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1. ALZCARE SYSTEM 2020-2021
Dept of ECE. GSKSJTI Bangalore 1
CHAPTER 1
INTRODUCTION TO ALZCARE SYSTEM
1.1 INTRODUCTION
Dementia is not a specific disease but rather an overall term that describes a wide range
of symptoms associated with a decline in memory or other thinking skills severe enough
to reduce a person's ability to perform everyday activities. Alzheimer's disease accounts
for 60 - 80% of cases and vascular dementia, which occurs after a stroke, is the second
most common dementia type.
People with dementia and their families should receive ongoing care support
throughout the disease which is more likely to produce significant improvements in the
quality of life as well as potential reductions in secondary complications and the
associated costs. An integrated care pathway for dementia provides guidance about
effective services and interventions that deliver outcomes for people living with
dementia and their careers. Dementia Care Pathways describe all actions and guidelines
needed from the early detection and diagnosis of dementia, provision in time of all health
care services and extend upto the support needed during the everyday life of the patients.
However, the healthcare provided to people living with dementia is far from being
optimal. Detection of the disease is usually delayed and is performed when the disease
has advanced. Also, clinical assessments usually focus on a person’s physical health
needs, with less consideration given to mental health, emotional and social needs [3].
Moreover, patients living with dementia and their caregivers must receive
recommendations from experts for environmental interventions and also be provided
with assistive technologies to make life easier and increase safety especially for people
with severe memory and orientation problems.
The ALZCARE system aims at increasing the standard of healthcare offered to the
elderly population affected by dementia in the cross-border area of Albania and Greece.
The system supports the patients, their caregivers and physicians of different
specializations or with varying degree of experience so as they can offer effective
screening, diagnostic and treating services through the use of ICT. In this direction, the
ALZCARE system developed a mobile system with a suite of screening tests, a state-of-
the-art Clinical Information System incorporating the best practices and the knowledge
of expert neurologists and a Global Positioning System (GPS).

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LITERATURE SURVEY
Alzheimer’s disease association, there are more than 5 million people with Alzheimer’s
disease in the United States and 35 million worldwide. These numbers are expected to
skyrocket to a projected 13.8 million and 115 million, respectively, by mid-century. The
potential of earlier diagnosis and the development of better treatments may significantly
change the experience of Alzheimer’s for millions of people. In the meantime, the cost of
care will rise dramatically. These factors will provide unprecedented challenges and
opportunities for the Alzheimer’s disease association.
Never has the case for accelerated progress been more urgent. In theUnitedStates,10,000
baby boomers turn 65 each day, and the 85- plus population is one of our fastest-growing
segments. While Alzheimer’s costs $259 billion in the United States alone, this number
will increase to $1.2 trillion by 2050 unless we find a way to prevent, treat or delay the
disease. The already high cost of Alzheimer’s will continue to rise as the baby boomers
age.
The Alzheimer’s Association is the leading organization in the world in Alzheimer’s
advocacy, research and support. To enhance and strengthen this leadership position, as well
as expand the depth, breadth and pace of the Alzheimer’s movement, we have committed.
In 2012, the Association undertook a strategic assessment process to look at the external
environmentandinternalcapacityandpotentialinordertodeterminewhatisnecessaryto change
the trajectory of Alzheimer’s and to support people living with the disease today and in the
future As a result of this collaborative, organization wide-work,a bold, 10-year vision
(FY2015-FY2024) for care and support and for research was created.[1]
Dementia: a public health priority, this has been jointly developed by WHO and
Alzheimer's Disease International. The purpose of this report is to raise awareness of
dementia as a public health priority, to articulate a public health approach and to advocate
for action at international and national levels.
Dementia is a syndrome that affects memory, thinking, behaviour and ability to perform
everyday activities. The number of people living with dementia worldwide is currently
estimated at 35.6 million.

