Enabling And Facilitating Communication Of A Dementia’s Diagnosis

Enabling And Facilitating Communication Of A Dementia’s Diagnosis With Persons With Intellectual Disabilities

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Abstract 

Dementia is one of the major mental health concerns, especially prevalent in patients diagnosed with intellectual disability, which potentially imposes challenges for health care professionals to diagnose and manage the patients effectively. It has been observed that with the increase in age, there is a subsequent rise in the incidence rate of dementia, among individuals with intellectual disabilities this scoping review the aim is to examine the communication of dementia diagnosis in people with Intellectual Disabilities (ID). A set of keyword along with Boolean operands were incorporated within the most well-known databases including PubMed, CINAHL, Cochrane library, Scopus and PsychInfo with the purpose of extracting relevant research resources. The outcome was filtered through the application of inclusion and exclusion criteria criteria, which led to the selection of 12 studies within the year range of 2000-2024. The PRISMA guidelines were followed while the extraction and screening were done using JBI checklist. The research conducted in the present study affirms the findings which stress on the role of healthcare practitioners to interpret diagnoses of dementia to the patients haing intellectual disabilities. Issues like acquired proficiency, context-specific communication, roll culture, socio-economic characteristics, psychological effects and patients’ engagement remains the prominent concerns. Promoting methods of communication, increasing organization in healthcare organizations, and improving family engagement are highlighted as some of the core components within the pre-existing research literature. Therefore, in managing these facilitators, healthcare systems can ensure the necessities for people with learning disabilities needs when diagnosed with dementia. The disclosed model is holistic in addressing the needs of this population and focus on enhancing communication and care.

Keywords: intellectual disability, dementia, diagnosis, communication, scoping review 

Chapter 1 Introduction 

1.1 Background

Communication of dementia diagnosis to a patient who has been diagnosed with intellectual disabilities has a special dynamic that can be influenced by several factors which may include the patient’s cognitive deficits, communicative abilities and emotional concerns. (Cleary and Doody, 2017). According to the World Health Organisation, about 1% of the whole world's population is suffering from an intellectual disability, and research indicates that this group can be exposed to higher risks of dementia. (World Health Organization., 2019). Empirical studies emphasise the uniqueness of communication plans when informing intellectually disabled people in such cases. The key components of clear communication include the use of simple language, visuals, and same terms repeatedly promotes better understanding among the patients (Fahey‐McCarthy et al., 2019). Smith (2020), indicated that one crucial and important step for diagnosis is the inclusion of caregivers as well as social support providers who will be a constant companion to the patient and help them understand everything communicated to them, in a more comprehensive manner (2020).

It is imperative to argue that efforts should be made to ensure that those suffering from dementia get adequate support in terms of the emotional ramifications of the disease since such people display higher levels of anxiety, depressive disorders, and stress. Dementia results in the degeneration of cognitive skills and abilities as well as impaired memory, a phenomenon that can elicit symptoms such as confusion, frustration, and grief in the affected individuals. In addition, this awareness may also trigger the onset of anxiety in regard to what lies ahead. Coping many emotionally charged situations and feeling is possible through therapy, and support groups and engaging in suitable activities can help one handle these feelings. Supporting environment, helping individuals develop relationships and finding ways to encourage them to be involved can also enhance the emotional state to the maximum possible extent. However, besides these physical needs, emotional requirements also cannot be overlooked, for, despite the fact that caregivers are people who constantly need care, they are also exposed to a lot of pressure and stress within the course of their responsibilities of providing subsequent patients' care. It’s important to acknowledge emotional aspect of dementia, and provide solutions for either the affected or the caretakers to make the process less painful, and more endurable (Dillane and Doody, 2019). Evolving actions that pay attention to human support and coping skills may be a suitable method that may lead to an improvement in psychological well-being (Boardman, Bernal and Hollins, 2014). The need to integrate a culture of person-centered comprehensive care for the adults that can be tailored to reflect cultural sensitivity and the ability to communicate properly is basic to the implementation of dementia diagnosis in this highly-susceptible population(Alsawy et al., 2017).

1.2 Problem statement

The communication of dementia diagnoses to persons with an intellectual disability is a multifaceted task. It has characteristics of cognitive difficulties, communication challenges, and emotional complexity. Albeit the rising risk of the onset of dementia for this group can be lamented, there usually is a lack of customised support that meets their particular needs (Fahey‐McCarthy et al., 2019). As suggested in the current literature, there is a need to ensure that effective communication approaches and the reliable strategies for emotional support for these patientsThe gaps, however, prevail in clarifying the various techniques which promote acceptability and psychologically reduce the diagnostic process. Overcoming these challenges is one of the crucial factors in guaranteeing accurate identification and appropriate assistance to persons with intellectual disabilities suffering from dementia (McCarron et al., 2020).

1.3 Rationale 

. The risk of the population concerned with the development of dementia is rising, especially among individuals who have conditions like Down syndrome, as shown in a study conducted by Watchman et al. (2019). Although the likelihood of misinformation and misunderstandings in patient communication with individuals having dementia is increased, there is no adequate research and resources available to assist in specifically accommodating their unique needs during the diagnosis (Janicki and Dalton, 2014).

Specifically, the quality of dissemination of the diagnoses rate is a critical factor in ensuring that individuals are adequately looked after and cared for (Janicki, 2011). Hence, there arises a need for a strategy that adjusts community capacities so that individuals can understand healthcare issues and participate fully in care programs. Additionally, this approach is based on the principles of equity and social justice (Chapman, Lacey and Jervis, 2018). All people of the community without any distinction for their intellect should be provided same quality healthcare, which involves proper identification of their diseases and their chance to contribute to in the process of its management(Tuffrey-Wijne et al., 2013). Through focused work on research studies and interventions, healthcare systems can thus aim to lessen these barriers and provide the same level of care to those with mental difficulties without regard to their intellectual ability.

1.4 Aims and objectives of the study 

This scoping review aims to map and provide a relatively descriptive overview of facilitators for communicating the dementia diagnosis to individuals with intellectual disabilities. 

Considering the above-stated aim, the objectives of the study are given as follows;

1. To identify critical factors and concepts facilitating the aspects of communication of dementia diagnosis among adults with intellectual disability. 
2. To collate findings from the literature which identifies current practices that facilitate the communication of dementia diagnosis among adults with intellectual disabilities.
3. To examine how research has been conducted with people living with intellectual disabilities receiving the dementia diagnosis to date, to inform future research methods. 

1.5 Research question 

The research question for this scoping review was formulated using the PICO framework, for which the breakdown is appropriately provided in the methods section. The question is given as under; 

1. What facilitates the communication of a diagnosis of dementia to adults with intellectual disability? 

Chapter 2 Methods 

2.1 Study design 

The use of qualitative design is crucial, in addition to the collection and analysis of data, to gain opinions, ideas, and experiences (Cresswell, 2013). Within qualitative research design, there are specific subcategories, including secondary research, interviews, systematic reviews, and scoping reviews. For the present research, the scoping review method employed as a qualitative design was adopted to check the common threads and deviations in the published articles on the subject of focus (Worthington, 2013). Finally, a research design of the study topic, which is the communication of dementia diagnosis with individuals who have intellectual disabilities, was chosen and was found to be the one which was appropriate and effective. The data used was retrieved from secondary sources to construct a relevant and accurate set of data, which could only be done by using the designed research. By using the qualitative research method, the author can analyse differences in literature types ranging from authors' views on the related subject matter (Maxwell, 2012). The application of the scoping review approach enabled a preliminary consideration of the potential dimension and extent of the available literature (Flick, 2022). It operated on creating research-based evidence on the matter of intellectual disability in dementia patients through the communication of the health workers, which is practical and facilitating in management and diagnosis. The rationale behind the selection of qualitative research design is that firstly, scoping reviews are used to determine the extent and topic of the available literature irrespective of the quality of the studies, while systematic reviews tend to evaluate the quality and strength of the evidence (Pham et al., 2014). Incorporating qualitative design is appropriate as it will allow for a broad scoping of the effects of variables because qualitative research entails an elaborate quantitative analysis of people’s experiences and perceptions of events. Moreover, qualitative integration of study results can help to define key issues, topics, and literatures gaps for characterizing the research topography (Peterson, 2019). Due to the various psychosocial factors involved in this research area, it is possible for a qualitative study to extract as many detailed issues within and across numerous research to provide a true and accurate summary of this literature (Hanurawan, 2012). This is because the overall goal of this scoping review is to explore and describe the research topic in line with the scoping review guidelines.

