Healthcare Models in Alzheimer's Disease

*Francisco Javier Garzón-Maldonado and María Dolores Martinez-Valle Torres*

## **Abstract**

Alzheimer's disease is currently a health care problem and in the future, when we have effective treatments, it will become a public health priority. Health systems should adapt to this situation. New technologies are tools that can improve healthcare and lower costs. The mobile phone with call o video call conference is going to suppose a radical change in the control of these patients. The telephone assistance to patient or relatives is very satisfactory for both due to the rapidity in the response to their problem and the comfort with which they are attended to. Also the health system reduces the costs of face-to-face consultation. In addition, this telemedicine could be applied for cognitive stimulation, with specific programs for each patient and for the follow-up of patients in their homes, delaying their entry into residences. The objective is to turn the patients and their caregiver into cotherapists together with the nurse and the physician, in the follow-up of Alzheimer's disease.

**Keywords:** healthcare, Alzheimer's disease

## **1. Alzheimer's disease: public health priority**

Alzheimer's disease (AD) is a degenerative disease produced by the accumulation of beta-amyloid and tau protein in the brain. From the clinical point of view, it is characterized by a prodromal phase with mild cognitive impairment, which is followed by the dementia phase [1].

Early dementia screening by a primary care physician should be completed once a patient or a knowledgeable informant has noticed decline in memory or difficulty [2]. Screening is not indicated at the general population level [3, 4], because currently there are no specific treatments to block the progression of cognitive decline in AD and other neurocognitive dementias. Is very important reasons from a patient's social and personal perspective that an early diagnosis is important as Alzheimer's disease is a terminal illness; you can minimize some of the effects if you understand the disease and know what to do [5]. Numerous screening tests are available for confirmed cognitive impairment, and laboratory tests and imaging studies should be obtained to rule out reversible etiologies. If patients meet diagnostic criteria for AD, clinicians should educate patients and caregivers on the expected course and help them complete advance directives. Troublesome behaviors should be managed with nonpharmacotherapeutic measures first. Drugs for improving cognition can be prescribed but do not prevent

disease progression [6]. Patients with advanced illness need end of life care (EoLC) with adequate pain control and palliative care interventions to shorten their hospital stay. Bamford et al. [7] take seven factors influencing good EoLC for people with dementia (**Table 1**). By incorporating stakeholders' perspectives and preferences when planning and developing coordinating interventions, we may increase the likelihood of successful implementation and patient benefits [8].

In 1984, the National Institute of Neurological and Communicative Disorders and Stroke and the Alzheimer's Disease and Related Disorders Association (NINCDS-ADRA) developed the first diagnostic criteria for Alzheimer's dementia [9]. In 2011, the National Institute of Aging/Alzheimer's Association (NIA-AA) revised these criteria including two new phases of the disease and introduced the utilization of biomarkers in research. Firstly, the introduction of the use of biomarkers would aim to detect pathological changes of AD before the onset of cognitive symptoms—"the preclinical phase" [10]. Secondly, the introduction of a mildly symptomatic but not dementia phase, which defines the onset of mild cognitive symptoms, was introduced. Clinical biomarkers such as deposition of Aβ seen on PET imaging were introduced to increase the clinical likelihood of diagnosis of AD on the presentation of mild cognitive impairment (MCI) however, these are yet to be utilized for routine clinical use [11]. In 2014, the International Working Group updated their clinical entity of prodromal AD by introducing improved biomarkers for AD and defining a criteria for atypical and non-AD dementia [12]. And finally, the diagnostic standard for dementia is the *Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition* (*DSM-5*). *DSM-5* recognizes two cognitive syndromes: major neurocognitive impairment and mild neurocognitive impairment. The diagnosis of major neurocognitive impairment requires objective cognitive

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*Healthcare Models in Alzheimer's Disease DOI: http://dx.doi.org/10.5772/intechopen.84630*

improved well-being for caregivers.

mine what needs should be provided and financed.

