Setting Up a Cognitive Training Service for Egyptian Older Adults

Abstract

Background:

With greying of nations, dementia becomes a public health priority. The rising dementia prevalence escalates both health care expenses and burden, placing the entire healthcare system and caregivers under huge stress. Cognition-oriented interventions have been shown to enhance the overall cognitive performance among healthy and cognitively impaired older adults.

Objective:

This article is assumed to be a steppingstone for the introduction and establishment of cognition- oriented interventions in Egypt. In addition, it aims to offer provisional guidance for health care providers in Arab speaking countries in a stepwise approach in order to establish cognition-oriented intervention services and help them to evaluate and monitor their efficacy.

Methods:

Aconsortium of Egyptian and Greek specialists developed a protocol for the operations of the Ain Shams Cognitive Training Lab and the provision of cognition-oriented interventions. This protocol is based on a previous successful protocol that has been implemented in Greece for more than 10 years and is co-designed to fit the needs of older adults in Arabic speaking countries.

Results:

The types of services offered, their objectives, recruitment of participants, delivery of interventions, measurement of outcomes and privacy policy are all outlined in the policy.

Conclusion:

Establishing the appropriate framework in which cognitive training strategies can be adapted and implemented in Arabic population, constitutes an inevitable achievement in healthy ageing and can be also assumed as a dementia prevention strategy. Moreover, setting up the first cognitive laboratory in Egypt older adults, can be a model of good practice across the Arabic countries.

Keywords

Aging Alzheimer’s disease cognitive remediation computers dementia memory disorders mild cognitive impairment psychosocial support systems web-based intervention

INTRODUCTION

With greying of nations, dementia became a public health priority as stated by the World Health Organization (WHO) in 2012 [1]. Alzheimer’s Disease International and WHO reported in 2019 that over 50 million people worldwide are living with dementia; this number is projected to increase to 152 million by 2050, with an estimated dementia cost of about $818 billion. Dementia is a major cause of disability and dependency for older adults across the globe [2]. Unfortunately, there is no current curative treatment for Alzheimer’s disease and related disorders but significant efforts are underway to alleviate associated manifestations, promote daily activities, enhance the cognitive reserve of patients, and promote neuroplasticity [3]. Cognitive training interventions are considered one of the most promising approaches that could improve cognitive performance among older adults and the subsequent improvement can be retained for up to five years after training [4 –6]. More specifically, this kind of interventions focus on improving or maintaining cognitive abilities through a structured and adapted set of tasks, and therefore empower specific cognitive functions. Cognitive training interventions have proven efficacy and cost-effectiveness either in traditional pencil and paper format or in computerized format; those sessions could be led by instructors, psychologists, or other trained personnel [6]. With growing interest for implementation of cognitive training exercises and establishing such emerging services, there is a need to have some guidance and directives regarding the design, execution, monitoring, and analysis of these sessions. In this article, we will explore some of those prerequisites.

This study aims to describe the development of clinical practice guidelines of the Ain Shams Cognitive Training Lab in Cairo, Egypt and its implications for the development of cognitive training services in Arabic speaking countries

MATERIALS AND METHODS

The policy was created in collaboration with the Greek Association of Alzheimer’s Disease and Related Disorders (GAADRD) who has more than 10 years of experience in implementing and promoting cognitive training programs for healthy older adults and older adults with cognitive disorders [7 –9]. A consortium of specialists from Egypt and Greece [10] comprising geriatricians, neurologists, neuropsychologists, and social workers co-designed the protocol in a series of meetings. In the first meeting the Greek team visited the Ain Shams University Geriatric Hospital, trained 20 specialists in designing, implementing, and assessing the outcomes of cognition-oriented interventions and were informed of the goals for setting up a cognitive training laboratory and the available physical space and equipment. In the second phase, the steering group of the consortium, comprising specialists from both countries, conducted 6 monthly meetings to finalize the setting up of the laboratory and the drafting of the policy. In the third phase, representatives from the Greek and Egyptian team met in Cairo to oversee the accomplished laboratory, finalize the policy document, and take steps toward the implementation and dissemination of the policy. The final protocol that guides the operations of the Ain Shams Cognitive Training Lab [10] is presented in this article.

