Challenges Of Nursing Care Of Advanced Dementia Research Report

1. Introduction:

Dementia is a generic concept used to define a category of neurodegenerative progressive syndromes in which cognitive decline contributes to a reduction in memory, reasoning and learning, as well as to loss in attitude and actions that impairs day-to-day living function (WHO, 2017). Dementia-related clinical symptoms can be divided into three phases: early, mid and forward-looking (Mataqi, M. et al. 2018). The research focuses on the challenges of advanced dementia care. Dementia incidence is growing steadily and now exceeds nearly 50 million people worldwide1. The dementia prevalence is estimated at around 9.9 million new cases annually worldwide and places dementia at the top of global health security (WHO, 2017, Mataqi, M., et al., 2018).

The palliative method becomes an appropriate choice for diagnosis and is a final condition of pain and suffering. Depth cognitive and physical impairment is the stage of advanced dementia (Prince M et al . 2016). Dysphagia, inability to speak and significant losses in memory are indicative of the disorder (Davies N et al . 2014). The WHO described palliative care (PC) as ‘an approach that improves the quality of life of patients and their families, through the prevention and treatment of pain and other physical, psychosocial and spiritual issues, with a life-threatening condition’ (WHO, 2018; Connor S et al., 2014).

The International Alliance for Palliative Care and the WHO both identified early dementia as a disorder for living and illness involving end-of-life palliative treatment. In the case of severe dementia, the same principle applies as defined by Europe’s Palliative Care Association. The World Palliative Care Alliance and the WHO considers severe dementia as life-limiting and end-of-life PC-intensive illness. Nevertheless, through its attempts, the WHO acknowledges the frequently unmet, undervalued and unprocessed palliative needs of individuals with dementia in certain areas (Carter, G. et al . 2017). Recent studies indicated that a strategy of PC could be useful for severe dementia patients, but the implementation process remains a unique challenge. Several studies examined the barriers to sufficient PC supply for dementia patients (Champion, E. 2017). One of the major challenges is that in some areas, it is understood as a terminal disease, despite the progressive nature of dementia. Also, even if the cognitive and physical ability has gradually decreased, it is not possible to use abrupt health changes to identify a terminal phase of dementia, unlike trajectory of cancer (Poole, M. et al . , 2018).

However, comprehension difficulties in the advanced stage of dementia render treatment complicated to obtain and pose more obstacles to the effective delivery of PCs (Hill, E., 2018). Besides, several studies have shown that the role of health care professionals in the transfer of dementia patients to PC facilities is critical. However, they are unwilling (Kupeli, N and others, 2018). Lastly, the failure to provide optimum EoLC for this population in terms of care and clinical guidelines on PCs that are specific to dementia. This paper highlights the challenges of care for advanced dementia patients.

2. Background:

Dementia is a progressive life-limiting disease of neurodegeneration. According to international research, patients with advanced dementia will benefit from palliative care (PC). However, research shows that, despite increasing recognition of their palliative needs, many currently fail to access such provision (Champion, E. 2017). Severe dementia has many symptoms and comorbidities of the somatic, cognitive, affective, and behavioural. Symptoms were similar to those in cancer development in the final months of existence at dementia at extremely elevated rates of pain. Carers must control their numerous dementia symptoms and the many factors that lead to mortality in particular. Dementia ‘end stage’ refers to pre-death time, when MMSE is too small to score and assumed to be zero. End stage dementia is distinguished although with encouragement by the loss of activities of daily living, erectile dysfunction, speech loss and nearly total dependence. Demise outcomes from co-morbidities. The advance of dementia in end-stage care imposes a need for complicated medical care such as whether to use antibiotics, a healthcare facility (home and old hospital vs) and a tube feeding facility (Kupeli, N. et al. , 2018). Because individuals with dementia can not talk or fix issues or give explicit consent to litigation, care decision-makers and family members may be active in care decisions. As in many developing nations, Australia is typically the largest source of dementia in a private elderly hospital (formerly “nursing home”). Residential care, however, does not mean palliative care by any means (Poole, M. et al . , 2018). The World Health Organization describes palliative care by identifying, assessing and treating pain and other physical, psychosocial and spiritual problems to improve the quality of living for those with a life-threatening illness and their families. Palliations can now be implemented at various stages of the disease continuum, not only at imminent deaths (WHO, 2015; Carter, G. et al . , 2017). However, palliative treatment in nursing aged facilities is not necessarily open to patients with non-malignant conditions. Besides, several studies have shown that the role of health care professionals in the transfer of dementia patients to PC facilities is critical. However, they are unwilling (Kupeli, N and others, 2018). Lastly, the failure to provide optimum EoLC for this population in terms of care and clinical guidelines on PCs that are specific to dementia. This paper highlights the challenges of care for advanced dementia patients.

