| The
Column is a monthly feature that explores the world
of creativity and aesthetics.
Dementia
and Creativity
Mike
de Sousa, Director, AbleStable
Dementia is the name given to symptoms of
confusion and memory loss which result from many
conditions which effect and gradually destroy the
brain, the most common being Alzheimer's. Dementia
is not a disease in itself. Many of those who have,
or are close to someone with dementia, experience
a
journey into darkness with
little that is positive to offset their sense
of profound loss. There is however one area of
hope that is a powerful force
that transforms
the perception and experience of those with dementia:
the phoenix of creativity.
Pray,
do not mock me:
I am a very foolish fond old man,
Fourscore and upward, not an hour more
nor less;
And, to deal plainly,
I fear I am not in my perfect mind.
Methinks I should know you, and know
this man;
Yet I am doubtful for I am mainly ignorant
What place this is; and all the skill
I have
Remembers not these garments; nor I know
not
Where I did lodge last night. Do not
laugh at me.
William Shakespeare: King Lear, Act
4, Scene 7
"Even
though our brains age, it doesn't
diminish our ability to create. Mental
decline was once thought of as inevitable
with aging. Scientists now know that
is not true. The brain continually
rewires and adapts itself even in
old age.
Even
dementia doesn't wipe out all
aspects of creativity, indeed, some
forms release astounding abilities
to draw by people
who never before did so, providing
important clues to where the brain
houses creative abilities."
Dr.
Bruce Miller
Behavioural
Neurologist, University of California,
San Francisco. |
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Defining
Dementia
The
following is an edited description from Wikipedia,
the non-profit
organization that operates the open encyclopedia:
Dementia
is progressive
decline in cognitive function due
to damage or disease in the brain
beyond what might be expected from
normal aging. Particularly affected
areas may be memory, attention,
language and problem solving, although
particularly in the later stages
of the condition, affected persons
may be disoriented in time (not
knowing what day, week, month or
year it is), place (not knowing
where they are) and person (not
knowing who they are).
Symptoms
of dementia can be classified
as either reversible or irreversible
depending upon the etiology of
the disease, although dementia,
by definition, is irreversible
and will eventually result in
death.
Probably less than 10% of all
dementias are reversible. Dementia
is a non-specific
term that encompasses many disease
processes, just as fever is attributable
to many etiologies.
Early
symptoms of dementia often consist
in changes in personality, or in
behaviour. Often dementia can be
first evident during an episode
of delirium. There is a higher
prevalence of eventually developing
dementia in individuals who experience
an acute episode of confusion while
hospitalised.
Dementia
can affect language, comprehension,
motor skills, short-term memory,
ability to identify commonly
used items, reaction time, personality
traits, and executive functioning.
Even without signs of general
intellectual
decline, delusions are common
in dementia. Elderly
people can also react with dementia-like
symptoms to surgery, infections,
sleep deprivation, irregular food
intake, dehydration, loneliness,
change in domicile or personal
crises. This is called delirium,
and many if not most dementia patients
also have a delirium on top of
the physiological dementia, adding
to the symptoms. The delirium can
go away or greatly improve when
treated with tender care, improved
food and sleeping habits, but this
does not affect the alterations
in the brain. Affected persons
may also show signs of psychosis
or depression. It is important
to be able to differentiate between
delirium and dementia.
Wikipedia |
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Who
Has and Who Will Get Dementia
There
are an estimated 18 million people with dementia
worldwide. By 2025, it is projected that this
figure will have doubled to 34 million. Dementia
affects around 1 in a 1,000 people in the UK
between the age of 40 and 65; 1 in 20 people
over the
age of 65; and 1 in 5 people over the age of
80. I've illustrated this in a graph below to
show how many of us will suffer from this condition:
Lost
and Secret Worlds
As
a very young child I moved from house to house,
never staying longer than a few months in any
one place. My mother and father had difficulties
living with one another, although neither was
to blame for their inability to cope. When I
was close to four years old my two aunts stepped
in and gave my sisters and I a stable
environment, one where we would all see far more
of one another.
I
grew up in an
unconventional setting and this has greatly
informed my approach to life. My
mother was in and out of psychiatric hospital
all her
life,
and as a child I would visit her and observe
the
many lost people for whom
life had often been a cruel experience. Struggling
to find themselves in a world of medication,
institutional dependence, and social isolation,
many would arrive as more complete than they
would leave, that is if they ever left. Some
like my mother would come for a few months and
escape after good behaviour, many others would
never be released and would live out their profoundly
sad existence in the forced company of others
they would have never chosen to be with. I soon
came to realize there was no more than a hairs
breadth between those inside the walls of madness,
and those living and working outside in the free
world of the majority.
