This essay will discuss the impact of disability associated withParkinson’s disease, with specific reference to the concepts of health andwellbeing. This will be chiefly explored through loss of independence leadingto life-altering effects.
An examination of the concepts: health, wellbeing,disability and independence will lead the discussion, followed by anintroduction to Parkinson’s disease. This will precede specific examples of theimpact this has on health and wellbeing. The consequent effects of thisdisabling condition are varied and wide-reaching, however this essay will focuson 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 injuryand mental condition.
A definition which was once widely accepted, describeshealth through a triad of positive states to strive towards; mental, social andphysical wellbeing (World Health Organisation, 1998 cited in Misselbrook,2014). However, this definition bears little application to the lives of thosecoping with disabilities, labelling any deviance from these states of optimal healthas inherently bad or less than (Barnes and Mercer, 2003). Alternatively, Hafenquestions this positive method of defining health, using his biomedicalperspective to argue for the narrower definition of health characterised by alack of disease (Hafen, 2016). Nevertheless, a more tentative andall-encompassing depiction is offered by Misselbrook (2014, no pagination), “Healthcare should aim for the state of least possible illness or disability, or ofmaximal functional adaptation to illness or disability”. Both the World Health Organisation’simpractical and Hafen’s rigid definitions fail to portray health in the way thatmany 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 toits relevance in the context of holistic health and wellbeing of people copingwith Parkinson’s. An even broader concept, well-being, has been defined as: a general term encompassing the total universeof human life domains, including physical, mental and social aspects, that makeup what can be called a ‘good life’ (World Health Organisation, 2001 cited in Hatchett andKennedy-Behr, 2017, no pagination). This umbrella definition takes into account such varied aspects associal relationships, psychological outlook and prosperity (Banister et al.
,2003). Well-being is therefore portrayed as the point at which these aspectsconverge, although where this exact point lies is challenging to ascertain andhighly individual (Schwanen and Ziegler, 2011). This is because it is heavilyinfluenced by personal experience. For example, a person with Parkinson’sdisease has described wellbeing as coming to terms with their limitationswhilst celebrating their abilities (Hatchett and Kennedy-Behr, 2017). In thisinstance, the mental aspects of well-being are more meaningful than the physical,denoting that the balance of mental, physical and social aspects are not alwaysequal constituents of overall wellbeing. A common neurological condition, Parkinson’s disease is degenerative andcurrently has no cure (Parkinson’s UK, 2017). The most distinctive feature ofthe disease involves difficulties with movement, including resting tremor, lossof 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 motorsymptoms (Assmus et al., 2013). This suggests that psychological effects, suchas changes in mood, are more significant than they first appear and can have agreater impact. A gradual loss of independence often accompanies theprogression of Parkinson’s, having a marked effect on the health and wellbeingof those coping with it. In order to comprehend the impact of independence loss, it is necessaryto delineate the meaning of independence in this paper. On the surface, it mayappear that independence is synonymous with self-sufficiency (Schwanen andZiegler, 2011).
Upon closer inspection, it can be said that independence ismultifaceted, and that all individuals are interdependent (Schwanen andZiegler, 2011). In simpler terms, it is the support received from others which enablesthe independence of each person. In Parkinson’s, as in all conditions whichexist on a spectrum, the level of support required can range from emotionalreassurance, to help with activities of daily living, such as eating, bathing andtoileting (Counsell et al.
, 2016). Loss of independence indicates a critical point in all chronicneurological conditions and is considered a significant event in Parkinson’s(Counsell et al., 2015). Not only because independence is regarded as a vitalcomponent of health and wellbeing, but also for the detrimental effect this couldhave on quality of life (Banister et al., 2003). To limit this effect, it is importantthat nurses in practice assess the individual needs and capabilities of peoplewith Parkinson’s, facilitating their independence wherever possible. Furthermore,once independence has been lost, it is rarely regained to any functional degreeand therefore carries with it a prognosis of progressively decreasing levels ofindependence and deterioration (Alves et al., 2016).
Consequently, it iscrucial that steps are taken to maximise the support available for people withParkinson’s. One such step involves putting care plans in place to provide theappropriate level of support (Swinn, 2005). Experiences of Parkinson’s can differ, with some people affected by thedisease finding they can lead lives that are relatively unchanged postdiagnosis (Godwin-Austen, 1997). Nevertheless, for many the effects arepervasive and disabling, particularly in the advanced stages of the disease(Parkinson’s UK, 2017). Disability has been defined by the World HealthOrganisation (1980 cited in Barnes and Mercer, 2003, p.13) as, “Any restrictionor lack (resulting from an impairment) of ability to perform an activity in themanner or within the range considered normal for a human being.” Consideringthis definition, the eventual accumulation of impairments caused by Parkinson’sconstitutes a disability (Brusse et al., 2005).
