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Challenges Faced by Dementia Patients

Evidence based practice is considered to the integration of best clinical practice and incorporation of the expert opinion. The EBP is considered to the knowledge, critical reasoning and judgment which is required for implementing best practice and improving the professional experience. It is stated that a proper implementation of the dementia practice for improving the quality of life of the patient is essential as it helps in providing training to the healthcare staffs and it also helps in considering the patient’s wish and the programs can be implemented (Li et al., 2019). The programs which can be implemented for improving the practice are- involving the multisensory stimulation, social activities, use of external memory aids. It is reported that the dementia patient faces challenges due to loss of ability to speak, or conducting proper conversation, difficulty in walking and difficulty in swallowing. The patient also faces challenges due to inability to recognise the people in relation to time and place. The nurse’s places challenges in managing work due to excessive workload which impacts the patient’s condition (Gitlin et al., 2020). The challenges also include physical discomfort caused by the illness, inability to cause overactive environment and lack of proper patient involvement. The practice is Dementia is a phenomenon that may be caused by a variety of factors and results in a gradual decrease in several areas of function. Maintaining dignity and improving quality of life are essential components of care (Galvin et al., 2021). The following paper will highlight about the importance of evidence-based care in providing proper care to the dementia patient.

Rationale of the chosen topic

The advancement of dementia it is highly difficult to have a proper meaningful conversation with persons with dementia. Individualized techniques are reinforced by the use of current tactics including memory/life narrative techniques, which may have a good influence on the person 's standard of existence. Hence, in this case, a proper care plan needed to be included for caring dementia patient and improving the quality of life. It is reported that the prevalence of dementia is high among the individual and the rate is almost 7.1% above the age of 65 which indicates that every 1 in 14 individual is suffering from dementia in United Kingdom which requires and effective intervention. Lack of proper early intervention increases the risk of developing the condition which will result in over 1 million of dementia patient by 2025. One of the main risks which increases the symptom and advancement of dementia include rapid aging process which affects the quality of life of the older adult by lowering independence and increasing the risk of developing immobility, pneumonia, lack of proper nutrition, increasing the risk of fall and even it increases the risk of death. The dementia patient often faces difficulty to cope up with the long-term challenges which deteriorates the quality of life.  Hence, it is the responsibility of the healthcare professionals to treat the patient with dignity and consider the patient’s wish while implementing care plan (Livingston et al., 2020). Dignity Therapy is a brief psychotherapy intervention in which a qualified therapist guides a person through a documented, directed application process in order to generate a preconventional record that leaves a written legacy. Individuals may benefit from Dignity Therapy because it allows them to begin clinical decision - making while they are still able to speak effectively, giving them a feeling of meaning and purpose. The aim of the research is to determine the acceptance of dignity therapy in providing care to the older adult suffering from dementia and also reducing the challenges which is faced by the caregiver while motivating and providing care to the dementia patient (Jenewein et al., 2021).

Prevalence and Risks Associated with Dementia

The search strategy which can be used for collecting the papers includes- “well-being OR dementia OR general happiness OR living standards OR quality of life among dementia patient) AND (dementia OR Alzheimer* OR Lewy OR Fronto). The second search string which can be included: (well-being OR wellbeing OR life satisfaction OR quality of life OR *QoL* OR health status) AND (well-being OR wellbeing OR life satisfaction OR quality of life OR *QoL* OR health status) AND (well-being OR wellbeing OR life satisfaction OR quality of life OR *QoL* OR health status) AND (well-being OR wellbeing OR life satisfaction OR quality of life OR *QoL* OR health status) AND (well-being OR wellbeing OR (nursing home OR long term care OR assisted living OR residential living OR care home OR respite OR day care). The other keywords which can be used for collecting the articles includes- “Dignity Therapy AND Dementia patient”, “Alzheimer’s patient AND dignity therapy”, “Dignity therapy AND Patient safety”, “Dignity Therapy AND role of caregivers”, “Dignity therapy AND Dementia Quality”, “Psychological therapy AND Nurse issue”, “Nurses issue AND Dementia” (Ho et al., 2016).  