2.2 Study approach 

In this research project, which was guided by inductive research approach, the researchers extensively used particular concepts and ideas to systematically track the research objectives using the related studies and findings with the topic of interest. The research was inductive, which means it is one of the data analysis methods that used the qualitative approach (Worthington, 2013). The essence of this thesis is the investigation of the applicability of that concept to determine the efficacy of allowing and assisting people with intellectual disabilities to convey a diagnosis of dementia. The approach applied was suitable for carrying out the study and could be used to achieve the aim of this research despite the fact that induction is considered the generalised tool for dealing with and obtaining qualitative evidence (Azungah, 2018). In this step, researchers studied the articles from different authors, and the written opinions were summarised in one criterion. An inductive research approach is ideal for a scoping review considering the lack of theories that can be applied to this topic directly and that the study aims at identifying the number of the studies. As scoping reviews seek to identify research map including concepts, types of evidence and gaps surrounding a subject area, an inductive approach allows the reviewers to appreciate the level of scholarly activity in this area and the types of studies that exist without the restriction or bias from a theoretical framework (Pollock et al., 2023). It is essential to rely on the inductive rather than the deductive approach while assessing the current state of knowledge on this topic because an open-ended scoping review based on the findings of previous systematic reviews offers the most accurate and reliable data on the current state of research (Gottlieb et al., 2021).

2.3 Scoping review 

Scoping reviews are one of the critical elements of the research establishment, as they help achieve an all-around review of literature on one specific topic. They provide a comprehensive and structured way to measure both the scope and the scale of research, including coverage of essential elements and identification of gaps and trends (Pham et al., 2014). Scoping reviews, which are characterised by their synthesis of a broad selection of sources, therefore help researchers formulate questions, establish methodologies, and determine additional avenues to pursuing research (Constand et al., 2014). Furthermore, they help policymakers and practitioners capture the status of the knowledge, feeding evidence‐based decision‐making and defining which areas are following up the research (Munn et al., 2018). Finally, scoping reviews constitute important sources that facilitate progress and promote research efficiency as well as evidence-based practice within and between fields of study.

2.4 Difference between scoping review and systematic review 

The primary difference between scoping reviews and systematic reviews is the difference in the objectives, techniques, and the field being studied. However, systematic reviews are usually designed to respond to specific research questions by aggregating relevant studies that use strict criteria, whereas scoping reviews have a broader scope (Munn et al., 2018). Scoping reviews are listed as responsible for mapping the literature on a topic to help recognise the main issues, sources, and areas of the gaps without assessing the quality of individual studies. Broader search strategies, such as heterogeneous study designs to comprehensively provide the picture of therapeutic options, are often involved (Tricco et al., 2016). The scoping reviews may not conduct a full methodology appraisal of the studies. Instead, their goal is to sum up all existing research without the need for a detailed evaluation of sources (Pham et al., 2014). The reason for selecting a scoping review for this research topic is that this kind of review offers a first overview of the available number and size of the relevant research literature. Unlike the systematic reviews that seek to provide answers to focused questions, scoping reviews seek to map out the current research on a broad topic area. They enable the researchers to systematically categorize existing literature with regard to a particular subject area and to establish any areas of research that have not been researched before. Because the research question for this particular study is rather broad, the scoping review provides a broad overview of this large range of literature (Gottlieb et al., 2021). It is more appropriate than other conventional forms of review that are confined and have the central purpose of pooling data or evaluating the quality of research concerning a particular query. 

2.5 Indicators of conducting the scoping review 

A scoping review of the dementia diagnosis communication process in the context of people with intellectual disabilities is necessary for several reasons. Apart from the limited number of existing reports and the complexity of the problem, the scoping review will compile all the existing writings, including various studies, clinical guidelines and some information from experts (Pham et al., 2014). First of all, this issue embraces a vast ground with related studies like those of health, psychology and disability studies, such that a scoping review is necessary to explore the scope of the materials and identify the key concepts and theories. Furthermore, a scoping review will also be helpful while exploring the gaps within the available literature, for example, targeted communication strategies or interventions best suited for providing health care to this age group that could be extended in future research (Munn et al., 2018). There is also increasing interest among policymakers and practitioners in providing inclusive healthcare services in the community. As a result, this scoping review would expand the knowledge base in terms of combat inequities and ensure that people with intellectual disabilities living with dementia can access and receive appropriate care (Tricco et al., 2016).

2.6 Reporting Guidelines for the Scoping Review 

The reporting guidelines for scoping review help in improving the transparency of the methods, outcomes and conclusion of research by involving different aspects of introducing a problem, applying search techniques, gathering information and including a screening tool called PRISMA for collecting and extracting literature (Blanco et al., 2019). The PRISMA guidelines help improve the quality of research as they lead to assessing appropriate literature and involving the rigour of the methodology that is involved in research. Further, the reporting guidelines for scoping review help assess gaps in the literature, improve the advancements and findings of research, and increase the validity of the study. Further, the guidelines for scoping review include the title of the survey, abstract and introduction that provides an overview of research and its outcomes for researchers and research students and also consists of the rationale for selecting a method in research because it addresses the eligibility criteria of literature by using the PRISMA flow (D’Amico et al., 2012).

2.7 Search strategy (using PCC)

The search strategy for this dementia research is addressed by using the PCC framework, including Population, Context and Concept for dementia diagnosis with intellectual disabilities in individuals. The PCC framework for this research is given below:

This PPC framework was used in combination with keywords and Boolean Operators in the Scopus, Psychinfo, CINHAL, Cochrane Library and PubMed databases in which the keywords of intellectual disabilities, learning, cognitive disabilities, dementia, Alzheimer's disease, understanding dementia, supporting communication, family education, and psychological support were included by using Boolean Operators (AND, OR). These Boolean Operators included “intellectual disabilities, OR learning OR cognitive disabilities”, “dementia OR Alzheimer's disease”, “understanding dementia AND supporting communication”, and “family education AND psychological support dementia”. These keywords were included in Scopus, Psychinfo, CINHAL, Cochrane Library and PubMed databases, which resulted in various literature based on the exclusion and inclusion aspects:

With regards to the search strategy of grey literature, the websites of the public health organizations, disability advocacy organisations, and organizations that provide services to those with ID and dementia in an attempt to look for any unpublished reports, guidelines, or educational literature regarding how to inform someone with intellectual disability about a dementia diagnosis were searched. Researcher has searched for documents on the website of Public Health England, NICE and NHS, posters, and handouts that may be useful for the specific topic. They were regularly in searching organization websites, databases, conference pages, and networked experts for any new grey literature published on how organizations may ethically, empathetically, and in easily understandable language, communicate diagnosed dementia to clients with co-occurring dementia and intellectual disabilities for further research.

