Qualitative study exploring health professionals’ experiences concerning dementia in Mexico with a policy analysis perspective

doi:10.21203/rs.3.rs-4365783/v1

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Research Article

Qualitative study exploring health professionals’ experiences concerning dementia in Mexico with a policy analysis perspective

https://doi.org/10.21203/rs.3.rs-4365783/v1

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Background

Dementia has been declared a priority public health problem, however there still a need for policies to be put in place. Mexico, as a developing nation, has taken some policy actions but there still much to be done. In this paper, we analyze the experiences of service providers to people with dementia. This qualitative study identifies barriers and opportunities to promote policy change.

Methods

Data was collected through 30 in-depth interviews based on a semi-structured guide with health professionals - Geriatricians, Neurologists, Psychiatrists, Family Practitioners - who care for people with dementia, and researchers in health research institutions. For the analysis, the Policy Space framework was used.

Results

The care for dementia people is performed by medical specialists whose approach depends on their type of training. Some of the barriers identified are that care is provided in a fragmented manner depending on each institution, and people with dementia are arriving late to the health services. Opportunities found to be promoted in public agendas are early identification of cognitive impairment and leverage prevention of chronic diseases like hypertension and diabetes.

Conclusions

There is evidence for the need to take action, and various initiatives are available, but the challenge remains to put policies for the care of dementia syndromes on the public health agenda.

Dementia

policy

public agenda

public health

health professionals

Dementia is a syndrome characterized by cognitive disturbances that impact activities of daily living, with a high frequency of behavioral disturbances (1). Its etiology is diverse: of the more than 50 conditions that can cause it, Alzheimer's disease is the most frequent. The increase in the number of cases worldwide has been documented in recent decades, with over 57 million cases estimated globally in 2019 and an increase is expected to over 152 million by 2050 (2). However, there are controversial data of an apparent decrease in the prevalence of cases in North America and Western Europe, attributed to the success of social and public health interventions such as increased education, and chronic disease control in the ageing population (3). In Mexico, reported prevalence is around 8% (4, 5), although it may be increasing according to a recently published prevalence report(6). Regarding the estimated cost of care, in 2019, the worldwide cost exceeded 1300 billion dollars. More than half of that cost was covered informally, i.e. directly by the patients' families, a situation that is exacerbated in low- and middle-income countries (7).

The World Health Organization declared dementia a priority public health problem as long ago as 2012 based on dementia frequency, number of cases worldwide, increase in incidence, economic impact at a social level, and cost of patient care (8). In Mexico there have been isolated policy efforts for dementia care within public and private organizations (9). Some of the policy actions that have been put in place are the National Alzheimer and Other Dementias Plan in 2014, but with no budget allocated (10, 11). Researchers have worked to generate epidemiological evidence of the impact of dementias in our country(12–14) and made recommendations.

Despite the estimation of the magnitude of dementia in Mexico and some policy initiatives, there is still no national policy for the management of the disease. The latest study of dementia prevalence in Mexico concludes, “early or preclinical identification of dementia is important, in order to inform the patient and be able to implement measures to delay or prevent cognitive deterioration, or so that the individual can make plans and changes in their lifestyle for a future dementia” (6). Among the barriers to care for mental problems and dementias in the North American continent, including Mexico, are normalization of cognitive impairment as part of aging (9), outdated practices and frameworks, as well as fragmentation in the organization of services, which together prevent early screening, referrals and care (15, 16). While these systematic barriers are well documented, the experience of health professionals delivering services to dementia patients is not well known. In this study, we analyze the perspective of service providers to people with dementia to determine the need for policy in the health sector.

Through three dimensions for policy change -- context, public agenda and public policies – the research identifies barriers and opportunities to promote public agenda actions for the prevention and care of dementia syndromes.

An exploratory qualitative study was conducted through interviews with public and private health professionals. Two types of health professionals were interviewed. Medical specialists were those who in their clinical practice have treated or treat people who suffer or have suffered from dementia syndromes (Table 1A). The other health professionals interviewed were actors with relevant positions in a health institution (Table 1B). In-depth interviews were conducted based on a semi-structured guide, mainly with Geriatricians, Neurologists and Psychiatrists working in different States of the Mexican Republic, working in different institutions of the Mexican Health System working in various institutions of the Mexican Health System, and at different attention levels. In Mexico, the health system is organized into three levels of care: the first level focuses on primary care and is provided in health centers; the second level focuses on specialized care and offered in general or regional hospitals; and the third level, intended for highly specialized care and provided in highly specialized hospitals and national reference centers. These services are managed by different institutions, such as the IMSS (Mexican Social Security Institute), the ISSSTE (Institute of Security and Social Services of State Workers), the Ministry of Health, and others, each with its own infrastructure and population coverage. The specialists interviewed were initially identified by their position in a health institution, followed by snowball sampling to reach others. Thirty interviews were conducted between March and August 2022. The interviews lasted between 32 to 62 minutes. All interviews were conducted in Spanish, transcribed, and quotes selected translated into English for publication purposes.

