Health Literacy and Care Ability for Informal Caregivers of Dementia Patients for Social Inclusion

Population aging affects the entire national and global community is a physiological phenomenon that increasingly attracts the attention of scholars and researchers, who are considering interventions and strategies to ensure that the increasingly elderly population has a better quality of life, along with that of their caregivers. Research has shown that although aging is inevitable, it is influential in its course. There are many theories of aging, and the mechanisms are multifactorial: we distinguish intrinsic mechanisms such as genetic factors, telomerase, oxidative stress, and extrinsic mechanisms influenced particularly of lifestyle and environmental factors. The concept of “normal” aging has been replaced by that of diseasefree or optimal aging pursued through ongoing current medical research that is based on understanding the elements that allow aging with minimal disability by acting on extrinsic factors to minimize risk.

All physiological systems are subject to aging at a variable rate and with varying consequences and with particular characteristics depending on the organ. Therefore, it appears increasingly important to implement preventive hygienic-dietetic measures to cope with the inevitability of chronic diseases [1], currently about one in two elderly people suffers from at least one serious chronic disease or has multi-chronicity, with rates among the over- 80s of 59.0% and 64.0%, respectively [2].

The population in Italy and around the world is seeing a steady increase in the number of elderly people due to advances in medicine and thus increased life expectancy. Among the various consequences of this major sociodemographic transformation is an increase in the incidence of chronicdegenerative diseases such as dementias, which are considered the leading cause of disability in old age [3]. Currently, there are an estimated 47 million people in the world with this disease, and it is expected to reach about 76 million by 2030 [4]. Dementia is a syndrome characterized by progressive degeneration of cognitive function such that normal activities and relationships of daily living are impaired [5].

People with dementia require care and assistance mainly borne by the families of the sufferer themselves (in Italy, 80% of people with dementia are cared for at home by their families) [6]. Families are considered to be the main players in the management of these sufferers, whose disease outlook is estimated to be long-term. The caregiver takes care of the practical aspects such as accompanying their relative or friend to the hospital, buying medicine, inquiring about the side effects of treatment, and completing paperwork.

The figure of the caregiver should in no way be underestimated: if he or she is invested with excessive feelings of inadequacy, instead of proving to be a resource for the sick person, he or she may end up being an additional aggravating factor in an already difficult context. In order to be able to carry out his or her task in the best possible way, the caregiver must be adequately educated and informed by the health care personnel treating the patient, so that he or she can cope with daily care and recognize the appearance of any complications. It is therefore very important that there is an adequate network of services to support the patients but also the family members themselves, aimed at reducing the latter’s stress and postponing possible institutionalization.

This survey has as its primary objective to turn the spotlight on the emotional and psychophysical burden of the caregiver of the patient with dementia by measuring the different variables that condition and influence their psychophysical health and to identify the most effective support strategies in order to ensure the ideal conditions for establishing the care relationship and to emphasize how the nurse, through targeted interventions, can assume a key role in reducing the stress level of family members, promote their well-being and consequently improve the patient’s health.

Dementia is a chronic progressive degenerative disease, the natural course of which is characterized by the more or less rapid progression of cognitive deficits, behavioural disorders and functional impairment with loss of autonomy and self-sufficiency with varying degrees of disability and consequent dependence on others. Dementia interferes with the patient’s social, work and relationship activities. When we talk about dementias, we refer to a heterogeneous group of pathological conditions with different etiopathogenesis and courses but having a very similar clinical picture. The 2013 DSM-V (Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition) understands dementia as a major neuro-cognitive disorder [7].

Key features will be: Evidence of significant performance decline in one or more cognitive domains (attention, learning and memory, language, perceptual-motor functions, social cognition) from a previous performance level based on testimony from the patient, a reliable informant, or a physician; or, consistent impairment in cognitive performance documented by a standardized neuropsychological assessment or other clinical quantification measure;
A. Impairment of autonomy levels in activities of daily living (i.e., the person requires assistance in complex instrumental activities);
B. Cognitive deficits do not occur exclusively during delirium and are not better explained by other mental disorders (e.g., major depressive disorder or schizophrenia) [7].