2.8 Screening process 

The screening process for this research is addressed by utilising PRISMA flow in which the information about databases and extracted literature are included. This is a two-part process in which articles are extracted based on the inclusion aspects and application of filters for including relevant literature (Oláh et al., 2020). In this research, the keywords were used in the databases of Scopus, Psychinfo, CINHAL, Cochrane Library and PubMed, and 15694 literature sources resulted on which the filter of the year was applied from 2004-2024, duplicates were removed and peer review articles were removed which led to the extraction of 2521 sources. This literature was also screened based on the design of the research, including the qualitative and quantitative research, and it resulted in 1645 pieces of research. Again, these articles and journals were extracted based on their abstracts and full access, which helped in assessing the overall research and resulted in only 258 studies. However, among the 258 extracted articles and journals, only 12 research were included because they involved dementia patients aged 50 and above and also having communication and intellectual disability. This process is given in the PRISMA flow below:

2.8.1 PRISMA Framework 

2.9 Data extraction 

The articles and journals that are extracted from the PRISMA flow are addressed in terms of the identification of the study, in which the title, author, and year are included, along with the design of the study. This research has utilised a secondary research design for assessing intellectual disabilities and dementia diagnosis, and the studies that are included in this research are based on the inclusion aspects and screening through the PRISMA flow, including results, methodology design, conclusion and characteristics of research. This information is provided in a table manner in (Appendix 1) in which the extracted literature is provided and includes information about their authors, year, limitations, findings, results and conclusion; also, the participants and method are included in that table. This table contains all the information and design of the research appropriately. It records the outcomes of the literature that is used in this research to provide communication facilities to persons with dementia and those diagnosed with intellectual disabilities. 

Using a framework-PAGER 

2.10 Assessing and Maintaining rigour 

The difficulty of a scoping review can be evaluated and preserved by using the Joanna Briggs Institute (JBI) methodology for scoping reviews checklist (Chung et al. 2020). The JBI critical appraisal checklist is a set of rules that are utilised to assess the quality and risk of bias in research studies. The checklist proceeds with a list of questions or criteria which are associated with the main aspects of a study's methodology and reporting. The checklist is the device that the reviewers use to go through the procedure, the experimental design, the identification of the confounding factors, the data analysis methods, and the conclusions. The JBI checklist of a standardised critical appraisal assists the reviewers in the objective judgment of the study quality before deciding to accept the research findings. The checklists are the main element of evidence-based practice, and hence, their use is a critical factor. This checklist has 11 items, which are title, background, objectives, inclusion criteria, search strategy, extraction, results, discussion, conclusions, funding and conflicts of interest (Santos et al., 2018). The background has stated the reasons and the motives of the review. The criteria of this checklist have enabled the researcher to see the accomplishment of the standard guidelines of the scoping review; for instance, the introduction of the explicit criteria of the inclusion that is consistent with the objectives was determined before the study, especially about the population, the concept, and the context. A well-planned search strategy with databases without date or language limitations was created at earlier stages. Data extraction was done based on objectives and eligibility criteria. The outcome was presented based on the objectives in a thematic qualitative analysis to address the research questions. After the above checklist is followed, the scoping review is conducted and reported. Moreover, the results of the JBI checklist are attached in the appendices (See Appendix B). 

2.11 Data analysis 

Data analysis is yet another standout part of the process, either in the course of an assessment or when conducting research. Data collection and analysis is described as a process of accumulating and assembling data that can be used for the sake of interpretation. Nisbet et al. (2009) have suggested that data analytics comprises various phases, such as data collection and the use of logical and statistical models to create and analyse the data. Likewise, the thematic analysis approach was applied to the review of the selected studies. Thematic analysis, according to Castleberry and Nolen (2018), is a Qualitative research method that involves gathering qualitative data in terms of texts or qualitative indicators and examining whether the quality of the data and the experiences were different. Henceforth, researchers can use this technique to track the text where similarities and modifications have been made in the published data (Pandey and Pandey, 2021). Besides, it was also framed on the chosen studies while creating themes to meet the objectives of this scoping review. Each theme was planned according to the study of the enabling factor and facilitating causes of communication and dementia for persons with Intellectual Disabilities.

2.12 Ethical considerations 

The ethics of the researchers is the more crucial significance that they take into account before the research. It allows the editor to publish the researcher's findings, rendering the study quickly, accurately, and without bias, which ensures that there is no misinterpretation in the journal. Hence, it prevented copywriting. Dill (2020), in their research work, investigated the ethical dimensions when it comes to collegiality principles. This investigation is based on the exploitation of scientific resources, the achievements of past research, and their demonstrative results. The main effect of people operating from different entrances is that they had to put in an extreme effort to see that their work was free of plagiarism. All the resources in this research are gained through articles with authentic sources, and their respective authors are acknowledged throughout this study and in any earlier work that had already been in the database before this study.

Chapter 3 Results and findings 

3.1 Introduction 

This section of the scoping review comprises the results and findings based on the interpretation of the collected data. The data was retrieved from the chosen databases, such as Scopus, Psychinfo, CINAHL, Cochrane Library, and PubMed. These databases were accessed along with Google Scholar to select the best-suited articles. The chosen articles included primary and secondary studies. In addition, the results of this review are presented through the thematic analysis technique. 

3.2 Characteristics of the Studies Included

The characteristics of the selected studies are critically examined through the JBI checklist as a critical appraisal tool. It enabled the assessment of each study chosen in terms of research questions, research methodology, outcomes and relevance to the current scoping review. Both primary and secondary studies were selected. The detailed description of the characteristics of each study is presented in the tabulated form (See Appendix A). It has defined the authors of the study, aims, research method, strengths and limitations, and results of the study. 

3.3 Thematic Analysis 

3.3.1 Theme 1: Investigating Communication Approaches and Factors for the Diagnosis of Dementia Adults with intellectual disabilities 

3.3.1.1 Practitioners decisions

This theme was found effective as it has addressed objective 2 of this scoping review. This theme has the aim of exploring the communication and diagnosis approaches that healthcare professionals use for dealing with dementia adults with learning disabilities. The selected research by Low et al. (2019) aims to conduct a systematic mixed studies review to study the attitudes and practices of care providers regarding the communication of the diagnosis of dementia in their patients. It utilised a sequential explanatory mixed studies approach analysis with pooled analysis. The results of the pooled analysis revealed that ‘34% of GPs and 48% of specialists usually/routinely inform the person with dementia about their diagnosis, and 89% of GPs and 97% of specialists usually or routinely inform the family about their diagnosis. Euphemistic terms like 'memory problems' are more commonly used to describe dementia than medical terms’. The practitioners' decision to diagnose and the way they communicate the diagnosis of dementia is based on their own beliefs on dementia and treatment efficaciousness and their confidence in diagnosis and communication. In addition, NHS Northern England (2017) has defined Intellectual Disability Disorder with two standard terms such as Mental retardation and Learning disability. It has also been mentioned that Intellectual disability is referred to as a group that has developed conditions that are characterised by significant impairments of cognitive functioning and are associated with adaptive, learning and behavioural limitations.

In contrast to the findings by Pendl et al. (2024), the respondents have indicated that for the purpose of understanding the topic of disability and dementia, a person ought to receive formal training and attend relevant courses as a certified caregiver. While having a client living with dementia is the reason to participate in such classes, the decision to attend is made when dementia symptoms are already quite pronounced at the later stages. This study has emphasised the experiences and new tasks of Australian formal caregivers to improve the care and treatment of dementia patients with ID. The responses from the patients and the involved respondents have indicated that due to a lack of expertise and training, the decision-making of the caregivers and the professionals is affected, thus resulting in low quality of care. On the other hand, Yates et al. (2021) aimed to reflect on the challenges faced by healthcare professionals and carers in providing dementia diagnosis to patients. The findings, in comparison to the previous studies, revealed that among the geriatricians, 20 respondents shared they never provided information on the progression and prognosis of Alzheimer's disease to the person with dementia. The person with dementia never asked/never queried, and 15 respondents mentioned that the professionals were either fearful of a depressive reaction or felt the knowledge was of no use. 

