This adaptation to illness or disability”. Both the

This essay will discuss the impact of disability associated with
Parkinson’s disease, with specific reference to the concepts of health and
wellbeing. This will be chiefly explored through loss of independence leading
to life-altering effects. An examination of the concepts: health, wellbeing,
disability and independence will lead the discussion, followed by an
introduction to Parkinson’s disease. This will precede specific examples of the
impact this has on health and wellbeing. The consequent effects of this
disabling condition are varied and wide-reaching, however this essay will focus
on the psychological, emotional and social effects (Haahr et al., 2011).

 

Health and wellbeing are subjective terms that have several meanings,
each definition taking into account factors as diverse as presence of injury
and mental condition. A definition which was once widely accepted, describes
health through a triad of positive states to strive towards; mental, social and
physical wellbeing (World Health Organisation, 1998 cited in Misselbrook,
2014). However, this definition bears little application to the lives of those
coping with disabilities, labelling any deviance from these states of optimal health
as inherently bad or less than (Barnes and Mercer, 2003). Alternatively, Hafen
questions this positive method of defining health, using his biomedical
perspective to argue for the narrower definition of health characterised by a
lack of disease (Hafen, 2016). Nevertheless, a more tentative and
all-encompassing depiction is offered by Misselbrook (2014, no pagination), “Health
care should aim for the state of least possible illness or disability, or of
maximal functional adaptation to illness or disability”. Both the World Health Organisation’s
impractical and Hafen’s rigid definitions fail to portray health in the way that
many experience it, making Misselbrook’s consideration of those with existing,
long-term impairments most useful to patients in practice (Misselbrook, 2014).
This definition will therefore be used for the purposes of this essay, due to
its relevance in the context of holistic health and wellbeing of people coping
with Parkinson’s.

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An even broader concept, well-being, has been defined as:

 

            a general term encompassing the total universe
of human life domains, including physical, mental and social aspects, that make
up what can be called a ‘good life’ (World Health Organisation, 2001 cited in Hatchett and
Kennedy-Behr, 2017, no pagination).

 

This umbrella definition takes into account such varied aspects as
social relationships, psychological outlook and prosperity (Banister et al.,
2003). Well-being is therefore portrayed as the point at which these aspects
converge, although where this exact point lies is challenging to ascertain and
highly individual (Schwanen and Ziegler, 2011). This is because it is heavily
influenced by personal experience. For example, a person with Parkinson’s
disease has described wellbeing as coming to terms with their limitations
whilst celebrating their abilities (Hatchett and Kennedy-Behr, 2017). In this
instance, the mental aspects of well-being are more meaningful than the physical,
denoting that the balance of mental, physical and social aspects are not always
equal constituents of overall wellbeing.

 

A common neurological condition, Parkinson’s disease is degenerative and
currently has no cure (Parkinson’s UK, 2017). The most distinctive feature of
the disease involves difficulties with movement, including resting tremor, loss
of balance and lack of control over voluntary movements (Brusse et al., 2005). Nonetheless,
the non-motor effects of the disease can be more disabling than the motor
symptoms (Assmus et al., 2013). This suggests that psychological effects, such
as changes in mood, are more significant than they first appear and can have a
greater impact. A gradual loss of independence often accompanies the
progression of Parkinson’s, having a marked effect on the health and wellbeing
of those coping with it.

 

In order to comprehend the impact of independence loss, it is necessary
to delineate the meaning of independence in this paper. On the surface, it may
appear that independence is synonymous with self-sufficiency (Schwanen and
Ziegler, 2011). Upon closer inspection, it can be said that independence is
multifaceted, and that all individuals are interdependent (Schwanen and
Ziegler, 2011). In simpler terms, it is the support received from others which enables
the independence of each person. In Parkinson’s, as in all conditions which
exist on a spectrum, the level of support required can range from emotional
reassurance, to help with activities of daily living, such as eating, bathing and
toileting (Counsell et al., 2016).

 

Loss of independence indicates a critical point in all chronic
neurological conditions and is considered a significant event in Parkinson’s
(Counsell et al., 2015). Not only because independence is regarded as a vital
component of health and wellbeing, but also for the detrimental effect this could
have on quality of life (Banister et al., 2003). To limit this effect, it is important
that nurses in practice assess the individual needs and capabilities of people
with Parkinson’s, facilitating their independence wherever possible. Furthermore,
once independence has been lost, it is rarely regained to any functional degree
and therefore carries with it a prognosis of progressively decreasing levels of
independence and deterioration (Alves et al., 2016). Consequently, it is
crucial that steps are taken to maximise the support available for people with
Parkinson’s. One such step involves putting care plans in place to provide the
appropriate level of support (Swinn, 2005).

 

Experiences of Parkinson’s can differ, with some people affected by the
disease finding they can lead lives that are relatively unchanged post
diagnosis (Godwin-Austen, 1997). Nevertheless, for many the effects are
pervasive and disabling, particularly in the advanced stages of the disease
(Parkinson’s UK, 2017). Disability has been defined by the World Health
Organisation (1980 cited in Barnes and Mercer, 2003, p.13) as, “Any restriction
or lack (resulting from an impairment) of ability to perform an activity in the
manner or within the range considered normal for a human being.” Considering
this definition, the eventual accumulation of impairments caused by Parkinson’s
constitutes a disability (Brusse et al., 2005). It is salient to note that
although the inability to perform an activity is an impairment, social model of
disability would determine that it is a lack of appropriate help available to
perform the activity which is disabling (Morris, 1993 cited in Barnes and
Mercer, 1997). For example, a man with Parkinson’s could find himself unable to
shave due to his tremor, and the inability to complete this task by himself
would disable him (Godwin-Austen, 1997). However, with appropriate help from
health care staff, this activity could be performed without issue. As
dependency increases for basic activities of daily living such as this, the
level of disability experienced is likely to increase (Godwin-Austen, 1997).