In Europe, ISTAT as of January 1, 2013, ranks Italy, in second place after Germany, with the number of elderly people, aged 65 years and older, at 12,639,000, or 21.2% of the total population. The old-age index, defined as the percentage ratio of the population of old age (65 years and older) to the population of young age (under 15), also places Italy second in Europe after Germany, with a ratio of 144 elderly for every 100 young people. Demographic projections show an arithmetic progression of this indicator to 280 elderly for every 100 young people in 2050 for Italy [8].

The symptomatology of dementia, given the impairment of cognitive functions, is characterized by a progressive disability who’s clinical and care management is extremely complex, requiring the activation of a qualified integrated network of health and social welfare services, as indicated by the National Dementia Plan, in effect since the end of 2014. In addition to care, the importance of prevention should be emphasized, evidenced by numerous scientific evidences that identify some modifiable risk factors associated in particular with the onset of Alzheimer’s dementia such as: Diabetes, Hypertension in adulthood; Obesity in adulthood; Smoking; Depression; Low schooling; Physical inactivity. Research reports that reducing each of these risk factors by 10% or 25% could prevent 1.1 to 3.0 million cases of Alzheimer’s dementia [9].

At present, the care of patients with dementia, cannot reach the goal of recovery, but are aimed at improving the clinical picture and functional status, with a reduction in symptoms and improvement in quality of life. For this to be achievable, proper management of the person and the creation of new care pathways that take charge of the patient and his or her primary caregiver is necessary, so that there is a reduction in disability, and there is a guarantee of continuity of care integrated with social and health care interventions. In this review, we will mainly look at nonpharmacological treatments. Integrated management for continuity of care: being dementia, a complex disease it is necessary to adopt an integrated approach, which allows the patient and family to be taken care of, included in a clinical care pathway were, depending on the stages of the disease, the most appropriate intervention can be evaluated. The network, of which health and social-health services are part, are the Centers for Cognitive Disorders and Dementia (CDCDs), the Hospital (including Emergency Room/Emergency Department and hospital OUs), the home care system, territorial Residential and Semi-residential Facilities (e.g. Day Care Centers), services for rehabilitative activities and the palliative and end-of-life care network (including hospice), the social service of health care companies and municipalities, and the informal network.

The “National Dementia Plan-Strategies for the Promotion and Improvement of Quality and Appropriateness of Care Interventions in the Dementia Sector” approved in October 2014, provides strategic directions for the promotion and improvement of interventions in the sector, not only with reference to specialized therapeutic aspects, but also to the support and ‘accompaniment of the patient and family members throughout the care pathway. The Plan focuses on public health measures, which can field appropriate and adequate interventions, countering social stigma, ensuring rights, up-to-date knowledge, as well as coordination of activities, aimed at the proper integrated management of dementia [10].

The main objectives of the document are:
a) Health and social welfare policy interventions and measures: to improve and increase the knowledge of the general population, people with dementia and their family members, and professionals, each for their own levels of expertise and involvement, on prevention, early diagnosis, treatment, and care of people with dementia with a focus also on early-onset forms. To achieve, through the support of research, advances in the care and improvement of the quality of life of people with dementia and their caregivers. Organize and implement epidemiological survey activities aimed at planning and improving care for effective and efficient management of the disease.
b) Creation of an integrated dementia network and implementation of integrated management: promoting prevention, early diagnosis, and care taking, also with a view to reducing discrimination, promoting appropriate intersectoral policies. Making care homogeneous, paying special attention to social inequalities and conditions of fragility and socialsanitary vulnerability.
c) Implementation of strategies and interventions for appropriateness of care: improve the capacity of the NHS in delivering and monitoring services, through the identification and implementation of strategies that pursue the rationalization of supply and use working methodologies based primarily on the appropriateness of the services provided.
d) To improve the quality of care of people with dementia at home, in residential and semi-residential facilities, and at all stages of illness. Promote appropriateness in the use of medications, technologies and psychosocial interventions.
e) Increasing awareness and reducing stigma for improved quality of life: supporting people with dementia and their families by providing them with correct information about the disease and available services to facilitate access to them as early as possible. Improve quality of life and care and promote full social integration for people with dementia including through personal and family engagement strategies. Foster all forms of participation, particularly through the involvement of families and Associations, developing not only the empowerment of individuals but also that of the community. In this context, regional administrations are taking steps to involve local Associations as well.

