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SOCIAL
SCIENCES
REVIEW ARTICLE
Overcoming the stigma of dementia, a challenge to the Cuban society
Superar el estigma hacia la demencia, un reto para la sociedad cubana
Rodolfo Bosch Bayard, Juan de Jesús Llibre Rodríguez, Tania Zayas Llerena, Elaine Hernández Ulloa
Universidad de Ciencias Médicas de La Habana. La Habana, Cuba.
This
paper is a translation to English of its original version, available on:
http://www.revhabanera.sld.cu/index.php/rhab/article/view/1306/1543
ABSTRACT
Introduction:
Alzheimer´s Disease International developed a campaign to overcome the
stigma of dementia in 2012. Stigma is the greatest obstacle to identify
health problems, find their solution, and use the health services the most efficient
way.
Objective: To
present the effect of the stigma of dementia on the patient, the family, and
society.
Material and Methods:
A bibliographic review of articles published from July 2010 to March 2016 was
carried out. The information was taken in electronic format via INFOMED;
and we used databases such as Pubmed, Ebsco, Medline, Sciencedirect, Clinicalkey,
and Scielo. The data obtained were analyzed and discussed.
Development: Stigma
interferes with a successful social life, opportunities about seeking good jobs,
and loss of mental functions in those people suffering from dementia. It
is closely related with ageing and loss of mental functions. The areas of the
greatest impact of stigma are: work area; driving; and the possibility to give
consent for medical procedures, which can have an effect on a premature loss
of dignity and autonomy.
Conclusions: To
overcome the present stigma of dementia, it is necessary to offer more acceptance
and support to patients and families; increase the quality of the attention
to those people with cognitive impairment; educate the population, create favorable
environments; implement social networks and social support; and call on the
participation of all social sectors.
Keywords: social stigma, dementia, social discrimination, health plan, family, society, Cuba.
RESUMEN
Introducción:
La Asociación Mundial de Alzheimer en 2012 llevó a cabo una campaña
para superar el estigma hacia la demencia. El estigma constituye el mayor obstáculo
para identificar los problemas de salud, encontrar sus soluciones y explotar
de forma más eficiente los servicios de salud.
Objetivo:
Exponer la repercusión del estigma hacia la demencia sobre el paciente,
la familia y la sociedad.
Material y Métodos: Se realizó una revisión de la
literatura publicada en el período de tiempo de julio de 2010 hasta marzo
2016. La recuperación de la información se llevó a cabo
a través de la red de Infomed, utilizamos las siguientes bases de datos,
Pubmed, Ebsco, Medline, Sciencedirect, Clinicalkey y Scielo. Se analiza y se
comentan los datos obtenidos.
Desarrollo: El estigma interfiere en que las personas con demencias tengan
una vida social exitosa, obtengan empleos y puedan vivir cerca de otras personas.
Está muy relacionado con la edad y la pérdida de las funciones
mentales. Las áreas de mayor impacto del estigma son: la esfera laboral,
la conducción de vehículos, la posibilidad de dar consentimiento
para los procederes médicos, lo que puede repercutir en una prematura
pérdida de dignidad y autonomía.
Conclusiones: Para superar el estigma que hoy existe hacia la demencia
es necesario brindar mayor aceptación y apoyo a los pacientes y familiares,
aumentar la calidad de atención a personas con deterioro cognitivo, educar
a la población, crear ambientes favorables, crear redes sociales de apoyo
y convocar a la participación de todos los sectores sociales.
Palabras clave: estigma social, demencia, discriminación social, plan de salud, familia, sociedad, Cuba.
INTRODUCTION
During
the last decades, it has been exhorted to overcome the stigma towards people
suffering from mental disorders because it creates enormous barriers that hinder
the scientific development and deteriorate patients´ quality of life.
Alzheimer´s Disease International (ADI) developed a campaign to overcome
the stigma of dementia.1 The stigma constitutes the greatest obstacle
to identify health problems, to try to find solutions, and use the health care
services the most efficient way.2
In 2005, it was estimated that
there were about 46,8 million people with dementia in the world; with a probable
increase of 65 million in the year 2030, two-thirds of which will live in
developing countries.3 Dementia is the first cause of disability
in older adults, and a health problem that causes greater dependence, need of
care, economic overload, and psychological stress in the carers.4
Latin America is one of the regions that will be more affected by demographic
transition; the cases of dementia will increase from 7,8 million people who
suffer from it at present to more than 27 million who will be suffering
from it in 2050. In Cuba, 160 thousand people affected by dementia were
estimated in 2015, but this number could increase to 421 thousand in the year
2050. The cost of the disease was valued in 512 million dollars annually.5-8
This illness still
goes unnoticed6, many people consider it a disorder typical of aging,
which appears at the end of life when most of the people have already "contributed
to society". Dementia is the main health problem that affects older adults
and their families, and deteriorates the quality of life of carers. The
frequent care of people with this illness conditions that the carer quits the
job; therefore, it is necessary to overcome the stigma to guarantee a favorable
environment to people with mental disabilities and their families.