3. Significance:

This research indicates the issues affecting people with progressive dementia through their health treatment. Because of its existence, this analysis is particular than before. In the past, experiments on this topic have not been explicitly identified. This study is, therefore, different than before. Dementia occurrence is increasingly growing. The research focuses on the challenges of severe dementia care: the International Palliative Care Alliance, and the WHO identifies severe dementia as life-limiting and end-of-life PC-intensive illness. The treatment of severe dementia patients faces several difficulties. Some of the critical problems continue to under-identify it as a chronic condition in specific areas given the irreversible existence of dementia. Furthermore, while cognitive and physical capacities are deteriorating slowly, sudden improvements in health should not be introduced to explicitly define a final stage of dementia, as compared to the progression of cancer. The work reflects on the complexities of caring with early dementia.

4. Aims and Objectives:

The present research was aimed at highlighting the obstacles faced by facilitating effective care providers for people with advanced dementia residing in residential aged care facilities.

5. Research Question:

1. What are challenges faced during the nursing care of advanced dementia?

6. Search Strategy:

Our systematic review has carried out along the lines of the Cochrane method. The current nature of research has not reported. The analysis document is consistent with the policy of Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA). We scanned for published RCTs, qualitative, quantitative, and mixed methods analysis studies as well as the previously conducted reviews that were recording challenges of nursing care of advanced dementia.

We scanned for electronic repositories: Cochrane Collaboration Randomized Trials Database (Primary), Cochrane Systematic Review Database, MEDLINE, PubMed, Bio Med-Central, Scopus, EMBASE, and Google Scholar. These databases have used to justify the research that already has reported in peer-review, open access publication/online publications, and grey literature such as abstracts (presented in the conference), dissertations and unpublished reports during May 28, 2015, to 28 May 2020. Three electronic databases were considered on top while searching literature. We have used keywords to search the research such as “challenges,” ” nursing care” and “advanced dementia” and these were all related to studying.

The database lists of all the studies have systematically reviewed to pursue such work—analysts on the problem identified as researchers and stakeholders. Researchers and stakeholders had provided feedback on the search and succeeded in finding substantial grey literature. Until March 2020, we limited our focus to human subject studies and also researched published in peer-reviewed journals with the English language. The last hunt for the literature took place in 2015. All considered publications (on the bases of inclusion and exclusion criteria) reference lists have reviewed to find studies that the initial search for the database may have overlooked. The search strategy define the status of included studies and demonstrate their inclusion. Search strategy of literature review is core characteristics. Overall literature review depends upon it.

7. Article Inclusion:

All the RCTs, qualitative, quantitative, and mixed methods studies as well as the previously conducted reviews that were recording challenges of nursing care of advanced dementia were included. These are originating publications in the English language peer-reviewed scientific journals. The criteria for eligibility have established and improved by the team of researchers using input from experts. Inclusion criteria were used to marginalize the relevant and non-relevant studies such as study population included challenges of nursing care of advanced dementia. Additional studies were found by reviewing the database of all included studies references and also reviews on the subject. Two independent investigators (D.L., M.N.C.) reviewed titles and abstracts to filter out studies that were insignificant. Afterwards, DL and MNC reviewed the full text of the related studies according to the criteria. Disagreements were settled by consensus with a third reviewer’s (P.P.N.) involvement agreed upon when necessary. This process was carried out with online platform Covidence. Inclusion criteria were: qualitative, quantitative, previously performed evaluations and mixed methods work was performed in all countries, regardless of the difficulty of the language of implementation; contemporary; cohort studies and clinical trials (including randomized controlled trials); evaluation of patients with advanced dementia and analysis of nursing challenges. The certain trials that were not supporting any of the preceding variables were omitted from the study such as study length, key contextual attributes description, and attributes of the research population. A qualitative review based solely on the article’s abstracts, which did not comply with any of the inclusion criteria and did not fall under the exclusion criteria. We reviewed the article entirely for the determination of eligibility metrics. The data were collected independently from researchers using the proper procedure and documentation. Interviews with the third analyst settled bickering, even after the discussion consensus was reached. The data extraction was accomplished using a structured data extraction process, gathering details of the publishing year, design of the research, number of cases, maximum sample size , type of population and information.   Studies have performed independently using the Cochrane risk assessment for the literature search, data retrieval, and bias identification. By registry searches the record recognizes were n=850. Record likewise observed from other sources was n=0. After duplicate removal records were included n= 100 and the record was then evaluated on the criteria for exclusion and inclusion. The full-text articles were assessed according to the eligibility criteria, and that was n=15. The total number of eight studies (n=5) have been considered for the meta-analysis. Our research complied with historically published qualitative, quantitative, mixed method studies, RCTs, longitudinal, retrospective and prospective studies and all statistical results were collected.  Analytical fsoftware package RevMan 5.3 (Copenhagen: Nordic Cochrane Center, The Cochrane Collaboration, 2019) have considered.