**2. Needs and demands socio-health of the patients**

decline that is severe enough to interfere with activities of daily living and is not caused by delirium or another neurologic, medical, or psychiatric disorder [13]. The socio-health needs of dementias are similar, regardless of their etiology, although there are some peculiarities that characterize each of them like hallucinations in dementia by Lewy bodies, behavioral problems in frontotemporal dementia, and social and emotional level of loneliness, which is higher in Korsakoff syndrome [14]. This social and emotional loneliness is more frequent and earlier

In 2010, annual healthcare costs attributable to dementia were between \$41,000 and \$56,000 per person [16]. About three quarters of these costs are from institutional and home-based long-term care. Although these estimates place a monetary value on informal care provided by family members and friends, they do not account for the substantial non-monetary costs to caregivers in terms of negative consequences to social, physical, and psychological well-being [17]. If we can delay dependency and institutionalization, by even a couple of years, it has the potential to save hundreds of billions in direct healthcare costs and even more in terms of

The AD from the clinical point of view is today a public health problem recognized by the WHO [18], because it is a very frequent disease. It is estimated that 46.8 million people live with dementia in the world in 2015. This number is expected to double every 20 years, reaching 74.7 million in 2030 and 131.5 million in 2050. This translates to approximately two new cases per 1000 people age 65–74, 13 new cases per 1000 people age 75–84, and 39 new cases per 1000 people age 85 and older, and the greatest risk factor by far is aging [19–21]. It is also a disease with great impact on the health of the patient, who becomes totally dependent, and the family environment, for their involvement in the care from the physical and psychological point of view. On average, a person with Alzheimer's disease will spend more years (40% of the total number of years with Alzheimer's) in the most severe stage of the disease than in any other stages. However, currently, and from an epidemiological point of view, it is not a priority in health, given that although we have a screening test for the population, we do not have a drug with the potential to significantly modify the natural course of the disease. The quality of care received by a person with dementia positively is critical to the physical and mental health of the person with dementia [22]. It is a challenge for socio-health systems to deter-

Dementia is a chronic and progressive disease, with an average survival of more

than 10 years. Patient and the family environment with this disease go through different phases that have different needs and demands. The needs are determined by the interventions that have shown efficacy through scientific studies, while the demands are determined mainly by sociocultural factors. A clear example of this is that new generations accept new technologies much better than previous generations [23]. Any socio-health system should try to provide its patients and caregivers with those needs and demands as efficiently as possible (actions with studies that demonstrate their effectiveness and that are viable from the economic point of view). In general, caregivers claim and request less formal attention than in other pathologies [24]. Each patient with dementia and its family have different characteristics and needs that require individual attention [25]. The NICE guide recommends periodic evaluation and caregiver programs, including telephone or Internet support. Such supportive interventions could be effective both preventive

income in a residence of the patients with Korsakoff syndrome [15].

#### **Table 1.**

*Summary of the seven factors influencing good EoLC for people with dementia.*

#### *Healthcare Models in Alzheimer's Disease DOI: http://dx.doi.org/10.5772/intechopen.84630*

*Redirecting Alzheimer Strategy - Tracing Memory Loss to Self Pathology*

disease progression [6]. Patients with advanced illness need end of life care (EoLC) with adequate pain control and palliative care interventions to shorten their hospital stay. Bamford et al. [7] take seven factors influencing good EoLC for people with dementia (**Table 1**). By incorporating stakeholders' perspectives and preferences when planning and developing coordinating interventions, we may increase the likelihood of successful implementation and patient benefits [8]. In 1984, the National Institute of Neurological and Communicative Disorders

and Stroke and the Alzheimer's Disease and Related Disorders Association

utilization of biomarkers in research. Firstly, the introduction of the use

(NINCDS-ADRA) developed the first diagnostic criteria for Alzheimer's dementia [9]. In 2011, the National Institute of Aging/Alzheimer's Association (NIA-AA) revised these criteria including two new phases of the disease and introduced the

of biomarkers would aim to detect pathological changes of AD before the onset of cognitive symptoms—"the preclinical phase" [10]. Secondly, the introduction of a mildly symptomatic but not dementia phase, which defines the onset of mild cognitive symptoms, was introduced. Clinical biomarkers such as deposition of Aβ seen on PET imaging were introduced to increase the clinical likelihood of diagnosis of AD on the presentation of mild cognitive impairment (MCI) however, these are yet to be utilized for routine clinical use [11]. In 2014, the International Working Group updated their clinical entity of prodromal AD by introducing improved biomarkers for AD and defining a criteria for atypical and non-AD dementia [12]. And finally, the diagnostic standard for dementia is the *Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition* (*DSM-5*). *DSM-5* recognizes two cognitive syndromes: major neurocognitive impairment and mild neurocognitive impairment. The diagnosis of major neurocognitive impairment requires objective cognitive

