INTRODUCTION by 2018. It is predicted that much

INTRODUCTION

“You must
bear with me: Pray you now, forget and forgive: I am old and foolish.”( King Learm1 ,
Shakespeare, 1606)

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Dementia is an umbrella term used to describe a
range of progressive neurological disorders, that is, conditions affecting the
brain. It is estimated that the number of people living with dementia in the UK
by 2025 will rise to over 1 million. (Dementia UKm2 , 2017)

Today,
over 46 million people live with dementia worldwide, this number is estimated
to increase to 131.5 million by 2050.Dementia also has a huge economic impact. The
current total estimated worldwide cost of dementia is US $818 billion, and it
will become a trillion-dollar disease by 2018. It is predicted that much of
this increase will take place in low and middle-income countries. (World
Alzheimer report 2015) The largest proportion of the global population with
dementia now lives in Asia. This is logical as almost half the world’s
population is in Asia.

We in the developed world today see Dementia, the
patient and their family and friends in a different light. Our understanding of
dementia has vastly improved in the last few decades. We have guidelines on
diagnosis, treatment and further management including all aspects of the
patient’s life. The person is treated m3 holistically and not as a disease and slowly but
surely the care provided to the elderly in the developed world is making vast
improvements.

In my daily practice I would find that the
initiation of the diagnosis and treatment for further assessment followed by shared
further care using a multidisciplinary approach to be the norm in modern day National Health Service (NHSm4 ). It is when one steps out of this vastly
streamlined and efficient process that one finds that the part of world which
harbours the biggest portion of dementia cases is falling far behind and will
probably lead to a global crisis. All the criticism of the gap of diagnosis,
initiation of treatment and holistic care we describe in the UK seems to pale
in comparison to what one sees in the developing world.

There is much talk about patient centred holistic
care that we all as clinicians and I generally as a General Practitioner (GP)
have now become acutely alert to. It has become a reflex action as part of my
daily medical practice. It is just as routine as checking one’s temperature to
ask do you live alone, how do you get about? Who does the shopping? Have you
had falls? What do you think we can do to make things better?” every time I see
an elderly frail patient whether they are likely to have dementia or not.

Without sounding cruel or showing lack of empathy,
as that is not what this is about I am about to take the reader on a journey
that is very unlike the story of an elderly frail woman with dementia in the UK
where we strive to give the best possible care we can, given the resources
available to us.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

CASE STUDY

 I will
be looking at a patient with dementia whose experience has been part of my
personal journey as well. As I mature in my role as a General Practitioner in
modern day Britain I am gaining insight and wisdom slowly and changing my
approach to many of life’s important issues. This journey started about 20
years ago before entering medical school and before actually learning much
about Dementia.

I wish
to take this journey exploring medical, social and personal issues surrounding
the Dementia journey of my beloved Grandmotherm5 .

My
memories take me back to a little village in Sri Lanka where she used to rule
the roost with an iron fist the 15-member family who lived in a 3-bedroom
house. We woke up to the sound of her prayers and functioned around her
decisions. After having lost her husband in her mid-thirties she raised 7
children on her own and was a very strong woman. In a time where girls were
married as they turned 16 she wished to educate her three daughters and was
very successful in her attempts. I remember talking to her as a young girl and
being very surprised by her intelligence. As she did not progress beyond the
third grade in her schooling due to cultural issues in the 1920s Sri Lanka no
one gave her much credit for her intelligence. But as a child of 3,4,5 spending
time with her while my mother was at work I found her to be very clever,
accomplished and more over piously beautiful in her white saree. The hours I
would have spent in her airy kitchen munching on pumpkin seeds or drinking
coconut water or rice water with coconut in it will be countless.

I
remember the beginning of the problems. A woman who had always been honest and
trustworthy suddenly started lying. We were amazed and angered at the way she
started lying through her teeth. One day she would make one statement and two
days later she would declare vehemently that she never said that. This started
during her early 60s. She had no ongoing medical problems and was a very fit
lady.

With
years her mobility decreased gradually and started to isolate herself. She was
prone to bursts of anger and irrational behaviour which caused much uproar.
Eventually she became bed ridden and refused to socialise. A figure that had
been present at every birth, wedding and funeral disappeared behind the
screens.

During
my medical school years, I did not see much of grandma. I kept getting reports
of hallucinations, anger outbursts, screaming, shouting, insomnia, refusal to
eat – occasionally complicated by urinary tract infections.

She
complained of every kind of ache and pain, she believed she had heart problems,
lung problems, abdominal pain etc. On top of this she complained of persistent
insomnia. She said she had no appetite and struggled with her bowels and water
works.

