A Doctor’s Dementia Primer

Doctors are trained to cure patients, or, rather, cure diseases.

They assess symptoms, diagnose, and decide treatment.

Surgeons cut and sew. They mend people. As a cardiothoracic consultant said to me the day before my coronary bypass…

‘The bad news is, you are going to die. The good news is, I can save you.” And he did.

Anaesthetists make it possible for surgeons to cut and sew you. They see a body as a system and understand how everything is linked and interdependent.

I imagine physicians do too. They seem to be, well, just experts on everything!

Psychiatrists work out what is going on in the brain and endeavour to deduce treatment for symptoms that are not the norm or expected, or that cause misery or pain.

General practitioners know enough about almost everything to be able to point us in the direction of an expert, when we need one, and to provide low level treatment when we don’t.

Palliative care doctors…now, they are interesting. They deal with terminal illness. They know they cannot cure, and work to give patients best possible quality of life, free from pain, until death.

Think about dementia.

It’s a physical disease in the brain. And it is terminal. Incurable.

Cells in the brain die or connections between cells tangle and stop working. At the moment this cannot be stopped or even slowed.

There are some medications which speed up healthy areas of the brain which then compensate to an extent, in some forms of dementia, notably Alzheimer’s Disease.

For some people, higher levels of education, IQ, or intellectual training, create ‘cognitive reserve’, and this helps balance against the deterioration in cognition resulting from dying brain cells. So symptoms become evident more slowly and later.

Imagine you are a doctor who has been trained for ten or fifteen years to know everything about an area of disease, such as kidneys. Or orthopaedics. Or bowels. You will not know anything about dementia, beyond your few hours at university on the subject, or your day to day experience of meeting patients. And of course what you pick up and ingest from day to day ordinary life.

Imagine you are a doctor who sees things as right or wrong. As healthy normal, or diseased. Your job is to change diseased into healthy. Or at least to remove or stop the disease.

Imagine you know very little about dementia, except that it is incurable.

Imagine your knowledge of dementia is that it affects memory, and that a diagnosis therefore means a person cannot remember anything.

Imagine you are a GP who sees a dozen patients a week who live with dementia. And another few who may exhibit or report cognitive difficulties.

‘There is no cure for dementia. What is the point of referral for assessment?

‘Dementia is about loss of memory. Dementia means you cannot drive. Dementia means I cannot do anything to cure you.

‘What the hell do I do?

And, of course, there are almost no services or support out in the community for the patient in front of you.

‘This is insoluble. And it pisses me off. And I am helpless.

……..

Luckily things are rarely as green or red (sic) as this. How many GPs actually don’t want to do their very best for their patients? Thankfully very few. Yes, they are being ground down, but they are humans!

But the question remains, what in reality can they do for their patients?

And what difference would a full understanding of life with dementia bring to any of the doctors in any specialty?

Well here is a list of what every doctor should know, and what they can do, to help people living with dementia, diagnosed or not, live as well as they can.

……..

1 Dementia is not about just memory.

2 Terminal, irreversible, unstoppable, brain disease results in dementia.

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.

4 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.

5 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.

6 People with a diagnosis often retreat into isolation and despair. They feel bereaved. This makes their symptoms worse, and their lives miserable. Your job is to enable them to get back into their communities, to socialise, to do what makes them feel good and smile. If you do that they will not be visiting you so often.

7 You cannot expect to understand a person living with dementia in eight minutes. 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.

8 Remember, above all, that just like any other disease, there is no one template that fits all. Surgeons find variations in anatomy which they work round. 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.

9 Do not assume that if a person has difficulty remembering things (and that does not affect us all) there is no point in telling 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.

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.

……..

I could go on, and on…but these are what every doctor or other 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.

4 thoughts on “A Doctor’s Dementia Primer

  1. Thank you for this George. Perhaps one key message here is that GPs need to be supported too and that every community would welcome dementia support staff? These are paid members of staff, aligned to a GP surgery who get to know people with dementia, their families, friends and what is happening in the community. Importantly they are there for the entire journey so you don’t have to keep repeating yourself, you have more than 8 minutes, no long wait at surgery and you can talk/cry/get angry in your own home. Evidence has shown that these staff are preferred by people with dementia as they can also give advice at the right time and help detect change or other illness early. Because they know you! And as any professional will say it is the knowing the person and having the hunch when things aren’t quite right which is as important as other the other diagnostic tools (medicine as much an art as a science)
    The catch? GPs have to pay for these out of their own budgets. But they are proving cost effective. It’s a simple idea and it works.

    Like

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