new ways of seeing things and enhancement to their relationship with the person they cared for, opportunity to learn new skills and take up new hobbies and to develop new friendships. I then highlighted a few possible research topics that I was planning to look into. I was humbled to be approached by some carers in the audience afterwards who were glad I hadn’t just focused on the negative or given a glossy view of caring.
At both of the events I have blogged about I was given a gift as a gesture of thanks. Not needed but I will share a picture of them with you – the Pint of Science glass and Hay Festival flower!
Future research topics this highlights: Issues around how carers manage their mood, especially those affected by the menopause; how trauma affects caring; effects of sleep on caring; unhealthy coping behaviours of carers and how we can help address these.
Professor Tracey Williamson PhD – DCC Professor of Family Care in Dementia