In recent years, the Integrated Management modality (referred to as Disease Management, Case management, Expanded Chronic care model, and Continuity of patient care), has been successfully adopted in the management of other chronic diseases (oncological diseases, diabetes), and possible applications in the field of dementia are being evaluated [11]. Integrated Management involves the care of the person with cognitive disorder and dementia and his or her family by a team and/or expert center. Integrated management programs, aim to achieve an improvement in the patient’s health status, optimizing human and economic resources, through strategies that change the behaviors of patients and physicians, from whom adherence to care plans and the sharing and use of clinical practice guidelines is often difficult to achieve [12].

With the Agreement 26/10/2017, No. 130 “National Guidelines on Diagnostic Therapeutic Care Pathways (PDTA) for Dementia” and “National Guidelines on the Use of Information Systems to Characterize the Phenomenon of Dementia” a national guideline was given to the NHS’s taking care of people with dementia, numerous PDTAs were created that assist from a multidisciplinary point of view the person with dementia at every stage of the developmental process of this syndrome.

Integrated Management approaches are organized, integrated, proactive, population-oriented systems that place an informed/ educated patient at the center of the entire system to play an active role in the management of the disease from which he or she suffers. Care pathways represent useful tools for the concretization of Integrated Management and at the same time are indispensable for building a care design adapted to the potential and limitations of local contexts, allowing the inclusion, in the different care stages, of verification indicators specifically related to the contributions of the different services and professional figures [13].

To implement an integrated management intervention, it is essential to have:
A. Of target population identification processes and tools.
B. Of evidence-based guidelines.
C. Of collaborative models among the various professionals involved to promote multidisciplinary care.
D. Of psychoeducational tools to promote patient and family self-management as an essential component of care for the chronically ill.
E. Of process and outcome measures.
F. Of sustainable, well-integrated information systems across the territory that encourage not only communication between physicians but also between physicians, patients, and family members to achieve coordinated, long-term care.
G. Of mechanisms and training/upgrading programs for specialists and General Practitioners (GPs).

The Integrated Management model, seems to allow a slowdown in the progression of the disease and an improvement in the quality of life for the patient and his or her family members. Currently, this type of intervention in dementia is limited to a few realities both nationally and internationally, moreover, the survey subsequently carried out on local experiences highlights a wide heterogeneity in the content and process of PDTA construction [14].

What is a caregiver? The term caregiver is English for “one who provides care and assistance.” It identifies the person who cares for and cares for those who are unable to provide for themselves independently, in whole or in part. Caregivers may be people with physical or mental disabilities or elderly people with disabling illnesses. Two types of caregivers can be distinguished: Informal, also referred to as “primary caregiver” and is usually identified with a family member of the patient (most frequently a child or spouse) or at other times may be a friend who provide care for people with cognitive, physical and emotional difficulties, are not financially rewarded and act in a private setting;

Formal, it is identified with a professional, the one who is recognized as a caregiver assumes the role of an active caregiver in taking care of the patient and is committed to performing a supportive and caring function toward a person who is in a difficult condition. The term caregiving refers to the caring activities that a caregiver performs in order to protect and improve the wellbeing of another person. The care activities performed by the caregiver fall within the scope of both basic (hygiene, dressing, feeding, mobilization) and instrumental (meal preparation, home care, taking medications, money management) and psychological (support in relationship life, psychological well-being) activities [15].

A 2015 CENSIS survey shows that in Italy 45.7 percent of employed caregivers are forced to make changes with respect to some aspects of their profession: they often have to apply for parttime (32.1 percent), do a less rewarding job (33.9 percent), leave their employment to care for the sick (16.1 percent), or lose their employment (3.6 percent). It is estimated that the average family caregiver performs 7 hours per day of direct daily care and 11 hours of supervision.

From a legislative point of view, Italy regulates leaves of absence, extraordinary leave, tax relief, accompanying allowance, disability pensions, disability allowances, and early retirement through a law that came in February 1992, called the “framework law for assistance, social integration, and the rights of handicapped persons,” and is referred to as Law 104/92 [16].

