“Let’s talk about dementia” symposium 2022

Scribbled notes from a dementia symposium. One thing that would make a difference: More funding, respite, someone to check in daily. Funding tree: nihilism & agism, comms, reciprocity, Maori, early diagnosis, education, language, word
Notes from symposium on dementia, Wellington, 22 September 2022

Impulse outing: I went to the excellent Westpac symposium “Let’s talk about dementia.” When people asked me why I was there, I found hard to answer. No, I’m not working in the field of dementia as a carer or a professional or a scientist. And no, nobody in my family has dementia. Possible and true replies included the following.

  1. Above all, I wanted to educate myself, update my knowledge, find out what’s going on. I don’t want to be a runaway know-it-all, seizing on a few random facts and running away from the rest.
  2. I’m hungry for up-to-date, authoritative information about the impact of lifestyle factors.
  3. I hoped for tips on interacting with a friend with dementia.
  4. I needed a day away from my computer!
  5. As a poet I’m fascinated by the various ways that speech is affected by dementia.

Which of my blurry goals were met?

  1. Yes, I got educated, I updated my knowledge, found out what’s going on. (See below.)
  2. Yes, I got a good overview of up-to-date information about the impact of lifestyle factors.
  3. Yes, I understand a tiny bit more about good ways to be with a friend with dementia.
  4. Oh sure, I had a day away from my untrustworthy computer.
  5. No, linguistics was not on the menu. Which was obvious from the start, of course.

Curious, scared, and blindly confident

Only one of these owls truly wants to learn about dementia. Curious is straining to read my diagram even when she, or it, is upside down. Scaredy-cat is too terrified to even think about it. Know-it-all is planning her escape (which she quickly achieved by “having a fall” and breaking into many pieces).

Three little painted owl figures stand behind a page with notes about dementia.
Three small ornamental owls sit above the tree of dementia truths. Only one is listening.

Turns out the owls represent us. The ones who really do want to know about dementia. Outnumbered by scaredy-cats and pretend-they-know-it-alls. Together they add up to me. I do want to know even though I am scared and would like to run away. Is that also you?

What I found out about dementia

At the end of the excellent (yes, let me say it again: excellent) symposium I sifted through all the information I’d received. There they are on the branches of the tree. Which needs FUNDING.

Early diagnosis is crucial

This surprised me, because surely surely if we or someone close has dementia we instinctively do not want to know. The truth is so scary we make jokes about it. The truth is so scary we want to keep it at bay for as long as possible. Bad idea! Getting a diagnosis makes many things possible: expert help, crucial information, support from your local Dementia society, comfort and practical advice from fellow carers and people with dementia. A Healthy Brain Plan. Practical planning. Medication to slow the advance of dementia is only possible when you have a diagnosis and accept it. If you resist asking for a diagnosis, inevitably this results in a crisis.

Why people don’t talk about dementia

“Let’s talk about dementia” because generally, people don’t. Dr Emma Fromings from the Tawa Medical Practice listed some reasons why people don’t get an early diagnosis, don’t want to know.

  • fear and stigma surrounding dementia
  • ageism
  • anosognosia: the person does not notice what has changed
  • cultural beliefs and values
  • NIHILISM: the belief that dementia is normal, it’s fate, and nothing can be done.

The words we use

“Dementia” and “Alzheimers” (often used interchangeably) are scary and foreign to many people in Māori and Pacific communities. An alternative Māori phrase was often used in the symposium: “mate wareware.” This can be translated in different ways, and one good way is “a sickness of forgetting.” English medical terms often don’t hit the mark for other cultures either, because of fundamental differences in outlook. Dr Makarena Dudley (School of Psychology, University of Auckland) explained that to Māori, wairua is a key aspect of health. But questionnaires and G.P.s never ask patients about their wairua. Why not? Now that I get it, I would also appreciate being asked, even though I am a Pakeha. It’s a profound and practical concept.

How do you explain wairua?

Wairua is the spiritual dimension of all existence; it speaks to the holistic wellbeing of an individual and also the spiritual synergy of the collective with which that individual identifies. Wairuatanga is as an essential requirement to health and therefore vital to the wellbeing and identity of Māori.

Wairuatanga — Independent Maori Statutory Board

Massive need for education

Many speakers stressed the level of ignorance around dementia and the need for education. Many of them are now training medical practitioners, Māori and Pacifica groups, groups with dementia, carers and relatives.