RESULTS

Definitions of interventions offered at the laboratory

“Cognition-oriented interventions” (COIs), that comprise of cognitive training, cognitive stimulation, and cognitive rehabilitation, is a collective terminology for a cluster of non-pharmacological interventions (NPIs) in which a variety of practices are implemented in order to involve different cognitive domains and intellectual skills with diverse levels of depth and specificity. Dissimilar to other NPIs that focus primarily on other outcomes, like behavioral (e.g., aggression), emotional (e.g., depression and anxiety), or physical (e.g., insomnia), the spectrum of COIs objectives embrace enhancing and/or maintaining cognitive functions while also addressing the effect of the current cognitive abilities on functional capacity and activities of daily living [11].

Cognitive training usually involves repeatedly practicing a group of structured tasks designed to train and stimulate particular cognitive domains and skills divided into subtypes of cognitive exercises, and cognitive strategies [7, 12], intended to enhance intellectual performance, or minimize the influence of cognitive decline [13, 14]. Cognitive training may be offered through individual sessions [15], or group sessions [16], or may be administered by family members with the support of a specialist [17].

In the current article, we present the structured clinical practice guidelines of the Cognitive Training Lab of the Ain Shams University Hospital in Cairo. Given that, up to now, there is a lack of existing practice guidelines about cognitive training and cognitive rehabilitation in Egypt as well as in Arabic speaking countries, we aim at introducing operational guidelines which will be considered as one of the starting points in the field of cognitive neuropsychology and cognitive training in Arab world.

Procedures for implementing cognitive oriented interventions

The context of cognitive training involves neuropsychological testing at baseline, running the COIs sessions, then re-evaluation of post-intervention cognitive status and conducting a scientific research on the overall evaluation of cognitive training protocols. The main aim and focus of cognitive training interventions is to improve and stabilize specific participants’ cognitive functions, apply techniques to improve daily living, provide psycho-education, and support the development of memory strategies. The proposed mechanism of action, mainly restorative and mechanisms related to neuroplasticity, aims to improve or maintain ability in specific cognitive functions, which could be evaluated through follow up assessments [18].

On the other hand, cognitive rehabilitation focuses on the functional capacity of participants by reinforcing, fostering, or restoring previously learned forms of behavior, or establishing new patterns of cognitive activity and compensatory techniques for relevant neurological deficits and in context of existing pathology. The ideal context is the participant’s natural environment; however, COIs laboratory setting should be designed in a way allows the participants to feel comfortable. Its format is typically individualized (participants-centered approach) [19]. The focus of cognitive rehabilitation sessions centers on clusters of cognitive domains required to perform individually-relevant daily activities. At the same time, behavioral, occupational, psycho-educational, and strategy training from time to time might be included. Its proposed mechanism of action is a combination of restorative and compensatory approaches allowing for the reduction of additional disability [20].

Cognitive stimulation sessions target the enhancement of global cognitive functions and general orientation skills. Its context includes outpatient clinics, residential care centers, daycare facilities or the participants’ natural environment. It is conducted usually in group sessions focusing on orientation skills and global cognitive status and aims to engage participants in an enjoyable way [21].

Overall objectives of cognitive oriented interventions

The main goals of COIs protocols are to evaluate their impact on both cognitive and non-cognitive outcomes of people with subjective cognitive impairment (SCI), mild cognitive impairment (MCI), and mild dementia and to study the effects of COIs in comparison to other standard non-pharmacological interventions for people with variable degrees of cognitive impairments [22] such as healthy diet, physical exercises, music therapy, and social activities [4]. Nevertheless, there are many secondary outcome measures that could be addressed like identifying and exploring factors related to the intervention and ideal practice that might be related to the efficacy of COIs. Furthermore, another important issue is the identification of motivators and barriers that affect the engagement of participants to COIs sessions which may differ between individuals and communities.