We looked through the reference lists of review papers found via our searches and looked for further publications by the primary authors of the research that were included. The study focused on patients who had been diagnosed with dementia, regardless of the kind, severity, age, or living environment along with the application of dignity therapy. We looked for observational studies that reported cross-sectional and/or longitudinal relationships between particular factors and scores on standardized questionnaires or rating scales that measured QoL, life satisfaction, or well-being. Intervention studies that did not offer baseline data and trials with less than 75 percent of patients with dementia were removed. The papers which were published between the year 2015 to 2022 was included in the study. The papers which were not accessible were excluded from the study (Grewal et al., 2016).

The search database which was used for collecting the relevant articles includes- “NCBI”, “Google Scholar”, “PubMed” and “CINHL”. Various filters such as peer-review, evidence-based practice, year and language is provided as a filter. The papers published in English between the year 2015 to 2022 is included in the study.

Article Titled:  “How individuals with dementia in nursing homes maintain their dignity through life storytelling - a case study” (Heggestad & Slettebø, 2015).

            Evidence- based practice is considered one of the most important aspects in healthcare and nursing (Ellis, 2019). In order to adhere to this approach, it is highly essential for the nursing professionals to choose their evidences very carefully. During clinical practice, professionals are relied to implement evidence- based interventions so that optimum health and safety of the patient can be ensured from their end (Camargo et all., 2018). Critical appraisal is basically a systematic approach to carefully verify and judge the trustworthiness of a research article on a particular topic (LoBiondo-Wood & Haber, 2021).

Dementia being one of the commonest mental health issues among the older adult population requires adequate attention and implementation of effective interventions by the healthcare providers (Jørgensen et al., 2018). As discussed earlier, that dignity therapy has been suggested by several researchers to be effective in management of dementia among the adult population (D’Iapico, 2022). However, the evidences should be verified so that this intervention can be safely implemented on the patients.

Implementation of Dignity Therapy in Providing Care for Dementia Patients

In this section, the relevance and value of the research article titled “How individuals with dementia in nursing homes maintain their dignity through life storytelling - a case study” will be discussed in the context of dignity therapy implementation for dementia patients with the help of Critical Appraisal Skills Programme (CASP) tool (Casp-uk.net., 2018).

CASP checklist for qualitative research is basically developed on ten questions keeping the focus on the main aspects of a research article including its findings results, methodology and ethical issues. The abovementioned research article by Heggestad and Slettebø (2015) emphasized on exploring the response from individuals who were diagnosed with dementia. The aim of this research was to delve deep into the perceptions or self- management strategies used by dementia sufferers in maintaining their dignity in life while residing in a nursing home. According to several credible evidences it has been extensively indicated that the quality of dementia suffers is greatly affected. As a result, it often leads to loss of dignity as well (Steinbock & Menzel, 2018). This might become a potential challenge and might require self- management skills of the patients to retain their dignity. Hence the context underlying the research problem is accurate and of greater significance as well. In Norwegian nursing homes, dementia affects the majority of the inhabitants. Dementia patients are especially susceptible, and their sense of self-worth is jeopardized. As a result, it is critical to figure out how to keep their sense of self-worth intact. The authors have highlighted this context since the beginning of the research and adhered to exploration of the same aspects throughout the research. Hence, in response to the CASP checklist, it can be mentioned that the results of the study were valid since the aims or objectives of the research were clearly explained by the researchers and the results indicated information relevant to the aims.

Qualitative methodologies are generally used in order to understand a particular concept or experience of individuals through research (Aspers & Corte, 2019). The abovementioned study is set up based on a phenomenological and hermeneutic design which are well- known qualitative research methods. It has been generally observed that hermeneutic phenomenology is a qualitative research approach which is extensively utilized in particular domains such as education and other human sciences, such as nursing. Hermeneutics seeks to express the reflecting quality of human experience as it appears in language and other kinds of creative signals, whereas phenomenology seeks to clarify, characterise, and make logical sense of the structural and patterns of pre-reflective human experience (Neubauer, Witkop & Varpio, 2019). Both of these methods are useful in finding out qualitative information. Thus, qualitative approach implicated in this research is certainly accurate and has been appropriately maintained while conducting the research.

