Patients with long-term conditions (LTC) have chronic diseases that currently do not have a cure but can only be managed by drugs or other forms of treatment. Based on a case study, this essay seeks to evaluate various elements of holistic care delivered to people with LCT. With a specific focus on dementia, the paper will examine how dementia affects the individual and their families, the role of nurse practitioners in managing the condition, and the various approaches or strategies used in managing the condition. However, the first section of this paper gives a description of the case study.
Mary’s mental health has been deteriorating. As a result, her behaviour has changed. She is becoming jealous of others and she has been experiencing memory loss. Kenny’s previous stay with her grandmother gave her some experience caring for dementia. Hence, when she found her 65 years-old mother walking to unknown destinations, she recognized they were signs of dementia. Kenny’s own health has also been deteriorating since she was diagnosed with chronic obstructive pulmonary disease but believes she is the only source of care to her mother. She shares the same house with her mother and most times experience sleepless nights. Moreover, even though she receives some support from her two siblings who live outside the city, they might not be aware of physical and emotional impacts of delivering care to her mother. Her siblings regularly pop up to check in them and bring snacks for their mother. Kenny feels happy to know that her family is there for her especially because they pay a visit to check them.
Boots et al (2015) describes dementia as a syndrome caused by several types of illnesses where the patient experiences a progressive decline in and disruptions in various areas of her normal life such as communication skills, poor memory, and inability to engage in normal daily activities. Back in 2010, the Alzheimer’s Society (2010) estimated that by the year 2025, the number of dementia patients in the UK shall have increased from 750,000 to more than a million people. Nonetheless, whereas dementia is most prevalent among the old age, research by Alzheimer’s Research UK (n.d) indicated that a significant portion (40.7%) of England’s population under the age of 65 was diagnosed with dementia by August 2018. Moreover, Alzheimer’s Research UK (n.d) points out that, in the year 2017/2018, 66% of persons above 65 years have been diagnosed with dementia. Statistics of other boroughs in the UK indicate that 67% of Scotland’s population has been diagnosed with dementia while the condition’s prevalence in Wales was at 53%. This alarming rate of dementia prevalence in the UK, especially in England where Mary resides, shows the dire need for inquiry and knowledge over holistic care for dementia as a long-term condition.
The existing body of research shows that dementia changes the relationship between the patient and the carer. Moreover, according to Stokes et al (2014), dementia has a negative impact on the relationship between the caring family members and due to the fact that they develop resentment and guilt for taking on a major responsibility to care for the patient.
Research by Tylor et al (2008) indicates that the impact of dementia on the victim’s personality and behaviour makes family members treat them in a different way. In the study, the respondents indicated that the difference in the way they treat family members with dementia was as a result of the struggle to cope with the patient’s behaviours such as frustration and hanger which could sometimes lead to aggression and physical violence. Ultimately, as Ho et al (2009) point out, these factors cause depression and frustration among family members of the victims. For example, Kenny believed that the relationship between him and her mother had reversed from an adult relationship to him being the parent and his mother being the child. This corroborates with the assertions of Boots et al (2015) that some family members feel the need to treat the person as a child, for example, by hiding things that might hurt them or constantly reassuring them about a situation. Kenny also observed that the changing relationship between her and her mother had partly been caused by the fact that she was becoming more unpredictable.
Another prominent effect of dementia is social isolation, where the family carers lack time to socialize due to the increasing caring duties they have to perform. This impact is not unusual because research by Carers UK (2014) revealed that 83% felt socially isolated or lonely for being dedicated to their caring responsibilities. Interestingly though, respondents in the study by Carers UK (2014) were keen to highlight the positive elements of providing care to their loved ones, especially at such crucial moments.
Kenny felt that holding the responsibility of care to her mother largely made life more convenient for the rest of her family. Although Kenny’s siblings paid visits and provided financial help, they did not play any significant role in caring for their mother nor experience social isolation to the extent that Kenny felt – because he could not leave her mother for a longer period of time. However, Kenny is not alone. Statistics by Carers UK (2014) indicated that 75% of the respondents were not well aware of the effects that shouldering the responsibility of care to dementia family members had on their social well-being. Noteworthy, Kenny feels that she is lucky to have family members who at least offer help, making him feel sometimes that she is not lonely.
Research evidence reveals that the burdens of responsibility encountered by family members who care for dementia patients are experiencing negative physical and psychological consequences. For instance, Wilks et al (2011) reveal that family members who care for people with dementia experience exhaustion and ill-health as a result of depression and stress compounded by social isolation. Similar observations are made by Carers Trust and Men’s Health Forum (2014) by highlighting that stress and depression is a common problem faced by dementia carers due to the responsibility of providing round-the-clock care to the patient. As a result, the carers get saddened and stressed by the responsibility of care – this leads to poor psychological well-being.
The role of nurse practitioners in providing quality care for dementia patients is predominantly documented in various UK health policy documents such as the National Institute for Health and Care Excellence (NICE) guidelines. Fundamentally, the NICE guidelines on dementia care emphasize on the importance and need for integrated care and the application of various healthcare technologies in dementia care (Goodwin et al, 2010). For instance, NICE (2018) stipulates that whenever a nurse practitioner encounters any patient with symptoms of dementia, they should be willing to take any appropriate action towards initiating dementia care for the patient.