Recruitment of participants and assessment

Recruitment of participants to cognitive training sessions and adherence to standardized programs could be challenging. Compliance to these sessions and attendance should be motivated by enjoyable activity, friendly atmosphere, safe transportation (if arranged by the provider of cognitive training sessions), avoidance of any additional costs, and delivery of home-based exercises whenever possible.

There is a very wide range of eligible participants to COIs including healthy older adults, adults who experience SCI, people with MCI, and patients at early stages of dementia. All these participants are likely to benefit from COIs and the instructors should re-evaluate the enrollment of each case if the person’s ability for effective participation in COIs is questionable.

The diagnosis of cognitive impairment in its different stages should be made on the basis of established clinical features and meet the diagnostic criteria of standardized assessment tools such as: the International Classification of Diseases, Tenth Revision (ICD-10) [23], the National Institute on Aging and the Alzheimer’s Association (NIA-AA) [24], Diagnostic And Statistical Manual Of Mental Disorders (5thed.) [25], Vascular Impairment of Cognition Classification Consensus Study [26], The International Behavioral Variant FTD Criteria Consortium (FTDC) [27].

Recruitment of participants who have mild stage of dementia or patients with MCI to the appropriate COIs for their cognitive status should be conducted on the basis of ranges of scores or individual scores on a standardized scale such as Clinical Dementia Rating scale [28] and other standardized neuropsychological tests while, participants with SCI should ideally referred to be enrolled in cognitive stimulation sessions.

The majority of candidates are generally from community dwelling older adults nevertheless, other candidates from nursing homes who are eligible to join sessions could be recruited.

However, there are many participants who are less likely to benefit from COIs principally those who have moderate to severe dementia, severe hearing or visual impairment, aphasia or people who refuse to engage in the activities. Furthermore, patients with newly diagnosed psychiatric illnesses affecting the patient judgment [22] and/or non-compliant to their medications or having disabling communications barriers are very unlikely to get benefit from COIs.

There is no specific age restriction to engage to COIs as long as the participant can interact and comply with the schedule and format of the sessions. Illiterates are also able to attend the intervention programs; however, they need individualized sessions and customized exercises.

Delivery of interventions

Before the beginning of interventions, participants should be fully informed about the instructions of different tasks and get familiar with them to avoid frustration and diminished performance due to lack of understanding of task mechanics.

COIs are usually conducted in pencil and paper or computerized format [9 , 29–31], or may be structured analogues of daily activities in which the cognitive underpinnings are clear. Home-based computerized cognitive training will be adopted and advocated as an alternative choice during the era of COVID-19 by a team of researchers in Ain Shams University, Cairo, Egypt which has already started to create adapted translations of software applications. Enrollment of participants to the self-administration computerized cognitive training at home will be conducted after an orientation session and supervised practice to ensure familiarity and understanding of tasks, based on the procedures and experience of the GAADRD [7 , 32–34].

Interventions may be delivered on commercial platforms, or platforms which are designed specifically for the institution or the facility conducting the sessions which target single or multiple cognitive domains like memory, executive function, attention, language and visuospatial functions, with variable levels of difficulties and different versions of exercises within the same level of difficulty.

All selected tasks should be translated into the relevant language or dialect and be culturally adapted, if transferred from another region or if they have originally been created in a foreign language.

In more detail, cognitive training includes pencil and paper as well as computerized tasks separated in the following categories:

✓ Attention training modules:

Selective attention

Sustained attention

Alternating attention

Divided attention

✓ Memory training modules:

Working memory tasks

Verbal memory tasks

Episodic memory tasks

Prospective memory tasks

✓ Language training modules:

Verbal fluency

Verbal comprehension

Writing

Verbal naming

✓ Executive functions

Planning

Goal setting

Decision making

Information processing

Each session includes tasks which involve the four aforementioned categories. In specific, the COIs program implementation adheres to the following format:

36 weekly sessions/ year; 9 consecutive months (in wintertime)

1 hour/each session

Group intervention

Assessing the outcomes of cognitive oriented interventions

The ultimate goal of COIs is to enhance the global cognitive function and improve specific cognitive domains and social skills while mitigating behavioral disturbances. Measuring those outcomes is crucial in order to register and document improvements, decline or even stability of the participants’ pre-training cognitive capabilities. Thus, COIs’ effectiveness can be monitored and domains that need more training could be identified in order to shape the future training plan [4 , 35].