3.3.1.2 Cultural and socioeconomic factors

This sub-theme has represented the findings of the three chosen studies that have investigated such variables. For instance, the survey by McCarron et al. (2018) focused on the quality of care for people with ID and advanced dementia. The authors investigated cultural and socio-economic factors and found that factors such as personal characteristics, sociocultural aspects, religious context, emotional health, and well-being are linked with care by healthcare systems, which play significant roles in managing dementia. It is found further that patients with low economic and financial instability are majorly suffering from depression, dementia and other psychological issues due to poor and inadequate access to care services. , the findings of the study by Watchman et al. (2020) pointed out that the score of people with intellectual disability and dementia globally is turned into a social and health challenge which needs agitation and reduction in stress to improve the QoL of the affected population. It further stated that physical, social, and cognitive support for these individuals can work to reduce stress and healthcare burdens.

Similarly, Cleary and Doody (2017) found a significant relationship between cultural and psychological care and the prevalence of dementia in people with ID. It has moreover mentioned that due to socio-cultural constraints, the ID challenges among dementia patients could not be managed. NICE Guidelines for Care and Support to the Older Population (2018) also pointed out that people with LD also suffer from poorer health that results from their lifestyle challenges, diet and exercise due to inadequate help and enough guidance by the social care systems. The lack of services by social care systems also causes patient and client relationships to suffer due to a lack of communication and interaction for treatment and diagnosis. 

3.3.1.3 Emotional and psychological impact

This sub-theme is sufficient to discuss as it suits the central theme. The study by Cleary and Doody (2017) found that the emotional health of people with ID has a significant impact on the coping mechanisms that the care providers offer. It also mentioned that the aggression among these patients had heightened the emotional impact of care for dementia and ID patients. These issues can be managed through nutritional alternatives that can stabilise the emotional health and psychological well-being of such patients. At the same time, the study by Sheehan et al. (2014) has worked on exploring the aspects of dementia patients with ID and found that Dementia may manifest differently in adults with ID depending on the type and extent of the impairment. Symptoms that are seen in Down syndrome and attributed to the frontal lobe lesion (personality, emotion, and behaviour abnormalities) appear before linguistic or memory alterations. For the non-Down syndrome intellectual disability, the first symptom of dementia perceived by the caregiver is a general decline in emotional/symbolic change. The findings of Pendl et al. (2024) are also significant as they indicated that caregivers must deal with the conflicts between residents and the increased demands of quality of care and emotional support for dementia patients with ID. The training and education of dementia patients with ID need more improvements to bring an effective increase in their emotional and psychological well-being.

3.3.2 Theme 2: Evaluating challenges faced by practitioners in communicating with ID individuals receiving dementia diagnoses

3.3.2.1 Diagnostic barriers 

This theme was structured to raise the issues being identified in the past literature regarding the issues and challenges that healthcare professionals face in communicating with dementia patients with ID regarding the diagnosis and management of dementia issues. To address this theme, two research studies were screened and analysed, i.e., the study by Wollney et al. (2022) and Yates et al. (2021). With regards to the survey by Wollney et al. (2022), they conducted a systematic review of practices from the perspectives of people with dementia, healthcare professionals and carers. It also focused on the receiving and diagnosis of dementia. The data was collected from past literature and further analysed using thematic analysis in a narrative review. A total of fifty-two studies were focused for analysis in this review. The research findings showed that the process of receiving a diagnosis is usually a negative experience for dementia people, carers, and healthcare professionals and makes the carers feel unsure about the prognosis and the future of the person they care for. Revealing a dementia diagnosis is a complex and complicated thing which has no guidance and formal training for improvements. Carers, in particular, would like to see more practical and positive conversations about the effects of getting a dementia diagnosis. Yates et al. (2021) were based on a primary research design which has a different execution pattern from Wollney et al. (2022). Yates et al. (2021) aimed to assess the barriers and best practices of healthcare professionals in disclosing dementia diagnosis. It was based on the clinical interview study. Studies have been conducted on telephone interviews with 15 clinicians from different specialities with the help of a semi-structured interview and the collected data in terms of transcripts were analyzed through thematic analysis technique 

The patient and caregiver-related barriers were the sense of isolation, the misunderstanding of the diagnosis, and the denial of the condition. The obstacles that the clinicians were confronted with were the hard way of delivering the bad news, the problem of conveying uncertainty, and the shortage of time. The triadic interaction barriers were when the person was asked to meet several goals or needs at once, and also, the family requested the person not to disclose the information. Suggestions for the best practice for the clinicians and for taking a family-centred approach have been given. Doctors were stressing the importance of building relationships by being empathetic and creating and maintaining the connection. The education of the patients and the families was the one that made them understand how they should communicate, how the diagnosis was made, and how to deal with follow-up. Family usage consisted of family members having discussions with the patient before giving the diagnosis, and caregivers were involved in the debate. Studies on the issue may lead to the revision of the current tips on the most suitable way of communication for a dementia diagnosis. Both the selected studies were found effective in addressing this research theme, and their critical analysis has indicated that healthcare professionals have stressed the building of relationships with patients through effective communication. 

3.3.2.2 Family and caregiver involvement 

This sub-theme is addressed by the study of Yates et al. (2021), which emphasises the perspectives of the carers and the healthcare professionals regarding the diagnosis and dealing with people with dementia with ID. The study has focused on the eight categories of best practices of the professionals, such as exploring patients' viewpoints, engagement of the family members, responses to the patients' reactions, future planning, communication, quality of life and well-being, disclosure of diagnosis, and disclosure. This means that the involvement of family members and carers is essential for adequate care, diagnosis, and patient outcomes. Thus, further, it was concluded that the diagnosis and disclosure of dementia is a complex process that needs formal training of the carers and the healthcare professionals so that they can improve the knowledge of the family members as they mainly support their patients rather than caregivers. In addition, the scoping review by Dennehy et al. (2022) pointed out that family members play a significant role in reducing the burden of the carers and contribute to increasing the quality of life of dementia patients with ID.

In contrast, Watchman et al. (2020) also mentioned that family members are more significant than other individuals to make decisions for dementia patients with ID. However, upon analysis, it was found that the severity of the dementia was linked to the lack of support and care by the staff members and the families of the patients. Similarly, the study by Evans (2018) reported that Despite the fact that patients without ID may have different needs, subsequent principles of dementia care can be used: informing the patient about the diagnosis as soon as possible while using the most straightforward language; trying to find out the patient's preferences regarding the further care; trying to join efforts of different sectors which can be important in the care of patients with dementia (which may include the disability sector); family carers should receive emotional support and make appropriate use of respite services which is in accordance with Public Health England report on Dementia and people with LD: making reasonable adjustments. Watchman et al. (2018) also pointed out that the involvement of family members and individuals also plays a significant part in the decision-making processes to decide and select the effective treatment protocols for their patients with dementia and ID. They also communicate the issues and symptoms of their patients more effectively than the patients themselves.

Moreover, it has also provided guidelines for carers and their families to help them support their patients and deliver better healthcare. It further emphasised that local services should be adjusted in different places to help people with learning disabilities. NHS Guidelines for the Provision of Learning Disability Adapted Dementia Screening (2018) further suggested that bespoke training packages are adequate for the families and staff teams to demonstrate to them the practical steps to increase independence and promote longer-term well-being. In this way, they better understand and communicate the issues of their patients.

