Scientific Evidence on the Quality of Life of Caregivers of Elderly People with Dementia Evidências Científicas Acerca da Qualidade de Vida de Cuidadores de Idosos com Demência

Objetiva-se analisar a produção científica sobre a qualidade de vida de cuidadores de idosos com demência nos últimos cinco anos. Trata-se de uma revisão integrativa PubMed, com a questão norteadora: quais as evidências produzidas sobre a qualidade de vida de cuidadores de idosos com demência? Utilizou-se como recorte temporal artigos publicados entre descritores: demência; cuidadores; enfermagem; qualidade de vida. selecionados 27 artigos, os quais foram agrupados em duas categorias: “Intervenções não farmacológi e/ou fatores relacionados à qualidade de vida”. cuidadores, é possível promover benefícios na qualidade de vida de ambos, proporcionar atenção integral e consciente. Palavras-chave:idosos; qualidade de vida; demência; cuidadores; enfermagem. Abstract The goal is to analyze the scientific production on quality of life of caregivers of elderly people with dementia in the last five years. This is an integrative review carried the guiding question: What are the studies about the quality of life of caregivers of elderly people with dementia? The articles analyzed were published between 2011 and 2016, using quality of life. After applying the eligibility criteria, 27 scientific articles were selected and grouped into two categorie non-pharmacological interventions and symptoms and / or factors relate strategies involving the elderly and caregivers can promote gains in both quality of life by providing a comprehensive and conscious attention. 
Keywords: elderly; quality of life; dementia; nursing


Introduction
The elderly correspond to the age group with the greatest growth in demographic structures. In 2009, there were more than 730 million people over the age of 60. By 2050, this group is estimated to increase to around 2 billion people (1) .
The increase in life expectancy is accompanied by the occurrence of chronic noncommunicable diseases and neurodegenerative diseases. Among the diseases typically related to the elderly, it is possible to highlight the dementias, which today affect part of the pre-senile and senile population of the whole world. In 2001, it was estimated that 24.4 million people aged 60 and over were suffering from the disease, which is expected to double every 20 years, that is, to 42.3 million in 2020 and 81.1 million in 2040 (1 -2) .
There are several types of dementias, which can be classified as reversible / nondegenerative and irreversible / degenerative. The irreversible ones are equivalent to 80% of dementias and are comprised of Alzheimer's Disease, Vascular Dementia, Dementia with Lewy Corpuscles, and Frontotemporal Dementia, while reversible agents represent 10% of dementias, which can be caused by drug toxicity, depression, nervous system infection, metabolic and neurological diseases (primary brain tumors and normal pressure hydrocephalus), organic and metallic poisoning, thyroid and parathyroid disfunction, and nutritional deficiencies of vitamin B12, B6, thiamine and folic acid (3) .
Dementia is characterized by the progressive decline of memory that brings a series of consequences on cognitive functions, conducting motor commands deficiencies, and failures in planning. The elderly diagnosed with the disease are mostly women, aged between 60 and 100 years old, married or widowed, with low level of education and retired (4)(5) .
A North American study identified that people with severe dementia require 41.5 hours per week of additional care; in the moderate cases it takes 17.5 hours, and 8.5 in the mild cases (6) .
In this scenario, the caregiver appears as a care option for the elderly, which has to deal with progressive changes in the manifestation of dementia. In many cases, the professional plays this role alone, without another person to share the tasks required (7) .
Caregivers are mostly female, married, between the ages of 41 and 50, with incomplete primary education and with a monthly income of up to 1 (one) minimum wage. In general, they are members of the family and present some changes in their physical, social and emotional health patterns, which are intensified the higher the degree of the relationship between the elderly and the caregiver (8) .
As part of the family care setting for the elderly, caregivers are responsible for the activities that were previously performed by the elderly, that is, daily care, home care, account management, and basic care activities (9) .
In view of the limitations of the disease, caregivers begin to present stressful factors related to task overload, as well as forgetfulness of their own health and basic activities, directly affecting their quality of life (10) .
By causing damage to the physical and emotional health of the caregiver, negative implications are generated for the care process of the elderly in the progression of the disease.
It is important that health teams understand the importance of caregivers and can develop strategies that promote their well-being, as well as favor improvements in their quality of life.
Quality of life is defined by the World Health Organization as the perception of the person regarding the their life's considering the cultural values of the place where they live, in addition to their goals, expectations, standards and concerns (10) .
In the elderly care setting, caregivers face a physical overload that ends up making it difficult to perform certain tasks besides the existing chronic diseases, such as hypertension, diabetes, depression and osteoporosis (10) .
The relevance of the study is to contribute to the updating of knowledge of the health team and to the improvement of the quality of assistance to caregivers of the elderly.
Considering the importance of caregivers in the care of the elderly with dementia and how this can affect the quality of life of the caregivers, the objective of this study is to analyze the scientific productions about the quality of life of caregivers of elderly people with dementia.