The outcome measures are usually administered after a pre-planned number of regular sessions. Analysis of the post-interventional scores in contrast to the baseline scores follows. The outcome measures and performance indicators could be categorized into different levels [22].

From the participants’ perspective they can include:

Improvement of symptoms.

Enhancement of day-to-day functional capacity.

Increased engagement in work or social activities.

Achievement of pre-planned goals.

Health related quality of life.

Self-reported satisfaction.

From the providers’ perspective they can include:

The overall time consumed from the initial assessment till enrollment to the sessions including, the time for sessions itself.

The overall average numbers of required sessions to accomplish improvement.

Satisfaction with service and information/education provided, involvement of family or significant others, etc.

Additionally, the assessment and analysis of outcomes could be described in the following broad categories: clinical disease progression, cognitive related impact, and psychosocial outcomes for persons with MCI or dementia.

The primary outcome measures could be summarized as follows:

Global cognitive function and clinical disease severity at the end of intervention (i.e., immediately post-intervention) measured by changes in scores of global cognition assessment tools, e.g., Mini-Mental State Examination (MMSE), Montreal Cognitive Assessment (MoCA), or any other standardized neuropsychological tests, and tools measuring clinical disease severity, e.g., Clinical Dementia Rating (CDR).

Global cognition and clinical disease severity in the short to medium term, where the measurement could be conducted in a follow-up assessment (e.g., MMSE, MoCA, CDR) between 3 and 12 months after the end of the intervention program.

The Secondary outcome measures could be:

Domain-specific cognitive functioning at the end of intervention. It could be measured by changes in scores of neuropsychological measures of: cognitive composite scores per domain, speed of processing, immediate memory, delayed memory, executive function, attention and working memory, verbal category fluency, language (naming), and verbal letter fluency.

Domain-specific cognitive status in the short to medium term. It could be measured by changes in scores of neuropsychological measures of different cognitive domains as mentioned above.

Meta-cognition (self-reported) at the end of intervention, e.g., Metacognitive Awareness Inventory (MAI) [36].

Mood (either self- or informant-reported) at the end of intervention and in the short-to-medium term (e.g., Geriatric Depression Scale).

Capacity for activity of daily living at the end of intervention and in the short to medium term, e.g., Basic Activities of Daily Living (BADL) and Instrumental Activities of Daily Living (IADL).

Behavioral and psychological symptoms of dementia (BPSD) at the end of intervention and in the short to medium term (Neuropsychiatric Inventory).

General health or quality of life via, e.g., SF-12 Health Survey, at the end of intervention and in the short to medium term.

Privacy policy

Protection of private information must be strictly applied according the local privacy policy and applicable laws in each facility conducting the COIs. Similarly, all interventions, data collection and results must be approved from the relevant ethical committee. Participants’ private information includes their identity, age, gender, contact data, residence, socioeconomic status, medical history, neuropsychologic and laboratory test results.

To protect personal information, the following rules should be applied:

All papers and hardcopy data should be locked securely.

Electronic hardware should be placed in a restricted area.

Computers and external devices should be encrypted.

Only relevant trained staff can collect and use personal data only as necessary and in accordance with the relevant privacy policy.

The core team of the COIs should respond to any questions or concerns regarding the privacy policy and carry full responsibility to protect this data according to the local policy and legislation. All data used for research purposes should be anonymous and follow the local policy of research projects and fulfil the regulations of Ethical Committee of Scientific Research, faculty of Medicine, Ain Shams University.

DISCUSSION

Status of brain health in Egypt and the Arab world

The Arab world is composed of 22 members of the Arab League, accounting for 422 million people. Life expectancy has increased by 15 years over the past three decades [37]. According to the Eastern Mediterranean Region office of the WHO there are six out of 20 countries served by that regional office that do not have a mental health legislation and two do not have a mental health policy [37]. Furthermore, the records for mental health spending are not available for most Arab countries and are not reported by governments. Only three Arab countries have provided an estimate: Qatar (1%), Egypt (less than 1%), and Palestine (2.5%) [38]. In general, the infrastructure for health care facilities and available services in many countries is totally insufficient for the growing needs [38].

