Prioritising information for dementia carers

Earlier this month saw the annual Carers Week, which included a campaign to pledge support by saying ‘I care’.

As a nation we should all care – chances in are most people’s lifetimes they will either be a carer or know someone who is (take a look at these statistics from Carers UK for a reminder of that). I do, however, feel frustrated that as the years go by things aren’t improving rapidly enough for family carers. It’s over 11 years since my dad was alive and we were living our version of the unpaid carer reality, and from what I hear in my work little has changed for today’s carers.

The struggles for support, to navigate services and to look after yourself all remain huge challenges for family carers. Meanwhile, accessing social care is probably harder than it’s ever been, meaning that for many people there is little chance of getting any professional support before a crisis point occurs (I know crisis points well). This is truly scandalous given that most people living with dementia (and other conditions) would prefer to remain at home, and crisis care usually means either going into hospital or moving into a care home, which was the heartbreaking reality for my friend Suzy and her mum:

How can we make things better for carers?

Everyone has their opinions on what will help the lives of carers. I personally defer to carers on this issue, so if you are a carer and can find a few minutes (which I know is often impossible) do fill in the latest State of Caring Survey as championed below by Laura Bennett, a lovely lady who I’ve worked with in the past. Laura is a working carer herself, so understands better than most the challenges carers are facing. The data collected via this annual survey is used to campaign for unpaid carer’s needs and rights, so it’s worth contributing to.

Surveys and campaigns don’t change things overnight though, so from recent conversations I’ve had in my work about supporting carers I wanted to share some advice for professionals working with unpaid carers today.


  • Avoid information overload

When I hear about the tsunami of information carers are provided with by well-meaning professionals my heart often sinks. I know the vast majority of these carers will never find the time to look at all of the leaflets, handouts and booklets, and when something goes wrong or they don’t know something, they’ll feel the oh-so-familiar guilt of reprimanding themselves for not looking at all of the information they were given in case it could have avoided the problem they are now facing.

There has never been more information available in multiple formats, but if anything this is just making it harder to navigate and find what you need to know. So, if you are putting together or handing out a carers pack today, think about how you prioritise the information you’re providing. You may still want to give everything you have available, but sort it into sections and – most importantly of all – put a laminated 1-page key pieces of information/organisations sheet at the very front. Tell the carer about this – it should be their 1-stop shop.


  • What is going to help in a crisis?

The key question you may now have is what should be on that 1-page, 1-stop shop sheet. It would be lovely to include details of carer breaks, therapeutic interventions and financial help (all of which are very important), but the truth is most carers will reach for this when they are in a difficult situation.

I recall a 3-month period after my dad’s dementia diagnosis when the NHS and social care wrangled over who would pay for my dad’s care. We, with my dad, were left languishing waiting for assessments, meetings and decisions. In my dad’s case he was in hospital and not allowed to come home, but if you’re supporting your loved one at home and waiting for decisions from professionals, where are you going to turn to for help and support to keep going and stop you falling through the seismic gaps that currently exist in our health and care systems?

I think for most dementia carers the answer will be an Admiral Nurse (for other conditions, the equivalent professional). So absolutely top of my signposting list is the Admiral Nurse helpline and online support service (plus details of any locally commissioned Admiral Nurse to see in-person if this service exists).


  • And if you want to stop a dementia carer reaching crisis point….?

Then signpost to Dementia Carers Count, who provide numerous education and information sessions.

I train a lot of health and care professionals, many of whom have had years of education. Even at entry level, a person would need the Care Certificate to work in social care. So it seems to me utterly baffling that untrained family members are expected to look after their relatives with a complex condition like dementia having had no education in dementia at all.

You will make so many mistakes (we did) when you don’t understand what is happening in the person’s brain and the best ways to respond and support them. If you don’t have this knowledge you’ll disable them faster, exhaust yourself quicker and you’ll be in that crisis point before you know it.

So for me, whilst Admiral Nurses would be Number 1 on my 1-page, 1 stop shop support sheet, Dementia Carers Count would be Number 2. You might be tempted to put Carers Assessments as your Number 1 because of the legal requirement for these to be offered, but honestly if it’s 3pm on a Sunday afternoon, I haven’t slept in days and I’m at a compete loss with how to support my loved one, the recommendation to speak to my local social services department isn’t going to be much use.

Real, practical, understanding support is what every carer needs, and I long for the day when that’s what every carer has. Then I think as a country we could truly say ‘We care’.

Until next time…

You can follow me on Twitter: @bethyb1886
Like D4Dementia on Facebook