Table 1

A. Specialists and other health professionals interviewed
Psychiatrists / psychogerontologists / neuropsychologist	8
Geriatricians	10
Neurologists	8
Others (primary care physician, administrative area, researcher)	4
TOTAL	30

Table 1

B. Mexican Health System institutions
Social Security (IMSS)	14
Public Services (MoH: INNCMSZ, INGer, INNN, etc.)	8
Social Security (ISSSTE)	4
Private	4
TOTAL	30

IMSS – Mexican Social Security Institute, MoH - Ministry of Health, INNCMSZ - National Institute of Nutrition “Salvador Zubirán”, INGer – National Institute of Geriatrics, INNN – National Institute of Neurology and Neurosciences, ISSSTE – Institute for Social Security and Services for State Workers.

Analysis and interpretation of information.

The Policy Space conceptual framework was used for the analysis. This conceptual framework, defined by Grindle and Thomas (17), focuses on the interrelationship between three dimensions for policy change: context, consideration in the public agenda, and the characteristics of public policies. Context indicates a pre-existing situation of the policy sectors and the characteristics of a given country, such as historical, political, and economic, which provide a margin of opportunity for change. Consideration of public agenda is the act of determining public priorities by political actors and is influenced by their perception of a specific problem situation as public and decision-making concerns. The characteristics of the policy form a bridge between what was decided and the consequences that follow.

To perform the analysis, the interview transcripts were entered into the NVIVO® program. Policy Analysis terminology was used for the generation of codes for NVIVO® and the interpretation of the information and analysis.

Using the information from the codes generated for NVIVO®, mental maps were created to interpret the information. The ideas or concepts mentioned most frequently by the interviewees were identified, and quotes that exemplify them were selected. In the case of the dimension of characteristics of public policies of the Policy Space, as public policies for dementia are scarce in Mexico, it was decided to understand the situation in the clinical practice of specialists who are caring for patients with dementia syndromes. The four aspects of clinical practice that were explored were: prevention, screening, diagnosis, and treatment of dementia syndromes. The results are presented below with reference to the three dimensions of policy change: context, consideration of clinical practice characteristics, and public agenda.

We found that for the prevention and care of dementia syndromes in Mexico, interventions are carried out in clinical practice in an isolated and fragmented manner. There is no adequate organization for dementia; the specialist who catches the patient treats them. To date, medical specialists of the second and third level of care – geriatricians, neurologists, psychiatrists - are diagnosing dementia syndromes late, in stages that they perceive as already difficult to do ‘anything meaningful’ for the patient. In the care and attention of dementia syndromes, interviewees mentioned a critical triangle: the patient, the family, and the medical providers. There are prevention or diagnosis protocols for the early onset of dementia syndromes, but only on the third level of care. The National Institutes carry out protocols, but protocols are established mainly for research purposes. The following results are a synthesis of the Policy Space analysis based on the 30 interviews conducted in 2022.

CONTEXT

The care of dementia syndromes with or without emphasis on dementia disease is carried out in clinical practice in an isolated manner. Patients already have the burden of disease and then come to health services to be treated. On the one hand, patients may come for regular care, and the doctors detect subjective memory complaints. On the other hand, patients may arrive when they already carry a disease burden of several years of pathology. As exemplified by one interviewee:

“Normally they [patients] come through the family doctor, and in that case, it is at both extremes; some come with straightforward memory complaints, like they forget things, and they are told to see a psychiatrist, because also... I don´t know if that is valid for all [public hospitals], but at least in my hospital, it is easier for them to have an appointment with a psychiatrist, which is closer, than with the neurologist. Therefore, for the family doctor, it is easier to refer to the psychiatrist than the neurologist. And there is the other extreme, in which they come after years of pathology. In which the family members have noticed that they had cognitive losses and that the person had memory failures and loss of functionality, and they had not paid attention to it until they had some... agitation, or because they were not sleeping or some other situation, or after a stroke or after a serious complication.” [IMSS, psychiatrist]