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This number will double by 2030 and more than triple by 2050. Dementia is overwhelming
not only for the people who have it, but also for their caregivers and families. There is lack
of awareness and understanding of dementia in most countries, resulting in stigmatization,
barriers to diagnosis and care, and impacting caregivers, families and societies physically,
psychologically and economically.
Interoperability: Interoperability has been part of national e Health strategies for many
years. Initially, the focus was on technical interoperability and frequently limited to the in-
hospital setting. Nowadays, semantic, organizational, legal interoperability recognized as
equally important as attention shifts toward patient empowerment and integrated care.
Interoperability standards are technical specifications for the exchange, use, and shared
understanding of health data from individuals or populations safely and at a lower cost.
In 2010, the Memorandum of Understanding between the European Commission and the
United States Department of Health recognized cooperation to advance eHealth/HIT as a
driver for improved health and health care, economic growth, and innovation. The MoU
highlighted HIT standards as a shared goal: “Development of internationally recognized
and utilized interoperability standards and interoperability implementation specifications
for electronic health record systems that meet high standards for security and privacy
protection.” [1]. The Meaningful use program that has revolutionized healthcare in the US
cites standards, IGs, certification criteria for EHR technology and provides incentives for
its use, cites HL7 CDA. There has always been tension between general purpose and highly
constrained standards or IGs in eHealth.
The less constrained a standard is, the more susceptible it is to local extensions, and
inconsistent implementation. The proliferation of various types of templates does not make
things any easier and the need for implementation guidance and pre-production
interoperability testing is only partly met by IHE profiles and connections. Our early
experience with Trillium Bridge confirms that a lot of ground work is needed to lower cost
of advancing interoperability in the widening space covered by eHealth. Only part of the
effort to meet clinical needs and enable patient safety and high standards of care is technical.
Work with professional societies is needed to develop a shared language of clinical
attributes and educate the workforce

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An infrastructure needs to be set up to facilitate service provision including translation,
mapping and trans-coding of terminologies, supported by a legal framework that acts as an
enabler rather than inhibitor for cross-border care addressing security and privacy.
According to the PS Guideline “semantic mapping is a shared cross-border responsibility
between respective Member States managed at the cross-border level and is part of its trust
building framework.” Last but not least, there are cultural differences to be addressed with
education, training, awareness raising and patient empowerment. For the next steps,
Trillium Bridge aims to define interoperability assets that are well-understood and fit for
the purpose of validating the key use cases of presented a PS in the patient’s or the
provider’s device transformed and trans coded in the language and format of the country
of treatment. Findings of the gap analysis, interoperability assets and the results of the
validation exercise will provide practical input to the feasibility study of Trillium Bridge,
which aims to lower standards development costs accelerating convergence towards global
standards. If successful, Trillium Bridge will be pivotal in lowering costs/barriers of
transatlantic business engagement, but more importantly in supporting the fundamental
right of citizens to their health information.

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CHAPTER 2
THE ALZCARE SYSTEM
2.1 SystemDesign
The system was designed following first a user requirement collection and analysis phase.
This was performed through interviews and questionnaires with patients, caregivers, GPs
and neurologists of both Greece and Albania (namely prefectures of Ioannina, Sarande and
Gjirokaster). Different questionnaires were prepared for each group of users. In total, we
received and analyzed the response of 15 patients and care givers and 30 physicians.
The system consists of the Dementia Management Information System and the Patient
Tracking System as depicted in Fig. 2.1.
Figure 2.1. The overall architecture of the ALZCARE system and the interaction with the users.
The Dementia Management System is further composed of the Screening Tests Mobile
System and the Clinical Information System. The first is installed on tablet computers and
contains brief tests and questionnaires to be used on- site even by non-physician health
professionals in community-based social and care services or in primary care settings for
screening senior people at risk of dementia. Based on the test results, citizens may be
referred to an neurologist for standard clinical examination. The Clinical Information
System is indented to be used by neurologists in clinical settings for registering new or
already diagnosed patients, perform clinical, quality of life (QoL) and cognitive
examinations, overview previous and current treatments and also make recommendations
to patients and their careers.