 

Following the increase in disability people with Parkinson’s experience,
it is important that the effect on their wellbeing is considered paramount.
Hatchett and Kennedy-Behr (2017) found that participants in a study of people
with Parkinson’s valued their independence so highly that they defined
wellbeing around the concept of independence in their everyday lives. Being
able to make their own choices and do the activities they desired was suggested
to be inextricably linked with feelings of wellbeing (Hatchett and
Kennedy-Behr, 2017). Furthermore, people with Parkinson’s able to continue
living alone were found to have superior levels of self-reported wellbeing than
those patients living in care homes (Cubí-Mollá et al., 2014). This suggests a positive correlation between
level of independence and wellbeing. Therefore, if a person with Parkinson’s
lost their ability to perform tasks of daily living independently, significant
ramifications for their wellbeing would be anticipated (Heckman et al., 2012). That
being the case, it is of vital importance for nurses and other healthcare workers
to promote and assist people with Parkinson’s to live independently. The voices
of those living with disabilities have long called for a greater focus on care
in the community, and for greater support to be available to live independently
(Barnes and Mercer, 2003). This has implications for district nurses, who are
in a position to enable this desire for more independence by supporting
patients in their own homes. With person-centred care at the forefront, therapeutic
interventions could postpone increased dependency at later stages in the condition
(Heckman et al., 2012). This is particularly pertinent in light of the fact
that depression is symptomatic of Parkinson’s, and in turn, mental wellbeing
can be improved by higher levels of independence (Swinn, 2003).

 

As the symptoms of Parkinson’s disease are caused by depletion of dopamine,
it follows that it is common for people with Parkinson’s to experience depression
(Swinn, 2003). This is because some research finds that lack of dopamine, a neurotransmitter,
can be associated with feelings of depression and anxiety (Parkinson’s UK,
2017). The impact of depression on health and wellbeing can be drastic, and
there is evidence that severe depression can lead to more rapid deterioration,
decreased cognition and reduced ability to perform activities of daily living
(Swinn, 2003). It can be deduced that a cycle of further deterioration could
ensue, as reduced levels of independence in daily living would likely cause increased
disability and have a negative effect on wellbeing (Heckman et al., 2012). Moreover,
this could lead to more severe depression which would serve to exacerbate any
decline in abilities, as depressive thoughts can make the completion of
everyday tasks and normal functioning a challenge (Parkinson’s UK, 2017). This
could lead to neglect of self-care due to loss of motivation to wash, which
again, is significant in Parkinson’s as loss of functional independence is
often irreversible (Alves et al., 2016). These consequences are only more
critical when considering the results of research that found the majority of
patients with Parkinson’s, at 58%, admitted to experiencing depression or anxiety
(Cubí-Mollá et al., 2014, Table 2). It is important that patients are aware of
the high prevalence of mental health issues, so that they can recognise the
early signs of depression and anxiety and seek help. Equally, it is important
that health care professionals are aware of how common mental health issues are
in people with Parkinson’s, so that early interventions can take place,
decreasing disability and improving patient outcomes (Swinn, 2003).

 

Closely related to the
prevalence of depression, many people with Parkinson’s experience a change in
their social wellbeing as symptoms progress (Parkinson’s UK, 2017). Withdrawal
from social relationships can lead to decreased self-esteem and diminished sense
of identity, particularly when no longer able to take part in hobbies and
interests. For example, a study found that one woman who used to enjoy dining
out with her partner, no longer felt able to do so due to embarrassment
surrounding her difficulty eating with a tremor (Martin, 2016). Even tremor
that would not be classed as severe when considered in isolation, could attract
attention when in a public place, which could lead to feelings of
self-consciousness (Godwin-Austen, 1997). It is plain to see how the anxiety caused
could discourage people affected from meeting up with friends, further contributing
to feelings of loneliness (Parkinson’s UK, 2017). Avoiding social activities in
this way is likely to lead to isolation, which is also a risk factor for
depression (Parkinson’s UK, 2017). The relationship between disability, dependence
and depression highlights that once one effect is present, the impact on
wellbeing can snowball. Another example of the impact on health and wellbeing
is illuminated by a man with Parkinson’s who enjoyed playing card games with
friends (Martin, 2016). His physical limitations meant he was no longer able to
hold the cards, causing him to avoid taking part in card games out of
frustration (Martin, 2016) This significantly minimised his social circle,
which could affect his emotional wellbeing through the loss of close bonds. In these
circumstances, minor physical effects could cause major disruption to the
patient’s life, bringing about pronounced disability (Godwin-Austen, 1997). A
study by Hatchett and Kennedy-Behr (2017) discovered that by continuing to
engage in social activities, wellbeing was enhanced through the preservation of
social bonds and identity. Accordingly, by encouraging patients to be proactive
in maintaining relationships, the impact on quality of life could be reduced.

 

Overall, the main effects of disability on health and wellbeing discussed
include; independence loss and the associated psychological impact; depression
and changes in mental state; and social withdrawal and isolation. Through these
effects, the importance of care in the community has been elucidated, of
person-centred care as the foundation for therapeutic intervention and of
recognising the link between independence and wellbeing in disability (Schwanen
and Ziegler, 2011). Albeit that Parkinson’s is associated with loss of
independence, it is important that patients understand that with support the
impact on their health and wellbeing can be curtailed (Haahr, et al., 2011). For
nurses caring for people with Parkinson’s, knowledge of the ways disability can
impact health is essential in increasing the help and understanding available. To
summarise, improved education to develop this knowledge could lead to higher
quality care and better outcomes for patients.