What I want you to remember
1 Terminal, irreversible, unstoppable, brain disease results in dementia.
2 Dementia is not about just memory.
Symptoms may include:
• Loss of balance
• Inability to find words
• Sudden mood changes
• Brief Disorientation
• Difficulties with Perceptual recognition
• Inability to judge distances
• Inability to plan tasks
• Inability to answer direct questions
• Can no longer type, or hits wrong keys continually
• Can type fluently but difficulty with words (Wendy)
• Sensory changes: hearing, smell, taste…
• Loss of concentration
• Unable to sequence familiar tasks
• Decision making (eg meal choices) …does not equal lack of capacity
• Loss of inhibition
• Loss of names…cannot fix new names
• Loss of recognition of visual clues, such as faces, places…
• New memories cannot be laid down
• But early memories are accessible and these are what locate you in your life. So, eg, you think your children are coming home from the bus at 4pm. Or you have to get dressed for work at the factory. Or go out in the middle of the night in the car to catch a burglar.
What do you think this can feel like?
How would you feel if you were in a bed, in a room, you did not recognise. With people you did not know? Feeling ill and having things dome to you? Hadn’t a clue where you were or what had happened to get you there?
BUT BUT BUT
We start somewhere, and we gradually decline. It is not sudden, unless a stroke.
We have the disease 20-30 years before we notice.
We get diagnosed five years later.
We still live on independently for many years, gradually losing cognition and abilities.
Do NOT ASS U ME from a diagnosis on a record…
3 Every single tiny action is controlled by the brain
…and will be disrupted if that particular bit is diseased. This includes things that happen without active thoughts…like digestion and bowel control.
Brain disease therefore may and does affect any element of a person’s physical and mental existence, from balance, to continence, to word finding, to mood, to memory. And much more.
4 Brain disease can present symptoms at any age,
even though most cases will be at 70+. 5% of people with dementia are aged between 30 and 65. Watch out for these, who you may think are stressed or depressed.
Very commonly undiagnosed in hospitals.
Causes significant later cognitive decline and higher risk of dementia.
Must be diagnosed and treated.
Really important to find out a person’s usual mood and personality…ask family or friends…
And delirium can be caused by confusion and anxiety, such as caused by disorientation after hospital admission. Hence the need for orientation and dementia friendly environments.
And not moving person living with dementia patients during their stay, except for good clinical reasons.
6 People with a diagnosis often retreat into isolation and despair
They feel bereaved. This makes their symptoms worse, and their lives miserable. In the community, your job is to enable them to get back into their communities, to socialise, to do what makes them feel good and smile.
7 You cannot expect to understand a person living with dementia in just a brief conversation.
The person needs time to gather thoughts, find words, reflect, communicate. And you need to ‘hear’ them, so give them double appointments. Fetch them back for a proper session. It will save you time in the future.
How will you get a history?
How will you know if they are in pain, if they are later stage?
How will you avoid asking direct questions which they cannot answer?
How will you find out unmet needs? Or even recognise that there may be an unmet need?
8 Remember, above all, that just like any other disease, there is no one template that fits all.
A person with dementia is like no other person with dementia. Who knows which of the 50 billion brain cells are affected? You certainly don’t. Understand/see the person in front of you, not a stereotyped label.
Once you have met one person with dementia…you have met one person…
9 Do not assume that if a person has difficulty remembering things (and that does not affect us all) there is no point in asking us to do something.
Do, however, help us to recall what you said. Write it down for us, or ask us to do so. Ask us whether we use any tricks at home to remind us, like Alexa, or post it notes. Help us get these invaluable aids to living.
10 In a hospital, when you talk to us come down to our eye level.
Sit on our bed. Draw up a chair. Come close. Let me read your lips. Talk to me. Allow me time to take it in, reflect, and answer you. Allow me time to ask my questions. If it’s noisy take me to a quiet area for our conversation, or get others to be quiet. Write things down for me to keep and read later.
11 If I am upset and behave in ways you don’t understand,
it’s because I am frightened or in pain, or just don’t understand what’s going on. Find out what it is. Don’t drug me. Don’t tie my wrists. Don’t lock me in. There is always a reason, and you can do something about almost every cause.
Find my unmet need
12 Learn about my life
from my family and make sure you read my This Is Me document. If I don’t have one make sure I get one! Use what you know about me to talk to me about what I can remember from my past, and to find out what gives me pleasure. My preferences and habits.
13 Remember that if you take time to understand me
I will stay in your hospital for a shorter time, and you are less likely to see me back again. It will be good for me too!
