I want to talk about what makes a General Practice, where we go for most of our healthcare, dementia friendly.
I was diagnosed with mixed dementia nearly five years ago, aged 63. I asked my GP twice to be referred for diagnosis, in previous years, but he said there was no point because there was no cure or treatment, and nothing would change with my medications. What was the point of knowing?
Third time round, two years later, I insisted. After lots of scans and tests I was told I had both vascular (which I expected) and Alzheimer’s (which shocked me).
Result. Donepezil. The drug that woke the rest of my brain up to compensate for the diseased parts.
That same GP is still telling patients the same appalling story.
I know this is changing across the country, but GPs must learn that we need to know of we have dementia, or something else. Almost everyone is relieved to know, because they can at last understand their symptoms and get on with living.
Of course dementia is not welcome, but just think how your thoughts and whole life become infected when you gradually find it difficult to do the things you have always taken for granted.
Doctors are not gods. Patients need to be, and have a right to be, in control of their lives.
So, doctors, when a person under 65 or 70 walks in and tells you about cognitive difficulties, remember it might be dementia. Help them find out. Don’t tell them you lose your keys too: it’s just getting old. Don’t assume it is depression. Or stress.
Now, practice staff, including doctors of course, do you talk to the person beside you or to your computer screen?
I remember one doctor who did this right through a consultation, some years ago. But just last year a practice nurse did it to me. I had been called in for a follow up to a blood test, but she could not work out why. And instead of turning to me to ask me she just stared at the screen and scrolled through, muttering and ignoring my attempts to explain.
This, for anyone, is rude. It blocks communication. It is dismissive. I became angry and shut my mouth and thought of something else till she turned to me. Eventually she said ah yes, we didn’t need to see you did we.
For a person with brain disease, who struggles to hear, to decode what they hear, to create meaning from a string of words, it is essential that they see the face, mouth and eyes of whoever is speaking.
It is essential that you staff make a connection. Smile. Put the person at ease. Any sort of anxiety causes instant confusion and fog, and you cannot remember words, or why you are there at all.
Take time. ‘Seek first to understand, then to be understood’.
Receptionists are the gatekeepers, and the face of the practice. Smile. You may be under pressure. It may be a bad day. But the patient is in front of you because they are having a bad day too. Maybe a bad year. And your job is to help them, not make them feel guilty.
When I arrive and sign in the screen either gives me a green tick, or a red cross. “Too late. Go to reception.”
Dementia, believe it or not, affects awareness of time. It affects memory. It affects your ability to sequence things. So it is no surprise that I increasingly arrive late for appointments, or just miss them. Yes I get text reminders. The hospital ones demand so many button pushes that I want to smash the phone.
But what is the good of a reminder if you have a memory of a few minutes or less. Or if you see a note you write yourself on the fridge white board every day but ignore.
I arrive one minute late. Red cross. Late. Go to reception.
I arrived seven minutes late. Red cross. Late. Go to reception. Receptionist is busy. I wait two minutes in a queue. She tells me I am ten minutes late so I have missed my appointment. I say no, I was seven minutes late. She sucks her teeth and sighs and says take a seat then.
How do I feel? Annoyed. Treated like a naughty child. Am I able to relax and think about what I am going to say to the doctor? No.
Get the system changed. Be kind. Be compassionate. We don’t go to a doctor or nurse for fun. It’s because we need help or advice or comforting.
And by the way, it’s a bit rich being told off for being a few minutes late, when the doctors usually run half an hour late. You just expect us to soak it up, and we do. Because we have no choice. But if we don’t mind waiting, you shouldn’t either. Let’s be equals as human beings and trust each other.
Is your waiting room friendly? Is it lines of uniform chairs, or a variety of colours and heights and designs of seats? Does it feel like a prison meeting room or a friendly sitting room?
Do the signs help the patients? One practice I visited had staff names on the wall beside the door, not on the door. Which side did it refer to?
The name signs were tiny, high up, and a dirty brass colour font on brown. Not large, contrasty, and at 160 cms height. And in the right place.
Another practice uses handwritten names on paper, stuck with sellotape or bluetac. They change around seemingly daily, so we don’t know where to go. Confusion puts us on the back foot before we start trying to explain why we are there.
Does your practice have notices of all sorts everywhere, in corridors, on the entrance door, on the waiting room walls? Do you have racks of useful information leaflets?
Does anyone ever look at them? To a confused person they are just confusing, and reinforce the knowledge that they can no longer understand all this information in front of them. Get rid of it all. If a patient needs information give it to them when you meet them. And explain it.
Do you have a record of every unpaid or family carer in your Practice list? Does it flag up when you pull up their notes? Do you make a point of asking if they are coping, or if their health is suffering because of their caring work? Carers of people with dementia have worse health than those they care for because they don’t look after themselves. So do it for them.
Care plans. Let’s agree that the EMIS (or other) in-house system does not provide a shared plan for living. I think that GPs round here regard (perhaps for QoF points) the system record as a care plan. In this way Shropshire claims 95% of patients with dementia have a care plan! Well sorry. This is not a shared plan for how to live well, and how to meet a person’s needs regarding ‘what matters to me’. So let’s do meaningful plans. The doctor doesn’t have to lead on this, just contribute. But someone in the practice has to be responsible.
Do you offer double appointment slots? I bet you are saying yes, of course. But do you publicise these? Do you tell all patients living with dementia that they can book a double slot? People living with dementia often need extra time to remember, to think, to fond the words, and to explain. And you will need extra time to understand what matters to them. Please just offer doubles. Better to have a few minutes free at the end and catch up (or breathe deeply) than to rush and end up later for the next appointment.
Are your staff, including doctors, trained to understand and work with people living with dementia? I mean tier two in the dementia skills model. They should be. Because if they don’t understand how can they possibly provide compassionate, person centred care?
And dementia friends awareness is not, repeat not, training. It is just awareness. A brief introduction.
Do you play music in the waiting room? Try asking people with dementia if they find it relaxing or too loud or if it interferes with their thoughts and preparation for their appointment. What’s wrong with quiet?
So, there is a lot you can do to make it easier for your patients who live every day and every hour with their dementia to get the help, care and understanding they need and deserve in order to live as well as they can.
And remember: 25% of people with dementia only leave their homes once a month. There’s a good chance it will be you who they visit. Make it a good day for them.