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As regards the Patient Tracking System, it is intended for patients who tend to wander
around unintentionally and most of the times cannot recall any contact person or
information on how to return back home. This behavior is most prominent in the later stages
of dementia as the disease progresses and the severity of its symptoms affect the patients’
quality of life. The GPS-tracking ability is optional for the overall system and the supervising
clinician can decide whether to recommend patient tracking by evaluating the current
patient’s medical condition and clinical background. The user of this system is the patient
who carries a GPS device, the family members or the caregiver who have access to the
system and the ALZCARE administrator.
2.2 Screening Tests Mobile System
The Screening Tests Mobile System was implemented for tablets (Android 4.4 API / Java,
Database: Realm, Design Patterns: Repository Pattern, Single Activity/Multiple
Fragments, 2 Tier Layer Design) supporting export format to Encrypted HL7 FHIR XML
and security with custom encrypted credentials access.
It is available in 3 languages: Greek, Albanian and English.
Figure 2.2. Screenshot of an instance of the 3MS test of the Screening Tests Mobile System

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The system contains QoL and functionality questionnaires and cognitive tests specially
selected as a screening measure for MCI and dementia in the elderly. The tests that were
chosen by the neurologists are: the General Practitioner Assessment of Cognition (GPCOG)
[4], the Modified Mini-Mental State (3MS) test [5] and the Clock Drawing test [6]. The tests
are administered by the user (healthcare professional, such as a nurse, psychologist, social
worker, physician, etc.) after specific training. The estimated time for the completion of all
the three tests is 20-30 min.
The results of each test are presented at the end of the test and overall scores at the end of
the testing session. People with low scores, below cut-off values suggested bythe literature,
are advised to visit a specialized neurologist.
2.2 Clinical InformationSystem
The Clinical Information system is intended to be used in clinical settings. It is
implemented as a web-based application:
 Development Platform: ASP.Net MVC 5, C# 4.6, HTML5, JavaScript, CSS,
Bootstrap, Ajax, Entity Framework, Code-First Database Design, Data Migrations
Framework.
 Database: MySQL
 DesignPatterns:RepositoryPattern, MVC, 3 Tier Layer Design (Client/Server/Storage),
Responsive Design.
 Security: Encrypted Credentials Access based on Microsoft. Identity Framework, Role
based Access Control Restrictions, Server-Side Data Sanitation/Verification.
The system is an Electronic Health Record specific for dementia but enhanced with a
structure and sequence of actions (based on international guidelines) that guides less
experienced physicians to perform clinical, QoL and cognitive examinations, specify
drug treatment and make suggestions to patients and careers.

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Figure 2.3. Screenshot of the Neurological Evaluation Page of the Clinical Information System
(magnified for visualization purposes).
The Clinical Information System follows the HL7 standard, uses the epSOS patient
summary [7] and the International Classification of Disease (ICD) 11 for medical history. It
also collects laboratory test results and radiology images and for a new visit, it organizes the
examinations to be performed as neurological, other clinical (lifestyle and medical history),
provides QoL questionnaire (using the EQ- 5D Health QoL Questionnaire) [8] and
cognitive test (Mini Mental) [5]. It also registers new treatments or modifications of dosage
regimen using a pre- defined list of dementia- related drugs. Finally, it prompts the physician
to make recommendations to the patient and caregiver as regards psychiatric evaluation,
psychology support, physiotherapy, environmental modifications, assistive technology and
patient tracking ability.
2.3 Patient Tracking System
A necessary functionality that complements an integrated dementia patient management
system is the ability to track patients in later stages of the disease who tend to wander
around unintentionally and are susceptible to get lost, especially those who live alone in
geographically remote areas with limited family support. GPS-based systems have been
proven an efficient solution for elderly citizens [9].

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After the analysis of the user requirements, it was found that the system’s
functionality must include:
a) Notification of the family members or caregivers in case the patient is in danger with
the use of a panic/SOS button.
b) The specification of a “safe zone” around the house (setting geo- fences) to send
alerts when crossing in and out.
c) Ability to make direct calls between the patient and the family members and sending
of SMS (phone call capabilities). Desired functionality features are the detection of falls,
the real time visualization of the tracking route for the careers on mobile phones, speed
alerts, temperature alerts, etc. Regarding the features of tracking device, most replies
mentioned the need for small size and weight, waterproofness, long battery autonomy but
no specific answers were given for its shape and design (form factor of a watch, mobile
phone, etc.). From the clinician’s perspective, the dementia patient tracking can provide
useful information to complement clinical evaluation regarding the current patient’s
health and mental status and response to treatment by evaluating tendency to wander
aimlessly, disorientation, panicking,etc.
Figure 2.4. Diagram of the Patient Tracking System architecture.