The researchers wanted to explore the strategies that are used by dementia patients to promote a dignified lifestyle while they are in the nursing home and based on the perceptions the authors were to verify the significance or effectiveness of dignity therapy on dementia management. Hence to collect information directly from the experiencer combined application of hermeneutics and phenomenology as methods can be looked upon as the most appropriate approach like in this case. The hermeneutic method put emphasis on the significance of having ideas, which are based on prior experiences, knowledge, and the study. Without preconceptions, it is impossible for the researchers to comprehend another's experiences. In this research, the researchers have incorporated a case study approach with narrative analysis in this work. The goal of phenomenology is to take seriously the participants' subjective first-hand lived experiences. These subjectively lived events are reflected in the stories. The purpose of opening with an open question was to prevent directing the replies with predetermined topics. This is in line with the findings of dialogical studies. This consistent method. Considering this systematic arrangement for the research, it can be assumed that the implementation of undertaken qualitative method is justified. 

Search Strategy for Collecting Relevant Papers

Another major aspect which is often considered important for critical appraisal of an article is participant recruitment strategy of the research. The article has presented a total of three case studies or life- based stories from a qualitative research on dementia care decency. The examples are based on participant observation and qualitative interviews with five residents from two separate nursing homes, one from a special care unit and one from a general unit. The study comprised fifteen dementia patients from these nursing home units. In this article, the researchers have clearly explained how they have recruited the participants in this study and based on this it can be considered as a credible piece of evidence.

Data collection is a significant part of research (Williams, Boylan & Nunan, 2020). Next coming to the data collection part of the research, the researchers have presented it in step-by-step format. The first part included participant observation which was conducted in two phases such as between March–May 2010 and October–December 2010. The researchers have invested almost 185 hours in observing the participants and this approach indicates collection of significant information regarding the research topic particularly in this article. The authenticity of the data can also be judged based on this specific criterion. Next, the interviews were conducted for each of the selected informants. Interviews are one of the most cost- effective methods to obtain subjective data in a primary qualitative research (Barrett & Twycross, 2018). Hence selection of this particular data collection method can be considered as appropriate for understanding the strategies used by dementia patients in maintaining dignity in life.

Considering the ethical aspects underlying this research it can be stated that the researchers have first obtained informed consent from all the participants and only after that they were interviewed. The interviews with the participants were conducted in the first author's private room in order to ensure that the environment surrounding the interview was as pleasant and safe as feasible. This also indicates a partnership or conformable bonding between the researchers and the participants. They were also told that if they withdrew, they would be unaffected. From this it can be said that the researchers had taken the ethical issues under consideration and handled them very carefully.

When the first author interacted with residents in the living room, visited them in their private spaces as a passive observer in nursing home wards, and conducted interviews with them, she saw that they felt compelled to recount their life narrative. These tales might be about how they met their partner or other events that stood out to them. Their identity was shaped by the stories. The result indicated that individuals with dementia who live in nursing homes may utilise life stories or tales to cope with the turmoil and find safety. Storytelling may also be used to portray and sustain a sense of self. This might be viewed as a means of preserving society or personal dignity. Based on the CASP checklist it can be said that the result which has been deduced by the authors in this research addresses the objective of the research.

The authors have concluded the research findings with a clear statement which included that individuals who are suffering from dementia can benefit from life storytelling as a means of preserving their dignity. It is critical that health care workers are receptive to and attentive to the life stories told by patients with dementia. Considering the relevance and value of this particular article it can be said that the responsibility of the nursing professionals is to ensure that patients with dementia are treated with dignity. Health care personnel in nursing homes should thereby be aware of how persons with dementia utilise life narrative to retain their dignity.

Overall, the research conducted by Heggestad and Slettebø (2015) is certainly a valuable source of evidence in the field of dementia management. In order to implement evidence- based dignity therapy as an effective intervention against dementia, this credible source can be utilized by the healthcare professionals as well. 