The escalating burden of dementia and cognitive disabilities require a pooling of all available resources and possible interventions to alleviate its impact across the globe and also in Egypt and in the Arab world. Despite the different ethnic and demo-geographical characteristics among the Arab countries, aging remains the single most central risk factor for dementia [39]. In Egypt for instance, there is accelerated population aging and total number of Egyptian older adults is expected to reach 7.7 million in 2030 and approximately 15 million in 2050 [40].

In a recent systematic review [41] regarding the prevalence of cognitive impairment in the Arab world, it was found that the prevalence of dementia and AD in various Arab countries is 2–2.26% in Egypt [42], 3.34–7.4% in Lebanon [43], 5.2-3.85% in the KSA [44], 1.1% in Qatar [45], 4.6% in Tunisia [46], and 3.6% in the UAE [47]. On the other hand, dementia surveys in Egypt estimate a dementia prevalence ranging from 1.4% to 21.95% in older adults aged 60 years old and above [48]. Based on this limited data from epidemiological studies of neurodegenerative diseases, we believe that all those prevalence numbers are just the tip of the iceberg of an even larger percentage of older adults with cognitive impairment due to neurodegenerative diseases who are living in the community and do not receive screening and diagnosis for various reasons: misconception of cognitive impairment as a part of normal aging, lack of awareness, lack of community outreach programs and services, shortage of specialists and experts.

Gaps and areas where progress is needed

Apart from previously mentioned factors associated with cognitive impairment in the Arab world, it has been found that illiteracy and lack of education are strongly correlated to dementia prevalence with illiterate and uneducated people displaying higher dementia prevalence compared to educated people [41]. Increasing education levels among Arab older adults is difficult as adult illiteracy rates may have declined but still remain very high: 65 million adults are illiterate, almost two-thirds of them women [38].

Despite the high percentage of illiterate older adults in many Arabic speaking countries, the majority of translated tools or even original tasks for cognitive assessment and training are not adapted to illiterates. In addition to that, health care providers who are trained to provide cognitive assessment or rehabilitation services are understaffed and need much more attention and support from policymakers, stakeholders and health authorities [38]. In Egypt for instance, there is a massive shortage of all specialties dealing with mental health such as social workers, psychiatrists and psychologists or even geriatricians who are often the first to detect neurological or mental health issues in Egyptian older adults [49].

What gaps our practice guidelines will address now and what it can address in the future

The definitive goal of this article is to outline and promote an applicable clinical practice guideline for cognitive oriented interventions that suits the cultural and socioeconomic characteristics of Arabic speaking countries. Providing that, there is currently no cure for Alzheimer’s disease and other dementias, the majority of our efforts should be directed at enhancing cognitive reserve, promoting coping and adaptation strategies and improving quality of life for patients and caregivers. There is evidence that COIs have many important secondary outcomes like improvement of mood and quality of life and alleviation of psychosocial issues, in addition to their benefits for cognition [50].

In addition to the standard pencil and paper cognitive tasks, we highlighted alternatives that can suit illiterate older adults or older adults with limited education who may be uncomfortable with reading and writing such as computerized COIs that have already been tested, displaying applicability and efficacy in such populations.

Furthermore, by establishing these clinical guidelines in collaboration between Ain Shams University and a network of experts in Greece, we expect to maintain a high standard of quality and transfer of knowledge and a good model of practice which could be replicated not only in other areas in Egypt but also in any nearby country in our region.

Despite the growing evidence of effectiveness of COIs, at the best of our knowledge, there is no formal programs or services adopting COIs in their known forms like cognitive training or cognitive rehabilitation, in the Arab region apart from limited centers that perform cognitive stimulation sessions. Therefore, we believe that these clinical practice guidelines will be a stepping stone for establishing COIs in the Arab region through cross-national collaborations.