It is salient to note thatalthough the inability to perform an activity is an impairment, social model ofdisability would determine that it is a lack of appropriate help available toperform the activity which is disabling (Morris, 1993 cited in Barnes andMercer, 1997). For example, a man with Parkinson’s could find himself unable toshave due to his tremor, and the inability to complete this task by himselfwould disable him (Godwin-Austen, 1997). However, with appropriate help fromhealth care staff, this activity could be performed without issue. Asdependency increases for basic activities of daily living such as this, thelevel 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 peoplewith Parkinson’s valued their independence so highly that they definedwellbeing around the concept of independence in their everyday lives. Beingable to make their own choices and do the activities they desired was suggestedto be inextricably linked with feelings of wellbeing (Hatchett andKennedy-Behr, 2017). Furthermore, people with Parkinson’s able to continueliving alone were found to have superior levels of self-reported wellbeing thanthose patients living in care homes (Cubí-Mollá et al., 2014). This suggests a positive correlation betweenlevel of independence and wellbeing. Therefore, if a person with Parkinson’slost their ability to perform tasks of daily living independently, significantramifications for their wellbeing would be anticipated (Heckman et al., 2012). Thatbeing the case, it is of vital importance for nurses and other healthcare workersto promote and assist people with Parkinson’s to live independently.
The voicesof those living with disabilities have long called for a greater focus on carein the community, and for greater support to be available to live independently(Barnes and Mercer, 2003). This has implications for district nurses, who arein a position to enable this desire for more independence by supportingpatients in their own homes. With person-centred care at the forefront, therapeuticinterventions could postpone increased dependency at later stages in the condition(Heckman et al., 2012). This is particularly pertinent in light of the factthat depression is symptomatic of Parkinson’s, and in turn, mental wellbeingcan 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, andthere 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 couldensue, as reduced levels of independence in daily living would likely cause increaseddisability and have a negative effect on wellbeing (Heckman et al., 2012). Moreover,this could lead to more severe depression which would serve to exacerbate anydecline in abilities, as depressive thoughts can make the completion ofeveryday tasks and normal functioning a challenge (Parkinson’s UK, 2017). Thiscould lead to neglect of self-care due to loss of motivation to wash, whichagain, is significant in Parkinson’s as loss of functional independence isoften irreversible (Alves et al., 2016).
These consequences are only morecritical when considering the results of research that found the majority ofpatients 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 ofthe high prevalence of mental health issues, so that they can recognise theearly signs of depression and anxiety and seek help. Equally, it is importantthat health care professionals are aware of how common mental health issues arein people with Parkinson’s, so that early interventions can take place,decreasing disability and improving patient outcomes (Swinn, 2003). Closely related to theprevalence of depression, many people with Parkinson’s experience a change intheir social wellbeing as symptoms progress (Parkinson’s UK, 2017). Withdrawalfrom social relationships can lead to decreased self-esteem and diminished senseof identity, particularly when no longer able to take part in hobbies andinterests.
For example, a study found that one woman who used to enjoy diningout with her partner, no longer felt able to do so due to embarrassmentsurrounding her difficulty eating with a tremor (Martin, 2016). Even tremorthat would not be classed as severe when considered in isolation, could attractattention when in a public place, which could lead to feelings ofself-consciousness (Godwin-Austen, 1997). It is plain to see how the anxiety causedcould discourage people affected from meeting up with friends, further contributingto feelings of loneliness (Parkinson’s UK, 2017). Avoiding social activities inthis way is likely to lead to isolation, which is also a risk factor fordepression (Parkinson’s UK, 2017). The relationship between disability, dependenceand depression highlights that once one effect is present, the impact onwellbeing can snowball. Another example of the impact on health and wellbeingis illuminated by a man with Parkinson’s who enjoyed playing card games withfriends (Martin, 2016).
His physical limitations meant he was no longer able tohold the cards, causing him to avoid taking part in card games out offrustration (Martin, 2016) This significantly minimised his social circle,which could affect his emotional wellbeing through the loss of close bonds. In thesecircumstances, minor physical effects could cause major disruption to thepatient’s life, bringing about pronounced disability (Godwin-Austen, 1997). Astudy by Hatchett and Kennedy-Behr (2017) discovered that by continuing toengage in social activities, wellbeing was enhanced through the preservation ofsocial bonds and identity. Accordingly, by encouraging patients to be proactivein maintaining relationships, the impact on quality of life could be reduced. Overall, the main effects of disability on health and wellbeing discussedinclude; independence loss and the associated psychological impact; depressionand changes in mental state; and social withdrawal and isolation. Through theseeffects, the importance of care in the community has been elucidated, ofperson-centred care as the foundation for therapeutic intervention and ofrecognising the link between independence and wellbeing in disability (Schwanenand Ziegler, 2011). Albeit that Parkinson’s is associated with loss ofindependence, it is important that patients understand that with support theimpact on their health and wellbeing can be curtailed (Haahr, et al.
, 2011). Fornurses caring for people with Parkinson’s, knowledge of the ways disability canimpact health is essential in increasing the help and understanding available. Tosummarise, improved education to develop this knowledge could lead to higherquality care and better outcomes for patients.