14 Every time we meet, tell me who you are and what you do.
If you need to do something to me, like take blood, manipulate my leg, palpate my tummy, take time to explain to me before you start. I may not understand if you cause me pain. I may think you are attacking me. Or you might remind me of a horrible experience from childhood, like abuse.
15 Be patient. Smile.
Take your time. Even if you are run off your feet and knackered.
16 Assume first that, given time, I CAN understand.
Assume I have capacity. Assume I can make decisions. (Even if you disagree.) Only if it is clear after trying that I cannot, talk to my family carer or friend. But check first that this is the person I trust and who knows me best. This might be my neighbour if family rarely visit.
And do not assume that family best know my wishes. They may rarely see me. They may want resuscitation at all costs, while my friend may know that actually I have said I want simply to die. Check who is best placed to tell you what my wishes are.
Next of kin have no legal right to make decisions for me. It is for you to work out what is in my best interest, in accordance with my previously expressed wishes. The only exception is where there is a power of attorney in place.
17 If I am not eating meals at meal times
offer me snacks, bite size, cake, anything. Keep putting them in front of me, where I can reach them.
Give me drinks that you know I like, in a cup or mug I like using. Not a horrid little plastic thing.
18 Don’t ask me direct questions if you know I have memory difficulties
I may not be able to find an answer.
Have you had anything to eat or drink today?
Is your pain worse or better than yesterday?
On a scale of 1-10, how is your pain?
Which medications do you take?
Find work arounds. Like writing on my arm!
Use Abbey pain scale.
Use pictures is necessary, eg for food choices.
Don’t offer multiple choices, just two. This or that.
19 Talk to family or friend carers
Involve them. Provide them with information, progress, discharge estimates and plans.
But remember to to talk to and listen to the patient first and foremost. They can be included, and involved, if you take the trouble and time.
Remember John’s Campaign. Allow carers to stay with the patient as much as they wish. Provide somewhere to sleep if at all possible, like a recliner chair, or a mattress on the floor.
19 BAME related issues
Have different cultural beliefs and attitudes to dementia. They may see it as a mental illness, as a curse, as something shameful. They may keep it hidden, and delay diagnosis till late stage.
Plwds may lose their learned English and revert to mother tongue, and be unable to communicate with family. Or you.
Family may choose to interpret, but not relay all the information or ask the questions you need answering. Esp about family care. You may need to get an independent interpreter.
Don’t assume that BAME families ‘look after their own’. Ask the right questions. Find out. Ask the patient in confidence. Elder abuse is not uncommon.
20 LGBT related issues 🌈
How many of your patients are lgbt?
Lgbt plwds often hide their sexuality, for fear of discrimination.
In carehomes, plwds can get hounded out by residents if they find out, so plwds will even forbid visits from their gay friends.
In dementia, plwds may revert to younger times of persecution and how they felt before coming out.
Which bay do you put a trans person living with dementia in?
I could go on, and on…but these are what every health professional should remember and live by.
You CAN help us to live well, as well as we can, and to enjoy happiness.
We CAN continue to socialise, to do what makes us smile, with a little help and understanding.
And towards the end you CAN enable us to die well.
I asked for suggestions from twitterati for what I should include in a recent talk to doctors. This is what they said.
• Respect the caregivers
• Acknowledge their courage
• Appreciate their efforts
• Eliminate any distractions
• Smile when talking
• Make eye contact
• Shorten your sentences
• Ask uncomplicated questions
• Wait for answers
• Listen with patience
• Write legible instructions
• Participate in research
Tell them about @JohnCampaign which will help the medics and the PLWD in hospital.
Stress that changes in behaviour are probably due to unmet needs that the person is struggling to express. It’s not just ‘the Dementia’
To be spoken to, not ignored. Treat with respect how would they like to be treated if they were the patient. To be given the time to talk and explain, not rushed. LISTEN to the patient
Not sure if you’ve already given your talk, if not, suggest to doctors that they always consider what’s best for the whole person and not just for their medical condition. To do that they need to know something about the person, what matters to them. #patientsarepeople
There is focus on support with eating when in hospital but not with toileting. Mum was left with a buzzer to call a nurse. She never understood this and become incontinent while in hospital which led to repeated UTIs and resulted in her needing long term residential care
Hospital doctors should know that a person with dementia needs someone with them at all times. And that drugs are NOT the solution. I’m still hearing about doctors prescribing anti-psychotics to people with dementia, which is inappropriate and dangerous. Thank you for asking!
And to let them know that all “behaviour” is an expression of feelings, letting us know about an unmet need in the only way they can. We need to be detectives, figure out the need and meet it to the best of our ability.
So good luck in your career. You can make a huge difference to people’s lives.
Never ass-u-me anything. It makes an ass out of you and me!