Our overall goals and how our practice guidelines affect people’s quality of life

Enhancement and training of cognitive domains like memory, attention, and executive functions and acquiring new learning strategies like mental imaging, reasoning, chunking, etc., can be transferred to daily functions translating to better handling of medications, shopping, telephone use, problem solving, etc., in comparison to the baseline status of participants. Despite the selective and focused conduction of COIs on specific cognitive domains, its impact and overall effect relates to further cognitive domains, global cognitive functioning, and performance in daily activities. For example, better control of working memory not only aids problem solving, but also spatial navigation [51]. Thus, older adults who participate in COIs maintain their functional independence and have better control over possible comorbidities. Furthermore, enhancing global cognitive performance and functional independence will subsequently motivate and encourage the participants to engage in community and outdoors activities which will improve their quality of life [52]. Therefore, our aim is not only to improve older adults’ cognition in our region but also to improve their daily functionality and quality of life and promote their social inclusion.

How our policy interacts with social changes (rising percentage of older adults/ rising percentage of smartphone and internet use in older adults/ lessening of stigma)

With greying of nations, and subsequent escalating needs for health care services and rising medical expenditure, it is crucial to raise public awareness regarding diseases such as dementia that disproportionately affect older adults. Additionally, health care workers caring for older adults, policy makers and stakeholders should embrace and support initiatives like ours which adopt non-pharmacological interventions and low-cost techniques that can have a significant impact on people with cognitive impairment and their families in terms of quality of life, functional independence, motivation, and decrease of overall health expenditure [53 –55]. Over the last decade, there was a surge of smartphone usage worldwide and also in the Arab world. In Egypt for instance, there are a least 27 million users of smartphones in 2019 [56]. In addition to the relative availability of Internet and increased smartphone usage by older adults, conduction of computerized COIs becomes more feasible and accessible and can be conducted in various settings.

Similarly, performing relevant pencil and paper exercises through telemedicine is another option which can be especially useful during the COVID-19 pandemic. Furthermore, telephone-administered questionnaires pre and post training to assess improvement can allow for remote assessment of cognitive status and disease progression. Seminars and interactive sessions can also be delivered online; they can focus on raising awareness about MCI and dementia thus allowing for better understanding and management of these diseases and on promoting training of cognitive functions by presenting successful examples of implementation of such programs. Thus, they are expected, in addition to any cognitive and psychosocial benefits for patients and caregivers, to decrease the stigma for these diseases in Arab societies [57, 58].

CONCLUSION

Dementia as a public health priority necessitates coordinated multi-disciplinary efforts to create preventive and supportive services. Cognitive training is a promising intervention that aims to preserve and restore intellectual abilities of older adults. The unique contribution of the current training program for Arabs and/or for Egyptians is the fact that it is tailored to the specific population’s needs, e.g., education level, cultural background, no previous experience with cognitive training. In contrast the majority of relevant literature focuses on training programs for older adults in western countries. Therefore, it is quite significant to create and adapt cognitive training material for each different population separately. This article serves as the operational guidelines for the Ain Shams Cognitive Training Lab. The detailed description of the mission and procedures of the laboratory will allow for more efficient use of resources and promote qualitative and quantitative assessment of the laboratory’s success and output. Given that there are no previous services in Arabic speaking populations, the current article can be assumed as a stepping stone for implementing innovative cognitive training services for Arab older adults, and for establishing new research pathways in this scientific area.

Footnotes

ACKNOWLEDGMENTS

Stelios Zygouris is an Atlantic Fellow for Equity in Brain Health at the Global Brain Health Institute (GBHI) and is supported with funding from GBHI and the Alzheimer’s Association (GBHI_ALZ-18-541600). Stelios Zygouris also received a scholarship by the Robert Bosch Foundation Stuttgart within the Graduate Program People with Dementia in General Hospitals, located at the Network Aging Research (NAR), Heidelberg University, Germany.

The authors would like to express their gratitude to all the specialists and stakeholders from Greece and Egypt who contributed to the creation of the Ain Shams Cognitive Training Lab clinical guidelines.

Author’s disclosures available online ().

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