**94**

**Table 1.**

*Summary of the seven factors influencing good EoLC for people with dementia.*

decline that is severe enough to interfere with activities of daily living and is not caused by delirium or another neurologic, medical, or psychiatric disorder [13].

The socio-health needs of dementias are similar, regardless of their etiology, although there are some peculiarities that characterize each of them like hallucinations in dementia by Lewy bodies, behavioral problems in frontotemporal dementia, and social and emotional level of loneliness, which is higher in Korsakoff syndrome [14]. This social and emotional loneliness is more frequent and earlier income in a residence of the patients with Korsakoff syndrome [15].

In 2010, annual healthcare costs attributable to dementia were between \$41,000 and \$56,000 per person [16]. About three quarters of these costs are from institutional and home-based long-term care. Although these estimates place a monetary value on informal care provided by family members and friends, they do not account for the substantial non-monetary costs to caregivers in terms of negative consequences to social, physical, and psychological well-being [17]. If we can delay dependency and institutionalization, by even a couple of years, it has the potential to save hundreds of billions in direct healthcare costs and even more in terms of improved well-being for caregivers.

The AD from the clinical point of view is today a public health problem recognized by the WHO [18], because it is a very frequent disease. It is estimated that 46.8 million people live with dementia in the world in 2015. This number is expected to double every 20 years, reaching 74.7 million in 2030 and 131.5 million in 2050. This translates to approximately two new cases per 1000 people age 65–74, 13 new cases per 1000 people age 75–84, and 39 new cases per 1000 people age 85 and older, and the greatest risk factor by far is aging [19–21]. It is also a disease with great impact on the health of the patient, who becomes totally dependent, and the family environment, for their involvement in the care from the physical and psychological point of view. On average, a person with Alzheimer's disease will spend more years (40% of the total number of years with Alzheimer's) in the most severe stage of the disease than in any other stages. However, currently, and from an epidemiological point of view, it is not a priority in health, given that although we have a screening test for the population, we do not have a drug with the potential to significantly modify the natural course of the disease. The quality of care received by a person with dementia positively is critical to the physical and mental health of the person with dementia [22]. It is a challenge for socio-health systems to determine what needs should be provided and financed.

## **2. Needs and demands socio-health of the patients**

Dementia is a chronic and progressive disease, with an average survival of more than 10 years. Patient and the family environment with this disease go through different phases that have different needs and demands. The needs are determined by the interventions that have shown efficacy through scientific studies, while the demands are determined mainly by sociocultural factors. A clear example of this is that new generations accept new technologies much better than previous generations [23]. Any socio-health system should try to provide its patients and caregivers with those needs and demands as efficiently as possible (actions with studies that demonstrate their effectiveness and that are viable from the economic point of view). In general, caregivers claim and request less formal attention than in other pathologies [24]. Each patient with dementia and its family have different characteristics and needs that require individual attention [25]. The NICE guide recommends periodic evaluation and caregiver programs, including telephone or Internet support. Such supportive interventions could be effective both preventive

and therapeutic of the consequences of the burden [26]. The unmet needs may be higher in caregivers with lower education and individuals with early-stage dementia and low-income. The identifying and treating symptoms of depression in patients with dementia and caregivers are necessary for them to know their other unmet needs [27].

Socio-sanitary assistance to dementia has the highest degree of complexity, comparable to multi-pathological patients, according to the categorization of chronic patients adopted by the Department of Health of the United Kingdom, the approach of the Kaiser Permanente. These patients require a comprehensive and continuous treatment, which must be based on the coordination of healthcare and social assistance, as well as between the different levels of care (primary care and specialized care). And more specifically in health care, the link between the specialist physician and the case management nurse of the unit with primary care is key, so that this assistance has a versatility that allows ensuring adequate care more appropriate [28].