Among the various protective regulations, this law, through Article 33, also addresses the issue of monthly paid leave for persons caring for a person with a serious disability or who has a disabling condition. According to this article, it is allowed to manage the hours and manner of care according to the needs of the caregiver who is entitled to adequate care. The purpose of the law is to ensure that caregivers, too, are afforded protection in their right to care that guarantees adequate continuity and quality of care, and that they receive the necessary guarantees to continue their work activities in such a way as to reconcile, without further problems, both, and without interfering with their own life needs.

Paid leave, regulated by Law 105, which also devolves to the worker’s common sense, and cannot be used as vacation time, protects him or her in carrying out his or her social life in order to be able to perform those activities for which work and care become obstructive. The Supreme Court, upholding the Court of Appeals’ ruling, affirms that, with reference to Article 33, paragraph 5, Law 104/1992, the right of the working family member - who continuously assists a relative or a relative by the third degree in a state of disability - to choose, where possible, the place of work closest to his or her home, is applicable not only at the beginning of the employment relationship, through the choice of the place of first assignment, but also during the course of the relationship through a transfer application. Adequate support that the family in which a person with serious health problems lives is the main prerequisite that guarantees dignity and autonomy. At the Campus Bio-Medico University in Rome, the Family Caregiver’s Bill of Rights was presented: a ten-point document that shines a spotlight on the tasks, prerogatives, importance, but also on the difficulties, needs, and upheaval that the existence of family ‘caregivers’ runs into, one of the key elements in the therapeutic journey of anyone who has to deal with a pathology, especially if chronic, disabling or oncological.

The Charter attracted so much attention that it was published in the prestigious journal ESMO Open, with the title ‘The Family Caregiver’s Bill of Rights. The role and importance of the caregiver: an Italian proposal’. Inside, there are enshrined important principles for caregivers, such as “the right to receive adequate information about the disease and the proposed treatments,” the right to receive “from the care team all the information necessary to best assist their loved one,” and “clear and exhaustive information in order to take advantage of all the territorial Services useful in the care of the family member,” as well as to “legitimize their feelings along the path of caring for one’s loved one, it is normal to feel fatigued, sad, nervous, or distressed”; also covered are the right “to take care of oneself,” “to recognize one’s limitations and abilities,” “to maintain living spaces for oneself,” and, if necessary, “to ask for and receive help” or, again, “to protect one’s health” through healthy eating, adequate hours of rest, and routine medical checkups, as well as “the right to access high-quality Health Services.”

The term caregiver burden refers to the “caregiver’s caregiver burden” and is intended to describe how much taking care of one’s family member emotionally, physically, socially or financially affects the caregiver’s psycho-physical and social health. The concept of caregiver burden is therefore multidimensional and derives from the caregiver’s own perception of stress in performing caregiving activities, and many factors can influence them e.g. psychosocial factors such as kinship, social environment and culture. Dementias and cognitive impairment are the main causes of disability and dependence in older people around the world. While the elderly with marked physical disability can often self-manage or be managed without difficulty, and remain reasonably independent, the onset instead of cognitive impairment can quickly impair their ability to perform simple but essential tasks in daily life. The physical, psychological, and economic impact of dementia on individuals and their families is therefore unavoidable [17].

Exposure to chronic stressors can lead to mental and physical health problems, the enactment of negative health lifestyles and habits up to impaired cognitive functioning. Caregiving thus entails a number of consequences on multiple aspects:
Physical health: Results show that informal caregiving may increase the incidence of hypertension and stress. Caregiving would have a real impact on caregiver physiological values, the physical health status reported by caregivers correlates with caregiver burden, and it would appear to be in turn, considered to be at higher risk of mortality;
Psychological well-being: Not surprisingly, the relationship between burden and psychological well-being is negative. Indeed, caregivers are more stressed, more depressed, and have lower levels of subjective well-being than the general population. On the one hand, stressors lead to inefficient control of physiological responses; on the other hand, stress can lead to the enactment of health risk behaviours such as poor diet, sedentary lifestyle, and drug abuse.
Older caregivers may be subjected to greater mental health impairments due to the care provided, as worries about their health would add up to having to care for someone else increasing the psychological burden.
Cognitive functioning: Caregivers show lower levels of both overall attention and information processing speed than noncaregivers. They exhibit higher levels of anxiety and depression associated with a decrease in memory and perceptual speed. Not surprisingly, the decline of caregivers is also linked to a worsening of caregivers’ overall condition. Caregiving is associated with numerous negative consequences affecting physical health, psychological well-being, and cognitive functioning. However, there is great interindividual variability; not all caregivers experience the negative effects just described to the same extent [18].

