The Literature and Narrative of Dementia
Dementia is a condition that cannot be fully conveyed through literature, but the narrative has its place in learning about and analyzing a person’s life course, which is overtaken by the clinical and medical courses.
Relationship
dynamic changes
When someone is diagnosed with
dementia, their whole world is changed, and the way that they experience life
is dramatically altered. It is critical to hang onto what they can do, and can
remember, but it is equally important to be able to anticipate the gaps that
they will not be able to fill in. Spouses will be faced with moments where their
spouse no longer remembers the dynamic of their relationships, when their
spouse flirts with other people, etc… You become whoever they need you to be. Today
you are their cousin, tomorrow you might be their father, the next, you are an
old pet.
In addition to these changes in
perception, a caregiver’s role will also be altered. If you are a spouse, you are
to some degree, a caregiver. Your relationship might more closely model the
parent-child structure. Some works of literature that explore dementia in this
light include The Notebook by Nicholas Sparks and works by Shakespeare including
King Lear and Hamlet.
The changed
self
Dementia is the epitome of an
existential crisis. It is a daily challenge to what we hold dear and forces us
to either confront our losses and re-grieve or to collect ourselves and move
forward with the remnants of what we still have – which is more than what
people think. Each case is different; while some individuals living with
dementia might maintain their personality, others might be completely different
than who they were before they got diagnosed/showed signs.
This also brings into question, the
Retrogenesis theory. This model of Alzheimer’s posits that once humans reach a
certain point in aging, their brain and body begin to age in reverse, and we revert
to the habits and mannerisms that we had as children. A study has observed inverse correlations between functional levels found in Alzheimer’s
FAST stage model and the developmental age of children. For example, an individual
in the 6th stage of Alzheimer’s, they have the same functional level
as a one to one and a half-year-old infant.
Those that once took care of their
children become the one that needs care themselves. Retrogenesis theory helps
to explain certain functional limitations that come with Alzheimer’s disease,
but it cannot speak for all aspects especially with the activities that are
appropriate for the age, like crafts or playing with building blocks, these
activities can be adapted to be more age-appropriate. In addition, aspects of
dignity are different as well, for example, calling an incontinence brief, a
diaper, or calling a clothing protector, a bib.
Narrative
Agency
One aspect of the medical humanities
that deserves more attention is narrative medicine. When an individual is
diagnosed with dementia, discussions of the power of attorney, advance directive, and
living wills pop up, while this person will want to be involved in
decision-making processes. Their perspectives are often dismissed, overlooked,
and ignored, which must change for dementia care to be successful.
Caregivers need to be more open to
letting the individual lead their own lives and to utilize strength-based models
of care that enable and foster independence. Learning how people describe their
relationship with dementia can help caregivers improve their performance and the service provided. For example, there are many illness metaphors and coping
metaphors that someone might use to describe their condition like “fighting for
my life” or “vanquish the beast.” Certain cultures have different perceptions
of sickness, using temperature, harmony, or the biomedical model to communicate
imbalance and illness. Utilizing the same verbiage as the individual living
with dementia will help them to trust you, develop a rapport, and they will feel
safe with you. Fight their monster with them!
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