Key Issues in Dementia and Well-being

The purpose of this essay is to identify a long-term condition (dementia), and discuss how it affects individuals and their experiences, in order to develop an understanding. This essay will cover the key issues of a long term condition (dementia) and how it influence the well-being of individual using the dementia alliance international, NICE guidelines and books that will be mention in the essay along the line. Also, I will be discussing about implication for practice and the role of healthcare professionals working in partnership with patients, carers and their families. I will then talk about what I have learnt and how this essay will influence my future practice.

The reason for selecting this topic is based upon statistics from United Kingdom, which shows that there are currently, 850,000 people who have dementia and these numbers are likely to rise over one million by the year 2025 (Alzheimer’s Society 2018). One in six people over the age of 80 years develop dementia. The Fifth edition of Diagnostic and Statistical Manual of Mental Disorders (DSM-V) has reclassified dementia as a neurocognitive disorder, which has a varying degree of severity (Brooker et al. 2014). Chertkow et al. (2013) defined dementia as a clinical syndrome where the decline in cognition occurs, sufficiently severe to interfere with occupational or social functioning. Therefore, to improve their living conditions and provide better care as a Nursing Assistant (NA), it is important to study the experiences of individuals living with the condition. The following essay focuses on dementia patients and their daily life experiences. First we will discuss the onset of dementia. Also, knowledge of this condition and associated experience will allow better diagnosis and assistance for dementia patients. Additionally, knowledge provided to patients can allow them to be better equipped to understand their condition better and manage them more efficiently. Both of which can improve outcomes of the care and treatment, and hence emphasizes the necessity for developing knowledge about this disease as well as long term conditions by both the nurse and patient.

The onset of dementia involves the damage of the nerve cells within the brain, which can happen in different areas. Dementia affects the cognitive ability of every other person differently as it depends on the area of affecting the brain (Laforce 2013). Dementia also can be grouped by its cause as there are some dementias, which are caused by the reaction of vitamin deficiencies, and this can be improved if treated. In addition, there are progressive dementias as Alzheimer’s, vascular dementia, Frontotemporal dementia, Lewy Body dementia and mixed dementia (Sadowsky and Galvin 2012). The experiences of dementia patients and their challenges are discussed in the subsequent section. 

Challenges Faced by Dementia Patients

Dementia patients experience a number of key challenges while receiving care from healthcare professionals. The personal details in the story will be rephrased for maintaining the confidentiality of patients. Considering the issues experienced by Maggie, a 72-year-old dementia patient, the major concern had been the ability to retain any memory of her previous life or existence (dementiaallianceinternational.org 2018). The incapability of retaining any memory often incorporates agitations and helplessness in the patients and Maggie had been a victim of all these challenges. Patients with dementia experience mood swings, delusion, aggressiveness, guilt and low self-esteem (Rohrer, Rossor and Warren 2012). Dementia patients with depression experience trouble with decisions or memory, preoccupation with death and feeling of clinginess. This interferes with their ADLs and worsens their mental wellbeing. Physical wellbeing is also affected as depression is risk factors for heart attack, weight fluctuations and weakened immune system. Such long term condition can also become a financial burden due to cost of care as well as the effect on employability or sustenance of employment (Alzheimer-europe.org 2018; Sakata and Okumura 2017). This brings us to reflect upon our understanding of the implication of such experiences.