The personalized care plan focuses on the patient with the disease but involves the entire family environment of the patient, understanding this environment widely, including friends and volunteers, among others.

The aim of the personalized care plan are: (1) promotion of the autonomy of the patient with activation and self-management of care and improvement of their quality of life; (2) pharmacotherapeutic optimization at all times during the disease; (3) prevent complications, cognitive and functional impairment, and ultimately dependence; (4) integral assessment of the patient from a biomedical or clinical, psychological, functional and socio-family point of view; (5) establishment of a prognosis in each phase of the disease; (6) establish advance planning of decisions.

The needs or demands of patients and caregivers with dementia are typified and all socio-health systems establish different socio-sanitary responses to similar pathologies [26, 29, 30]. However, this assistance must be individualized in each specific user always, considering it as a biopsychosocial organism, with its particular desires and preferences. Therefore, assistance to users with AD must be protocolized in a multidisciplinary way and provided individually to each patient and caregiver.

In spite of the increase of the income in residences in the last years, the family environment is the therapeutic reference that is more effective, efficient, and very difficult to substitute for the emotional implications that it has. And above all, it is preferred by most patients with dementia [31–33]. The competence of caregivers is essential for the life quality of patient with dementia, and multicomponent interventions may be appropriate for nurses to practice [34].

## **3. Social sanitary assistance management tools**

We must overcome health care in the terms of first-visit patients and regulated reviews (at 3, 6, 9, or 12 months) and use management tools that use information and communication technologies to satisfy the needs and demands, avoiding referrals, appointments, and bureaucratic reviews.

Among the emerging management tools in recent years that are most useful are:


**97**

*Healthcare Models in Alzheimer's Disease DOI: http://dx.doi.org/10.5772/intechopen.84630*

which social-health assistance was established.

and volunteering to monitor users [38, 39].

mum duration of treatments, among others.

graphic challenge and allow "aging at home."

caregivers to improve their overload, mainly emotional.

allow a better assistance to patients and caregivers.

**4. Health model units of cognitive disorder and conduct**

health administration [40].

family. The liaison nurse of the dementia unit, within a neurology service, was the axis around which social-health assistance was established. In our study [37], the case management nurse of the dementia unit, was the axis around

3.Coordination with de Alzheimer's association using their ability to bring together the patient and the family environment, using their infrastructures

4.Digital clinical history: access to the digital clinical history instantly, from any terminal of the health system (both primary care and specialized care), allows to efficiently solve healthcare problems in relation to the patient without the inconvenience of having to travel or the delay of having to wait for an appointment.

5.Prescription on line: also accessible from any terminal of the health system. It allows to see the medication prescribed by any doctor to the patient. It has the potential to establish alerts, system of interactions and allergies, and maxi-

6.Telecare: At the beginning it arose to solve the problems of accessibility in remote areas and sanitary underfunded, allowed accessibility by spacing distances. Subsequently, it was considered that telemedicine contributed essential quality by facilitating the continuity of care, and recently it is considered an efficient and essential tool in the organization of health care. The application of technology in health has become a strategic objective to address the demo-

The modalities of telecare can be very diverse, and the telemedicine projects of attention to users with dementia performed include [1] support for patients so that they can continue to live independently; [2] support services for informal caregivers through "online" training, video conferencing with professionals, telealarm with videoconference, and cognitive stimulation; [3] networks for patient and caregivers; [4] monitoring of the state of the patient, personalized intervention, and adaptive care; [5] platform that integrates smart home technologies, with sensors and interoperability with professionals and institutions; and [6] computer programs to

The main problems of this technology are the risks of privacy in relation to data protection and health care. Other issues technological aspects that are solved with the progress of technology: complexity of use, cost of acquisition and technical failures.

