Unconventional Wisdom: Dementia and Mental Health - Uncomfortable Bedfellows?

I attended an event last week - "Creating a Dementia Supportive Community in Brecon".  The initiative is being driven forward by passionate people; individuals with experience of dementia and those close to them, alongside staff and volunteers from Alzheimer’s Society.

The aim of the group is clear – to increase our awareness of dementia and change the way we think, talk and act.  You can access the notes I made from the day here. If you want to find out more or make contact with the group let me know..    

I am very fortunate that my role within Powys Association of Voluntary Organisations (PAVO) allows me to attend such inspiring events.  I learnt more about dementia from a husband and a daughter, willing to share their stories with us at the event; than I ever had from any reading on the subject.

As a manager of a mental health team in PAVO and as someone who has had only very limited personal experience of dementia, my knowledge and expertise of dementia was and still is very limited.  Over the last three years the topic is something that has loomed over me, I have to admit, like a big, dark, scary cloud (I'm pretty used to dark clouds living in Powys, I seem to have spent yesterday under one).  I have been under various pressures to agree that dementia sits under mental health, but I have always thought that this needed more thought and debate.  During this time, with the little knowledge I did have, my mind has been screaming that dementia does not sit easily within the field of mental health.  

So this worry has been with me for many years, and despite a number of attempts to get people who know a lot more than me to engage in this debate, I have failed.  So inspired by Thursday’s event and armed with a tiny bit more knowledge, I am going to take the leap and try and start a debate.

Dementia and Mental Health - Uncomfortable Bedfellows?

Dementia is a term used to describe more than one progressive illness that structurally and functionally affects the brain,  For example Alzheimer’s disease, the most common type of dementia, is brain damage caused by the actions of proteins. Vascular dementia is the second most common form of dementia and is brain damage caused by a disruption in the oxygen supply to brain.  Dementia symptoms manifest themselves as loss of memory, mood changes, and problems with language, reasoning and decision making. 

I have been around long enough to suspect that the evidence and ideas surrounding dementia and reported across the mainstream are not as certain as they are often portrayed but what I am told makes me understand dementia as a term that describes a number of illnesses caused by progressive brain damage. 

Things are not that well understood in mental health.  The conventional idea underpinning the mainstream understanding of mental health is one of mental illness and the various supporting theories that look for something wrong either structurally of functionally with the brain (e,g, searching to find evidence for a chemical imbalance).  However many would argue against this conventional view and support a theory that conditions that are diagnosed as “mental illness” are not illnesses at all, but a response to trauma and adversity.  You can watch Eleanor Londgen explain this idea based on her own experience of mental distress here or listen to a recent debate on the Today Programme here.  My recent blog, Unconventional Wisdom?  Are the mainstream ideas underpinning mental illness diagnosis as sound as we presume?, begins to explore this debate.

We do know that there are some illnesses that cause symptoms similar to those experienced by people with a mental illness diagnosis.  For example, Acute Intermittent Porphyria, the disease famously linked to King Gearge III.  We may, in the future, find evidence for other diseases like this that cause mental distress.  Thomas Szasz would argue that if and when we do, that doesn’t support the idea of “mental illness” but just that we understand better another illness (sorry that's another debate ). 

But we do have, within the mainstream field of mental health, a plethora of conditions and disorders that are diagnosed by psychiatrists, as “mental illnesses” using the Diagnostic and Statistical Manual of Mental Disorders (DSM-5).  The diagnoses are based on observation and reading of people’s emotions, behaviours and actions.  For example, Schizophrenia is characterized by delusions, hallucinations, disorganized speech and behaviour and other symptoms that cause social or occupational dysfunction.  Internet Gaming Disorder  is diagnosed when internet game play is seen as compulsive, to the exclusion of other interests, and where persistent and recurrent online activity results in clinically significant impairment or distress. 

So my debate starts (finally I hear you cry) with two questions:

• Does it make sense to place dementia, illnesses caused by progressive brain damage, with mental health, a group of conditions and disorders that may be caused by illness or may be a natural response to our life experiences? 
• Does it make sense to place dementia, illnesses caused by progressive brain damage, alongside mental illness diagnosis, diagnoses that some people believe we can "throw off", so to speak, believing that what is experienced is not an illness but a natural response to life? 

Of course I can see that experience of the disease dementia can cause serious stresses and strains on our mental health.  So people may turn to the field of mental health for information and support with this.  For example, the man talking at the event last week explained “sometimes I go days without being able to put two of my own thoughts together, I am constantly focused, 24 hours a day, 7 days a week, on my wife and making sure she is safe and as content as I can help her be, but it is at times like this that I experience symptoms of depression”. 

People with dementia are often (and as I understand it sometimes controversially) prescribed “anti-psychotic” medication.  In dementia I assume they are prescribed with the underpinning idea that they may help control behaviour and emotion, where as in mental health they are prescribed with the underpinning ideas that they help to address the "mental illness" (e.g. a chemical imbalance).

So over to you.  It will be a very limited debate if you leave me here, in all my uninformed glory.  I really hope you are willing to try and help me.  Tell me what you think, does this make any sense to you, have you been struggling with any of the same questions? What links and differences do you see?  How would you answer my questions and what questions do you have?    What else do I need to know, what information do you think I need to help me with this debate?