In a study published in the Journal of Gerontology and Geriatrics (JGG), the importance of social support, understood as an important resource for adapting to stressful events, was noted; being able to take advantage of a viable support network, whether family or friends, influences the amount of time and energy that the caregiver can to devote to lifestyles that are useful in promoting his or her physical and psychological health. Greater social support, results in lower perceived caregiver burden, reduced ‘anxiety and stress, likely due to sharing the practicalities, worries and negative emotions caused by caring for a sick person [19].

In general, one can identify

The General Practitioner (GP) who plays a key role as the point of access to the entire network of social and health services through an initial diagnosis and ensuring continuity of care [20]: Cognitive Disorders and Dementia Centers (CDCDs) established by the “National Dementia Plan - Strategies for the promotion and improvement of quality and appropriateness of care interventions in the field of dementia” with the October 30, 2014 Measure. “The CDCD is configured as an integrated system capable of ensuring timely diagnosis and care, continuity of care and a proper approach to the person and his or her family in the different stages of the disease and in the different contexts of life and care” [21], CDCDs are therefore, the main point of reference for those facing this disease, both for clinical monitoring and access to the service network;

Integrated Home Care (ADI), through activation by the GP or geriatrician in charge of the CDCD, the dementia patient can enjoy personalized home care; Day Care Centers ensure the daytime stay of the elderly person in a protected place where his or her autonomy is promoted and safeguarded; the address is rehabilitative-cognitive-motor, and at the same time they alleviate the caregiving duties of the patient’s family members, as well as provide fundamental psychological and informational support. Placement of the demented person within a day care center can promote delayed institutionalization and provides pharmacological and nonpharmacological assistance to both patient and caregiver;

The Nursing Home (RSA) can accommodate all patients at various stages of illness, even those with modest cognitive impairment for a limited period. The RSA is a multifunctional social-health-assistance service. The services provided aim at functional recovery, social inclusion, and caregiver education and training in the case of the patient with dementia; Alzheimer’s Units (NA) can be found in both RSAs and nursing homes for the elderly, and are exclusively for patients with dementia and severe behavioral disorders (tendency to escape, verbal aggression, physical aggression, etc.); NAs provide a protected but at the same time familiar place that can stimulate the elderly person to maintain normal rhythms of life and keep residual functional and cognitive abilities active; Hospice accommodates all those patients who are in the terminal stage of illness and although they do not require hospitalization, they cannot be adequately managed at home. Hospice thus ensures continuity of care, safeguards the patient’s remaining resources and human dignity [22].

Health literacy is broadly defined in the literature as the personal characteristics and social resources that enable an individual to access, understand, evaluate, and use information and services to participate in decisions about his or her own health. Health literacy is considered a multidimensional construct composed of individual capabilities, interpersonal elements, health system and community factors. Many studies have analyzed caregiver burden according to different chronic diseases and chronic injuries, and many tools have been created to determine the level of burden, such as the Caregiver Burden Inventory (CBI). What emerges from the existing literature highlights:

Lack of technical skills in supporting or replacing the assisted person in activities of daily living; lack of information about medical care and the need to be more involved in the clinical care process. These elements fuel the development of caregiver burden. Needs and burden assessments are key to developing strategies to support and train family caregivers and to ensure, improve and maintain both the quality of life of the patient and the caregiver. The factor most likely to prevent excessive burden is certainly awareness; in fact, to control the level of burden, it is important to know the disease. Caregivers need to know how to use therapies, how to care for the sick person, and how to relate to the sick person. This can be helpful in gaining a sense of control and competence over the situation, both practically and emotionally. Knowledge helps one feel more comfortable. A critically important aspect of preventing burden is social support.