As explanations for why patients are arriving late to the health services, interviewees often mention normalization of the disease and lack of knowledge. Patients, family members, and health professionals not trained in dementia do not recognize cognitive decline as a problem; they normalize it as part of aging. One of the explanations is stigmatization, mentioning that there are three elements of stigma. The first is stereotypes. There is a generalized belief that the word dementia is associated with madness and unreasonableness. The second element is that prejudice is made where it seems to undermine religious faith; it can be shame, anger, or pain; the doctors themselves know the burden of pain they bring to families. The third element is discrimination, a directed action. For example, the patient must stay at home for his or her safety, which makes him or her “invisible”. So, it could be said that, on the one hand, the patient does not seek care. On the other hand, the doctors do not recognize or look for cognitive impairment. An interviewee exemplifies this:

“Unfortunately, 60% of health professionals have stigma. They have negative attitudes towards dementia, so they are not going to look for it either because they consider that it is something normal that happens to the elderly. It is still doubly serious because neither the patient looks for it, nor the doctor looks for it” [INGer, researcher]

Second-level care specialists – geriatricians, neurologists, psychiatrists – are the ones who mainly “find” or diagnose and treat dementia syndromes in the health sector. The interviewees state that it is not because they are medical specialists that they know how to address and care for dementia syndrome. The doctors’ interest in the practice has led them to seek training to care for dementia syndromes. As one interviewee reported:

“Only those who need to study the topic for the type of care they provide are where attention to dementia is focused” [IMSS, neurologist].

Most specialists report that the first time they heard about dementia syndromes was in medical school, but only an approximation without much detail. When they learn more about it is in Medical Residencies and specific training. They learn about dementia when they rotate through geriatrics or psychiatry hospital departments or institutes. When a specialist had specific training in dementia syndromes, the institutions that trained them were the National Institute of Neurology and Neurosurgery (INNN), the psychiatric hospital Fray Bernardino Alvarez (HPFBA), The National Institute of Psychiatry (INP), the National Institute of Geriatrics (INGer), and the National Institute of Nutrition and Medical Sciences Salvador Zubiran (INNNCMSZ) mostly. In other words, the most specific dementia training is being obtained by medical personnel either through a formal course or in medical residencies.

The type of approach to dementia syndromes depends a lot on the specialist's training, and in general, they do so in an isolated manner. Due to their training, geriatricians have a more comprehensive assessment of the patient, which includes the cognitive part and sensitivity to the social side of the patient, including the family and caregiver. Neurologists focus more on establishing the diagnosis, excluding other organic causes, based on neurological examination and ancillary diagnostic studies (e. g. neuroimaging studies). Other specialists mentioned that neurologists are the most difficult to interact with. Psychiatrists concentrate to a greater extent on addressing behavioral symptoms and are the ones the hospitalization and emergency sector calls first. Geriatricians and psychiatrists are more accustomed to considering family support. Interactional approaches with the patient are summarized in Fig. 1. Other health professionals caring for dementia syndromes are neuropsychologists, psychologists, nutritionists, social workers, and nurses. An interviewee mentions in this regard:

“We also have a lot of help with human resources with neuropsychologists, psychologists, and psychiatrists... or even before the pandemic we had social workers who helped us in this part of the family network, the social network.” [INNCMSZ, geriatrician].

Institutional care is similarly provided in a fragmented manner. Each health institution has its way, and in some cases, they have care interventions for dementia syndromes. At the public health institutions called Social Security [IMSS], innovation programs are being carried out in care for cognitive impairment, especially in GeriatrIMSS, and they have clinical practice guides for different types of dementia. At a separate public health network [ISSSTE], through the gerontological modules found in the Family Medicine Clinics, there is a geriatrician and a nurse to care for the comprehensive health of the elderly at the first level of care. The Ministry of Health (MoH) is more heterogeneous, with a greater gap in first-level care services. As one interviewee mentions:

“Health services are very focused on acute problems, but they are not focused on two important things about dementia: prevention and chronic care” [INNN, psychiatrist].