Reflecting on the experience of another patient, Mr. Schmidt, an 82-year-old dementia patient was completely dependent on the healthcare provider. He suffered from extreme speech difficulty, which restricted him from being able to express his particular needs and preferences. The inability to express his preferences and grievances led to extreme frustration in the patient, which eventually led to depression, helplessness and non-cooperation with the healthcare professionals. Along with agitation, depression, speech difficulty and memory loss, patients with dementia experience paranoia and aggression. Madison, a 70-year-old woman had been living with vascular dementia for last five years; and along the course, she had developed a fatal inclination towards dependability and temperament. The extreme dependability of the patient on the care provider indicates the absolute lack of independence and empowerment that eventually led to paranoia and extreme aggression in the patient. It has to be understood that dependability and helplessness affects the mental health of a patient profoundly and hence the onset of paranoia and aggression is inevitable (dementiaallianceinternational.org 2018). Although there is a need for care, critical requirements of the dementia patients should also be taken into consideration so that these challenges can be avoided or managed accordingly. Speech difficulty is one of the earliest issues, which can be seen in the dementia patients. They can often forget a word or an entire conversation. As dementia progress, the patients can forget the common phrases and words frequently and it is possible that the small set of language which they could remember at one time, can be lost to them, as they no longer could remember them. In later stages of dementia, the patients communication level is impaired and at one point of time, the patient might lose his or her speech completely (Warren, Rohrer and Rossor 2013). Due to speech difficulty, dementia patients fail to express their thoughts and emotions with loved ones and family members. As a result, it affects their social wellbeing as their family members fail to address their care needs. The caregivers should be present with the dementia patients at the point of time as one might not recognize the people around him, or her but can recognize the tone of the voice of the caregiver. These aspects highlights the key issues that a dementia patient psychologically and physically faces, and their inter relation. With the understanding, we can next discuss how to improve care.

Improving Care for Dementia Patients

Listening to the experiences of dementia patients greatly help to improve the care giving process (Prorok, Horgan and Seitz 2013). Living with dementia can have a psychological, social, emotional and practical impact on the individual (Johannessen and Möller 2013). Individuals with dementia experience these impacts as severe losses and they find it challenging to adjust with the condition. Dementia patients experience problems with thinking and memory difficulties that in term affect their confidence, self-esteem, autonomy, independence, social relationships and most importantly, their ability to perform ADLs. Therefore, it can be deduced that this condition greatly affects their overall health influencing their psychological, social and physical wellbeing. In such cases, NAs should understand the feeling of the patients and try to see things from their perspectives as far as possible. This helps to offer support and make them feel valued and included. Next we shall discuss the care strategies for dementia.

 The UK government has established a new strategy named National Dementia strategy, published in 2009, set new standards for the dementia care. The dementia challenge groups are working with many organizations such as NHS England, Health Education England and the Royal Medical College (Brooker and Latham 2015). The goal of the strategy is to get 20 cities, towns and villages in England are to create awareness about dementia. Another goal is to create at least 1 million Dementia friendly people. As of 2013, as many as 35.6 million families have a patient suffering from dementia (nice.org.uk 2018). Involvement of these families in decision-making is necessary for the everyday care, medical treatment of the patient. The decision making process most of the time is involved with complex ethical and legal dilemmas. Mostly, these dilemmas arise due to the lack of the involvement of the patient about their care. Therefore, person-centered care is important as per NICE guidelines. 

From the case study, it was found that the patient is suffering from memory loss. As the patients with dementia find trouble in remembering things, they cannot remember the recent events around them. They cannot remember the name of the people and even forgets them. They can remember some events of the past and often are caught up on these events. During the last stage of dementia, there is loss in memory (Khan et al. 2015). The caregiver has to remember that they have to keep every spare copy of information of the important items. The NA should implement patient-centered care model as a part of (National Institute for Clinical Excellence) NICE guidelines, UK. The caregivers should respect the dignity of the patient regardless of cognitive impairment and respect their life experiences and unique personality. Moreover, the caregiver should be close enough to the patient to understand their life experiences. The NHS guidelines help health and social care workers to support people in mild-life approaches to prevent or delay the onset of dementia (nice.org.uk 2018). The reason the above mentioned strategies are selected is based on the recommendation of the NICE guidelines. Moreover, such strategies can also improve the sociological well being of the patient, furthering the positive effects on their mental well being.