The appraised evidence suggested that life storytelling might be an effective strategy to maintain dignity for the dementia patients.  Dementia is considered as a significant burden around the globe that has direct impact on healthy eating economy and quality of life. Approximately 80% of residents living in Norwegian nursing homes encountered dementia and maintaining dignity in such nursing homes are unexplored area in research (Evans et al., 2016).   Huang et al. (2020), suggested that Dignity as fundamental part of the clinical care is modelled in a UK program in 2004. However, in majority of the cases, patients encounter ongoing loss of personal dignity, value and security and cognitive decline often reduce sense of dignity.  The underlying reason is that cognitive decline reduces their ability to recall past and hence, they loss their personal identity with ongoing progress of dementia.  The lack of autonomy while involving in the clinical care and poor therapeutic rapport to narrate the journey also play fundamental role in improving dignity (Fetherstonhaugh et al., 2017). In this case, the research evidence suggested that story telling is a way of improving dignity because   telling stories from the past   provide a sense of belonging and safety. The   stories of Eli and Dagny presented in the findings of the research reflected the sense of belonging and safety such as stories of childhood, family members and other significant members provide them with a connection with the past. These research findings are highly relevant to improve dementia care   in Norwegian nursing homes and other research field.  For example, as the result suggested story telling is a way of managing chaos and finding safety in their lives, it will enable other researchers to focus on conducting future research on   knowledge and skills to ensure dementia patients require adequate opportunity for storytelling (Røen et al., 2016). As nurses have an obligation for maintaining dignity  of the patients, this research will support researchers to conduct qualitative studies  on the dementia patients and their family members by considering  their lived experience of storytelling. It will also provide future researchers with an insight into conducting research regarding suitable training and skills nursing professionals require to   promote storytelling and dignity.   Such result is also supported by other literature as well as. Karlsson et al. (2014), suggested that story telling ensured overall contentment with life and social and personal connectedness. Hence, patients receiving opportunity for dementia exhibited self-reliance and self-reliance was expressed as a strong confidence in their ability to live a purposeful life. In this case, such research motivates future researchers to focus on mixed method study for considering human experience of storytelling (qualitative data) and improving memory and cognitive using statistical data (quantitative data).   However, similar to this research findings, Novy (2018), suggested that   story telling may require significant support from the nursing professionals and nonverbal interactive story telling methods enable patients to ensure a culture of reciprocity and therapeutic rapport. Therefore, it will provide road map to the future research for focusing on other forms of storytelling that can ensure dignity and delay of progression of disease.   Such research findings also relevant to other research and professionals of multidisciplinary team and governing bodies (Midtbust et al., 2018).  It is common instances where nursing professionals and other members of multidisciplinary team (neurologists and psychologist and occupational therapists) have limited knowledge regarding maintenance of dignity which reflected in poor therapeutic relationship, taking informed consent from family members and involve in effective services.  In this case, this research findings will enable professionals to gather knowledge, concept of the story telling and eliminate ineffective services and maintaining the patient's optimum health. While discussing the relevance, it is crucial to discuss policy and procedure in place  to implement storytelling.

Norwegian government has acknowledged the importance of dignity and suggested that focusing on dignity in care is fundamental part of improving dementia care. Hence, they considered focusing on ‘guarantee of dignity’ and suggested to place it on ‘Care Plan 2015’ where they aim to improve political initiatives for ensuring quality of care (Heggestad & Slettebø, 2015). The plan also places importance on perception of residence as whole to ensure fulfilling life.  Currently, Dementia Plan 2020 up to date policy for the older adults in order to improve the dignity waste care in dementia. However, very limited care approach has been implemented in   setting ensure dignity and low support for dementia. Maintaining the residents’ dignity is about respecting the lives they have lived which is least acknowledged by the professionals and it reduce clinical adherence and satisfaction (Rokstad et al., 2016). Therefore, research data will support professionals to develop appropriate organizational policy for the dementia patients in order to improve dignity.  For instances, it will enable governing bodies to collaborate with policy makers and other agencies to incorporate and mandate story telling as fundamental part of Dementia Plan 2020 and develop regulations to improve quality of care (Clissett et al.,2013).   The nursing professionals and other professionals involving in the process of recording and performing a life story with and in front of people having range of cognitive and communication difficulties will increase sense of empowerment and self-efficacy. Therefore, developing and implementing the policy and regulations regarding life stories as a part of   dignity therapy might be effective in improving quality of care and maintaining dignity.  