8. Article Appraisal:

JBI appraisal tools have been used for this research appraisal.

9. Results and Discussion:

• Description of included studies:

The online supplementary file contains details of the study characteristics. Researches have ranged widely from region to nation and from participant to participant. Research containing the quantitative utilized questionnaires and transversal postal surveys to assess obstacles and promote the delivery of nursing care. The qualitative study assessed the challenges and facilitators through a way of semi-structured interviews, detailed assessments, focus groups and the evaluation of the participants. Three hybrid research methodologies use in questionnaires, interviews and focus group/case notice analysis as well as financial details and the telephone / online questionnaire.

• Country settings and participants:

The study took place in several European countries such as the UK, Norway, Italy, Germany England, the USA, Ireland, Belgium, and Australia in the supplementary file online and all of which have a majority of the high-income countries, especially England in the United Kingdom. Data also come mainly from health treatment, doctor, hospice, Computer experts, general practitioner and personal care.

• Challenges of nursing care of advanced dementia:

It is tough to evaluate and provide healthcare to an individual with advanced dementia. Participants assert that it is difficult to evaluate a non-communicating person orally. Changes in the actions of the subject should be detected, and this individual should be carefully watched and long-term experience provided. The barriers to advancing care planning (ACP) were most widely identified in this field. Communication difficulties between the healthcare professionals and the caregivers, the lack of information on the condition such as its pronostics and future caregivers’ expectations. The facilitators included: ACP and Emergency Treatment Guidelines. Pain and problems in identifying and treating effects and coordination were the two frequently cited obstacles. Both researchers claimed they did not have an awareness of palliative care, aside from general practitioners and palliative care professionals. One respondent thought that palliative treatment had been widely mistaken even at the very end of life.

In all, 5 studies identified barriers related to caregivers, with the most common one being lack of skills and training opportunities specific to PC in dementia (end-of-life dementia care) ^{8, 9, 10, 11, 12}. Also, unnecessary hospitalizations, inadequate staff, lack of inter-service communication, caregivers and care centres, and poor dementia knowledge and training among healthcare providers are commonplace. The last subject discussed in 22 studies was behaviour, awareness and convictions, and it showed how lack of awareness, error and attitudes in the public / HCPs could hinder health care provision. The much more widely cited challenge was the lack of knowledge about the terminal/palliative state about dementia. Specific problems involved lack of knowledge of the provision of treatment centres to progressive dementias and lack of experience with the requirements for palliative care acceptance and lack of understanding and confidence in ACP as well as avoidance of legal repercussions and shame. Palliative awareness may improve the capacity to take care of decisions. All of the researchers concluded that the biggest challenge to treatment in this demographic was a shortage of expertise and educational resources relating to dementia nursing. Pain assessment and management were identified as a challenge by both carers and HCPs.

The findings of this study correlate to the literature that indicates substantial differences and lousy knowledge in this demographic at the end-of-life period. This study is the first comprehensive examination, to our full knowledge, to examine the viewpoints on the contributing variables that influence the delivery of advanced dementia healthcare. This study gives a valuable understanding of the journey of patients through the dementia phase, drawing on several stakeholders from different countries and ecosystems. Results demonstrate that the transition of people with severe dementia into a nursing approach is being avoided with major challenges. Such problems occur at several stages which can be related to economic, healthcare technology policies, diseases which structural dimensions.

Seven studies have shown that care was rejected in severe dementia as a management step. The inability to understand that nursing is a critical phase in the management of dementia itself is a barrier for this community to access services. Another research indicated that non-cancer patients continue to have weaker PC provider comparison levels and their end-of-life treatment experience is worse because of loss of understanding and comprehension of the terms of their conditions.¹⁰ It significantly impacted the patient and precluded this population from accessing services because all participants failed to recognize dementia as either a terminal illness or palliative condition. This emphasizes the level of understanding of the terminal disease enhance not only the quality of life but also the quality of death since it enables patients to control the future, make decisions and prepare them for death. ¹¹.

