It’s often been said that knowledge is power, and I’ve always advocated that’s never been more true than for unpaid family carers.
I’ve frequently thought it quite crazy that as a society we expect/accept/encourage family members, friends and neighbours to support those they love who have care needs, and yet we offer them so very little in terms of help for themselves.
We would never, ever expect people going into caring roles professionally to do so without any training in 2021 – indeed, the Care Certificate is mandatory training for social care recruits. Yet as a society we are quite content to have millions of unpaid carers muddling along, often lost, frightened, alone and feeling out of their depth – especially when supporting a loved one who has a complex condition like dementia – most likely because unpaid carers are a useful, cheap resource.
More knowledge-sharing PLEASE!!!
I’ve often been asked, what is the one thing I believe – as a former carer myself – would make the biggest difference to carers of loved ones with dementia? You might think I’d say more money or more respite support. But actually, I think more knowledge of dementia would be, for most people, the biggest help.
Two recent tweets from former carers really highlighted this to me:
It is with great sadness that I have to say that my darling mum slipped away peacefully in her sleep on Saturday morning. She was 98 years young. She never considered herself old. Thank you to all those who helped me at the beginning of her dx @HilaryMarmot @bethyb1886 and others
— Sylvia Penny (@pennysfromWales) October 26, 2021
— Kim Mace (@mumbythesea) November 19, 2021
Sylvia and Kim’s kind words reminded me that helping people to understand dementia when they are plunged into caring roles following a loved one’s diagnosis is vital. It literally saves family carers from what can amount to significant mental and physical health problems that are associated with feeling lost, frightened, alone and out of your depth.
I should point out at this juncture that I don’t, in any way, attribute these effects on family carers to the person who needs care and support. They are a consequence of a person taking on a caring role that they are utterly unprepared for. Even with some preparation and knowledge it can still be very difficult, but lets give people the maximum of what we can. There is no shortage of knowledge out there, whether it’s being shared by former carers like myself, people with dementia, organisations like the Alzheimer’s Society and Dementia UK, or through health or social care professionals, and yet so little sometimes gets through to the people who really need this knowledge the most.
You don’t know what you don’t know
So many family carers don’t necessarily know where to turn or what resources to access. They may ask themselves questions like:
- What should I be asking about?
- What information is to be believed?
- What resources are concise enough to be quickly digestible?
Yes, carers may be given a pack of information following their loved one’s diagnosis, but if anything it might be too much information all in one go.
Of course the dream is that everyone would have access to their own Dementia UK Admiral Nurse following a dementia diagnosis, but that is still a long way from reality, albeit there is the Admiral Nurse Dementia Helpline available to all.
It’s often said that you don’t know what you don’t know. But ignorance isn’t bliss where dementia is concerned. A more useful standpoint might be forewarned is forearmed, but without overwhelming a person or making them lose all hope of positive times ahead (because they can and do exist).
Drum-roll for the Dementia Carers Count Virtual Carers Centre
This is why I’m championing a new carers resource: The Dementia Carers Count Virtual Carers Centre.
The Centre offers a good balance of information and accessibility, and has been built using the knowledge Dementia Carers Count have accumulated from delivering numerous, highly successful face-to-face training sessions for dementia carers.
Yes, it’s virtual, which means it won’t suit everyone, but the pandemic has inevitably forced more people to access online resources so its reach may be greater now than it might have been two years ago.
What does the Virtual Carers Centre offer?
The standout service from the Centre is, for me, their live online learning. These sessions enable learners to gain knowledge and interact with each other and the practitioners involved. They are free and cover lots of different topics on various dates and times.
The Centre also has sections to explain how the brain works and the changes associated with dementia, being a carer, how to cope with the everyday challenges of caring for a person with dementia, how a carer can enhance their emotional wellbeing (including physical and mental health and resilience), ways to promote carer health (carer breakdown often happens when carers become too busy or too exhausted to look after themselves properly), and a section on legal rights.
Information is delivered in both video and written formats and the overall style and feel of the site is friendly, informative and everything you’d expect from a charity I’ve long championed for the amazing work they do to help dementia carers feel more empowered and less isolated.
Spread the word
As you can probably tell, I love this resource. Yes, it isn’t the same as every dementia carer having their own Admiral Nurse, nor will it ever be able to replace some of the camaraderie and friendships that have come out of the in-person dementia courses that Dementia Carers Count run. But on the plus side it’s accessible from any device and it doesn’t involving travelling anywhere.
It’s a big step forward in education for dementia carers, and that can only be a good thing. I’ve learnt so much from reflecting on my own experiences of caring for my dad, but that learning never benefited him since he’d already died. If this resources means more people with dementia and their families feel better equipped to cope, and perhaps even thrive, then it can only be a good thing, so spread the word!
Until next time…