Dementia doesn't discriminate. Do you? - Dementia Action Week

13 Sept

I want to tell you about my Grandmother. What in incredible woman. My Nan. My hero. She raised eight amazing children, worked hard as a nurse to provide for her Family, and then went on to study Naturopathy - running her own successful and well respected clinic in Subiaco. I vividly remember her wisdom, her soft perfume, her strong hands, the way she thoughtfully chose birthday gifts and prepared lavish afternoon teas for each of her 20 grandchildren, and the Douglas Clan tartan she wore at all very special occasions. I remember her elegance and I still feel her love. How lucky I was to really know her.

How hard it was to lose her so slowly. Devastatingly harder to witness my Nan losing herself. My Grandmother was diagnosed with Alzheimer’s in my late teens. In the early stages of her disease we spent a lot of time together, I was working at my Nan’s clinic and studying Occupational Therapy. In the latter stages, in spite of what I was learning, I found my Nan’s decline the hardest thing to go through. I could spend time with other Elders and their Families going through the same thing, but the repeated unfinding of my hero, as she seemed to disappear with every visit, broke my soul. It became too hard, because I did not know where or how to find the sparks of her, though they were there. The worst thing happened - I visited less and less. I cared for those I didn't know more and more.

I wish I had known then what I know about the brain now. I wish I’d known the beautiful hidden parts of my Nan I was privy to on her journey with dementia, but I missed the chance to be with because of my grief and fear.

I often think too - What could I have done to delay the process, or better yet stop it entirely? This is something I find myself thinking about more and more often – with my family history, I ponder the future of my own brain health, and my children’s. Knowing full well that I could already have the abnormal beta-amyloid and tau proteins starting to make their mess, 20 or 30 years before I start to show any signs or symptoms of the damage they might be doing today.

So let’s divide my thoughts into two separate pathways, we will wander down each:

ONE: What could I have done differently during the progress of Alzheimer’s Disease with my Nan?

TWO: What can I do now to be proactive about ‘dementia proofing’ my brain and protecting my children from this indiscriminate disease. It found my immensely intelligent and hard-working Nan, if it wants to - it will find me. Dementia does not discriminate.

PATH ONE:

What would I have done on the Alzheimer’s journey with my Nan?

As a simple introduction it is probably easiest to divide the journey someone takes with Alzheimer’s Disease into the early, middle and latter stages. Alzheimer’s, like all types of dementia, starts and progresses differently to other types, and it can be described in far more detailed progression, but these three steps seem a good general place to start.

Early stages:

The ‘thinking and remembering’ brain starts to show signs of being affected. Most days are pretty clear and sharp, as long as things are the same as they have always been. Diaries and notebooks become very important possessions. The new or unfamiliar can spark fear, a little unknown can muck up a great day. At this stage my Nan knew what was going on, and this insight can be heartbreaking.

What would I have done with my Nan?

I would have listened to her stories, I would have recorded them in her voice, scribbled them down. I would have sat with her going through photo albums, writing down all the memories each picture sparked, if a picture tells a thousand words I would have written them all down. I would have gathered the small details in a memory library, right down to the nitty gritty…smells of perfumes (even the perfume her Mum wore), favourite foods, cleaning products she used, favourite flowers, her garden, the type of wood burning in the fire at the farm...the treasures of powerful sensory memories. Later on these may be the magical triggers for lighting up neural connections that can then recount stories, people and places. I would have created scrap books, written a memoir, in 2019 I would have used amazing apps to record her extraordinary life.

Keep the life, that lives in her memory, alive.

Middle stages:

As the brain areas for intellect, judgement and behaviour, are increasingly affected, the sensing and intuiting brain flexes its muscle. As the brain areas for memory and language become impaired, so the profound emotional brain expresses itself more fully. Ups and downs can seem bigger, good days and bad, they can feel more extreme. But with this perhaps unseen insights from emotional responses can be seen and appreciated, deep layers of the person respected in a new light.

What would I have done with my Nan?

At this stage procedural memories are intact, those from long ago, childhood even, these are like the ‘doing’ memories for: dancing; playing piano; knitting; potting a plant; baking; singing… I would have done these things more often with my Nan. I would have kept it fun and introduced a little newness and challenge through the gateway of the familiar.