 After much contemplation she was taken to
several physicians and was eventually diagnosed in her late 80s with dementia
and was prescribed donepezil. This brought in more lucid intervals and some behaviour
changes but she remained largely dependent on prescribed sleep medication as
well as over the counter cocktail of symptom relief of every nature.  On my return home I found a subdued bedridden
old woman who didn’t hold the same authority. She had a large jar full of
multicoloured tablets.

She
absolutely refused to come out of the room and said she was embarrassed and
ashamed of what she had become. Her lack of self-esteem had incapacitated her forcing
her into a cycle of discouragement and failure. (Goldsmith 1998)

She
continued to sleep during the day and stay up at night. She started having
arguments with all family members and went from child to child every few
months. When I left the country for the UK14 years ago she was about to turn 80
and at the mercy of her children and their spouses who never understood the
journey she was taking.

The
colours in her jar of medicine increased by the day and she strongly believed
she needed to take all of them to stay healthy and alive.

At
times she called upon her children to let her die in peace and sometimes she
fought to stay alive. She struggled to mobilise and was rigid in her movements
and ended up being wheelchair bound and then bed bound.

Eventually
a day before she turned 93 she passed away on a hospital bed with a maid next
to her while I was trying to compile this study. The great sadness that swept
upon me made me even more determined to carry on as she deserved much more than
she received but unfortunately society and the state of current medical practice
surrounding dementia in Sri Lanka leaves a lot to be desired. Dementia was not
understood in Sri Lanka 30 years ago. It still is a largely unexplored
situation where physicians diagnose and prescribe at their will. Relatives do
not get full information about the disease, progression, treatment plan methods
outcome or prognosis.

The
two generations trudge along this challenging journey with no guidance on what
to expect or what to do. More often than not, it ends in frustration anger and
sometimes even hatred towards each other. Families divide, fall apart and blame
each other.

This
journey had not only been painful for her but for all involved in her care.
Particularly to my own mother who was her carer mostly through this journey.
This leads me to inspect the situation more closely as one day I may find
myself in a similar situation as a daughter and care giver rather than a
doctor.

This
journey of my grandmother is not unique although it is personal. As well as in
south Asian communities inside and outside of the UK who have traditionally
been very reluctant to let their elder spend their last years of life in care
have it is also evident amongst patients I see on daily basis and their
families where the understanding of dementia has not yet developed.

 

 

 

 

 

 

 

 

 

 

 

 

THE
CULTURAL DIVIDE- the real discussion.

It now
brings us to the point where we must explore the belief systems that bring
about this huge disparity in the way the developed world cares for the elderly
with dementia and the developing world does. It is beyond the scope of a 3000-word
essay to explore an appropriate number of countries to get a fuller
understanding of this.

In the
UK and the rest of the modern western world a patient, carer and clinicians
involved get guidelines, involvement of multiple charitable organizations and
have a framework within which the care of the elderly patient with dementia
evolves and progresses. The aim is to provide best possible care for the
patient and make the journey as easy as possible for the carers, families and
friends involved in this.

We
diagnose dementia sometimes on the presentation by the patient themselves who
have become very aware of dementia due the information available so readily to
them requesting memory tests and referrals. Sometimes it will be concerned
family members who bring them to the doctor to get help. We start the journey
with detailed history, examinations, investigations and referral to memory
clinic. From where they get their diagnosis and prognosis and ample guidance on
the rights of the patient and all help that is available to them. Although it
is still a very painful journey as the patient changes gradually it is a
journey most families take together with compassion and the healthcare
professionals take every care to make it easier for them.

In a
society where dementia is not so widely recognised and has completely different
cultural norms it would be unthinkable for a woman in her 60s to seek medical advice
believing she may have a neurological problem. The taboos around mental illness
itself would stop her from declaring herself even slightly mad.

The
behaviour changes would most probably be noticed by others but would be taken
as part of the person’s character and undoubtedly will be widely discussed in a
critical manner but it would not be the prompt for taking her to the doctor for
a memory test. It would be in along the lines of mad old woman who causes
endless trouble.

Sri
Lanka is a South Asian country with a very high literacy rate and a very basic
National health care system. The elderly are still very traditionally taken
care of by their own children and grandchildren in their own homes. The concept
of old age homes is very gradually beginning to make its way into society.

The
average life expectancy of a Sri Lankan Female currently stands at 78 years
according to the World Health Organisation ( http://www.who.int/countries/lka/en/) .
Dementia is stated as the cause of death with a ranking of 42 where as it is
number 4 in the UK. Although older people are beginning to live longer in Sri Lanka
this is a recent development. Dementia was rarely witnessed and only a very
occasional family member lived to be into their 80s. Mostly men and women die
in their 60s, of Cardiovascular disease. Therefore, Dementia is only now being
understood and taken seriously.