3.3.3 Theme 3: areas of improvement to enhance communication among healthcare professionals and dementia patients with ID 

3.3.3.1 Patient-centred communication approaches 

The study by Watchman et al. (2020) utilised person-centred communication approaches in the implementation process of psychosocial interventions for dementia patients with ID. These interventions were given to patients in social care settings to explore the outcomes of the photovoice methodology. It is found that individualised psychosocial interventions have shown effective outcomes in reducing distress and agitation. The psychosocial intervention includes cognitive, social, and physical support for the patients. While in comparison to, the study by Jacob et al. (2022), it has also supported patient-centred communication approaches for people with dementia and experiencing intellectual disability. Developments were made in the care settings that worked in effective implantation of the centred communication approaches to have significant conversations with dementia patients.

Moreover, NICE Guidelines on ‘Dementia: assessment, management and support for people living with dementia and their carers’ (2018) have supported cognitive stimulation therapy for people living with dementia. It also indicated that dementia patients usually suffer from memory loss, reduction in personal abilities, and communication challenges that affect their daily activities. It also suggested visual aids and simplified tests for effective communication with such individuals. 

3.3.3.2 ID-specific communication challenges

To address this sub-theme, the study by McCarron et al. (2018) was selected as it aimed to assess the quality of care and the services that are provided by the care providers to dementia patients with ID. It has also paid attention towards the issues that are faced by the care providers in understanding the problems of dementia patients with ID. The notable impairment challenges of dementia patients have hindered their communication aspects with the carers and the family members, leading to the decline of the quality of care as the care providers have suffered in understanding and recognising the symptoms of such patients. In comparison, the study by Moran et al. (2013) also explored similar aspects in their research and found that ageing has played a significant role in disrupting the treatment procedure as the aged population of dementia patients with ID were reluctant to take designed treatment protocol and created issues. There were inconsistent relationships between the patients and the care providers that directly affected the communication of symptoms and treatment. 

Chapter 4 Discussion 

4.1 Discussion 

The scoping review provides beneficial information on the communication of dementia diagnoses to people with ID; the information is aligned with the previous knowledge and research evidence. Based on the findings of the review, one of the most apparent themes is the critical role played by Health care practitioners in conveying information on dementia to people with ID. Each of these concepts is in line with prior studies that emphasise the importance of attitudes as well as approaches adopted by practitioners in promoting subsequent communication and effective dementia care. For instance, Low et al. (2019) performed a systematic review that focused on the role of practitioners' communication abilities and perceptions during the transmittal of dementia diagnosis. In addition, Werner et al. (2020) revealed that diagnosis self-perceived and perceived communication from the healthcare professionals impacted the experiences of the patients with ID and dementia. The emergence of these issues underscores the value of designing specific interventions to provide healthcare practitioners with adequate skills and knowledge that can help them in understanding how to communicate Dementia diagnoses to patients with ID.

Bidirectional communication of such diagnoses is therefore crucial when it comes to providing adequate support to individuals with learning disabilities. One of the enablers is ensuring that the various healthcare practitioners are competent in terms of knowledge, attitude and skills with regard to patients with learning disabilities. Research suggests that performance deficits are particularly evident when dementia messages are delivered to individuals with communication disabilities, and practitioners who have received specialised training in disability communication are more confident and competent (Werner et al., 2020). Furthermore, it was generally understood that practitioners who could be empathetic and sensitive to the difficulties faced by learners with learning disabilities can build trust with the patients and create a rapport that allows for disclosure about the diagnosis of dementia (Low et al., 2019).

Moreover, different and innovative communication styles must be used when giving individuals with ID the information about their condition to be understood. Meta-communication through factors such as tone and choice of words to fit the learning disability condition and requirements may improve understanding and lead to better decision-making (Jacob et al., 2022). For instance, they should engage in the use of visuals, use plain language when explaining things, and use activities that are tasking yet easy to accomplish in explaining such matters as dementia diagnoses to learners with learning disability (NICE Guidelines, 2018).

Cultural and socioeconomic factors then defined themselves as another significant area influencing the communication of dementia diagnoses. This reasoning thoroughly accredits the existing body of data examining the inequality of care providers for representatives with ID from a cross-sectional range of cultures and poverty classes. McCarron et al., 2018 established that sociocultural factors and economic issues comprise potent indicators of the standard of care for individuals with ID and advanced dementia. Likewise, Ouellette-Kuntz et al. (2020) and Hassiotis et al. (2019) noted the societal barriers that enhanced the lack of culturally appropriate and equal healthcare for persons with ID. The present study underlines the need to examine structural factors and design contextually specific interventions to decrease health disparities and increase equal opportunities for people with ID to receive dementia care from access and stigmatised groups.

Another recurring theme pertained to the emotions and mental health effects that accompany such a diagnosis for clients with ID and their care providers. This theme reflects earlier research on the severity of the emotional impact that dementia brings for people experiencing ID and their families. In their previous work, Cleary and Doody (2017) paid attention to the increased level of emotions regarding the care provision with a focus on aggressiveness in patients with ID and dementia. Concerning the caregiver reactions, Cooper et al. (2016) and Tuffrey-Wijne et al. (2016) noted that the caregivers of patients with ID and dementia have to deal with emotional issues. Thus, the results highlight the necessity for further evaluation for personal distress and other psychological and psychological and social-emotional interventions for people with ID and their families across the dementia course.

Another enabler comprises the facilitation of communication by the family members, caregivers, and support systems. This is because family members and caregivers usually fulfil the duty of demanding for the learning-disabled persons and explaining to them regarding dementia diagnosis (Yates et al., 2021). Incorporating family members and caregivers could help address issues related to dementia diagnosis and ensure patients with learning disabilities are treated similarly throughout their care plan stages (Watchman et al., 2020). Also, the efforts to build supportive and inclusive patient care environments may help the patients learn about their conditions when diagnosed with dementia and learning disabilities. Healthcare organisations where patients with learning disabilities are welcomed, listened to, and valued in their quest for care are organisations that will trigger and reassure patients with learning disabilities and open up to issues related to their conditions (Cooper et al., 2016). Furthermore, increased access to skilled supporting personnel and interpreters who can help those with learning disabilities express their choices will also improve the ability of a patient to communicate their preferences (Hassiotis et al., 2019).

In conclusion, effective communication of dementia diagnoses among patients with learning disabilities should follow a comprehensive strategy that recognises the peculiarities of this patient's group. By addressing enablers such as trained healthcare practitioners, effective communication, the involvement of families, and healthcare environments, different healthcare systems can make sure that individuals with learning disabilities receive necessary and appropriate support after the dementia diagnosis.

Chapter 5 Conclusion and Recommendations 

5.1 Conclusion

This scoping review aimed to provide an overview of facilitators for communicating the dementia diagnosis to individuals with intellectual disabilities. The PCC framework has been used as the search strategy for the dementia research to be conducted. The screening stage of this research was conducted effectively through the incorporation of PRISMA flow. Firstly, keywords were used in the databases, including Scopus, Psychinfo, CINHAL, Cochrane Library, and PubMed, to obtain effective search results. The data within the period of 2000-2024 was extracted to promote in-depth analysis. The quality of the literature was also screened depending on the type of research design, including qualitative and quantitative designs. The research process of this study used a secondary research design for assessing intellectual disabilities and dementia diagnosis, and the studies that are part of this research are based on the inclusion aspects and screening through the PRISMA flow, including the results, methodology design, conclusion and the characteristics of research. Overall, the scoping review has helped to shed some light on the communication of dementia diagnosis among those with intellectual disabilities. Pursuing the analysis of key themes and sub-themes, the evaluation has identified vital facilitators, challenges, and recommendations beneficial for enhancing this significant aspect of healthcare delivery.