OBJECTIVE
The aim of this research is to show the repercussion of stigma of dementia on the patient, the family, and the society.
MATERIAL AND METHOD
A bibliographic review of articles published from July 2010 to March 2016 was carried out. The information was taken in electronic format via INFOMED; and special databases were searched such as Pubmed, Ebsco, Medline, Sciencedirect, Clinicalkey, and Scielo. Keywords such as dementia, stigma, healthcare, discrimination, and the Boolean operator AND were used for the search of scientific literature in the mentioned databases.
DEVELOPMENT
Definitions of stigma
Goffman
(1963) considered stigma for the first time as a cause of fear, low self-esteem,
irritability, fury, inability to manage situations, hopelessness, and increase
of family load;4 However, Thornicroft related stigma with problems
of knowledge (ignorance), problems of attitude (prejudices), and problems of
behavior (discrimination).7-8 The patients with Alzheimer´s
Disease are labelled or stereotyped frequently; this act causes negative consequences
because they are excluded or treated in a different way. Evidence suggests
that stigma interferes with the possibility of people with dementia to have
a social life, get good jobs, and rent or live near other people.
In mental illnesses, stigma
corresponds with the affectation they provoke in life relation. In 2003, Schultze
and Angermeyer proposed 4 dimensions of stigma of schyzophrenia, also
applicable to dementia when considered to be a mental disability: The first
refers to discrimination in the context of interpersonal relations; the second
is related with the public image of mental disorders; the third is defined as
the effect of stigma on social and political structures, legal regulations,
and mental health services; and finally, the fourth dimension deals with the
performance of social roles.
There are other types of
stigma-related behavior which are the stereotypes, prejudices, and discrimination.
Stereotypes are attribute
beliefs, attitudes, and behaviors which categorize them as a particular group
of the society, as a cognitive construction of stigma in mental disorders; the
stereotype is presented as a belief about groups, which is learned during the
development of a specific society and through mass media;9 for example,
people with mental diseases are unpredictable and potentially violent, and the
individual can have his/her own stigma: "… I am a dangerous person, potentially
violent".
Prejudice is conditioned
by attitudes about specific groups, which include emotional aspects (to feel
nervous, annoyed, or fearful in front of a person with a mental disease).10
Discrimination in
the behavioral sphere is based on prejudice and can be manifested as having
less opportunities than other people to get a job, to rent; and lack of support
from society, or lack of empower.
Corrigan represented a
model of the cognitive constructs that emerge from social psychology and impact
typology. (Table)11 These constructs for
dementia are comparable to the loss of self-esteem, and the social isolation
that these people suffer when the illness is evident.
What are the consequences of stigma?
The
consequences of stigma can be observed in the deciders, the medical personnel,
the family (carers), and the society.
In the deciders: 1) Minimizes
the health problem which behaves like an ice floe, the greatest part is the
one that is not visualized; 2) Produces a delay in taking decisions in order
to face dementia; 3) Reduces the quantity of resources available for the preparation
of the personnel that provides health care for people with cognitive impairment;
4) Makes the acquisition of medicines and advanced diagnostic technologies more
difficult for the patients suffering from this illness; 5) Delays the offer
of accessories and disposable material which is needed for the care of these
patients at home.
In the medical personnel:
1) Delays the diagnosis and treatment; 2) Distorts the service offered, as well
as the level of the service given; 3) Manifests a tendency to minimize the problem;
4) Favors the violation of the rights of the people with cognitive impairment.