The impact of our ignorance on the very people presenting with dementia was highlighted in a videoed interview with Rosie. She spoke about her intense frustration and anger when other people refused to take her own concerns seriously. She knew something was wrong but others would just say, “Don’t be silly!” “Stop thinking like that!” Nobody listened. Nobody would talk to her about it. But when she joined a brain group where other people were talking about their condition, she became “so happy”. “I have a bright future. I’m released from that dark place where I can’t talk to others.” Rosie told us bluntly how she wants us to interact with her, and by extension to others with dementia. “I want them just to be aware. Not to dismiss me like I don’t know anything. Just ask.”

Knowledge is a largely untapped resource that can help all us scaredy-cats and know-it-alls alike.

Reciprocity matters

What Rosie said is relevant on so many levels. Patients, carers and health workers need to work as a team. Reciprocity — you contribute, I contribute, they contribute. I listen to you, and you listen to me, we all listen to them. Communication between carers and health workers needs to be strong, reliable, and reciprocal.

A dementia-prevention revolution

Why is education so crucial? Because, as Dr Lynette Tippett of Brain Research New Zealand said, we are in the midst of a revolution in dementia prevention. Until around 20 years ago, a deterministic attitude might almost have made a bit of sense. But for the last 20 years more and more research shows the power of lifestyle changes is real. In New Zealand, 40% of the risk factors for dementia are potentially modifiable. (For Pākehā, that’s 48%.) So if you can, and you’d rather avoid dementia, why wouldn’t you modify them?

Upfront, we have to accept that some people will always get dementia regardless of their perfect lifestyle, said Dr Tippett. That’s a fact. So do some people get killed in car accidents regardless of their perfect driving and seat-belt use. No study can predict your personal future or mine, in our brains or a moving vehicle.

But statistically, lifestyle changes have been proved to delay dementia — just as using seat-belts massively lower your chances of being killed in a car.

Of everything Dr Tippett said, I’ve seized on a few snippets. Probably I’m misquoting her but I hope I’ve got the gist.

  • It’s never too late or too early to build brain health.
  • What’s good for the heart is good for the brain.
  • In mid-life, alcohol is one of the worst risks.
  • The percentage of truly inherited dementia is very small.
  • Loneliness is bad for your health.

Much to digest. I’ve touched on only a few of the speakers. You can download the full programme here — until it’s removed. We have massive problems, some of which may be improved by a major overhaul of our stressed public health system. But exciting new initiatives and research are underway. And as someone said, this was “a room full of hope.”

Four small figurines against houses, forest and sky: two owls, a Buddha and a yellow Mexican skull
My team of life coaches

The photo above shows my team of life coaches. Scaredy-cat, Curious, Buddhette and jolly Mexican Deathette. I value them all, and try to make our interactions reciprocal. Our neighbourhood, the forest behind us and the sky above us also sustain me.

RIP dear Know-it-All

Forget-me-not sprigs around a small brown paper parcel inscribed "RIP Know-it-all 2000–2022. Missed by all your friends and colleagues."
RIP dear Know-it-All, 2000-2022. You gave me much advice and will be missed by several.
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33 thoughts on ““Let’s talk about dementia” symposium 2022

  1. realruth says:

    I once had a ‘know-it-all’ owl just like yours, but she’s disappeared. Maybe she fell in the earthquake? Is falling a likely fate for know-it-alls?

    1. Rachel McAlpine says:

      Now you mention it, quite possibly. I won’t dwell on the fact that she was ceramic while the other two are wood.

  2. cedar51 says:

    Nice to see that “alone” doesn’t particularly feature in the snippets you took. So many people confuse that “alone” with “loneliness” especially when it comes who is “not living your home” and therefore those same “experts” assume you are then “lonely” 🙂

    1. Rachel McAlpine says:

      Must be very disconcerting.

  3. Sadje says:

    Thanks for sharing this. I’ve saved it to educate myself

    1. Rachel McAlpine says:

      Sadje, this is my third try-to-reply. (WordPress having a bad day.) You made me smile, as always!

      1. Sadje says:

        I’m sorry that WP is up to it’s old tricks. Thanks for your lovely comment.

  4. Most enlightening

  5. granny1947 says:

    My mother got dementia.
    We were not close but it was hard to watch.
    She never drank.
    I, on the other hand, have one and a half glasses of wine a day.
    Think I shall stick to that!
    One of her symptoms was her refusal to shower or wash her hair.
    The day that happens to me I shall panic.

    1. Rachel McAlpine says:

      Thanks for sharing this. Must have been tough for you all.