Discussion of Strategies

According to NHS, the patients with an early and middle stage of dementia can be involved in their care, as they can think and communicate. The medical practitioners such as doctors and the nurses can care for them by involving their families and primary caregivers to form a partnership. The health promotion strategies for the dementia patients help the caregivers to know more about the condition. It helps them to know the strategies and interventions, which helps the patients to lead a normal life like others (Eggenberger, Heimerl and Bennett 2013). Empowering dementia patients can help to involve them in the provision of care making them feel valued and socially included. There should be development of purposeful activities to avoid negative situations and gain their attention through empathetic communication. There should also be validation of the heard emotions and simplify every instruction as confusion can trigger negative behaviors.

Nurses also should be capable of working across the boundary of their responsibilities, and helping the other caregivers in partnership to elicit better care for the patients. This also allows integration of services. This involves workforce boundary spanning to create workforce that can exist within and across health and social care requirements. Such principles can be the foundation of integrated care pathways. Such partnership can exist within primary care setup between the healthcare staff and care homes through in-reach and outreach services; first contact care and management by nurses, pharmacists supporting general physicians. Nurse care coordinators can be specifically assigned to monitor effective coordination (Gilburt 2016)

Working in partnership essentially means the delegation of care responsibilities through various job roles and responsibilities, based on specific expertise. It also involves efficient coordination (sharing of information or research data) and ensuring uninterrupted and continued care for the patient. This is especially important for lifelong conditions, which necessitate long term care. For dementia care, partnership with social care worker, pharmacist, general physician, mental health practitioners, care support workers and family is required. This can allow providence of a holistic, patient centric care, and also reduce fragmentation of local service delivery (Tait and Shah 2018). Working with different professionals like social care personnel (sharing care information, care needs, health status to enable continuation of support beyond healthcare setup), physiotherapist (with health reports and clinical findings and assist the patient to maintain, increase and improve mobility), psychologist (sharing health reports and analysig the mental health condition and requirements of the patient, to ensure patient experience is maintained positive) helped be understand better about effective coordination and communication. A significant challenge to this process however is to comprehend all the information shared across these professions. Advancing knowledge to these domains therefore is important for nurses to be able to understand the data and share them systematically and efficiently, without jeopardizing confidentiality of the information. Providence of infrastructure to communicate with the diverse professionals greatly helped me in this process, for which I am thankful to my organization.

Implications for Practice

This learning from the case studies and the key issues are important as it helped me to learn about the experiences, which arises while caring for the dementia patients. It is important to know about the interventions and the importance of involving the families of the patients into care. It also helped me to create awareness about dementia that can make the caregivers understand the needs of the dementia patients. As an NA, to study the experiences of individuals with dementia can be a potential way to change their ways of living in the future. While caring for a patient with dementia I was able to coordinate care across various professionals, and was effectively managing the coordination of the care to ensure continued and unfragmented service. I was also monitoring the experiences of the patients. The principal benefit is to understand their feelings and signpost subsequent care pathways for the dementia patients so that they are able to live to their full potential like others and also to share key findings with the healthcare team. I was also involved in educating the patient about their conditions that helped them understand their conditions better. Additionally, I was motivating, empowering and helping the patients live an independent life.  For the long-term care, this learning can be helpful as NAs can provide direct care to patients with advanced dementia. Additionally, I was able to understand how long term condition can affect the mental health of patients, and their experiences, and how through long term care and involvement of healthcare partnership (involving care professionals from different fields), working across boundary can help the patient. I understood how caring for dementia involved social care workers and other healthcare personnel with whom I had to share progress reports and clinical finings. Such experiences have better equipped me to provide a more efficient care and coordination of services. Additionally, I have learnt the necessity to educate the patients about their own conditions that can later help to manage their conditions better.

References:

Alzheimer’s Society. 2018. Facts for the media – Alzheimer’s Society. [online]. Available at: https://www.alzheimers.org.uk/info/20027/news_and_media/541/facts_for_the_media [Accessed 10 Feb. 2018].

Alzheimer-europe.org., 2018. Alzheimer Europe – Living with dementia – After diagnosis – What next? – Dealing with practical issues – Employment issues. [online] Alzheimer-europe.org. Available at: https://www.alzheimer-europe.org/Living-with-dementia/After-diagnosis-What-next/Dealing-with-practical-issues/Employment-issues [Accessed 20 Feb. 2018].

