ANTI-PSYCHOTIC DRUGS AND THOSE LIVING WITH DEMENTIA

Routine usage of anti-psychotic drugs for behavioural and delusional challenges of people living with dementia has decreased somewhat throughout the world over these past ten years. It is now 'supposed' to be a process of last resort. These drugs are linked to very serious side effects, have essentially moderate or no benefit at all for the dementia patient, and, prescribers do not address underlying causes of behavioral issues in dementia.

Inappropriate prescription of antipsychotic drugs is extremely harmful. Research has shown that there is a greatly increased risk of heart attacks and strokes when given to dementia patients. Drug manufacturers of anti-psychotic drugs operate under very rigid licensing regulations for usage of their drugs. 

But a very major problem appears to be "off label" prescribing of these drugs by individual health care professionals just for their own personal convenience. Psychological and alternative therapies seem to be dismissed by many in the medical profession. There is no specific legislation banning "off label" prescribing of anti-psychotics to those with dementia. The process is left to "good practice" guidelines administrated through relevant medical-governing councils in their own national jurisdictions.

In 2008 my 56 year old wife suffered  a serious "psychotic incident." She was prescribed a powerful and strictly monitored anti-psychotic called clozapine. At the time she did not have an MRI brain scan, as a neurologist believed she was "too young" to check for dementia. However, in 2013 via MRI brain scan, official diagnosis was changed to early onset rare fronto-temporal dementia (FTD). A review to discontinue clozapine should have been considered by the original prescribing psychiatrist in 2013. That review never happened.

From 2008-2017 my wife was subjected to a series of harmful side-effects from clozapine, some irreversible. That included heavy sedation, constant weakness and dizziness, tremors, acceleration of cognitive decline, massive weight gain, increased aggravation of diabetic condition, liver impairment, urinary incontinence, and, excessive hyper-salivation. It also contributed to lowering platelet and white blood cells counts, thereby decreasing her body's ability to fight infections. These side effects are in addition to increased chances of a fatal stroke or heart attack.

In 2017, turning 65, my wife was transferred to an Older Adult Mental Health Care Team. At this point I compiled a six-page report of her experiences to be given to a new psychiatrist, with the view to discontinue clozapine. That consultant agreed with my proposals. Over a  six month period clozapine dosage was gradually reduced to total discontinuance. Through reviews and activities enhancing quality of life, alternative therapies are now used. Results have been beneficial for my wife.

In my contact with the UK General Medical Council, it suggested that my wife's original psychiatrist ( now retired ) continually prescribing clozapine did not follow "good practice" in her ongoing care. By expressing concerns through our local Member of Parliament, I received feedback from the highest levels of the UK Department of Health & Social Care and Parliamentary Health Committees. They assured me that issues of prescribing anti-psychotics to dementia patients is to be covered in an upcoming national dementia strategy implementation ( i.e Dementia Challenge Plan - 2020 ).

Regardless of what country in which you reside, family and carers of people living with dementia should not feel intimidated from questioning medical professionals to ensure informed choice and consent regarding use of anti-psychotics. Holding  Lasting Power of Attorney (LPA ) in health and welfare affairs is also advisable. [ In UK that is registered with Office of Public Guardian ).

Technically, inappropriate use of anti-psychotics with dementia patients can be interpreted as abuse of their human rights. In fact, a recent report ( February, 2018 ) by the international organisation  HUMAN RIGHTS WATCH condemned their use in US-based residential care homes.

Mary Ann & Jean-Jacques (Jim) Marmont, August, 2015

TRYING TO BE "STILL YOURSELF" - DESPITE DEMENTIA

UPDATED: 12 November, 2017 ( Music Therapy & Dementia ) *

The DVD of acclaimed film STILL ALICE ( based on book of same title ) was released today.  As with films like AWAY FROM HER, IRIS and NOTEBOOK, I draw parallels with events in my own life. Alice is an accomplished Professor of Linguistics, diagnosed with early onset Alzheimers dementia ( also called 'young dementia' ) when only 50 years of age. She thereafter struggles with realities of brain degeneration while attempting to have those around her accept that she is 'still Alice.'

Slowly Alice disappears from her original self as the illness claims her person. Unlike most chronic terminal illnesses, dementia cruelly attacks an individual's personality, character and soul. Its cause is not fully understood. To date, dementia is incurable, ultimately encompassing the victim.

My Alice is called Mary Ann.  She has an incurable rare form of early onset dementia that causes an imbalance in her 'executive functioning' ( i.e. mental, speech and motor abilities ). Known as fronto-temporal dementia, it can impede a person's life faster than Alzheimers. That scenario partially depends upon an individual's mental and physical activity level. I thereupon try to keep her mind stimulated as often as possible. As time passes I wonder how much longer will she be able to appreciate her writings, reading, music, watching operas etc.? How soon will her language be significantly impaired? Will she still like watching her favourite butterflies fluttering around the woodlands ? Will she stop being 'still Mary Ann.'  

Alice is synonymous of a different name for every dementia-sufferer and their carers. Regardless of that name, each story is similar with diverse characters sharing common interests, special requirements, experiences and fates. There are more and more Alices throughout the world every day, as early diagnosis of dementia becomes more common. 



Mary Ann - August , 2014

 Danube River Cruise from Budapest - Nurnberg.