All the objectives of the study were met through the identification of the main communication enablers, the collection of current practices of individuals diagnosed with dementia, and the analysis of the available research methodologies. Altogether, the outcomes identified are critical and focus on the communication of diagnoses by the health care professionals, cultural and socioeconomic factors influencing ID, and the emotional and psychological effects on the clients with ID and their carers. Finally, communication enablers like qualified caregivers, available channels of communication, involvement of family, and caregivers sensitive to ID patients' need for affirmative environments turned out to be the components of efficient dementia care for people with ID. Being incorporated into care practices, these enablers promote clear and realistic reporting, interpretation and continuity across the care cycle. In the future, better outcomes for people with ID and dementia require attention to ensure that the employed strategies correspond to the best evidence-based and improve communication with patients and their families. Hence, this involves supporting advanced training in diagnoses and treatment approaches to healthcare practitioners, as well as advocating for person-centred communication and creating cultures that embrace diversity and inclusion.

Moreover, it is also imperative to consider the structural factors and variability in access to care to provide fair dementia care for people with IDs with different backgrounds. Through effectively handling the above-stated challenges and enhancing the mentioned enablers, the healthcare systems can work towards the development of better care that is more sensitive and personalised for people with ID who experience the ordeals of dementia diagnosis. Overall, such endeavours could potentially lead to the betterment of the standard of living of people with ID and their care providers in the context of the dementia care continuum.

5.2 Recommendations

The following recommendations can be made with respect to the findings gathered in this scoping review to improve the communication of dementia diagnosis to people with ID: First, healthcare systems should implement programs offering specialised training for healthcare practitioners, as that would provide them with adequate skill and knowledge required to address the communication needs of people with ID (Werner et al., 2020). Such training should encourage the use of an empathetic approach, clear and simple language, and the consideration of cultural and economic differences.

In addition, healthcare organisations should provide contexts that are patient-centred for people with ID to show their responsiveness (Hassiotis et al., 2019). This includes guaranteeing that people with ID are provided with care, encouraging person-centeredness and delivering recovery-oriented support to people with ID and their families. Furthermore, future research should concern itself with the assessment of communication and support interventions for those with IDs who are diagnosed with dementia. The purpose should be to identify existing effective practices and strategies for the implementation of support provision (NICE Guidelines, 2018).

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Appendices

Appendix A: Summary matrix

Appendix B: Themes and codes 

Appendix C JBI Checklist 

Appendix D PRISMA Diagram

Appendix E Rationale of the study 

Introduction

Both systematic integrative and scoping are the standard methods of evidence synthesis. The scoping review is another form of evidence synthesis that provides a broad and comprehensive mapping of the evidence by cumulatively amassing data from diverse sources (Pollock et al., 2020). It is worth noting that systematic reviews are highly regarded in underpinning evidence-based healthcare practices (Barker et al., 2016; Pearson, 2004). However, the systematic reviews are strenuous, time-consuming (Hamel et al., 2020), limited in scope and only provide answers to specific research questions (Anderson et al., 2020). Based on the literature, there are barriers to the use of EBP among HC professionals: Workplace demands, inaccessibility and lack of essential skills (Bach-Mortensen et al., 2018; Barr-Walker, 2017; Curtis et al., 2018). It is evidence that supports the healthcare needs to be relevant, solely assessed, and then explained within the context of all the evidence available to cater to the whole body of literature (Andermann et al., 2016). While both scoping reviews and systematic reviews involve a comprehensive and more sophisticated approach to searching the literature for literature synthesising to provide an answer to a particular research question, they are different in purpose as well as the intended application of the outcomes (Peters et al., 2020). While scoping reviews can address broad questions, they embrace a range of research designs and sources of unavailable literature typically excluded from systematic reviews (Aromataris and Munn, 2020; Arskey and O'Malley, 2005; Levac et al., 2010). The primary difference between a scoping review and an integrative review is rooted in the rationale and conduct of results.

In contrast, the former aims to achieve considerable synthesis of the research data below the highest level of abstraction and provide a broad perspective on the problem under study in response to a formulated research question (da Silva et al., 2020). Since 2005, the scoping review has become famous for its mechanism for the rapid synthesis of evidence to be used in future healthcare practices (Pham et al.,2014; Peters et al., 2015). Scoping reviews also make evidence synthesis easy, especially for those individuals who may have limited time to conduct a review on their own (Arksey and O'Malley, 2005; Joanna Briggs Institute, 2015; Levac et al., 2010). Scoping reviews are considered highly useful in nursing and midwifery research (Pollock et al., 2020). 

Scoping reviews aim to map a comprehensive overview of the evidence rather than being limited to quantitative or qualitative synthesis of data (Peters et al., 2021). In a densely researched health landscape, scoping reviews can proficiently map the literature on a broad topic, state knowledge findings, highlight research gaps, and guide future research (Kazi et al.,2021). Scoping reviews are specifically beneficial when the critical concepts in a field are complex, broad, and have yet to be comprehensively reviewed before (Khalil et al., 2016; Levac et al., 2010; Peters et al., 2020; Pollock et al., 2020). Scoping reviews are helpful in providing clarity to underlying concepts, emphasising gaps in the research and reporting on evidence to guide practice (Peters et al.,2015). In the context of the development of some fields, scoping reviews provide much leverage in contexts where it is impossible to conduct an in-depth investigation of outcomes or effectiveness (Barker et al.,2020). These aptitudes of scoping reviews are particularly relevant to the topic of facilitating the communication of a dementia diagnosis to adults living with intellectual disability, as little is known about the subject and underlying concepts and factors. The topic under discussion is rather diverse and multifaceted – it focuses on a phenomenon that has not only been researched insufficiently but is also rather intricate. This could be explained by the fact that only a few studies were identified during the preliminary literature review process. Particularly in the field of ID and dementia in Ireland, the lack of specific practice paradigms only adds to the situation. When there are no common paradigms to follow, it is not easy to gauge the intensity of existing evidence and research agendas. Thus, the kind of study deemed most suitable for achieving the present objective was a scoping review, a method used to determine the amount of evidence available, evaluate existing research outcomes, and identify topics requiring further analysis.

Replicable and transparent decision-making comes from following the most current scoping review guidance (Peters et al., 2021). Unfortunately, scoping reviews have been published which have not systematically and methodologically followed a framework, leading to the persistence of consistency deficits in the use of terminology, process, and reporting (Tricco et al., 2016; Munn et al., 2018; Khalil et al., 2020). Modifications to individual stages of scoping reviews have led to difficulties amongst researchers in choosing what adaptations to include; thus, methodological and quality inconsistencies can arise across scoping reviews, which can result in bias (Grant and Booth, 2009; Munn et al., 2018). Despite scoping reviews being in existence for almost two decades, reporting guidelines for scoping reviews exist (Arskey and O'Malley, 2005; Levac et al., 2010; The Joanne Briggs Institute, 2014). JBI guidelines (2020) are acknowledged as the most current and comprehensive guidance for conducting scoping reviews (Khalil et al., 2020; Peters et al., 2020). The Preferred Reporting Items for Systematic Reviews extension for Scoping Reviews (PRISMA) was developed by JBI in 2018. It complements JBI's guidelines and provides reviewers with a reporting checklist for their scoping review. Strict adherence to the most current reporting standards is fundamental to informing evidence-based decision-making (Peters et al.,2021). The use of PRISMA in addition to JBI guidelines (2020), enhances transparency and rigour and allows for a more standardised methodology (Peters et al., 2020; Khalil et al., 2020). This combination is viewed as best practice (Pollock et al., 2020; Mc Gowan et al.,2020) and therefore is applied to this scoping review. 