Method
It is an integrative review, with data collection period from November 5 th , 2016 to December 10 th , 2016. Integrative review is a method of research analysis that enables the synthesis of knowledge in a given subject. It includes studies with different methodological approaches, as well as identify knowledge gaps that need to be filled with new research (11) .
The integrative review method is composed of six stages: (1) identification of the theme and the elaboration of the guiding question; (2) establishment of criteria for inclusion and exclusion of studies; (3) definition of the information to be extracted from the selected studies; (4) evaluation of studies included in the integrative review; (5) interpretation of results; and (6) presentation of knowledge review / synthesis (11) .
The first stage is the identification of the theme and elaboration of the Questioning Question, which was as follows: "What is known about the quality of life of caregivers of elderly people with dementia?" The second stage is the inclusion and exclusion criteria, being established as inclusion: adherence to the objective and the proposed theme, articles published in Portuguese, English and Spanish; articles in full that portrayed the issue of dementia and quality of life of caregivers published in the last five years. And the exclusion criteria was published articles that were repeated in the databases.
The research was performed in the database of the Virtual Health Library: Database of Nursing (BDENF), Latin American and Caribbean Literature in Health Sciences (LILACS) and PubMed, between the years 2011 and 2016.
The terms used, according to the descriptors in health sciences (DECS) and Medical Subject Headings (MESH), respectively, were: "Dementia" AND "Caregivers" AND "Nursing" AND "Quality of Life".
The third step consisted in defining the information to be extracted from the selected studies. In this stage, a table was elaborated containing the following information: year of publication, title of the article and type of study The articles found through this combination and the path traveled are shown below in Flowcharts 1 and 2.
In the fourth stage, the evaluation of the studies included in the integrative review and critical analysis is carried out, correlating them. In the fifth stage, we interpreted and discussed the results, highlighting the evidence of the quality of life of caregivers of elderly people diagnosed with dementia. In the last step, the review and synthesis of the acquired knowledge was presented.
For content analysis, the information was organized as follows: year of publication, language, methodological approach, content, database and authors' recommendations.
Regarding the main characteristics of the selected articles, it is observed that regarding the publishing year, 2014 represented the largest quantitative, with 30% (8 articles); then the year 2012 with 18% (5 articles); the years 2013 and 2016 were represented by 15% (4 articles) and 2011 and 2015 quantified 11% each (4 articles / year).
The language that was most published in was English, represented by 85% (23 articles), articles in Portuguese obtained the percentage of 15% (4 articles).
Regarding the substance of the content, the articles were grouped into categories for better understanding: non-pharmacological interventions (56%) and symptoms and / or factors related to quality of life (44%). Table 1 shows the distribution of articles according to author, year of publication, location, purpose, type of study and main conclusions.