These tools used by each socio-health system according to their possibilities

Dementia is the paradigm of disease that practically in its entirety is diagnosed and/or followed by the national health systems (public and free). It is a disease that does not start abruptly and for which medicines are expensive. Patient assistance involves the neurologists and other specialists who directly assist patients with neurological problems. The growing complexity of neurology in general, as a specialty, with

The main resistance for its establishment is given by the three protagonists of the assistance: patients and caregivers, professionals, and mainly the managers of the

*Redirecting Alzheimer Strategy - Tracing Memory Loss to Self Pathology*

widely, including friends and volunteers, among others.

ventions may be appropriate for nurses to practice [34].

**3. Social sanitary assistance management tools**

rals, appointments, and bureaucratic reviews.

unmet needs [27].

and therapeutic of the consequences of the burden [26]. The unmet needs may be higher in caregivers with lower education and individuals with early-stage dementia and low-income. The identifying and treating symptoms of depression in patients with dementia and caregivers are necessary for them to know their other

Socio-sanitary assistance to dementia has the highest degree of complexity, comparable to multi-pathological patients, according to the categorization of chronic patients adopted by the Department of Health of the United Kingdom, the approach of the Kaiser Permanente. These patients require a comprehensive and continuous treatment, which must be based on the coordination of healthcare and social assistance, as well as between the different levels of care (primary care and specialized care). And more specifically in health care, the link between the specialist physician and the case management nurse of the unit with primary care is key, so that this assistance has a versatility that allows ensuring adequate care more appropriate [28]. The personalized care plan focuses on the patient with the disease but involves the entire family environment of the patient, understanding this environment

The aim of the personalized care plan are: (1) promotion of the autonomy of the patient with activation and self-management of care and improvement of their quality of life; (2) pharmacotherapeutic optimization at all times during the disease; (3) prevent complications, cognitive and functional impairment, and ultimately dependence; (4) integral assessment of the patient from a biomedical or clinical, psychological, functional and socio-family point of view; (5) establishment of a prognosis in each phase of the disease; (6) establish advance planning of decisions. The needs or demands of patients and caregivers with dementia are typified and all socio-health systems establish different socio-sanitary responses to similar pathologies [26, 29, 30]. However, this assistance must be individualized in each specific user always, considering it as a biopsychosocial organism, with its particular desires and preferences. Therefore, assistance to users with AD must be protocolized in a multidisciplinary way and provided individually to each patient and caregiver. In spite of the increase of the income in residences in the last years, the family environment is the therapeutic reference that is more effective, efficient, and very difficult to substitute for the emotional implications that it has. And above all, it is preferred by most patients with dementia [31–33]. The competence of caregivers is essential for the life quality of patient with dementia, and multicomponent inter-

We must overcome health care in the terms of first-visit patients and regulated reviews (at 3, 6, 9, or 12 months) and use management tools that use information and communication technologies to satisfy the needs and demands, avoiding refer-

Among the emerging management tools in recent years that are most useful are:

1.Caregivers: we have to pay much more attention to the caregiver or caregivers and use them as cotherapists, throughout the process, especially in the final

2.Case management nurse [36, 37]: together with the medical specialist or general practitioner who is, usually, the axis around which health care is provided. The case management nurse coordinates all the actions of the patient and their

**96**

phase [35].

family. The liaison nurse of the dementia unit, within a neurology service, was the axis around which social-health assistance was established. In our study [37], the case management nurse of the dementia unit, was the axis around which social-health assistance was established.


The modalities of telecare can be very diverse, and the telemedicine projects of attention to users with dementia performed include [1] support for patients so that they can continue to live independently; [2] support services for informal caregivers through "online" training, video conferencing with professionals, telealarm with videoconference, and cognitive stimulation; [3] networks for patient and caregivers; [4] monitoring of the state of the patient, personalized intervention, and adaptive care; [5] platform that integrates smart home technologies, with sensors and interoperability with professionals and institutions; and [6] computer programs to caregivers to improve their overload, mainly emotional.

The main problems of this technology are the risks of privacy in relation to data protection and health care. Other issues technological aspects that are solved with the progress of technology: complexity of use, cost of acquisition and technical failures.

The main resistance for its establishment is given by the three protagonists of the assistance: patients and caregivers, professionals, and mainly the managers of the health administration [40].

These tools used by each socio-health system according to their possibilities allow a better assistance to patients and caregivers.