 

From what I understand of how her
diagnosis was made -there wasn’t one. She was declared demented and the family
were to take her home and do what they could.

She exhibited mostly signs of Lewy body
dementia. The most significant ones being the changes in her mental state on a
regular basis and the decline of her mobility which were largely Parkinsonian. No
body understood how and why her mental status changed daily. Therefore, on
occasion it was thought to be fake or ‘acting’.

 

I am of the opinion although the
disease is not understood the spiritual nature of the decline of the cognitive
function is largely accepted in the eastern world. Even when in that mental
state one was to be respected and loved and obeyed. I believe although in
despair and anger and in irritation the family tried the best to serve her in
her last days as their mother.

 I am highly sceptical of the health care
provisions. If this was my patient, 90 years old, with above symptoms she would
have had bloods, an electrocardiogram, a chest X-ray and followed by a referral
to the memory clinic and social services for assessment of her living
conditions.

 As
a person with no complicated medical problems she would not have been
prescribed one third of the medication she was given in her last decade of life.

She would have had accommodation
changes, railings fitted and carers round the clock. She may have even ended up
in a care home with ample numbers of well-meaning carers and nurses going in
and out of her room. She would have had input from many well-meaning charities and
would have if she or the family wanted had ready access to websites and further
information.

 

 

Although the above solution sounds
perfect I feel no 93-year-old grandmother of 23 and great grandmother of 23
would like to spend her last days in a care home surrounded by carers. I am
quite convinced that even with arguments and falling out she was in a place
where she was still part of the family, could see their movements and saw at
least one of them every day. As Atul Gawandem6  states “I learnt a lot in medical school but mortality was not one of
them”. (Gawande.2014)

It is not how long you live but how you
live the time given to you. We the modern society make every effort to extend
life by any means but do not consider the end of life as part of life. As physicians
in our endless knowledge and wisdom and the desire to save human life we are focused
on diagnosis, prognosis and treatment. Society is changing and struggling with
the vast number of elderly members, retirement age is going up, there are more
retirement villages and elderly care homes than ever before and are on the rise
each day.

The traditional joint family living is
slowly but surely fading away even in south Asia and British Asian communities.
In another 50 years, I probably will not be the centre of everyone’s attention.
I might as well start looking for my favourite retirement village to live a
cosy, safe and well-fed life whiling my time away trying to keep out of the way
of my children, grandchildren and great grandchildren.

 

The wisdom of age that is passed down
to the next generation now sits in a care home while the next generation struggles
to come to terms with the challenges of the growing families face. The wisdom
that would have seen them through has been locked away safe.

 

The cycle of life by nature has been
designed so that each generation can enrich the next or the one before in a
positive way and modern living has started to take this away from all
generations. The vast increase in mental illness in the young people of today
may well be a by-product of the loss of regular contact with the wisdom of one’s
grandparents.

 

David Walliamsm7 () captures this perfectly in his escapades in “Gm8 randpas great escape.” Where grandpa flies up, up and away while
grandson realises the real meaning of life is in doing what brings you joy.
Here the connection across the generations is portrayed so beautifully that it
is heart-warming. The grandson has devised a method of communicating with his
grandfather using military commands to which he responds tremendously. Where
all adults failed a child found the best way to look after his grandfather.

 `It would be better to
live for one day wise and meditative, than for a hundred years stupid and
lacking awareness. It would be better to live for one day full of vigor, than
for a hundred years lazy and idle’ (Buddha Dhp.111-12). 

 

CONCLUSION

Analysing
the above I conclude that neither the method of the developed nor the
developing world has yet captured the essence of dementia in the elderly and
the best care for their last days.

It
would be ideal if there was a middle path. If the patients were to live as they
would have in their own homes as independently as possible surrounded by those
they have nurtured and loved with help from a multidisciplinary team that
educates and supports the family that would be the ideal outcome.

It was
a difficult journey where I had to watch my mother and her siblings struggle
with the care of their mother and the regrets they were left with after her
death. At the same time, it was a great success in my eyes as she did not end
up in a nursing home which smelt of boiled cabbage surrounded by unfamiliar
faces and objects.

They must be included, respected,
given warmth, validated, enabled and made part of the community (Brooker 2007)

 

 

 

 

 

 

 

 

 m1Need
to put in author and year Shakespeare 1606

 m2Need
year

 m3Holistically?

 m4No
acronyms a lay person academic reads this

 m5Yes
totally appropriate as in context

 m6Great
quote needs speech marks and a year

 m7Put
in year here

 m8Speech
marks for a book title and year