The National Institutes – the third level of care - are the ones that have a more established protocol for the detection and care of dementia syndromes. The protocols they carry out could encompass a first consultation where they do a battery of cognitive tests. The test depends on the Institution. They check whether the patient has already brought a cognitive test, or they may send them for laboratory and neuroimaging tests such as magnetic resonance imaging (MRI), depending on the suspicion of the type of cognitive impairment. In the second or third consultation, they make the diagnosis. These protocols are mainly established for research purposes. An interviewee exemplifies this:

“This awareness and this training, at least starting with our geriatricians, including the first-year residents, they have a talk with the neuropsychologists to know how to apply the battery that we have here in the hospital. Then that is a part of the protocol. That is very important right when the residents enter, because they do not know, they do not have the expertise, and they overlook many essential complaints.” [INNCMSZ, geriatrician].

SITUATION IN CLINICAL PRACTICES

Health professionals in different health institutions carry out different prevention, screening, diagnosis, and treatment interventions. Little is done directly for prevention of dementia syndromes; instead it is done indirectly to modify modifiable risk factors, especially the control of chronic diseases such as diabetes and hypertension. On screening, the interviewees mentioned that there are tools – Mini Mental and MoCA among the most mentioned – but several health professionals, although aware of them, do not use them as tools for patient referral or triggering treatment, especially at the first level of care. Among the most significant challenges for diagnosis is the normalization of the disease by patients, family members, and doctors. A challenge most mentioned is educating those at the first level of care so doctors can detect cognitive deterioration in its earlier stages. Specialists note that currently there is no pharmacological treatment available that prevents or cures dementia syndromes. Nonetheless, the focus of care is on the symptoms, and pharmacological and non-pharmacological interventions are carried out.

Prevention

The interviewees reported several prevention measures that they carry out in their clinical practice to avoid the development of dementia syndromes. The prevention measures can be grouped into two broad categories: the first related to cognitive health promotion and the second to the control of chronic diseases. In the cognitive health promotion category, actions that have to do with nutrition, physical activity, socialization activities and cognitive stimulation can be integrated. In the management of chronic diseases, they mainly mentioned the control of hypertension and diabetes mellitus. An interviewee exemplifies prevention measures by the following:

“In the case of primary care, it would be addressing the risk factors before the disease appears. Consider concomitant diseases… cardiovascular risk factors, various diseases... And in the case of secondary prevention, it has to do with stopping the disease in time and treating it in a timely manner, as well as the treatment of diseases that usually accompany dementia, especially if they are already developed…. for example, diabetes, high blood pressure, dyslipidemia, obesity, etc.” [IMSS, neurologist].

Several interviewees mentioned that they did not remember anything being done directly to prevent dementia syndromes in health institutions that care for patients, but the institutions did it indirectly. Those who reported that there are coincidences between prevention measures and the actions of the health sector said that it is indirectly through the prevention of cardiovascular risk factors. The focus is greater on the management of the burden of symptoms and diseases. An interviewee spoke about the preventive actions of the health sector:

“there are many activities that are done to take care of weight or blood pressure, glucose; I certify that they exist” [IMSS, geriatrician].

The public programs and institutions most frequently cited were related with the management of weight, blood pressure, and glucose, reporting that there is a program aimed at obesity, hypertension, and diabetes mellitus done by social security (IMSS). The gerontological modules done at social security (ISSSTE) were also mentioned, among others.

Screening

The most widespread opinion is that the tools for screening exist, but they are not widely disseminated or used by different health professionals. And one of the most mentioned aspects to consider when selecting the tool is knowing how to apply it according to the patient’s level of schooling, which is appropriate for our population. The most mentioned test was Mini Mental State Examination (MMSE), followed by Montreal Cognitive Assessment (MoCA). MMSE is used for different levels of education. MoCA is a more comprehensive test but is more sensitive in a more educated population. Other tests mentioned were the clock-drawing test, the five-words test, the Pfeiffer Short-Portable Mental State Questionnaire, and the Isaacs Set test.

The interviewees generally recognized that there are non-modifiable and other modifiable risk factors. They said it is useful to explore them because they support the diagnosis or point to intervention and reducing the probability of developing dementia syndromes. The most mentioned risk factors: age, genetics, cardiovascular and metabolic factors, low physical activity, tobacco or alcohol consumption, hearing loss, mental health that has to do with depression, low education, environmental pollution, obesity and poor diet, and poverty. A statement from an interviewee that illustrates the most mentioned or studied risk factors:

“there are twelve modifiable factors that are also very well established…And we know that they are the control of metabolic and heart diseases, hypertension, diabetes, obesity is also an important risk factor for developing dementia, low educational level, environmental pollution, hearing loss, depression, repetitive or severe blows to the head, lack of socialization, social isolation. And I'm missing some, but they are well defined and I would emphasize, above all, the cardiovascular issue as something very important” [MoH, psychiatrist].