Brooker, D. and Latham, I., 2015. Person-centred dementia care: Making services better with the VIPS framework. Jessica Kingsley Publishers.

Conclusion

Brooker, D., Fontaine, J.L., Evans, S., Bray, J. and Saad, K., 2014. Public health guidance to facilitate timely diagnosis of dementia: ALzheimer’s COoperative Valuation in Europe recommendations. International journal of geriatric psychiatry, 29(7), pp.682-693.

Chertkow, H., Feldman, H.H., Jacova, C. and Massoud, F., 2013. Definitions of dementia and predementia states in Alzheimer’s disease and vascular cognitive impairment: consensus from the Canadian conference on diagnosis of dementia. Alzheimer’s research & therapy, 5(1), p.S2.

dementiaallianceinternational.org 2018. Sharing my experience with dementia, by Maggie Weidmark – Dementia Alliance International. [online] Dementia Alliance International. Available at: https://www.dementiaallianceinternational.org/sharing-experience-dementia-maggie-weidmark/ [Accessed 10 Feb. 2018].

Eggenberger, E., Heimerl, K. and Bennett, M.I., 2013. Communication skills training in dementia care: a systematic review of effectiveness, training content, and didactic methods in different care settings. International Psychogeriatrics, 25(3), pp.345-358.

Gilburt, H., 2016. Supporting integration through new roles and working across boundaries. [online] Kingsfund.org.uk. Available at: https://www.kingsfund.org.uk/sites/default/files/field/field_publication_file/Supporting_integration_web.pdf [Accessed 20 Feb. 2018].

Johannessen, A. and Möller, A., 2013. Experiences of persons with early-onset dementia in everyday life: a qualitative study. Dementia, 12(4), pp.410-424.

Khan, O., Shah, A., Escudero, S.L.Z., Moriarty, J., Jutlla, K., Goodorally, V., Milne, A., Smith, J., Watkins, J., Wahab, S. and Manthorpe, J., 2015. Dementia, Culture and Ethnicity: Issues for All. Jessica Kingsley Publishers.

Laforce, R., 2013. Behavioral and language variants of frontotemporal dementia: a review of key symptoms. Clinical neurology and neurosurgery, 115(12), pp.2405-2410.

nice.org.uk 2018. Dementia: supporting people with dementia and their carers in health and social care | Guidance and guidelines | NICE. [online] Nice.org.uk. Available at: https://www.nice.org.uk/guidance/cg42 [Accessed 10 Feb. 2018].

Prorok, J.C., Horgan, S. and Seitz, D.P., 2013. Health care experiences of people with dementia and their caregivers: a meta-ethnographic analysis of qualitative studies. Canadian Medical Association Journal, pp.cmaj-121795.

Raymond, M., Warner, A., Davies, N., Nicholas, N., Manthorpe, J. and Iliffe, S., 2014. Palliative and end of life care for people with dementia: lessons for clinical commissioners. Primary health care research & development, 15(4), pp.406-417.

Sadowsky, C.H. and Galvin, J.E., 2012. Guidelines for the management of cognitive and behavioral problems in dementia. The Journal of the American Board of Family Medicine, 25(3), pp.350-366.

Sakata, N. and Okumura, Y., 2017. Job Loss After Diagnosis of Early-Onset Dementia: A Matched Cohort Study. Journal of Alzheimer’s Disease, 60(4), pp.1231-1235.

Sutcliffe, C.L., Roe, B., Jasper, R., Jolley, D. and Challis, D.J., 2015. People with dementia and carers’ experiences of dementia care and services: Outcomes of a focus group study. Dementia, 14(6), pp.769-787.

 Tait, L. and Shah, S., 2018. Partnership working: a policy with promise for mental healthcare. pt.rcpsych.org.

Warren, J.D., Rohrer, J.D. and Rossor, M.N., 2013. Frontotemporal dementia. Bmj, 347, p.f4827.