In the patients: 1) Causes
that they feel excluded or discriminated; 2) Favors the condition in which they
feel that their desires or preferences are not taken into consideration; 3)
Limits them to have an active social life and receive visits of friends and
relatives; 4) Benefits their own contempt because of having a cognitive impairment;
5) Causes loss of self-confidence, fury feelings or anguish because they
cannot remember things.13,14,15,16
In the carers: 1)
Limits the act of revealing the diagnosis of dementia when it has been explained
to their family member because it could lead to suicide ideas; 2) Limits the
possibility to get good jobs because of their classification; 3) Generates nihilism
or pessimism about the prognosis; 4) Favors the act of receiving little comprehension
in the working area due to the affectations caused by the fact of being a carer.17
In the society: 1)
Generalizes the use of a negative language towards dementia, including the mass
media; 2) Produces segregation because they are "mentally ill"; 3) Limits the
support given by the social networks to the patients and family members.
Influence of age on the stigma
As
the aging process continues, the individual is at a higher risk of suffering
from dementia; after retirement, great changes occur in people´s lives
at an individual and social level; they experience difficulties in adapting
to their new condition, some families do not see the elderlies the same way
they used to see them when they were young because, from the economic point
of view, they contribute less, but the family support given during all the life
is not taken into consideration. Many elderly people report a great imbalance
between what they gave and what they receive form society, and the persons with
memory impairment suffer from lack of social recognition.18
In 2008, The World
Psychiatric Association Section of old age psychiatry consensus, called upon
to promote the highest ethical standards in the psychiatric illness in the medical
practice to defend the rights of the people with mental disorders in the world.19
Influence of gender and stigma
The
carers of people with dementia abandon their personal interests to dedicate
to the care of these people for an unlimited time; most of them are women (wives
or daughters) who, in most of the cases, have to quit their jobs and suffer
great affectations in their personal and family lives, as well as in the relations
with their couples.20 On the other hand, women represent
the highest percent of the medical personnel, and the one that offers institutional
care to patients with dementia. The role of the woman in the society has
been understood in different ways in the most dissimilar cultures, but generally,
they are attributed the role of being the responsible of the home, the feeding
of the family, and the care of the ill people.
In Cuba, more than 80%
of the carers of patients with Alzheimer´s Disease are women. Life
expectancy is higher in women than in men, but women are also more exposed to
comorbidity, delicacy, and disability, which contributes to an increase in the
overload of the carer and a tendency to depression.21 Together with
aging, the quantity of elderly women that care for elderly men will be higher.
When having excessive workload, women are the ones that suffer from a higher
stigma associated with dementia.22
Social support networks (social groups, mass organizations)
The lack of support networks is one of the main factors that increases stigma of dementia; in Cuba, the existence of elderly people who live alone or accompanied by other older adults with limitations is a concern. The role of principal carer is played by only one person in many families, and the rest of the family has a very passive attitude, which provokes a deterioration of both the quality of life of the carer and family relations.23 The carers of persons with dementia are likely to have fewer friendships, and receive less visits than those people of their ages who are not ill. The social networks such as elderly groups, mass organizations, and associations of retired people should have a dynamic role in the incorporation of carers into collective activities, the practice of physical exercises,24 and healthy lifestyles to prevent the disease and achieve a better quality of life.25,26,27
Needs of people with dementia
The needs expressed by patients with Alzheimer´s Disease and carers are related with the information they receive about their illness, the management of their properties, finances, and the communication with the specialists. They also ask for help from social groups; and express the desire to be taken into consideration to maintain their autonomy and dignity; and the need to be cared for trained people with experience, among other demands.28
In our society
In
Cuba, the stigma of dementia affects the recognition of the problem, and some
delay in the incorporation of all social sectors to fulfill practical actions
that help to fight for the disease. In 2015, it was calculated that 160
thousand people were living with dementia; so if an average of two people suffer
the overload for the care of each ill person, then about 480 thousand people
could be victims of the stigma of the disease.
In our professionals, the
stigma is manifested by the fact that despite dementia is the seventh cause
of death in Cuba, when analyzing the results of surveys, many doctors do not
consider it as a health problem, there is not a continuous recording of its
incidence, and there is a great misdiagnosis because this illness is not customary
filled out on the death certificate. In the primary care level,
it is necessary to work in the personnel training for the early diagnosis, to
promote research on the topic of dementias, and create training programs for
both the formal and informal carers of people with cognitive impairment.
Our population is not yet
prepared to see that the doctors sit in front of the patients with mild cognitive
impairment or mild dementia, and discuss the diagnosis and possible evolution
of the disease, establish a life project, and express their willingness in an
anticipated way; and this is a consequence of stigma.