 They encompass nine steps:- 

1. Define objectives and research question 2. Develop inclusion/exclusion criteria
2. Describe the planned approach 4. Search available evidence
3. Select evidence 6. Extract evidence
4. Analyse available evidence 8. Present results
5. Summarise evidence aligned with the objectives of the study (JBI, 2020).

Some challenges to the evolution of high-calibre scoping reviews include a low number of researchers trained in the methodology, not enough reflection on the research question, and a lack of consideration afforded to the suitability of the approach to meet the research aims. The investigation team needed more knowledge or insight into the topic (Khalil et al., 2020). To overcome these shortcomings, the researcher consulted with an expert in dementia in ID who is experienced in conducting research, including scoping reviews on the subject. The researcher has years of experience working as a dementia ID nurse. Going forward, JBI will work to provide clear guidance on the suitability of employing SR methodology over others to answer a research question (Munn et al.,2018). A considerable amount of time was devoted to the formulation of the research question, and the mnemonic known as PCC (population, concept, context) was adopted, which helped to refine the scoping review question that reads, "What enables the communicating of a diagnosis of dementia to adults with Intellectual disability?" The application of PCC helped ascertain the suitability of the scoping review methodology to meet the research objectives (Peters et al., 2022; Pollock et al., 2020). It is unnecessary to outline outcomes or phenomena of interest in a scoping review (Peters et al., 2022). 

This scoping review aimed to map and provide a descriptive overview of the facilitators to communicating a dementia diagnosis to people with intellectual disability, identify factors, concepts and current practices facilitating the communication of a dementia diagnosis to adults with ID, and examine how research has been conducted to date to inform future research methods.

The Problem-Gap-Hook disquisitional (Lingard,2015) will be used to rationalise the use of scoping review methodology to answer the research question, "What Facilitates the Communication of a Dementia Diagnosis to People with Intellectual Disability?" 

Gap- lack of synthesis of existing literature 

Not much is known about the enablers and barriers in explaining a diagnosis of dementia to an adult with intellectual disability, the type of studies conducted on this subject up to date and the influencing factors. However, there remains a limited understanding of the experience of people with dementia who have no ID. Merl et al. (2022) systematically reviewed the generic dementia literature (PWD without ID) but from a carer/healthcare professional's viewpoint and realised there was a gap in the provision of clinical support to enable PWDs to receive information about the diagnosis and called for the development of such a framework. Morton-Nance and Schafer (2012) reported district and learning disability nurses lacked experience, skills, or tools to assist in the communication of a diagnosis to a person with a learning disability. While tools exist to support the disclosure of bad news to people with ID, formal guidelines and increased support were identified as further requirements (Brownrigg, 2018; Tuffrey-Wijne.,2013).

 A recent systematic review investigating the experiences of people with intellectual disability and dementia highlighted the scarcity of available evidence and the need for future inclusive research to gain an enhanced understanding of the subject (Jacobs et al.,2022). Dennehy et al. (2022) mapped post-diagnostic dementia support for people with intellectual disability and also highlighted the need for further research. Due to a lack of research and engagement, the experiences of people with ID and dementia remain unknown and overly dependent on proxy reporting (Watchman et al., 2017). An issue also highlighted by Brownrigg (2018) was the need for first-hand views and experiences reported in the literature. 

Hook-so what it matters to solve the problem

Some potential adverse outcomes for not disclosing a diagnosis of dementia to people with intellectual disability include, as proposed in the literature. Withholding information about the presence of dementia from adults with intellectual disability eroded their self-determination and choices regarding options for their future course of life (Jacobs et al., 2022). The HSE National Consent Policy (2022) and the Assisted Decision-making Act (2015) describe the steps that are necessary given the presumption of capacity to identify the persons' wishes and preferences as well as the actions that need to be taken to support the development of capacity, to provide the options and to listen to the person. Informed by the principle of participation, sharing of dementia diagnosis allows patients to be involved in the decisions regarding their future care needs as well as respecting their autonomy (Dodd et al., 2017). In a study that focused on the involvement of people with ID in breaking bad news, it was established that people wanted information regarding their condition as this would enable them to understand what needs to be done regarding their illness and also wanted someone to talk about the wishes and feelings regarding the disease and dying (Tuffrey-Wijne. ,2013). Non-disclosure of a dementia diagnosis denies the person living with ID the opportunity to reflect, understand and express their emotions (Sheth, 2019; Watchman,2016). Sharing the diagnosis facilitates inclusion in making decisions about future support and care and promotes person-centeredness (Dodd et al., 2017). People with ID desire information on their diagnosis as this empowers them to make informed decisions about treatment and express wishes and concerns related to their illness and death (Tuffrey-Wijne.,2013). There is a need for accessible language, the development of practical guidance on how to live with dementia and hopeful messages aligned with the diagnosis (Lecouturier et al.,2008; Merl et al.,2022; Poyser & Tickle,2019). Morton-Nance and Schafer (2012) reported district and learning disability nurses lacked experience, skills, and tools to assist in the communication of a dementia diagnosis to a person with ID. The HSE National Consent Policy (2022) and the Assisted Decision-Making Act (2015) detail the steps which are required considering the assumption of capacity to ascertain the person's will and preferences and actions to be undertaken to build capacity, offer alternatives and hear the person's voice. Feelings of insecurity were compounded by the absence of support to help individuals comprehend why they were changing despite individuals demonstrating they held some insight that they were not the same (Jacobs et al.,2022; Watchman,2016). There is a need for accessible language, the development of practical guidance on how to live with dementia and hopeful messages aligned with the diagnosis (Lecouturier et al.,2008; Merl et al.,2022; Poyser & Tickle,2019). 

The problem that arises due to a lack of synthesis 

Not disclosing a diagnosis of dementia to a person with intellectual disability precludes their relating first-hand experiences as well as participation in research (Jacobs et al.,2022). This is despite the value of personal experiences being acknowledged in the literature (Górska et al.,2018; Bartlett et al.,2010). 

Individuals with ID have been historically neglected, and often, their opinions or preferences do not inform decision-making even in the formation stages. Since there is a lack of primary data collected directly from individuals with ID and dementia, there might be unfavourable decisions made, which would have a detrimental effect on these people (Watchman et al., 2017). Potential keywords and subject headings were developed, and thesis statements along with sources for CINAHL, Medline, PubMed, Scopus, and PsycINFO were presented to a librarian, as well as clearly described. Each strategy was followed in a bid to identify whether this would return effective results. When time constraints of both the librarian and the researcher were not a concern, completion would have increased rigour according to the PRESS 2015 Guideline Statement (McGowan et al.,2016) for electronic searching. However, a second librarian who specialised in ID literature was consulted to make sure the search was thorough and more rigorous and that the terms used in the search were sufficient. It was clearly stated that the period restricting our search was between the years 2004 and 2024. This was done to ensure that there was proper documentation of the search strategy used; hence, the number of records retrieved was noted. Central and local databases were searched. Duplicates were removed, and two researchers crosschecked the articles against the inclusion/exclusion criteria and documented the reasons for exclusion after the study title was identified. In cases of disagreement between the two reviewers, the specific instances of opposing opinions were debriefed leading to a consensus. Documents such as professional guidelines classified as grey literature were explored. Citation searching for both, retrospective and forward was also performed. The explanation of exclusion criteria with the consideration for the selection process was provided in the form of a flowchart compatible with the PRISMA flow diagram (Page et al.2021). All decision-making was clearly documented, and rationale was provided. All search records were retained for future reference to enable replication and ensure transparency.

