Jane Tolman. Dementia: how did we get it so wrong?

In the past few weeks I have had the privilege of 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. This has provided a forum for learning and discussion about dementia for 15,000 carers, health professionals and interested persons from all around the world.  More than that, the participants are able to seek answers to their questions, and to tell us their concerns about their “journey” and about their expectations.

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.

The behavioural and psychological symptoms of dementia are common, and yet they are poorly understood by many of us.  Many clinicians offer treatments which have little (or sometimes no) demonstrated usefulness and which have well documented adverse effects.  We continue to offer medications which sometimes only work by virtue of their sedating effects, and we fail to communicate the facts to families. The best evidence from international data is that at best 20% of those with dementia who receive antipsychotic medication for the treatment of behavioural and psychological symptoms derive benefit. Despite this evidence, up to 80% of the residents of aged care facilities who have dementia are regularly taking antipsychotic medication.

Despite the rhetoric, we rarely practise holistic, person-centred medicine when it comes to dementia.  This would mean the following: acknowledging that every person with dementia is a unique case; providing the knowledge which is essential in making wise decisions about management, and being aware of the evidence; ensuring that there is a decision-maker who can make informed decisions (in collaboration with the clinician); offering choices, and perhaps above all ensuring that this, of all conditions, requires a very clear focus on dignity for the person with dementia, and careful consideration of best way of providing it.  Management of dementia should always be a collaboration between the person with dementia, the loved ones, the medical team and paid carers.

The MOOC has taught me that we need to listen more to those who live with dementia; that is to the carers, both loved ones and professionals. We can provide good care for those with dementia. But in many ways, we need to go back to the basics.  And we need to make sure that we listen to carers, engage them in management and acknowledge the critical role of education.

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

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8 Responses to Jane Tolman. Dementia: how did we get it so wrong?

  1. Heather Greatbatch says:

    THANK YOU so much for this article. It is very painful to be a carer, see and live with the need for a diagnosis, and also to be respected enough to have some input into care for the sufferer once they are put into an aged care facility.

  2. Jason Russell says:

    One of the most learned, compassionate and downright good Doctor’s that I have had the privilege to watch work in my life. Dr Tolman should be congratulated and lauded for her work with the aged and those with dementia. Wish there were more like her in the health care system.

  3. Robyn Colman says:

    Thank you from me too for this clearly argued article. As the daughter of a dementia-sufferer, one of the hard things for me early on was getting recognition for my mother’s condition, and even recognising it myself. (My father filled the gaps unconsciously and, after nearly 60 years of marriage, effortlessly. His death made her condition more clearly evident.) But there was very much a ‘wait and see’ approach. Once it was established that she wouldn’t leave the gas on, no-one seemed to think it necessary that she be tested or treated, and to this day (five years after diagnosis) I haven’t had a conversation with anyone about her likely future. I’ve learnt about it from friends whose parents have had the same or similar illness. Thank goodness for the experienced and caring staff at her nursing home. There is still so much more for me to learn, and I’m beyond words grateful for this piece.

  4. Joy Loverde says:

    Dr. Tolman, your point is well taken. The time is now to evolve into a more appropriate and respectful diagnosis, treatment, and communication process.

  5. Jack Wodak says:

    Thank you. A concise, and lucid, account of a major, but unacknowledged problem and of our failure to deal with it appropriately.

    [I am a Consultant Neurologist in private practice in Melbourne.]

  6. Melanie Wasley says:

    Great article.
    I am36. I am a fulltime carer fir my grandmother who has dementia. It us clear people do not undersrand the elements involved with dimentia. We need support and certainly further infomation on the topic. Awareness is needed.

  7. Trish says:

    Thank you for this article. I hope you can get your message far and wide to the medical profession. What hasn’t been added is the effects of stress placed on the carers of dementia sufferers. I am near the end of my experience of dementia with both my parents but, without realising, stress has had it’s effect on my own body with a diagnosis of hypothyroidism, and very low levels of vitamin B, both condition closely related to stress. It would not have changed my care plan for my parents but had I been aware this was a possible outcome I may have been gentler on myself. Again thank you for trying to understand.

  8. maryanne campbell says:

    Interesting read.

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