According to the WHO definition, therapeutic education: “should enable the patient to acquire and maintain skills and competencies that help him to live optimally with his illness.” The realization that only by analyzing and addressing in their totality the factors that can affect people’s well-being can a virtuous path be built that has as its goal the highest possible well-being for everyone, had finally produced a theoretical elaboration of enormous relevance. It began to give more importance to health education understood as structured and systematic opportunities for communication to develop the personal knowledge and skills necessary for individual and collective health. In this definition this time, variables not only of a biological order but also, and above all, of a cultural and social order intervene massively.

Health literacy of patients and caregivers, must be individualized, and communication with them should be considered a key element. It is clear that poor health literacy could be associated with many problems, such as poor self-management, misuse of health care services, and increased mortality [23]. It is important for caregivers of chronic patients to stay healthy in terms of reducing the burden of care. Caregivers must be properly educated about health so that they are able to understand health and develop the correct self-care behavior that will enable them to maintain and even improve their health status [24]. Poor health literacy among people with chronic health conditions has been associated with poorer disease selfmanagement, less healthy outcomes, reduced psychological wellbeing, increased health service use, and increased mortality.

It is essential, that caregivers participate in health decision making, engage in home care, participating in information exchange with health professionals. Caregivers of patients with chronic diseases and patients with dementia, expressed the need to receive information related to the medical, psychosocial, and practical area, and report that often, these needs are not met. The consequence experienced with respect to the lack of adequate information was associated with increased distress, increasing burden, and dissatisfaction with the health care system. Education can also prevent and reduce re-hospitalizations resulting from inadequate information about self-care. The purpose of health education is to teach people to live as healthily as possible, that is, to strive for maximum health potential [25].

Health literacy, is, therefore, an important challenge of our time, since a lack of understanding of therapeutic prescription or the language of health professionals places the patient in a situation of severe awe and discomfort [26]. Over the past three decades there has been a growing interest in trying to assess with validated instruments the caregiver’s experience related to his or her role in caring for a sick person. A review published in 2012 in the International Journal of Nursing Studies [26] researched all measurement scales that inquire about the caregiver’s emotional, physical, psychological sphere, along with his or her needs, adaptability, satisfaction, and ability to provide care. The scales were categorized in tune with the main construct as expressed by its creators; this made it possible to apply a classification into three types of scales:
Positive (n=34): investigate esteem, competence, quality of life and well-being;
Neutral (n=16): investigate more neutral spheres such as coping strategies, health, affect, and reactions;
Negative (n=55): investigate dimensions such as burden, fatigue, stress, pain, loss of self.
The most useful instrument for detecting burden has been found to be Zarit’s or the Zarit Burden Interview (ZBI; [20] Zarit and Zarit, 1987).

This scale measures the perceived burden of the informal caregiver in its multidimensional aspects: social, physical, financial and emotional; as well as the relationship with the caregiver. The score assigned for each item investigated ranges from 0 to 4 (0=never, 4=almost always), the limits of the values are: ≤46 non-burden; 47-55 mild burden; ≥56 intense burden. The Zarit Burden Interview (the 22-item version) has been translated into 18 languages, and its reduced forms, from 4-6-7-8-12 items, have also been validated for caregivers caring for advanced chronic patients [27].

The choice of the most appropriate assessment tool to use lies in the starting question and the population group to be investigated. In addition to being an appropriate scale for assessing burden in caregivers caring for elderly, chronically ill patients at home [28], its usefulness in predicting the risk of depression [29] in people with scores of 24-26 and the risk of nervous exhaustion has also been documented in the literature.

From what emerges from the literature, becoming a caregiver means taking on a new role:
Being a caregiver means not only being a spouse or relative of the sick person, but performing a task that involves both helping and hygienic care, but also supervision. Caregiving, requires training, to perform it requires specific knowledge and skills as well as an attitude that allows at the same time to take care of oneself as well as the patient. The progression of the disease, results in the patient, more confusion and less control over his behaviour, which can be interpreted as causal or senseless, instead it has meaning, as a reaction or response to needs, impulses, emotions, desires.

The caregiver must find a strategy, that is, a deliberate action carried out to achieve a goal: “good” strategies are based on a proper understanding of the situation that is why training, psychoeducational and supportive interventions for caregivers can be critical to managing the caregiving relationship. Caregiving strategies teach how to understand the meaning of the patient’s behaviour and how to manage it. Illness makes this task more difficult because: The old relational systems are no longer useful, the patient has difficulty understanding and cannot help the caregiver understand what is happening to them, and it is therefore necessary to take control of the situation.