Non-pharmacological interventions
This category, composed of 15 articles, addresses the use of strategies to promote an improvement in the quality of life of caregivers, such as support and guidance groups, training and information workshops, skills training and support. These measures are capable of improving levels of anxiety and depression, in addition to minimizing the impact of the disease on the life of caregivers (12)(13) .
In the literature it is pointed out that caregivers lack information and support. They need adequate spaces to ask questions, and health professionals should offer support, guidance and information among the subjects (14) .
Corroborating, the support groups have an instructive character, provide psychological support and guidance in problems solving, as they exchange experience and value the knowledge of caregivers (1) .
A descriptive study carried out in 2016 highlighted the importance of nurses working the elderly-caregiver binomial through meetings that provide listening, information, planning, monitoring and evaluation of care management strategies for the elderly and their caregivers. caregiver (15) .
It is notorious that caregivers need a look from the health team, evidenced by an integrative review carried out in 2015 which noted that the interventions for the studied clientele have arisen in the last 15 years. In other words, there is still a shortage on this subject, which demonstrates the importance of interventional attitudes capable of impacting the life of caregivers and the elderly (15) .
In this same study, the focus on family caregivers is highlighted, being considered one of the pillars in the health issues and in the care provided to the family.
Care centered on the elderly and caregivers should begin in the confirmation of the diagnosis of dementia, in order to provide the caregivers understanding about the basic characteristics of the disease. Knowing the peculiarities of dementia, caregivers tend to understand and deal more easily with evolution, difficulties and challenges. Regardless of the level of care, it is fundamental to establish a harmony between the caregivers, since it becomes possible to offer well-being to them and, consequently, the quality of the care provided to the elderly with dementia (13) .
Orientation and support to this group of caregivers allows for constructive involvement with the demented elderly and the promotion of both of their health. This strategy is valid in all settings, especially in the Family Health Program, where the caregiver should be seen as a health agent, receptive to specific guidelines and preventive measures to avoid early dependence on the elderly (9) .

Factors related to quality of life
In order to offer intervention mechanisms to caregivers, it is necessary to know the symptoms / factors related to quality of life, corresponding to 12 articles in the category.
The literature indicates that caregivers of people with dementia present exhaustive demands on physical and mental health, as well as important changes in lifestyle based on the needs of the person being cared for (15) .
As an example of factors that can negatively influence the QoL: poor sleep quality; type of dementia and neuropsychiatric symptoms; support, social support and access to health services; leisure; pre-existing health problems; subsidized interventions with training for the caregiver and spirituality (16) .
The cited conditions are directly related to the occurrence of depressive symptoms, anxiety and overload, as well as psychological symptoms such as pain, anger, sadness and fear. These situations worsen as the disease progresses (15)(16)(17) .
The type of relationship between the elderly and the caregiver is also indicated as a cause of harm in the QoL, that is, the caregivers who are family members present feelings of grief, oppression and sadness, with a mixture of compassion and solidarity (18) .
A study conducted in 2016 with 296 caregivers of a Primary Health Care Unit identified that the participants' overload was considered moderate, possibly associated with the level of dependence of the elderly. Regarding quality of life, the average score obtained through the SF-36 questionnaire was 58.04, and pain was considered the domain with the lowest score (18) .
In addition, the solitary care found in many families with elderly people with dementia is seen as a potential for overload, because in this case, the individual provides care individually, without any help in the execution of tasks. The mixture of sensations and conditions of care has repercussions on the quality of life, reflecting the importance of adequate support to these caregivers (18) .
As well as the lack of people to share the care, family income is also seen as a stressful factor for the maintenance of quality of life, since most caregivers do not exercise paid work due to the need for integral care for the demented elderly (7) .
The negative factors in the quality of life corroborate the need to carry out new studies on the subject, pointed out in 41% of the articles studied in the present review; 35% point to the importance of public policies aimed at the elderly and their caregivers, and 24% of the articles recommend the development of strategies for the care and management of caregivers.

Conclusion
With the increase of chronic neurodegenerative diseases, the elderly are increasingly dependent on aid and supervision to carry out their daily activities. In many cases, caregivers are responsible for this activity, which is defined as exhausting and impacting on their physical and emotional health.
The hours spent on care, the lack of recognition and information are capable of causing harm to the lives of caregivers. Overload, stress and anxieties are closely related to maladies in the quality of life.
It is evident that health professionals need to include in their practice measures not only care for the elderly with dementia, but also to articulate those involved in care.
Interventions should be tailored according to the specificity and need of caregivers, making them able to deal with the limitations that the disease causes in the elderly with dementia. By providing strategies involving the elderly and caregivers, it is possible to promote benefits in the quality of life of both, providing an integral and conscious care.
The study allowed the acquirement of knowledge about the relationship between quality of life and caregivers, evidencing the possible forms of nursing work that deals with the elderly and their caregivers, that is, the articulation between the analyzed categories.
As a limitation of the study, we highlight the low number of articles found and selected for the research, hence the need to develop current studies on the subject, in order to guide the planning of strategies aimed at the clientele studied.