Nonetheless, existing literature reveals that nurse practitioners are likely to meet several dementia cases in their normal duty of care and therefore it is their ultimate responsibility to handle these patients whether they stay in care homes or in their private residences (Bamford et al, 2014).
Ideally, according to Carbonneau et al (2010), the role of the nurse practitioner as the ‘backbone’ of care during the patient’s dementia life borders monitoring and coordination as they act as the point of linkage between the client and the services for support and interventions. First, nurses should be aware of the symptoms and risk factors for dementia, as well as the necessary actions to be taken as soon as these symptoms are noted (Carers UK, 2014). for instance, the nurse should be able to identify other factors of the patient’s life such as smoking behaviour, hypertension or obesity, and be aware that both people below and above the age of 65 years are highly susceptible to dementia. However, Carers Trust and Men’s Health Forum (2014) argues that being aware of the symptoms and risk factors for dementia may be useless if the nurses are unable to take proactive roles in identifying cases of dementia. This proactive role includes screening patients for dementia symptoms regardless of whether the patient’s carer or the patient suggests so.
Another important role of nurses is to conduct a diligent assessment of the patient by conducting the relevant blood test and cognitive assessments to ascertain the patients’ dementia condition (Alzheimer’s Society, 2009). However, Boyd (2008) questions the role of nurses in assessing the patients if they lack the necessary knowledge and skills to perform such assessments. It means that the nurses should be trained on the basic knowledge and skills for conducting baseline assessments, as well as the advanced knowledge and skills for conducting subsequent assessments that culminates into a formal dementia diagnosis.
Upon formal diagnosis, nurses should refer the patients to specialist facilities where they are able to get a further diagnosis and the results of this diagnosis documented in the facility’s register (Goodwin et al, 2010). According to Bratas et al (2010), there should be routine information sharing between nurses and specialist facilities in order to facilitate continued care by proactively monitoring the patient’s progression of the condition. Similarly, it is the role of nurses to work collaboratively with other health and social care providers to share information with them and ensure that the patient is cared for within the community according to their wish (Crisp et al, 2013). For example, nurse practitioners, as well as social workers, should coordinate to ensure that the care home staffs are supported with the required resources.
Another significant role played by nurse practitioners is to design the patient’s care plan and that the care plan is well-recorded. More importantly, according to Hunter & Miller (2016), the care plan should be tailored to the individual and aimed at controlling other factors such as blood pressure and cholesterol that may escalate the patient’s health condition. Similarly, Kohn (2016) points out that the care plan should facilitate an on-going process of care delivery and consider any possible changes that may occur in the patient’s health condition.
Dementia management is widely scoped and entails managing the patient’s health conditions as a well as their behavioural changes (Goodwin et al, 2010). Existing evidence reveals that apart from pharmacological interventions, nurses have employed environmental and behavioural approaches in managing dementia symptoms (especially for the reason that no cure has been derived for dementia). According to Pulsford & Thompson (2012), behavioural interventions incorporate a sense of control the patient’s behavioural change in a manner that reduces the practitioners’ expectation for immediate change. Often, nurses who use these interventions have used a documentation process (i.e. behavioural mapping) called Antecedents-Behaviour-Consequence that gives hint to what could have been the trigger of disturbed behaviour and the ideas for managing these behaviours. Proponents of behavioural mapping also claim that it indicates the frequency of the behaviour, its severity, and possible ways of managing it (Goodwin et al, 2010).
On the other hand, environmental interventions such as behaviour therapy, music, environmental changes, activity programs, and caregiver education have been proven by research to have a positive effect on the management of dementia patient conditions. For instance, according to Carbonneau et al (2010), regulating staff reactions by advising the staff to use gentle tone and speak in a low voice while addressing dementia patient, pointing or using gestures, and use of one-step instruction are effective in reducing the patient’s catastrophic reactions.
To ensure patients are orderly in an enclosed environment, Wilks et al (2011) suggest that there should be visual signs and barriers to guide patients and prevent them from inappropriately entering rooms. Similarly, Bratas et al (2010) point out that to manage repetitive questioning, nurses can use written cues while communicating with the patients.
While pharmacological approaches have widely been used to manage dementia, Carbonneau et al (2010) point out that some behavioural symptoms respond poorly to drugs and even if the behaviour may be responsive, obtaining a full effect may take some time. However, Bratas et al (2010) recommend that before using drugs to address behavioural changes, it is necessary to evaluate whether the drug is necessary, whether there are non-pharmacological alternatives, and whether the drug may have any negative side effects on older patients.
Nonetheless, antipsychotic interventions are currently emerging as effective interventions for dementia conditions especially and have been recommended by practitioners as interventions that should be considered especially as a complement to environmental interventions (Goodwin et al, 2010).
In conclusion, this paper has identified that dementia is a problematic long-term condition which affects a significant portion of the UK’s population. It has also nurses have a multiplicity of role to play in delivering a holistic care to dementia patients, besides the fact that the condition may have negative effects on the patient’s family relationship and physical health. This paper recommends behavioural interventions as well as environmental interventions which can be complemented with antipsychotics to manage dementia.
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