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.
- 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.
- I’m hungry for up-to-date, authoritative information about the impact of lifestyle factors.
- I hoped for tips on interacting with a friend with dementia.
- I needed a day away from my computer!
- As a poet I’m fascinated by the various ways that speech is affected by dementia.
Which of my blurry goals were met?
- Yes, I got educated, I updated my knowledge, found out what’s going on. (See below.)
- Yes, I got a good overview of up-to-date information about the impact of lifestyle factors.
- Yes, I understand a tiny bit more about good ways to be with a friend with dementia.
- Oh sure, I had a day away from my untrustworthy computer.
- 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).
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
- 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.
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.”
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.