One of the things that is not certain for a family member caring for a person with dementia is what the future holds. How long a cared for person will retain their abilities and how well a carer may cope with challenges they may face, cannot be predicted with any certainty. Whilst there are many happy memories yet to be made for many, if we are open about it, all carers at some point will face situations that test their resolve and endurance. Just like on an aeroplane when the attendant suggests you put on your own oxygen mask before tending to others, family carers and friends who care for a person with dementia need to look after their own health and well being to be better able to support a cared for person. Beyond what carers need to do to support others, they themselves have a right to be adequately rested and sufficiently well, whenever possible.
But who cares for the carers? Well, nowadays, thanks to organisations such as Dementia Carers Count and Carers UK, there is a growing amount and better quality of much needed support for carers. Government are getting regularly lobbied for funding, community groups facilitate social gatherings and individual carers provide peer support or good old-fashioned friendship to each other. Dementia Carers Count provides tailored residential courses to teach carers to be more resilient and better equipped for their caring activities. The University of Worcester’s Association for Dementia Studies provides the evidence, such as this review commissioned by Dementia Carers Count, of what works best so that initiatives aimed at family carers are likely to work if they use best research evidence.
Yet the problem doesn’t seem to be knowing what carers need, it’s more a case of how to get it and how to sustain it. We have all seen pilots of this and that and temporary funding which has often led to initiatives that have been shown to work but then aren’t continued. This can be hugely frustrating not only for those who develop those projects and schemes, but also for the carers who use them. The power to create better futures for carers lies largely within carers’ own hands and we all know carers who do amazing things; whether that be on the national stage or at home. Yet we must keep striving to get that bit of extra resource, that helping hand or that few minutes of social contact. Listening to and understanding carers’ experiences can impact positively and massively on their day.
In my new role as Dementia Carers Count Professor of Family Care – a partnership between Dementia Carers Count and the University of Worcester – I have made a pledge on Twitter to do my bit to enhance the experiences of family members, carers and friends of people with dementia. They weren’t just words. It can be hard to look to the future, but if we don’t we can miss an opportunity to plan, take steps to support carers to prioritise their own health and well being and develop ways that stand the test of time in supporting their changing needs over time. Research and education are just some of the ways we can make a difference to people’s life experiences. We need to make time for carers to reflect on what has happened to them, equip them to deal as best they can with the here and now, and bolster them for whatever the future brings. Together we can achieve more. Anyone who has a view about how we can enhance carers’ future experiences is welcome to get in contact with me.
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