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To enable all the above functionality and allow faster communication for data transfer, a
combination of GSM-GPS solution was selected, as it also allows the device to stay
connected in places where the GPS signal is weak or lost, such as inside buildings.
For the proposed system, the patient’s contact person(s) has essentially the role of alerts
handler, having to immediately respond when notified, while the clinician can be
considered as the data/alerts evaluator, as an indication of patient’s behavior in everyday
life activities. Some practical limitations that were taken into consideration is the device’s
ability to handle 1-2 weeks of continuous use with every battery charge to increase
acceptability. In addition, it is common for dementia patients not to recall their obligation
to recharge the device themselves on a daily basis and this task may be required to be
performed by a close visiting relative. Finally, we specified that the tracking device should
offer a solution to mount it on the patient (e.g. around neck SOS buttons, watches, waist
case, etc.) to ensure that she/he will always carry it around to track his location.

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CHAPTER 5
RESULTS AND DISCUSSION
3.1 SYSTEM EVALUATION &DEPLOYMENT
The system has undergone field testing and is currently in the evaluation phase. The
Screening Tests Mobile System is being used to screen citizens at risk who visit community-
based social care and primary health settings (e.g. Health Centers) of the cross-border
regions of the two countries. Although we use the cut-off values for each test as proposed
by the literature, the system is now further evaluated on healthy subjects and patients
already diagnosed with MCI and dementia to investigate also its performance as a whole
(combination of three tests). Additional on-going evaluation is performed by following up
the citizens with low scores who are referred to neurologists and receive a formal clinical
diagnosis.
The Clinical Information System has been incorporated in the clinical routine of the
Hospitals of the participating regions. The physicians will assess its usability and efficiency
in the clinical management of their patients and compare it with their current practice.
Finally, the Patient Tracking System will be applied to 70 patients fulfilling the criteria set
by the clinicians. The Tracking System will be evaluated as regards the generation of alerts
and their communication to the contact persons.
3.2 DISCUSSION
The ALZCARE system aspires to increase the standard of healthcare delivery to the elderly
population affected by dementia. Its unique feature is that it integrates services,
international standards and clinical protocols in such a way that physicians of varying
degree of experience can effectively use it in their clinical routine. Although it is designed
to meet the needs of citizens and professionals in the cross-border area of Albania and
Greece. The ALZCARE system also promotes the cross-border cooperation of physicians
so as to ensure that effective services are delivered to all citizens. Towards this goal, we
developed a state- of-the-art dementia management system incorporating the best practices
and the knowledge of expert neurologists to improve the infrastructures and services of
regional primary care settings and Hospitals of the participating countries.

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social and health professionals who are less experienced or non-specialized in the screening
of the elderly population at risk of dementia, mainly working in non-urban areas. Its purpose
is to provide indications of referring citizens with low scores to neurologists for further
diagnosis.
The Clinical Information System is a Dementia EHR which efficiently organizes how the
information needs to be collected so as it can guide less experienced neurologists in
regional Hospitals in such a way that all patients can receive common high-standard care
services.
Finally, we implemented a wearable patient location tracking system for notifying
caregivers of alerting conditions. The tracking system is also enhanced with additional
features that can establish an emergency communication channel with the disoriented/lost
patients by incorporating fall detection and mobile phone functionalities. Neurologists
can also be benefited from the tracking system since a summary of events for each patient
is generated and automatically presented within the Clinical Information System as an
indicator of the health and mental deterioration of the patient supplementing thus the
overall clinical status.

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CONCLUSION
We presented the ALZCARE system aiming to support social and health professionals in
the screening, diagnosis, treatment and follow-up of elderly citizens at risk or already
suffering from MCI and dementia. The system was designed and implemented with the
recommended service delivery model for providing dementia care and tailored to the needs
of mainly the cross-border regions of Greece and Albania. The system is now being
deployed in real life. The analysis of the results is expected to a) reveal the prevalence of
the disease in the participating regions and b) show to what extent a state-of-the-art Clinical
Information System endowed with international guidelines can guide less experienced
neurologists in regional Hospitals and ultimately be incorporated in their clinical practice.