Furthermore, lack of access to PC resources has been described as a critical obstacle for delivering treatment for this demographic in line with the 2015 study of the Alzheimer Society highlighting inadequate access to PC facilities and hospice care for that community⁴. The advantages of Medicare, eligible nursing homes, availability and conditions for Medicare palliative care admission and repayment program can be related. When the human variability of dementia is not taken into consideration, just ad hoc, partially diets, the distracted, nervous, uncoordinated treatment that is all too normal will lead. The program must react to the rare combination of needs of individuals. The solution to this dilemma is to offer senior healthcare practitioners broad level awareness of dementia so that physicians can adapt their diagnosis to their patient needs.

10. Conclusion and Implications:

This paper explores difficulties in addressing the concerns of people with advanced dementia in long term care. Growing awareness and strategies, and a preservation of that advocates for the different neurodegenerative diseases and manifestations are needed. Therefore, whereas problems will indeed persist, vendors of treatment for elderly people living with dementia would be better positioned to cater the needs of the residents.

Repercussions of nursing care issues for social care officials, policy experts and commissioners and also some senior executives / board members of treatment centers:

• Outstanding tools are needed for evaluation, treatment of pain and other symptoms, and family care communication.
• Detailed information is required on particular dementia symptoms, a palliative alternative to treatment, and medico-legal issues.
• Terms of planning healthcare professionals and guidelines can help make health decisions when an patient is no longer able to interact. The recipients of knowledge and skill enhancement programme should include nurses and other professionals engaged in aged care, including medical practitioners.
• It is easier to identify the clinical development of the dementia. Research into this issue is already underway, a conspicuous example.
• Better descriptions will enable more accurate prognoses and more informed care plans. Involving frontline staff in the development and implementation of training programme.
• Implementation of evidence-based recommendations and guidance for end-of – life dementia care in clinical settings.
• Policies should be implemented which are considered for improving and removing the hurdles in better performance of nursing care with advanced dementia. So that, the challenges can be better handle.

References:

1. World Health Organisation. Dementia. World Health Organization, 2017.
2. Mataqi, M., & Aslanpour, Z. (2019). Factors influencing palliative care in advanced dementia: a systematic review. BMJ supportive & palliative care, bmjspcare-2018.
3. Prince, M., Comas-Herrera, A., Knapp, M., Guerchet, M., & Karagiannidou, M. (2016). World Alzheimer report 2016: improving healthcare for people living with dementia: coverage, quality and costs now and in the future.
4. Davies, N., Maio, L., Paap, J. V. R., Mariani, E., Jaspers, B., Sommerbakk, R., … & Iliffe, S. (2014). Quality palliative care for cancer and dementia in five European countries: some common challenges. Aging & mental health, 18(4), 400-410.
5. World Health Organization (WHO). World Health Organization (WHO) definition of palliative care, 2014.
6. Connor, S. R., & Bermedo, M. C. S. (Eds.). (2014). Global atlas of palliative care at the end of life. Worldwide Palliative Care Alliance.
7. Alliance, W. H. P. C. (2015). Palliative care and dementia statement. Geneva, Switzerland: World Health Organization: www. who. int/mental_health/neurology/dementia/NSA_WHPCA. pdf.
8. Carter, G., van der Steen, J. T., Galway, K., & Brazil, K. (2017). General practitioners’ perceptions of the barriers and solutions to good-quality palliative care in dementia. Dementia, 16(1), 79-95.
9. Champion, E. (2017). What support do nurses need to provide palliative care for people with dementia?. Nursing older people, 29(7)
10. Poole, M., Bamford, C., McLellan, E., Lee, R. P., Exley, C., Hughes, J. C., … & Robinson, L. (2018). End-of-life care: a qualitative study comparing the views of people with dementia and family carers. Palliative medicine, 32(3), 631-642.
11. Hill, E., Savundranayagam, M. Y., Zecevic, A., & Kloseck, M. (2018). Staff perspectives of barriers to access and delivery of palliative care for persons with dementia in long-term care. American Journal of Alzheimer’s Disease & Other Dementias®, 33(5), 284-291.
12. Kupeli, N., Leavey, G., Harrington, J., Lord, K., King, M., Nazareth, I., … & Jones, L. (2018). What are the barriers to care integration for those at the advanced stages of dementia living in care homes in the UK? Health care professional perspective. Dementia, 17(2), 164-179.

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