  6. Much as Continuing Professional Development is so important in our working lives, so is continuing personal development in our private lives. It is so easy to sit back and think “This doesn’t affect me” or “I’m too old to learn new things”. Well done Rachel for being so positive and proactive in wanting to improve your own, and others’ lives. In the UK there is this marvellous initiative to enlighten people’s perception of dementia called “Dementia Friends” This link will take you there:
    People can be involved as much, or as little, as they wish. Short courses and meetings are held, both on line and Face to Face, and there are lots of things to dip into, or not, as the fancy takes you. The main purpose is to make information available to help people cope with, and understand, dementia, however they may encounter it.

    1. Rachel McAlpine says:

      This looks like a very well thought out initiative that meets people where they are. I like your word “enlighten.” Information in this case is enlightening! Westpac sponsored the symposium and they are “New Zealand’s only Dementia Friendly bank.” I use capital letters since finding that we too have a Dementia Friends organisation, but it seems less active than yours. Thank you, Peter.

      1. Thank you for the link Rachel. The more we talk, the better informed we become. We’ve come a long way from locking people up in Lunatic asylums, but there is still much to be done, and much to learn.

      2. Rachel McAlpine says:

        Very true. It’s good to remember that we have come a long way.

  7. judithhb says:

    Thank you Rachel for sharing this. In today’s world, it seems that dementia is never talked about and certainly not amongst my friends who are all in their 70s and 80s. We laugh about forgetting things but do we really know anything about dementia, how it affects somebody and what we can do to help. Such a symposium as this is obviously a good step in the right direction. I’ve downloaded the PDF from dementia Wellington and have decided to become a subscriber. I was aware of this organisation I have one of their bracelets. But I wasn’t aware of just how much they do. Again thank you for bringing this to our attention. And I’m sure that your other owls and life coaches miss their smashed friend

    1. Rachel McAlpine says:

      That’s very interesting, about your friends. Those jokes about dementia — I used to make them too, but nowadays I just don’t appreciate them. I will add a photo of dear Know-it-All’s remains in her biodegradable casket to this blog post. That’s thanks to your gentle reminder that she served a fine purpose and was beautiful in more than one way.

  8. I’m glad you wrote about dementia. It’s a subject we are skittish about, and we should put our minds to it!

    1. Rachel McAlpine says:

      Beautifully said, Anne!

  9. Great post, Rachel.

  10. Excellent post! Thank you, Rachel. While not a New Zealander, there’s lots of take away here – including the sense that you New Zealanders are way ahead of this than us here in the USA. I’ll add a 21st century twist: it appears that evidence is pointing to the possibility that those who survived COVID are more susceptible to dementia later in life. Yikes. However, that’s an assertion in its early stages and not ‘tested’ by any definitive means at this point. And I hope it gets clarified sooner than later.

    1. Rachel McAlpine says:

      Thanks Laura. About the COVID connection: I often remind myself to ask “correlation or causation?” when I hear new information, or else I’d start to take it all personally.

  11. debscarey says:

    Thank you for this article Rachel. As it happens, dementia is very much on my radar with two grandparents, one parent and one much loved in-law – all of whom suffered. But it is one of those subjects that you only talk about with other people who’re in the same boat – which is sad. I suspect it’s because the subject is not only depressing but feared.

    1. Rachel McAlpine says:

      Verytrue. Yet there is such comfort and practical help in sharing. Do you feel isolated in this difficult role?

  12. debscarey says:

    Thanks for asking Rachel. I’m fortunate in having 3 siblings, as well as many good friends who’re in similar positions, so it’s not something I suffer with now, although the caring stage was very isolating.

    1. Rachel McAlpine says:

      Nothing beats siblings and friends in such a situation. Especially if they can share the caring, which isnt always possible. I am glad you have that support.

  13. I was miss scaredy-cat. I thought we had lots of time, you know? Now that I have gone to visit my step-mom who declined very quickly in her cognitive health, my eyes are open and I want to know all I can to help

    1. Rachel McAlpine says:

      What a shock this must have been. But now you will be seeking help and information from all sources–especially local ones. Your approach will be a real help. But don’t forget to be kind to yourself!

      1. Thank you so much

      2. I’ll remember, thank you

      3. Thank you for this reminder

  14. candidkay says:

    I know more and more people whose family members are impacted by dementia–I’m hoping we can find a way to prevent it. Such sad stories . . .

    1. Rachel McAlpine says:

      At least we know how to delay it now. And a new drug is promising.

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