Dementia will touch us all, be prepared

My friend found a heartbreaking notebook written by his mother as she tried desperately to fight against dementia. It was a stark reminder of the horror of this disease, writes Terry Sweetman.

The other night I had a sundowner with a neighbour who was looking pretty wrung out after a hot and sweaty frenzy of domesticity.

The first drink hardly touched the sides but then he related that in his clean-up he had found the notebooks his mother had kept while she was descending into dementia in a care facility.

What wisdom had she jotted down?

They included the names of her children and brief clues as to what name matched to what face when they visited. She even wrote down little jokes to tell them, perhaps to convince them (or herself) that she was still sparking on at least a few cylinders.

Recognition, even if self-prompted, was encouraging for the family for whom visits were sometimes confronting.

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The next day after that chat a doctor tweeted a picture of a whiteboard on which a woman had written simple messages of assurance for her mum, who suffered dementia.

In her line of sight she could see jottings such as “your meals are paid for”, “you are not moving; no one else is moving”, “you don’t owe anyone any money” and “you haven’t upset anyone”. According to the daughter, it reduced the constant stream of phone calls from her anxious mum.

They were two simple insights into the dimensions of dementia that had never occurred to me.

Firstly, it was a frightening sign that, for a brief period at least, the sufferers of dementia are aware of their diminishing faculties, their plight and their prognosis.

Cindy Ramage walks with her husband Joe, who has stage four dementia. Picture: Gary Ramage

That must be the most terrifying time of all before personal awareness is fully submerged by the fog of dementia. For some this period of awareness is mercifully short. For others it can mean years of anguish.

Secondly, it was a comforting sign that there are small things we can do to ease the anxiety among suffers and to extend that period during which we can still relate to loved ones.

Easing anxiety and allaying fears are self-evident kindnesses.

However, if we could prolong that period during which sufferers and family can still relate it would be major step towards ending the isolation of those in care.

The sad fact is that those closest and best equipped to help people with dementia — or mental or behavioural problems — are also the most likely to become exasperated and to withdraw.

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We might look down our collective noses at people who neglect their aged or failing family members but it’s a damned hard row to hoe.

There are glimpses of hope in the quest to cure or prevent some forms of dementia such as Alzheimer’s (the link between it and gum disease was the latest) but I reckon we have a long way to go. Until there is a Eureka moment we are confronted by a crisis of care rather than a cure.

Statistics show there are about 400,000 dementia sufferers in Australia, with the number trending upwards towards an expected million by 2058.

Reminder notes from a daughter, whose mother is suffering from dementia. These words on an easily visible whiteboard are a constant reassurance that everything is okay.#whatwasthatlike #podcast#dementia #alzheimer #alzheimers #psychosis #dementiaawareness #dementiacare pic.twitter.com/dX2zLJdasE

— Scott Johnson (@WWTLpodcast) January 31, 2019

Of them, about 100,000 are in residential aged care, taking up about half the available beds.

You don’t have to be a mathematician to work out that about 300,000 dementia sufferers are living in the community, many with family but I guess a lot in desperate straits.

Given our demonstrable inability or unwillingness to properly care for our aged citizens, I can’t see the situation improving.

One in 10 people over 65 have dementia and that demographic is predicted to grow to more than 8 million in the next 40 years.

It is the second biggest killer in Australian and the biggest killer among women, although death in many instances seems a blessing.

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Like it or lump it, large numbers of us will be either reliant on the care of family or responsible for the welfare of a family member. And we’re desperately ill-equipped for the task.

What I know about dementia is overshadowed by a mountain of ignorance about how to live with it or how to live with it in the family. There is plenty of information out there but it won’t come to you, so you’d better start looking.

If you detect an element of self-interest here, you’re damned right.

Anyone of a certain age who says he or she isn’t worried about dementia is either a fool or a liar.

I’d like to think I’m neither.

@Terrytoo69