One of the opportunities mentioned by interviewees for screening is the detection of cognitive impairment by first level doctors, who could detect and refer (Table 2). One of the initiatives mentioned is the MhGAP, a program to overcome Mental Health Gaps, developed by WHO, that the Ministry of Health is trying to implement as first efforts to be able to start identifying patients. However, interviewees reported that one of the barriers is the little time that family doctors dedicate to patients, 15 to 20 minutes. They also comment that trained nurses and social workers could administer the screening tests.

Table 2

Analysis of Policy Space of the current state of dementia prevention and care in Mexico
Policy Space	Barriers	Opportunities
Context	Patients are arriving late to the health services and treated in an isolated manner, the specialist who ‘catches’ the patient treats the ‘symptoms’	Prevention and care protocols in the third level of care
	Care is provided in a fragmented manner, each health institution has its own protocol or flowchart
Clinical practice characteristics	Lack of knowledge of patients, family and medical providers of dementia	Screening detection of cognitive impairment by first level health professional
	Access to neuroimaging studies and other laboratory studies	Prevention focus on chronic diseases: hypertension, diabetes, obesity
Public agenda setting	No legal mechanisms that give continuity to policy initiatives, such as budget	Some actors and policy initiatives have made the dementia issue visible

Diagnosis

One of the greatest challenges of care mentioned by those interviewed is the under-diagnosis and late diagnosis of dementia syndromes. In general, training is needed in relation to neurosciences as one interviewee exemplifies:

"it involves a conceptualization issue, given that they are diagnoses that require having an index of suspicion and that specific tools must be used, since of course the gap in the cases and the occurrence of the diagnosis is wide” [IMSS, neurologist].

In addition, they reported that early diagnosis is difficult to make, and clinicians are able to see it clinically when the symptoms are more advanced.

The main difficulties in diagnosis mentioned are the lack of knowledge and access to neuroimaging studies. The lack of knowledge or information is related to the challenge where cognitive decline is normalized as part of aging. Normalization of memory loss, or complaints of forgetfulness both by the population and by health professionals not specialized in dementia such as general practitioners, cardiologists, internists, suggests that early diagnosis is not performed. As one interviewee stated;

“that is part of some of the normalization of pathological aging, where everyone believes that the elderly have to be malnourished, depressed, toothless and demented, the four D's” in Spanish (desnutrido, deprimido, desdentado y demenciado). There are doctors neurologist specialists, internists... who say don't worry, it's typical of age” [INNN, psychiatrist]

Regarding the difficulty of access to neuroimaging studies, the interviewees commented that the vast majority of hospitals do not have an MRI, but they do have computed tomography (CT). Magnetic resonance imaging, specialists say, is superior to tomography in terms of elucidation. If they have the possibility of sending for MRI, these studies are performed far from where the probable diagnosis is made.

Among the facilitators for the diagnosis of dementia syndromes, they mainly mention more human resources and the timely identification of cognitive impairment at the first level of care. Interviewees said that having greater availability of human resources would facilitate a timely diagnosis: geriatricians and neuropsychologists were mainly mentioned, a multidisciplinary approach, and integration of communication between specialists. Another facilitator would be medical training and awareness of health personnel so that those in the first level of care can detect cognitive deterioration in earlier stages. An interviewee exemplifies this:

“in the first instance, yes, have well-trained first contact personnel so that they can quickly make the corresponding referrals and not have to wait two, three months and say: no, I can't handle this anymore now I need to make the referral” [ISSSTE, administrative area]

Health policy actions were also mentioned by interviewees as facilitators. Policy actions were identified, such as establishing clinical practice guidelines for accessible diagnosis and treatment and making a structural proposal with epidemiological analysis of demand for care to create infrastructure that brings the diagnosis closer to the person. They advised working to ensure that the focus of services is not only on acute care, but also on prevention and long-term care.

Treatment

The doctors interviewed regarding treatment focused on the burden of symptoms through two aspects of interventions: pharmacological and non-pharmacological. Specialists stated that currently there is no pharmacological treatment that prevents or cures dementia syndromes and that, so far, treatment has had modest results. What is achieved in some patients and not in all is to slow the deterioration, and increase the training and reassurance of family members and/or caregivers. In the treatment. They report that they treat symptoms from three aspects: cognitive, psychological and behavioral. For this, they mentioned antidementia, antidepressants and antipsychotic medications in the pharmacological aspect. And in the non-pharmacological aspect, there is a heterogeneity of interventions that are carried out, the most mentioned being accompaniment, physical activity, social activity and cognitive stimulation.