I would have kept working on her scrapbooks, photo albums and memoir with her, knowing now that there would be a layer of emotional and sensational depth that was perhaps masked by her intellect and judgement before. I would have played all her records and really listened with her. I would have taken my Nan back to the special places where she remembered herself more often, I would have tried to find out more about why the places, people and things meant soo much – knowing these would make her more a part of me, and help me remember her to my children.

Latter stages:

Survival brain is in gear, very deep parts of the brain have taken charge. Loved ones suffering can appear increasingly mute, almost trapped, protective. Reflexes we had as infants can resurface, and we crave the same tender care, protection and love. Sensory and emotional memories are still very important. Love at this time is key.

Have you ever noticed how you can walk past someone wearing the same aftershave as your Pop…and you are right back there, your 6 year old self is in his shed fixing your bike...

This is where the time you took together, collecting the fascinating minutiae of the life story of your loved one comes into great use, wonderful, at times even magical effectiveness. The gift is to now bathe in personal meaningful pleasure, and enjoy it with one another.

What would I have done with my Nan?

I would have immersed my Nan in everything I knew she found pleasure in and what she loved…Wild flowers and orchids from the sheoak dappled rocky outcrops between the paddocks on her farm, the sound of blue wrens that framed the clothesline out the back, Mr Lincoln roses, the fruit slice she always served at afternoon tea, I would have dabbed her neck with 4711 Original Au De Cologne – because of the people this reminded her of, burned jarrah on an open fire, read aloud the language of naturopathy and nursing…I would have wrapped my Nan in a tapestry of the awesome human she was.

In the end, I know now, we are all love, and we return to love…the sparkle of it is in our eyes until the end. Inspired by the sentiment of Alanna Shaikh, my Nan had ‘a heart so pure, that even stripped bare by dementia, it survived’.

PATH TWO:

Dementia proofing a brain – what can we do now?

Prevention is infinitely better than cure. All preventative health strategies, in a nutshell, are about what you eat and what you do every day. The benefits of following the recommendations for brain health is that the same guidelines support general mental and physical health as well.

So here’s the GREAT EASY EIGHT for Dementia Action Week:

EAT: Australian research suggests following a combination of the Mediterranean and DASH diets with their 15 component MIND Diet. A large three year US research study into the benefits of the MIND diet is currently underway.

MOVE: Work up a sweat for 45 minutes, at least three times a week, doing something you enjoy. If you can’t think of anything – just start walking with a friend.

SLEEP: Don’t think you’re any different, and that you can cope with less – all brains really want a good 8 hours a night.

LEARN: There was never a better time to access some of the best education opportunities in the world for free! Get lost in the world of MOOC’s (Massive Open Online Courses).

LOVE: Genuine social connection and support, at any age, is neuroprotective. The older you get the more important maintaining close friendships can be. Take the time to be together.

CALM: By all means try meditation and mindfulness practice, but also be mindful of potential chronic inflammation in your body and brain – the steps above can help with this.

CHALLENGE: You want as many highways, byways, streets, avenues, bridges, boardwalks and pathways connecting knowledge and memory in your magnificent brain as you can. Challenge yourself often to do something different, or do things in different ways, to build a masterfully connected cortex.

CHECK: Find a clinic with a focus on brain health and preventative approaches. If you have a Family history, or other risk factors, get a brain health summary well before you show any signs that something might be a miss. From here you can improve your brain health, and hopefully, perhaps, never have to worry about monitoring decline.

The reality is, right now, there is no cure for this overwhelming disease. If you are caring for a loved one with dementia you may find the following the work of the following people and their websites helpful:

Teepa Snow – Positive Approach to Care: https://teepasnow.com/

Naomi Feil – Validation: https://vfvalidation.org/

Dementia Australia: https://www.dementia.org.au/

If you are looking to ‘dementia proof’ your brain, starting today, check out these:

Alzheimer’s Universe: https://www.alzu.org/

Future Proof Your Brain – Alzheimer’s WA: https://www.alzheimerswa.org.au/future-proof-your-brain/