Dementia: how did we get it so wrong?, by Dr Jane Tolman #DAM2015

jane tolmanOn Day 18 of World Alzheimer’s Awareness Month 2015 #WAM2015, or as I prefer to call it World Dementia Month or Dementia Awareness Month 2015, #DAM2015, I had the pleasure of listening to a geriatrician Dr Jane Tolman present at the Better Practice conference in Launceston: Dementia: how did we get it so wrong?.

Some of her thoughts for this presentation have come from participating in the second running of the Massive Open Online Course (MOOC) on Understanding Dementia run by the Wicking Dementia Research and Education Centre at the University of Tasmania, which provided a forum for learning and discussion about dementia for 15,000 carers, health professionals and interested persons from all around the world.  

Below is a summary of Jane’s presentation, published on John Menadue’s blog, Pearls and Irritations.

I think there is much room for improvement in the way health professionals have dealt with dementia.

We handle the diagnosis of dementia very badly. Families complain that doctors are unwilling to make the diagnosis, defer the diagnosis, or deny the diagnosis (just getting old). Statistics tell us that only about 40% of people with dementia ever get a diagnosis. There are established sets of criteria for diagnosis; but many of us still use a cut-off score on a basic cognitive test to make a diagnosis, maintain that a diagnosis can only be made post mortem with a biopsy, or tell our patients that it is a diagnosis “of exclusion”. While evidence suggests that the personal story (history in doctors’ language) offers considerably more weight to a diagnosis than any examination finding or test, families still find it hard to put their case, present their information and are sometimes dismissed due to privacy issues.

Notoriously, people with dementia develop a lack of understanding of their situation.  Doctors call this “lack of insight”. People with dementia also lack skills required to make good decisions, to reason and to solve problems. These features of dementia are poorly recognised by many health professionals.  And yet they can expose the person with dementia to extreme danger.  Assessing cognitive capacity for decision-making can be challenging. Many clinicians are hesitant about providing an assessment, and many who do so, provide an inadequate assessment. It is essential that doctors embrace this role, and develop their competence in such assessments.

What families most want to know about dementia is what will happen as the condition progresses. When we do make a diagnosis, we rarely address this.  Current staging systems of dementia tend to focus on what people can do rather than what their needs are, are often designed for research, and rarely address the real need: how to provide dignity to very vulnerable people.  At the time of diagnosis, or soon after, loved ones (and the person with dementia where relevant) should be given information about the stages ahead and what they mean.  There should be a “road map” to help people navigate the path.

Dementia is often described as a memory problem and clinics for its diagnosis and management are still sometimes labelled as Memory Clinics. It’s time that we acknowledged that dementia is about a range of domains, including Cognitive (memory, language, insight, judgement, planning, reasoning), Function (inability to perform household and other tasks and ultimately personal care) Psychiatric (commonly delusions, hallucinations and depression), Behavioural (aggression, screaming, following, calling out) and Physical (swallowing, continence, mobility and eating). Families and carers have the right to know the facts.  When these symptoms of dementia arise, families should not be surprised and need to be able to recognise these as manifestations of the disease.

Dementia is a relentlessly progressive terminal illness. As a profession we have failed to identify dementia as a disease which has much more in common with cancer than with forgetfulness.

At the time of diagnosis of other neurodegenerative conditions such as Motor Neuron Disease, a palliative approach is often instituted from the start, and early decisions are made about future feeding and assisted breathing. But in the case of dementia, we often offer families few choices, because we have failed to recognise that quality of life will be compromised, or to identify the role quality of life plays in decisions about management.

You can read the full article here…

 

Dr Jane Tolman is Director of Aged Care, Royal Hobart Hospital.

 

14 thoughts on “Dementia: how did we get it so wrong?, by Dr Jane Tolman #DAM2015

  1. Hi Kate,
    I have been following your blog for some time and find your insights and comments inspirational. Thank you. I have also completed the MOOC and have enjoyed the imput from Dr Tolman. I have long been fascinated with our brain and how it functions and have now commenced the Bachelor of Dementia Care.
    I have been on a long journey with my Mum who was diagnosed with AD over 10 years ago. Two years prior to this, Mum had a frontal lobe CVA which resulted in cognitive impairment from that time. As I read and learn more, I do wonder if the diagnosis is correct as it would appear to be more of vascular origin and Mum,
    at 95 still has some insight into what is happening. Luckily, our experiece has many positives, Mum is very visual and very happy to knit and admire the world around her, blue sky, green grass, beautiful flowers and so on. The memory issues are the least of our problems, notes and whiteboards are our friends.
    Thank you again Kate and wishing you all the best. Linda

  2. Thank you Kate, a great article. I highly recommend the MOOC course on dementia to everyone, my husband and I are currently enrolled in the course. Great job!

  3. In 2012, David Cameron said that Dementia was the new cancer and he is right. At the time he may have been referring to the impact it will have on a society. However, txs or lack of successful ones, money and lifestyle are impacted in similiar ways. We have cancer specialists and units available at most larger and country hospitals. We now need the same for dementia pts.

    • Indeed! I’ve been likening it to cancer and stroke, for some time, as a way of highlighting the total LACK of an ethical pathway of proactive care from Day 1! slowly slowly catchy monkey, or at least, that is what I keep telling myself!

  4. Thank you so much for sharing this article, Kate. In my work in the community with families supporting someone with (an often undiagnosed) dementia – this is the most often shared frustration. It is so hard for us to find medical support that is well-informed, prepared to have the hard conversations, and to include all of the relevant agencies in the ongoing care plan for the family. We have so far to go, but work such as yours is helping us to get there. Thanks again.

    • You’ll be pleased there is an excellent project that has been going on in Australia for over twelve months, now, of up-skilling general practitioners and practice nurses in dementia… at least we have started.

  5. There is so much wisdom here. I have been following Kate Swaffer’ s blog for some time and discovered Dr.Jane Tillman before completing the last MOOC. As a passionate advocate for better dementia care in the UK I have wondered for some time if the reason why thinking in Australia seems ahead of us in many ways is because dementia does not sit within psychiatry as it does here – awkwardly.totally agree with Tillman that memory problems are not the main problem for the newly diagnosed.We have learned through the group’s we run in Tibbs Dementia Foundation for people living with dementia without their supporters that it is loss of function which causes more distress.We have started on the wrong foot by placing all the emphasis on memory loss. Margaret-Anne Tibbs.

    • Thanks for joining this conversation, and for your kind words. I’e been suggesting to the whole world they stop focusing on the use of the word ‘Memory’ in everything they do… Memory walks, memory hubs, Memory blah blah blah… this just keeps the myths going it is only and all about memory loss!

      It is also the reason why I have been suggesting for some time now, everyone changes the name of Memory Hubs, to Brain Health Hubs, so they also work for people with other types of brain conditions, and also have information about brain health for people wanting more information.

  6. What a great article. My Geriatrician is of the same opinion as this article. Read every word. Thank you Kate and Dr Jane Tolman for a very informative article. I am enjoying the MOOC course as well

    • Oh my dear friend Mick, are you doing the MOOC? I did not know that! Or maybe I forgot?
      Anyway, what she says resonates with what I have been saying for many years now, although I would like her to think about the change that is needed upon diagnosis, which of course, I mentioned on the day!

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