In pharmacological treatment there is a perception that research is very behind, very far from developing an effective treatment to cure dementia. Treatment is focused on neuropsychiatric symptoms, which generally begin with antidepressants, and antipsychotics and anxiolytics are left for a later time. What worries the doctors most is addressing depression and insomnia. There are four medications available within anti-dementia: rivastigmine, galantamine, donepezil and memantine. In public institutions, the availability of treatment is perceived as limited, as the budget in hospitals goes to other pathologies such as oncology, surgical situations, etc. However, they mention that it is better to have something than not, especially for the peace of mind of the family. The interviewees reported that the availability of anti-dementia medications depended on the institution and each institution had only one out of the four or two out of the four medications available. For example, the social security IMSS does not generally have anti-dementia drugs, but some hospitals have already managed or are managing to have some available.

Interviewees conceive pharmacological treatment as very limited and inefficient, but it is important to teach pharmacological safety. There is heterogeneity in the prescription of medications, as exemplified by an interviewee:

“there are many myths about the effectiveness of medications. The attention to psychological and behavioral symptoms is poorly systematized, which is a good part of the challenge of treatment” [IMSS, neurologist].

Another problem mentioned is polypharmacy -- they want to treat everything -- without prioritizing. On the one hand, the quality of treatment needs to be improved and, on the other, the quantity of medications used needs to be reduced. However, they do report having available various antidepressant and antipsychotic medications in the different institutions, from the first level of care.

In non-pharmacological treatment, the broad perception is that care is poor. Interviewees report that dementia should unite several specialties, but in practice it does not happen, and everyone makes their effort from where they can. The following statement from an interviewee exemplifies this by saying:

“…we are very bad. Maybe dementia is like an example of what a disease is like that should unite many specialties. And in practice what we do: psychiatry says it's up to neuro and neuro says it's up to psychiatry, right? And at least in psychiatry we don't have cognitive rehabilitation programs or memory workshops or memory clinics, things like that that allow us to help in a non-pharmacological way. And much less self-help groups for family members for managing the emotions of family members. So if we do it, it is up to each person based on their efforts, based on what we believe is correct. There isn't one, at least not right now... structure of this precisely of non-pharmacological treatment” [IMSS, psychiatrist].

Within the heterogeneity of non-pharmacological interventions, the most mentioned approaches of those practitioners who take action from their isolated effort are: accompaniment of the patient and family, considering the care of the caregiver, and neuropsychiatric management to mainly treat depression. For example, when they explain to the family that the treatment is not curative, but it will give a better quality of life, it is something they take appropriately. Therefore, the most mentioned in non-pharmacological treatment is related to the support and management of the family. When patients are diagnosed, they mention that they and their family must be informed of the prognosis, and what must be done. A lot of work is done with the family. Psychoeducation is given because they go with the hope that the disease will be cured and there is less denial when the doctor tells them otherwise. An interviewee exemplifies it in the following way:

“for us it is fundamental, in fact, in some cases it is the only thing that could be counted on. Education of the patient and family is fundamental. In terms of this, we have neuropsychologists, we can give him rehabilitation by calling him in some way, although we know that progressive dementia is not rehabilitable, but if they have a follow-up program with neuropsychology, the other part that would be equally important is the management and education of the family member and the patient. We can only do it in the follow-up consultations” [ISSSTE, neurologist].

Another of the interventions mentioned is cognitive stimulation. Some mention it within daily activities and others with the support of a health professional. Among the recommendations for daily activities, they mentioned having a routine, calendar, learning something new, etc. Others do mention going to a psychogeriatrician or neuropsychologist to carry out cognitive stimulation exercises. Among other recommendations of interventions are occupational therapy and psychological support. An interviewee tells us about the social federal security (ISSSTE) gerontological modules:

“They are mainly made up of the doctor who has knowledge about gerontology, has at least a diploma in the subject, has support nursing staff within the module, and the module also has a functional support area, where rehabilitation and also therapy are basically provided to reduce pain issues, especially. This area of functional support is usually also staffed by trained nurses, physiotherapists or rehabilitators. Furthermore, the gerontological module model contemplates a multidisciplinary group that includes psychology, nutrition, physical activator, social work and any other discipline that the unit where the gerontological module is located has” [ISSSTE, administrative area].

