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The Disease Everyone Forgets

Today I am so very honoured to have a guest on my blog. Twitter introduced us and psychology connected us.

As I mentioned I work with most age groups. The only group I do not have any idea about working with and fortunately my guest does is aged care, specifically dementia.

Yes thankfully the writer put her psychology hat back on and has provided a piece she had written. Thank you Dr. Kylie Ladd for your support during mental health week on my blog.

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I’m going to name three objects, then I want you to repeat them. Remember what they are because I am going to ask you to say them again in a few minutes. Ready? Ball. Car. Man.

Every day, all over Australia a steady stream of people are attempting to remember these words as part of an assessment of their cognition, or thinking. They are also asked to copy geometric figures, name common objects, and follow three-stage instructions. Some of these people thought that their memory was slipping and consulted their GP; others have been referred to neurologists and geriatricians by concerned family members, friends or colleagues. Many of them will have dementia.

As in all parts of the Western world, the incidence of dementia in Australia is on the rise. Around 200,000 Australians presently have a diagnosis of dementia, of which Alzheimer’s disease is the by far the most common form. That figure is set to reach half a million by 2040.

Yet for all this the illness is still relatively low profile. Part of the problem is the syndrome itself, associated as it is with faltering memory, the disintegration of cognition and eventual loss of self, to say nothing of incontinence, wandering and behavioural change. No-one wants to think about such things, let alone talk about them. And nobody young and sexy ever gets dementia- there’s no Kylie Minogue or Delta Goodram to bring it to our attention in a four page spread in Woman’s Day. Worst of all, no-one ever recovers from Alzheimer’s disease or most other forms of dementia. There are no feel good stories of families triumphing against the odds, of love pulling anyone through.

There is no cure. The drugs that are available for Alzheimer’s disease stabilise the progression of the disease for a few years at best, do nothing at worst. A large Australian trial of an extremely promising anti-Alzheimer drug named Clioquinol was recently stopped after a number of patients developed adverse reactions.

Given such a gloomy picture, why should those of us whose memories are intact or are decades off the risky age range care? Simply because if the statistics are to be believed dementia will affect us all. A quarter or more of those who live to 80 (which is actually below the current average life span for a woman and not too far past that of a man) will develop dementia. Even if we escape, the odds are high that a spouse, parent, sibling or child will be affected. All these people need care. Half a million Australians currently provide care for someone with dementia, quite aside from the figure that actually have the condition. That’s a lot of people affected by something that so many know so little about.

We also need to know about dementia because the condition is so much more manageable with early planning. Within the first months, and often ideally weeks of a diagnosis, people with dementia and their families need to make decisions about their finances, driving, future accommodation, medication, community services and legal documents, amongst other things. As Alzheimer’s Australia, the national body for people with any form of dementia are at pains to point out, living doesn’t stop when dementia starts. Early detection and management of the condition can have a huge bearing on the emotional, financial and even health status of all those affected.

There are societal as well as personal implications too. It is much cheaper for taxpayers to support people with dementia in their own homes rather than have them move into residential care. To do so however requires an educated public and a government committed to funding the health and council services so often at the coal face of dementia care.

Recently, an important new emphasis has been placed on what can be done to prevent or reduce the risk of dementia. However, despite the regular release of media reports trumpeting breakthroughs in the field of dementia research, there is no real cure or even efficacious treatment imminent. Some very promising leads are in development but such work can and should take years of rigorous science and clinical trials- hopefully in time for those of us in our middle years, but maybe not either. In the meantime, though it is a frightening, often unattractive prospect dementia will continue to touch us all. Now, what were those three objects again?

The Alzheimer’s Australia National Dementia Helpline number is 1800 100 500 (free call; 24 hours).

Dr Kylie Ladd is co-author of the book “Living with Alzheimer’s and other dementias” (Michelle Anderson Publishing; $19.95).

** Kylie did say that since she first had this published she believed the awareness of dementia had grown considerably. I think it is never enough. Thank you again

Kylie’s is very talented and is also a novelist and freelance writer. Her latest book is Last Summer. You can find it in all good bookstores or here is one place

Remember it is Mental Health Week and there is still a Blog Hop and link up open



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About Bringing Spirit Into The Everyday

Modern Suburban Hippie (minus hallucinogens :) ) Vegetarian. Passionate. Love Laughs. Yoga. Chai Lattes. Crystals. Oracle cards. Goddesses. Angels. Spiritual. Perfume Loving. Intuitive Parenting. Breastfeeding Mama. Sport Loving. Opinionated. Scorpio. Psychologist. I have 3 little people who rock my world.

Discussion

3 thoughts on “The Disease Everyone Forgets

  1. Thank you for hosting Dr Ladd here. As the wife & Carer to my husband who has Parkinson’s Disease, and what seemed like associated dementia in June 2010, I needed answers of what/how/where to get help for me and for him. A book, as quoted above, was bought and I devoured it. Later I “found” the good Dr via Twitter…and her steady presence and kind words helped me, the one with normal brain function & cognition as I attempted to navigate the world for my husband.
    Here is an update. My husband’s PD is under some relative control thanks to special meds. However, his dementia (so named by me as I interpreted his Neurologist’s diagnosis after one of the Mental Tests he took) is no longer there because it had never been that. Instead of being dementia associated with about 1/3 of PD sufferers, my husband’s huge intake of opiates & tricylic meds ( all legally prescribed via a pain management specialist for his severe arthritis) was the cause of his memory loss, his faulty thinking and his impaired congition.
    In the past 2-3 months he has lost 35kg ( the tricyclic gone) and is gaunt but he has full congnition & much improved motor skills even with some aspects of PD affecting him.
    It has taken a load from my life knowing that the future for some years ahead now will not be dementia-oriented but interestingly for me I am still adjusting to the man who wants to talk politics, devour daily newspapers & pinch the iPad to do games and puzzles!!!
    He was attempting to get his driving licence back but the Neuro said that because PD slows reactions physically and is the most complicated neurological process it is best he doesn’t.
    Sorry I wrote a post-long comment but it is timely to make this here!

    Posted by Denyse Whelan | October 12, 2011, 12:00 am
  2. Which large Australian Studies of Clioquinol were stopped because of adverse effects? Where is this documented?

    If someone told you this, who was it?

    Posted by louis Quinn | November 10, 2011, 4:58 am
  3. This article was originally written and publsihed in 2005, which the owner of this blog knew when she asked to publish it. At that time, a large clioquinol trial run by Prana Biotechnology had just been discontinued after a number of subjects developed side effects:
    http://www.pranabio.com/downloads/Media%20Releases/2005%2011%20april%20Prana%20Cancels%20Plans%20for%20Placque%20Clinical%20Study.pdf

    I believe further studies into clioquinol have gone ahead, though the drug is still not approved for use in Australia as far as I know.

    Posted by Kylie L | November 10, 2011, 9:23 am

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