Specialists from the National University of Colombia (UNAL) have just presented the results of a study on dementia that they carried out over five years, considered the most extensive in the country.
The research, which included 275 people (28 patients with dementia, 208 caregivers and 39 healthcare professionals) from Barranquilla, Santander, Bogota, Antioquia, Valle del Cauca, Tolima and La Guajira, found that in the country mental health is the main need, but it continues to remain invisible.
The finding exposes a care network marked by emotional overload, family exhaustion and low institutional support. The research was carried out with the participation of patients, caregivers and healthcare personnel, the UNAL News Agency reported.
The focus of the research, led by neurologist Rodrigo Pardo, full professor of Neurology and Clinical Epidemiology at the Faculty of Medicine, together with Public Health doctors Sara Julieta Romero Vargas and Marisol Moreno Angarita, was on those who sustain daily care and face the emotional, economic and physical consequences of this condition.
“Around each patient there are more than two caregivers and healthcare professionals involved, which means that many more people are affected by this pathology,” explained Pardo, quoted by the UNAL News Agency.
The results of this five-year investigation were collected in the book “The Forgetting of Those Who Forget: What Do People With Dementia Need in Colombia?”, presented at FILBo 2026.
Dementia is a group of disorders that affect memory, language, judgment and the ability to carry out everyday activities. Alzheimer’s is its most frequent form, accounting for 65% of cases on average. But the impact is not limited to the person who receives the diagnosis.
Mental health, the most urgent need
The study began between 2020 and 2021, in the middle of the Covid-19 pandemic, which forced part of the interviews to be moved to virtual formats, especially with people over the age of 70.
“We went to each of the cities and accompanied the participants in their everyday spaces. We also conducted individual contacts and focus groups. We wanted to gather as much information as possible,” the researcher recalls.
To identify the main needs, the team used tools such as the Zarit scale, which measures caregiver burden, and the Yesavage Geriatric Depression Scale, focused on detecting depressive symptoms.
The results showed that 96.4% of participants considered mental health support and food assistance to be priorities. They were followed by high-quality medical care (89.3%), home adaptation and access to services (82.1%), and psychological support (78.6%).
Concerns related to mobility, legal procedures, employment and access to continuous care also emerged.
“What happens around dementia, especially among those who care for patients, continues to remain largely invisible. There are deeply neglected emotional and spiritual needs,” Pardo points out.
Expectations regarding the healthcare system point in the same direction: 96% of participants requested priority access to specialists and therapies, while 89.3% demanded basic supplies for daily care. Added to this were support for transportation, nutritional supplements and support groups.
“It is well known that dementia not only impacts in a devastating way those who suffer from it, but also their caregivers and relatives. Despite this, this disease has had little visibility on the Colombian public agenda,” he warns.
Women sustain caregiving
One of the clearest findings has to do with those who assume caregiving responsibilities: 87.4% of caregivers are women and many devote more than 40 hours per week to this work, generally unpaid and with direct impacts on their health, job stability and personal life.
Although a large portion of them have university education, this does not improve their experience with the healthcare system. “Despite their academic training, all faced the same difficulties related to bureaucracy and navigating the system,” the study notes.
In addition, many female caregivers must reduce work hours, reject promotions or completely reorganize their routines in order to care for relatives with dementia.
“The lack of adequate rest periods, added to the demands of prolonged care, increases stress and can lead to physical and emotional exhaustion,” the document warns.
Regarding significant territorial gaps, it became evident that while most participants belonged to the contributory healthcare regime, in regions such as La Guajira more precarious conditions and affiliations with the subsidized system predominated.
A country that is aging without being prepared
In addition to describing the current situation, the research proposes recommendations for health authorities and the care system, including the creation of specific policies on dementia, comprehensive care routes, community and home-based care modalities, and economic and psychosocial support strategies for caregivers.
One of the most sensitive points is the recognition of caregivers. Although the Care Law of 2022 represented progress by recognizing this work and opening the door to economic benefits, researchers believe its implementation remains insufficient.
“Unfortunately, the regulatory development has not managed to grant caregivers the status they require in order to be remunerated within the system,” explains Professor Pardo.
The study leaves on the table a reality that is difficult to ignore: Colombia is aging faster than the country seems willing to acknowledge. In just over 30 years, the percentage of people over 65 years old rose from 4.1% to 8.7%, and projections indicate that the growth will continue accelerating.