* On 20th September, 2015 the Marmont Family Team of father, two of my three daughters, two sons-in-law and two of four grand children undertook 6.5 kilometre walk, as part of the  Alzheimers Society National Memory Walks, in Oxford University ' Parkland.

12 November, 2017 ( Music Therapy )

On 24th May, 2017 Mary Ann Marmont  was interviewed for DEMENTIA OXFORDSHIRE on national BBC Radio 2 Jeremy Vine Programme about the importance of music therapy helping people who live with dementia. Mary Ann was accompanied by another person who lives with the illness ( Tony O'Connell ). While on air Mary Ann sang an old Italian lullaby that she used to sing to out three daughters as children. 

Mary Ann singing Italian Lullaby.

http://www.bbc.co.uk/programmes/p053vqt4

Part of the original interview is also featured on BBC 2 Jeremy Vine Programme's

" Best Bits of 2017" on Thursday, 28th December, 2017.

" BEING A CARER KILLS "

Updated: 6th July, 2015

Origins & Reasons for this Blog, see here.

I came across this statement in a book My Bonnie by former ITV (UK) newscaster John Suchet. Many situations experienced by Mr. Suchet with his wife Bonnie have paralleled those with my wife ( Mary Ann ). His spouse was diagnosed with dementia in 2006. Sadly, Bonnie died in April, 2015 at the age of 73. Over those ten years John Suchet asked the same questions of himself that ponder through my mind today.

In relation to the health of those who care for people who have serious mental, dementia and associated physical disabilities, being a carer will kill you if one does not take needs of their own life into perspective. Questions like “what will happen if I get seriously ill from stress – or, even get dementia ” spring up. In my own particular case I am nine years older than my wife who is now 63. She suffers from early onset rare Fronto-Temporal Dementia ( FTD) - often called " Young Dementia ".

The potential for mental and physical health problems for older carers is immense. You live the life of the person for whom you care, as well as your own. The experience is "Always on Call, Always Concerned " as depicted by a UK Carer's Trust report.

Hence, a carer has a duty to take care of themselves for the sake of BOTH themselves and  their loved ones. And quite often a person must fight for the rights to receive respite to keep themselves well. I have been fortunate in not only receiving support from three adults daughters, those mental health charities listed on links of this blog, but occasionally even from social services with respite trips. These have usually been spent going to Scotland, Switzerland or other parts of Europe for ice curling adventures.

Curling being played in Kent, England

Curling is an Olympic sport and personal activity that helps my mental health amidst the anxiety of caring for someone with a serious mental illness or dementia. It is also a sport that has lost some international players to suicide brought on by mental illness. "Curling for Mental Illness" is advocacy, as shown in a 2013   mental health campaign throughout Canada.   

Nonetheless, make sure that your caring for another does not cause so much stress that the experience literally ‘ kills you.’

ORIGINS OF JOURNEY ON MENTAL HEALTH AND DEMENTIA ADVOCACY

Updated: 6th July, 2015

The title of this blog originates from an Oliver Stone movie about the Vietnam War of 1963-1975 ( i.e. “Heaven and Earth ” ). I expanded a theme of the film to my life as depicted in an associated blog, Tales from Life’s Odyssey.

Being raised in a stringent military environment, mental health issues were more or less ‘brushed under the carpet.’ My father, a high-ranking career officer in the Royal Canadian Air Force, died at the young age of 42. I was only 16 at the time and this event had profound emotional impact upon my life for years.

I remember the reaction my mother gave upon my one day telling her ‘ I want to see a psychiatrist.’ Teenagers did not routinely say this to a parent in 1960. So, her response of ‘you must be crazy’ might appear comical but was equally not surprising. My emotional dysfunction was carried in my soul for the next fifteen years throughout the world while attempting to show others that ‘ I was my father’s son.’

That path was followed through catastrophes in several war zones ( starting in the Middle East, followed by Laos and Vietnam ),other man-made calamities, and natural disasters. From psychological impacts of those involvements, by Christmas of 1973 my fate was as a helpless, homeless drug addict existing on the freezing streets of New York City. As an official missing person, friends traced and eventually found me, thereupon temporarily placing me in a Salvation Army hostel.

From there I was sent to my native country with assistance of a Canadian-born doctor who worked with Vietnam War veterans at New York’s military hospitals. My symptoms were comparable to serious anxiety disorders suffered by these former soldiers. By 1980 that syndrome was clinically labelled post-traumatic stress disorder (PTSD).

Two wounded comrades in Vietnam War of 1963 -1975:

the conflict that coined distinct term and meaning of PTSD .

Hospitalised in Toronto during spring, 1974, I spent three months at an addiction and psychiatric recovery facility which is now called the CAMH - Centre for Addiction and Mental Health . My distinct remembrance upon discharge was being told that if I ever returned to drug abuse my death would follow shortly thereafter. This reality impressed upon my thoughts for decades thereafter.

However, having a wife enduring the mental imbalance of young dementia  ( officially called 'fronto-temporal dementia' ) really forges my understanding, advocacy and public awareness of mental health issues and brain disorder complications. She suffered periodic frequencies of schizophrenia from 18-20 years of age, and first illustrated dementia traits in her early 50's. The roots of her story are summarised in this section of Tales from Life’s Odyssey.

Hence the purpose of this blog is to highlight experiences of being her main carer, in the face of public stigma, discrimination, sometimes authoritarianism within the psychiatric profession, and, short-sighted government polices towards mental illnesses and dementia.