Patterns, Advances, Gaps, Evidence for practice and Research recommendations were applied to further structure and improved data extraction and reporting of findings (Bradbury-Jones et al., 2022). Assistive software such as NVIVO or ENDNOTE was optional due to the small number of search results; thus, Excel sufficed. Engagement and consultation with stakeholders are paramount to the relevance, context and accessibility of research (Pollock et al., 2018; Tricco et al., 2018). The benefits of including stakeholders in the process of scoping reviews augment the accessibility, meaning and knowledge of results as well as identification of priorities not identified in the literature, integration of learning and partnership working (Peters et al., 2021). To improve stakeholder participation and utility, two people with Intellectual disability will be consulted throughout the review process, and accessible versions of the findings will be produced. 

Justification of the chosen methodology 

A scoping review is paramount towards synthesising the body of literature regarding people with intellectual disabilities (PWID) and dementia diagnosis communication. Contrary to systematic reviews, which usually are concentrated on a particular question of research that is about the effectiveness of a given clinical intervention, scoping reviews have a broader viewpoint; they explore the area of study, its scope, its abundance, and its nature (Munn et al. 2019). At the same time, it would add to the database of dementia disclosure for PWID, which will become the purpose of the study. Since no more detailed analysis has been made on this specific subject, the scoping review could indicate what field urgently needs addressing while, at the same time, indicating the contemporary state of knowledge. This method enables a combination of research methodologies other than randomised controlled trials, thereby enabling a limited qualitative review of the study focusing on the perception of stakeholders on disclosures, communication strategies, and the overall impacts of disclosing information. Then, it will draw a gross map of the field by identifying what issues and questions still require further research after eliminating as many doubts and problems as possible. Specifically, scoping reviews employ a method that follows the following processes: screening through the studies, data extraction, and narrative synthesis that are supposed to be accurate, highly repeatable, and as inclusive as possible (Khalil et al., 2016). This offers confidence that this bias that many narrative reviews may inadvertently bring through selective quotation is not an issueScoping reviews indicate the current gap in knowledge in this area and serve as the primary input for the work which aims to define critical concepts for the problem, stakeholders, impacts, challenges, and future directions in the area of learning and caring for an independent population (Debrah et al. 2022). The plan will be able to provide information and research issues of particular interest that are pertinent to the health care of people with dementia and intellectual developmental disabilities.

Whilst the disclosure of the diagnosis of dementia to any individual might be complex, specific difficulties are to be expected in case the diagnosis was made for a person with an intellectual disability. People with IDs can anticipate Alzheimer's disease at earlier ages than the ones with no impairments (Gaser et al. 2013). Yet, diagnostic investigations of dementia in this population can be problematic, considering that the symptoms may be indistinguishable from the baseline cognitive impairment or adaptive behavioural changes related to ID. Apart from that, a lot of people with ID have speech or communication problems, which sometimes lead to obstacles to the assessment of the subjective changes in cognition and functionality that can be a portent of early dementia (Woods and Lamers, 2016). This lays the foundation for timely and appropriate communication of the dementia diagnosis to persons with ID for several reasons. First, the cautious approach in dealing with the diagnosis through being straightforward but sensitive in handling patients is the proper course of action. Secondly, there may be some opportunities to plan for advanced care during the communication of the dementia diagnosis in many aspects, such as medical, financial, and lifestyle (Sussman et al. 2021). Letting the person with ID be involved in decisions earlier on helps them express their past choices and present interests while their mind is still capable of making decisions. Finally, the declaration of dementia leads to other desirable services and supports, which could be a means of prolonging the affected person's current abilities and improving the quality of their life for as long as possible. The most important advantage of early diagnosis is that carers can adapt the activities, modify the environment, and adapt the communication approaches to meet the changing demands of the individual with dementia (De Vugt and Verhey, 2013). To summarise, research that researches the best ways to give a dementia diagnosis provides a person with ID power. At the same time, it is critical information for caregivers to make plans and provision of services. Dementia diagnosis is optimised through this research, thereby improving the experience of living with dementia significantly.

The rationale for using the scoping review methodology in this study is that it is ideal for mapping an extensive research domain and providing an overview of the topic area by identifying prominent themes in the literature (Arksey and O'Malley, 2005). Scoping reviews apply well in the field of research, where the subject is diverse and encompasses a broad range of aspects, as seen in the communication practices regarding dementia diagnosis in individuals with intellectual disabilities (ID) (Pham et al., 2014). Hence, in order to systematically identify these concepts and theories and to avoid missing any area of research pertinent to this study, the study will adopt a scoping review approach to accomplish its objectives and provide a descriptive rather than systematic synthesis of the identified literature. The choice of databases, such as MEDLINE, PsycINFO, CINAHL, Cochrane Library, and Google Scholar databases, is explained by the scope of the topic under consideration, which is health care (Booth et al., 2016). These databases provide a convenient way to search a large number of peer-reviewed journals and research articles in order to have a comprehensive search of the literature available on the given topic.

The terms selected to search for articles regarding intellectual disabilities, dementia, and delivery of diagnosis may adversely affect the scope of the results, as well as the lack of studies in the subject field and the articles returned. This would seem to ensure that a specific focus on intellectual disabilities and dementia is incorporated into the search strategy, as opposed to considering other forms of ID or dementia that are not relevant to the individual in question. Restriction on the articles published in the English language and without placing any bounds on the date of publication is conventional to limit the range of the scoping review in order to make the process manageable (Grant and Booth, 2009). Although this method may increase language and publication bias, it contributes toward a rational organisation of the analysis and filtration of the essential wording of the studies.

The omission of conference papers, editorials, and grey literature is inevitable to ensure the comprehensive review contains only reputable sources. Despite the potential benefits of identifying guidelines through grey literature, using only systematic research papers can increase the credibility and accuracy of the evidence (Tricco et al., 2018). It is critical to work through the specification of the essential facts' data charting framework, which would allow for the classification of information from the included articles and encompass patient demographics, type and disclosure method of dementia, support strategies, and the results of communication (Peters et al., 2015). Due to this structuring of files and data extraction, it becomes easy to analyse and compare findings that have been generated in various studies.

The importance of using a critical appraisal tool for quantitative articles, such as the JBI checklist, is that it increases the methodological stringency of the article review process (Joanna Briggs Institute, 2017). However, when the inclusion of low-quality studies is allowed in the review, critical appraisal helps to make a list of potential research biases and limitations. In general, the specific approach of the scoping review described in the article provides a clear and comprehensive procedure for identifying and categorising the studies on communication strategies in dementia in patients with ID. As such, carrying out a synoptic conceptual mapping of themes and topics evaluation of the gaps in knowledge, this piece of work is hoped to contribute towards the formulation of clinical guidelines and procedures, as well as identify trends for future investigations in this vitally significant sphere of medicine.

Conclusion

Dementia is much more likely to occur in persons with intellectual disabilities. Nevertheless, telling a patient about their dementia may be quite a problem because of the comprehension issues in elderly patients. This communication should be made possible and convenient in a proper manner in order to enhance efficiencies. This may include simplifying instructions, using graphic displays, reinforcement, engaging the caregivers, and comprehension checks. The objective is to focus on the principles of self-determination and non-discrimination to respond to the needs of persons with intellectual disabilities to have clear information about their condition and, therefore be able to participate meaningfully in the decision-making processes regarding their health and treatment. This is an ethical imperative and human rights issue is the problem.