Professionals sitting down and listening to the residents’ life stories are able to engage in the resident’s world, and let the resident be an active participant in his or her own life. Hence, by active engaging with the residence’s world, the nursing professionals able to eliminate negative biases, personal prejudices while respecting autonomy of the patients (Rokstad et al., 2016).  The study result is also relevant in improving training and resources for the professionals to improve story telling as active practice. The study is relevant for providing foundation of storytelling-based training and workshop where nursing professionals, neurologists, informal care givers and psychologists can gather story telling support skills such as non-judgemental regards, active listening, therapeutic touch and involvement of family members to support and respect dignity (Park et al., 2017). The nursing professionals may able to receive support from family members to improve quality of storytelling opportunities such as incorporation of story telling drama and narrative approach. Hence, over all this research result is highly relevant in improving quality of care.  In this case, various recommendation can be given for future research and professional practice.

The first recommendation can be conducting mixed methods for considering human experience of storytelling and improving memory and cognitive impairment. As the research suggested that   study research is useful for studying any in its natural context, it is recommended for the nursing professionals to involve in research to focus on  skills require to improve dignity, especially story telling experience. The second recommendation can be developing organisation policy by collaborating with local leaders, governing bodies, policy makers and other agencies to improve quality of care and storytelling opportunities (Rokstad et al., 2016). The third recommendation is to develop training and workshop for the nursing professionals and other professionals to improve story telling process.  In order to ensure culturally competent care for racially minor professionals, training and guideline can be developed for the professional to ensure inclusion. Similar training can be provided to the occupational therapists and social workers to ensure collaborative approach (Czapka  & Sagbakken, 2020). Development of guideline must be mandatory for the hospitals and wards to implement approach as guideline will provide professionals.  Apart from guideline development, other non-pharmacological interventions must be considered in order to improve quality of care. 

It is stated that non pharmacological intervention is effective for dementia patients as it reduces the risk of developing polypharmacy and lowers the issue of non-adherence towards medication due to lack of proper cognitive thinking and rationale. The patient suffering from dementia faces various challenges which includes lack of proper coordinated practice and lack of proper understanding for consumption of medication due to memory loss which results in negligence in the treatment process by impacting the life of the older adult (Handley et al., 2017).  In this case implementation of proper non-pharmacological intervention such as dignity therapy and creative art expression-based storytelling programs will be helpful for the older adult in increasing the interest in the treatment process and lowering the longtime stress which is often found to deteriorate the patient's condition. Lin et al., (2020) performed a randomized control trial study for determining the effectiveness of Creative expressive art-based storytelling program for improving the health of the adult suffering from mild cognitive impairment. The study highlighted that implementation of early non pharmacological intervention helps in preventing the rapid cognitive decline which is common among the older adult suffering from mild cognitive impairment as it also increases the risk of developing dementia in the patient. The intervention will help the patient to grow interest and enhance the physical and mental strength by understanding or roleplaying in the story which will improve the cognitive function (Slamanig et al., 2021).  However, the implementation of such intervention will be challenging for the healthcare professional as a proper neurological testing must be done prior implementation of storytelling activity programs for the older adult which will require proper training and knowledge. The nurse in this case can also include visual art therapy for the older adult which helps in providing psychological benefit and helps in enhancing the cognitive function by allowing the patient to express their expression through both nonverbal communication and encourages social interaction which will help in maintaining a proper communication (Alawafi et al., 2021).  The communication strategy through visual art therapy will help in improve the quality of life by reducing the issue of social isolation and hence storytelling and dignity therapy can also be implemented and combined with such strategies which will help in understanding the patient need and maintaining a long-term adherence to all such treatment process by increasing the interests of the patient. The nurse requires effective training for implementing such a program as proper consideration must be provided by the nurses for securing the sentiment of the patients and providing care by referring to the ethical standards of practice. Training related to determination of non-verbal expressions, time, length and quality of story must be provided which will help in maintaining a quality of practice within the organization.

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