Another intervention mentioned is promoting social activity and social involvement, in which they suggested care homes and day care centers such as Social and Health Action Center for the Elderly, (CASSAAM for its acronym in Spanish). Regarding day homes, some interviewees said they perceived that they help social involvement but that they are not well established. This is what an interviewee reported:

“something that curiously here in Mexico is not very established or perhaps because of our society, there are not many care homes, at least during the day, where they also carry out physical therapy, coexistence therapy, anti-delirium therapy, all of this, those are very good, the truth is to me. But, well, the family thinks that it is like abandoning them perhaps, and they want to take care of the patient when in reality they seem like very good options to me, at least the ones of the day so that they leave the patient and, well, in the afternoon the patient is with his family, and the family is not in a burnout. That is also important for the caregiver, to be taking care of the caregiver” [MoH, neurologist] and another interviewee mentioned “and there is even a CASSAAM center for older adults, which focuses on this type of population at least in the Mexican Institute. The problem is that most of these personnel or these centers are now centralized in Mexico City” [IMSS, geriatrician].

PUBLIC AGENDA

There is no generalized perception of the importance of dementia syndromes as a public problem in Mexico. Some actors and some public policy initiatives and civil society movements have made the issue visible. However, it seems these initiatives and movements continue to be insufficient to highlight dementia syndromes as a public health problem. The available public policy documents that have been identified are scarce and it seems that the documents have expired, or there are no legal mechanisms that give them continuity, such as budgeted economic resources. However, it seems that the issue is currently advancing with initiatives and programs directed at some public health institutions.

Among the actors mentioned by the interviewees who are or have been pushing to make visible the issue of dementia syndromes in Mexico are the National Institutes of Health (third level of care health) and other civil organizations such as the Mexican Alzheimer's Federation, whose main task is to coordinate and promote the work of several Alzheimer's associations in the country and the Dementia and Friends movement.

Among the public policy actions most mentioned by those interviewed were Action Plan for Alzheimer's and other dementias published in 2014 and the ISSSTE gerontological modules in charge of providing gerontological care. Another initiative reported as underway is the IMSS comprehensive care protocol. However, interviewees emphasized that that for these initiatives to last over time, it is important that they have a budget, have a certain autonomy, and a regulatory level where there is supervision.

“One of the main problems in the IMSS is that there is a lot of talk about the number of users served, but there is little emphasis on quality indicators for disease care” [IMSS, neurologist].

At an international level, the World Health Organization (WHO) recognizes dementia syndromes as a public health priority, where the burden of the disease not only translates into health losses for the patient, but also brings with it a burden of care, which falls on families, caregivers and the health system. Current initiatives such as the IMSS comprehensive dementia care protocol, ISSSTE gerontological modules, the Dementia Friends movement, and National Institutes of Health that carry out research and teaching are promoting the issue of dementia syndromes in Mexico, but they have been not sufficient to transform, or see a real change, in the country's health policy actions.

The overall results indicate that current interventions in clinical practice for dementia prevention and care in Mexico are done by medical specialists and each health institution has its own protocols. Each medical specialist has their own type of approach for dementia care depending mainly on their training. Specialists mentioned that there is a fragmented health system, in which is difficult for individuals to have access to organized or integrated care. People with dementia are arriving late to the health services. Much can be done at policy level about prevention and by leveraging chronic diseases control through decreasing hypertension, diabetes and obesity. For those with dementia, policy actions around a comprehensive care protocol with an early screening at 1st level of care were recommended.

Dementia is still a syndrome that lacks prevention and care. To date, the burden is carried by patients, family carers and medical specialists. Medical specialists who deal with dementia patients mentioned the need for integration of dementia services; there is a lack of integration of care for patients. There are a variety of approaches by medical specialists and institutions that should be integrated. This finding goes in line with a previous review which mentioned the need of integration in dementia services at different service levels covering prevention, treatment and care (18). Implementation of the WHO “Seven-stage model for planning dementia services” is proposed (8)

There is an opportunity to bring initiatives of early stage detection of cognitive impairment at different levels of care. Some interviewees in this study mentioned the Mental Health Gap Action Programme (MhGAP), where the intention is to train health professionals, not exclusively physicians, to do screening. López Ortega et al(9) identified this as a specific recommendation for future actions on dementia care to improve care for older adults at primary care. Actions at primary care levels such as routine use of cognitive performance measures, reduction of dementia risk factors and strengthening health promotion are needed. These actions are in line with one of our opportunities: screening detection of cognitive impairment by first contact health professionals within primary care. Even in some developed countries dementia is still a disease that lacks screening, “A survey of general practitioners (GPs) referrals in UK revealed that only 20% of people had cognitive examinations before primary referral to specialist memory services, of which 37% were ultimately diagnosed with dementia. Therefore, early screening and screening for dementia before diagnosis are crucial” (18).