It
was during my frequent visits to Park Prewett
in the 1960s and 70s that I first came across
people
who were
living with dementia. In those days people with
dementia were perceived of as having "lost
their mind". As a child however I knew of
many in the hospital who would share
a moment
with me that for
a brief and precious time
let me into their world, a world that was far
more than the nurses or doctors were aware of
or appreciated. The patients
protected themselves from the judgments of those
in the institution
who would without hesitation, forcibly sedate,
and on many occasions electrocute them in the
name of "therapy" should their behaviour become "unacceptable".
There were nurses and doctors who were kind,
but those
who were unkind would strike fear into the heart
of those most vulnerable of souls. For years
this fear
prevented others from seeing the
secret worlds that the inmates had built.
Now,
in
the West, those who have difficulties coping
with life or with a tendency that others find "not
normal", are largely treated differently
by the state and society than thirty years ago.
Those with dementia are also better
understood and cared for.
There
often comes a time however when those caring
for their loved
ones with dementia, having
given
all they have and lost all they had, find their
feelings change. The person they once knew "is
gone".
To these carers only a physical shell resembling
the
person they
once
loved remains.
Life becomes
too painful and difficult. Guilt
ridden, they hand over their charge to
others. It is in these
most difficult of times when a loved one with
dementia who has been placed into the care
of others might ask
"why do you leave me here? When am I going
home?"
Our
sense of home can be expressed as a place where
we feel valued, of use, loved,
and at ease. Achieving this state of equilibrium
continues to be possible, even at the most
challenging times, and creativity can
be a vital force that assists in this aim.
Creativity
and Dementia
Dementia
in its early and middle stages can open
a world that had previously been hidden from
view.
People
with dementia are often more open to explore
and develop their creativity than those without
the condition. The social inhibition and unwillingness
to experiment
that defines the world of the majority gives
way to a more flexible and often more rewarding
approach to life. In some
ways those with dementia often become less constrained
by social etiquette and display more open, honest
behaviour that might otherwise be hidden from
view.
I
am not advocating painting, visual design, poetry,
or composing music as "therapies" as
this undermines
the potential
value of what is produced. Some mistakenly judge
the worth of creative works in terms of their
evidence of technique or "cleverness".
Poetry
for example might be viewed as a creative area
not appropriate for people with dementia
as it requires a "good use of language".
Society often values the intellectual
above other qualities as we use language to
articulate
our thoughts, observations, and arguments.
People with dementia however not only have
difficulty
with using language
in
this rational
way, but also more generally with tasks associated
with memory. The language process however
is not purely rational and relies equally on
the
significant unconscious mechanisms that gravitate
towards
the more emotional and sensual. Great poetry
is created by those who are attuned to the
nonintellectual/rational and even the most
cerebrated of authors have an editor on their
tail. A carer can be that editor working in
partnership with the person with dementia.
Writing
poetry or having someone else record a poem can
be tremendously confirming of a person's sense
of identity because
people with dementia are often neglected. People
don't talk to them because they find what they
say
strange
and what they do strange. When we take the time
to listen there is often far more being said
than we at first realize.
Music
often continues to connect long after other
avenues appear to be closed off. Something
very difficult to achieve in what is often a
very lengthy period of silence and sadness is
to not
focus
on wanting "the person we knew" to
return, but to respect and welcome the person
that is here today. For
those in the late stages of dementia where
all that appears present is of the body, it is
important for the carer to also explore their
own creativity.
The
Importance of Touch
Sometimes
a patient with dementia seems so far down a path
that is removed from the world of the rational,
that it might be judged as counter-productive
to "stimulate" them with tasks or creative
challenges. It may be that for some with the
late stages
of dementia, strategies that seek to open new
pathways might be frightening and bewildering.
For these people it might be judged that
what is of most importance is to reassure and
support the individual with an essential humanity.
Talking
gently, respectfully, and physical
reassurance through touch, often communicates
and encourages a profound sense of peace. We
can forget that being creative is not always
focused on the skills of the mind, but as much
on our sensory connection with those close to
us.
The
Choice
Many
of us will face
a choice between viewing the world positively
or negatively. My mother took her own life one
Christmas some twenty
five years ago because she felt so profoundly
alone and unknown. My father died some five years
later as the booze he depended on for solace
from the failure of his marriage and lost potential
broke his body. It was from that time
the choice of how I was to move forward became
clearer. In
such times the
world is either a place full with hope or a place
of desperation. As Andy in the Shawshank Redemption
says: "Get
busy living, or get busy
dying". The choice
of which
world we inhabit is very much up to us. I
believe the exploration of our creative potential
can
be a powerful and constructive force in
helping us find the more positive and ultimately
enriching path.
Useful
Links
The
Alzheimer’s Association:
http://www.alz.org
The first
and largest voluntary health organization dedicated
to finding prevention methods, treatments and an
eventual cure for Alzheimer’s.
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