In our opinion, the carers
suffer the stigma to the extent that they have less resources (generally, they
cannot have the possibility to buy disposable diapers, they don´t have
access to technical help for the people who wonder around, and they can´t
maintain a balanced diet according to the conditions of the elderlies); they
receive less family and social support; they are victims of unwillingness in
their work environment when they have to compete with their colleagues in a
level playing field; and have less possibilities to fulfill the tasks advised
by social, political, and mass organizations. In Cuba, the elderlies
that work and care for other elderlies is increasing daily because of popular
ageing and the need to increase the age of retirement; therefore, to develop
work policies that protect these people becomes a priority.
On a social level, the
media often convey a pessimistic or negative approach when they refer to ageing
and dementia; when the doctors sometimes report on this condition, we use to
say "the problem of ageing", even when we should be proud of the increase in
life expectancy, which is an index that represents an achievement in the Cuban
public health. For real success, all the society should assume this task.
It is necessary to change the glaze of "pity" towards the persons who work and
care for a person with dementia because they really have a double day´s
work, without even expecting the recognition of the family member who is not
in the condition to do it. We should work uninterruptedly for the education
of the population with regard to the right of the elderly and people with mental
impairment; begin to work in the formation of these values from elementary school,
and at home as part of the role of the family. We have to involve much
more the radio and the television in the care of people with dementia who have
lost their validity because many carers cannot attend to psychoeducational programs
for the attention of the family.
One of the greatest barriers
that hinders overcoming stigma is not to consider that "dementia is a problem
of all of us". If it is a reality that the Cuban government is worried
facing population ageing, which is expressed in the guideline 144 of the social
and economic policy of the Cuban state, approved in 2010; then it is necessary
to have more participation of the social sectors to create friendly environments
for disabled people, eliminate architectural barriers, move homes closer to
barber´s, hairdresser´s, and food services (for the elderly that
cannot cook), increase help networks, and tele-assistance services, which
make the work of the carer more bearable.
In Cuba, more than the
90 % of people with dementia receive care at home, whereas in the countries
with high incomes, most of the care is carried out in institutions at a very
high cost; that´s why, the carers give an important support to society
and the economy of the country, which should be definitely seen from this perspective.
What can be done do reduce the stigma of dementia?
Alzheimer´s Disease International (ADI) in 2012, proposes the need to approach the effects on stigma perceived through the education of the people, as well as to increase the quality of sanitary attention by the professionals to the people who has been diagnosed with dementia, and the carers. The ADI has proposed the following guidelines to overcome the stima of dementia:
1.
Communicate each other in an open and direct way.
2. Inform the facts.
3. Ask for help and connect
to networks or social groups.
4. Not to be discouraged.
5. Feel that you are part
of the solution.
The report also gives 10 recommendations to overcome the stigma of dementia:
1.
Educate the people about dementia.
2, Reduce the isolation of people with dementia.
3. Have a say to people with dementia.
4. Recognize the rights of the people with dementia as well as their carers.
5. Integrate people with dementia into their local communities.
6. Provide education about the care and help to formal and informal carers.
7. Improve the quality of care at home, and the care centers.
8. Improve training of health providers in dementia in the Primary Health Care.
9. Encourage the governments to create national plans to face dementia.
10. Carry out research
on how to approach stigma.
The
World Health Organization declared dementia in 2012 as a priority of worldwide
public health, and also implemented the Mental Health Gap Action Programme (mhGAP)
to overcome the gap in Mental Health;29,30,31 and its regional office,
the PHO, has conceived this illness as a priority in Mental Health. In
Cuba, we have been working on the implementation of a National Strategy for
the control of Alzheimer´s Disease and dementia syndromes, where we state
the need of participation of all sectors of the society, and make emphasis on
reducing the stigma on dementia, the early diagnosis in the primary health care,
and the protection of the rights of the elderlies with cognitive impairment.
The program conceives health
promotion and prevention of dementia; and the increase of the quality of medical
attention to patients through the training of personnel, the development of
research, and the training of carers.
CONCLUSIONS
It is indispensable to reduce the stigma that today exists towards dementia, and give more acceptance and support to people with this illness and their families in order to face the impact of this health problem on society. The increase of quality attention to people with dementia, the education of the people, the creation of favorable environments, the creation of social networks and social support, and the participation of all social sectors can reduce stigma towards people with cognitive impairment.
RECOMMENDATIONS
We recommend to develop research on mental illness stigma, particularly dementia, to set up strategies to overcome it.
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Received:
January 15, 2017.
Approved: March 27, 2017.
Rodolfo
Bosch Bayard. Universidad de Ciencias Médicas de La Habana. La Habana,
Cuba.
E-mail: rodolfobosch@infomed.sld.cu
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