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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; Godwin-Austen, 1997). 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. 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).

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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.

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