Policy actions in the overall findings suggest being oriented to cardiovascular health and taking advantage of prevention and care research protocols to improve decision making. Being ambitious about prevention is in accordance with the Lancet Commission, in which policy should address high risk groups to improve vascular health and physical, social and cognitive activity(19). Actual prevention and care research protocols at the third level of care in Mexico can be leveraged. It would take into consideration the gap between what is believed to be needed in third level care settings and what could be feasible in the medium and short term at a community level, i.e. at the first level of care. Increased emphasis on public health actions and care at the community level would solve an important gap because currently this is very centralized. Instead, ensuring that at community care level, a general practitioner who suspects cognitive impairment is able to identify it and refer it to be diagnosed and treated in a nearby general hospital would be advantageous rather than as now where the majority are referred to a tertiary care institution. It is important that the general practitioner knows the most frequent dementias that have the most common causes and is able to identify them and provide support to the patient and caregivers. This research provides evidence to propose policies to support people suffering from dementia in a Low and Middle Income Countries, where dementia represents a challenge due to the heterogeneity of the populations and socioeconomic disparities.

Strengths and limitations

The main strength of this study is the analysis of the different stories from health providers serving dementia patients. Therefore, it enabled us to consider a wide set of variables and perspectives that contribute to the understanding of the current dementia health care system, including evaluating prevention, screening, diagnosis and treatment interventions. With this at hand, the recommendations for the currently available efforts for dementia health care, as well as for new policy actions, include the consideration of caregivers’ experiences from different health institutions and the provision of different levels of care, including first, second and third tier.

Unfortunately, we have not overcome the limitation of the centralization of perspectives since we had eight interviews not from Mexico City, but we feel that we are offering a panoramic view at the inter-institutional level. The centralization tend to be in Mexico City therefore we do not present the variation in the country.

Knowledge about clinical practice experiences of health care providers who care for people living with dementia can improve the understanding of prevention and care of dementia syndromes. In this paper, we have identified barriers and opportunities with a policy perspective to find better ways to support and treat people with dementia in Mexico.

Barriers, including late diagnosis and fragmented health services make it difficult for individuals to have access to an organized care protocol. Amongst the many opportunities found, early screening by primary care health professionals is an area of opportunity in detection and prevention. Action is needed since Mexico will be facing the challenge of an increase demand for care services, and there is evidence that very simple measures can help to delay the progression of dementia in patients with chronic diseases like hypertension and diabetes. This study provides evidence of the magnitude of the dementia problem and the various initiatives that have been put in place, but we still have a challenge to put dementia policies on the public health agenda.

Ethics approval and consent to participate

The research was previously approved by the Research Ethics Committee of the National Autonomous University of Mexico [FM/DI/070/2021] and each human participant gave a verbal consent to participate.

Consent for publication

All of the authors listed consent for publication.

Availability of data and materials

Data and materials are available upon request.

Competing interests

GC, LP, LD reports to National Autonomous University of Mexico during the conduct of the study. IA reports other from National Institute of Neurology and Neurosurgery. LD reports to Biogen Laboratory.

Funding.

This work was supported by the Biogen Laboratory Developments LLC.

Authors' contributions

LD directed the research and reviewed the manuscript critically. GC conducted the research, complied data, drafted the manuscript and coordinated manuscript revisions. IA provided insight into analysis and discussion and reviewed the manuscript critically. LP reviewed the manuscript critically.

Acknowledgements.

We would like to thank Dr. Humberto Medina and Dr. Ana Luisa Sosa for their advice in the selection of the sample and Alberto Gómez for the transcription and helping in the analysis. We would also like to thank Dr. Karen Englander an English speaking science editor who helped with language editing.

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No competing interests reported.

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Qualitative study exploring health professionals’ experiences concerning dementia in Mexico with a policy analysis perspective

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