Following the critical review of the literature, it emerged that the informal caregiver plays a vital role in the home care of the person with dementia. Numerous studies have shown that more than half of the informal caregivers are women, 51% of whom lived with the person being cared for; in addition, 60% of them are sons/daughters of the person with dementia, demonstrating how the family assumes a central role in caregiving. In several studies addressed the consequences on caregivers of people with dementia resulting from their caregiving process, it was found that caregivers reported restricted free time, increased health problems and negative emotions, with significant increase in Caregiver Burden Inventory from 16% to 22% in 2 years. Caregiving for people with dementia is often associated with worsening quality of life for caregivers. The critical review highlights for informal caregivers: knowledge and practicality of care, psychological counselling, and collaborative management, identifying real training gaps that weigh on caregivers’ quality of life and worsen care outcomes. To address these issues, the solutions most highlighted in the literature involve inadequate caregiver training, which as highlighted by Elizabeth Birkenhead’s study, allow for improvement in caregivers’ quality of life at three months, improvement in resource use, reduction in CBI subjectively and objectively, and reduction in depression. Caregiving services need to be tailored to the individual needs of the caregiver as there are great differences between caregivers and patients with dementia (severity, type of dementia, amount of informal/ formal support available, living situation, etc.), and the caregiver’s needs are not the same. There is moderate to high quality evidence that individual behavioral interventions (≥6 sessions), directed toward the caregiver (or combined with the patient are effective in improving psychological health in dementia caregivers improve caregiver psychosocial health and may influence admission rates of patients with dementia.

The results of the literature review, highlight that the presence of indicators of stress, physical and psychological symptoms have a negative impact on the quality of care provided by caregivers. In addition, it is important to point out that knowledge of the variables that most affect the manifestation of a higher degree of burden can enable the implementation of more targeted caregiver interventions and the development of tools for personalized care planning. It is essential to pay special attention to the interactional, communicative and role aspects of family functioning that can affect both the caregiving function and the psychological stress processes of the primary caregiver.

It would also be desirable to ensure greater continuity between the hospital and the local area by strengthening links between different services, and to schedule follow-ups to monitor the changing needs of caregivers. The issues of illness negatively affect the health of the caregiver and more broadly in the family of the caregiver. However, it is evident from the literature and the norms viewed that there is no real legal recognition to reconcile the caregiver’s work time with the caregiving time and to allow for facilitations/facilitations at the economic, insurance and pension levels. It would be crucial for policy choices to address these needs for the purpose of legal, cultural and social recognition of the caregiver. People living with dementia often face social stigma leading to increased rates of loneliness and depression [30].

Due to the common misconceptions surrounding dementia, a diagnosis can affect how friends, family and the community interact with the person diagnosed, often in a negative context [31] social stigma around dementia often leads to perceptions and behaviours that the person is helpless and unable to make decisions or participate in the activities they were involved in previously [30,32]. The application of multiple informational, psychological, educational, supportive, and formal interventions is again revealed as the most effective strategy in reducing Caregiver Burden and negative outcomes affecting psychological and physical health. An increase and strengthening of territorial support services and the presence of specialized Psychologists/Psychotherapists, working in collaboration with other professional caregivers, are crucial in maintaining psychological, social and physical wellbeing, and prevention helps to support older people and avoid acute hospitalizations and emergency interventions. Promoting caregiver well-being has repercussions, not only for the patient’s own health, by delaying institutionalization as much as possible. Communication and the dissemination of clear and accurate information are the basis for greater awareness of what institutions can offer.

Professionals therefore have an ethical duty toward patients and their families. The analysis of the real needs allows us to deal with the several ethical questions arising in the course of the illness, in compliance with the principles of independence - selfdetermination, charity and social justice. Nowadays it seems that a person affected by dementia has no dignity. A human being, as a “person,” possesses an original dignity at any stage of his/her existence. A person is not only a “cognitive” being and a patient with dementia is still a “person,” therefore in any kind of relationship with him/her we have to acknowledge this dignity [33], and both patient and caregiver will be guaranteed a social inclusion, respectful of the condition of disability and no longer marginalizing and stigmatizing the condition of “dementia.”

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