12
views
0
recommends
+1 Recommend
1 collections
    0
    shares
      • Record: found
      • Abstract: found
      • Article: found
      Is Open Access

      Descripción de la Carga de Cuidado de una familia con un anciano en riesgo de demencia Translated title: Description of the Care Burden for a family with an elderly risk of dementia

      research-article

      Read this article at

      Bookmark
          There is no author summary for this article yet. Authors can add summaries to their articles on ScienceOpen to make them more accessible to a non-specialist audience.

          Abstract

          RESUMEN: Introducción: La demencia es una de las principales causas de dependencia entre los adultos mayores a nivel mundial y tiene un impacto físico, psicológico, social y económico, especialmente en sus familias. El reconocimiento temprano de la carga del cuidado de los ancianos con riesgo de demencia es importante para prevenir el deterioro. Objetivo: Este estudio tiene como objetivo obtener una visión general de la carga de cuidado de los ancianos en riesgo de demencia en la comunidad. Métodos: Este estudio descriptivo involucra una población de todas las personas mayores que viven con sus familias en el área de Yakarta con una muestra aleatoria de 168 encuestados. El instrumento de tamizaje para modificar la carga de cuidado de las familias consta de 21 ítems. Resultados: La mayoría de los ancianos están en riesgo de demencia, representando el 72%, el 73,2% tiene una enfermedad crónica y el 73,8% todavía está haciendo ABVD de forma independiente. Además, el 58,3% de las familias tienen una baja carga de cuidado. Conclusión: La sobrecarga vivida por los ancianos y sus familias influye en su calidad de vida. Se espera que las familias con miembros mayores continúen mejorando y manteniendo su calidad de vida manteniéndose activas y productivas para satisfacer sus necesidades y placeres.

          Translated abstract

          ABSTRACT: Introduction: Dementia is one of the leading causes of dependence among the elderly worldwide and has a physical, psychological, social, and economic impact, especially on their families. Early recognition of the caring burden for the elderly at risk of dementia is important to prevent deterioration. Objective: This study aims to obtain an overview of the care burden for the elderly at risk of dementia in the community. Methods: This descriptive study involves a population of all the elderly living with their families in the Jakarta area with a random sampling of 168 respondents. The screening instrument for modifying the care burden of families consists of 21 items. Results: Most elderly are at risk of dementia, accounting for 72%, 73.2% have a chronic disease, and 73.8% are still independently doing BADL. Furthermore, 58.3% of the families have a low burden of care. Conclusion: The burden experienced by the elderly and their families influences their life quality. It is hoped that families with older members continue to improve and maintain their quality of life by remaining active and productive in fulfilling their needs and pleasures.

          Related collections

          Most cited references29

          • Record: found
          • Abstract: found
          • Article: not found

          Leisure activities and the risk of dementia in the elderly.

          Participation in leisure activities has been associated with a lower risk of dementia. It is unclear whether increased participation in leisure activities lowers the risk of dementia or participation in leisure activities declines during the preclinical phase of dementia. We examined the relation between leisure activities and the risk of dementia in a prospective cohort of 469 subjects older than 75 years of age who resided in the community and did not have dementia at base line. We examined the frequency of participation in leisure activities at enrollment and derived cognitive-activity and physical-activity scales in which the units of measure were activity-days per week. Cox proportional-hazards analysis was used to evaluate the risk of dementia according to the base-line level of participation in leisure activities, with adjustment for age, sex, educational level, presence or absence of chronic medical illnesses, and base-line cognitive status. Over a median follow-up period of 5.1 years, dementia developed in 124 subjects (Alzheimer's disease in 61 subjects, vascular dementia in 30, mixed dementia in 25, and other types of dementia in 8). Among leisure activities, reading, playing board games, playing musical instruments, and dancing were associated with a reduced risk of dementia. A one-point increment in the cognitive-activity score was significantly associated with a reduced risk of dementia (hazard ratio, 0.93 [95 percent confidence interval, 0.90 to 0.97]), but a one-point increment in the physical-activity score was not (hazard ratio, 1.00). The association with the cognitive-activity score persisted after the exclusion of the subjects with possible preclinical dementia at base line. Results were similar for Alzheimer's disease and vascular dementia. In linear mixed models, increased participation in cognitive activities at base line was associated with reduced rates of decline in memory. Participation in leisure activities is associated with a reduced risk of dementia, even after adjustment for base-line cognitive status and after the exclusion of subjects with possible preclinical dementia. Controlled trials are needed to assess the protective effect of cognitive leisure activities on the risk of dementia. Copyright 2003 Massachusetts Medical Society
            Bookmark
            • Record: found
            • Abstract: found
            • Article: found
            Is Open Access

            Living with dementia: increased level of caregiver stress in times of COVID-19

            COVID-19 pandemic in Argentina has affected the care of older adults with dementia deeply. Our objective was to study how the obligatory social isolation affected stress caregiver and burden of care of family members of subjects living with dementia in the community after the initial 4 weeks of quarantine in our setting. We did a questionnaire survey among 80 family caregivers of persons with Alzheimer’s disease (AD) or related dementia collected on April 2020. We designed a visual analog scale to test the level of the burden of care. Characteristics of people with dementia and their caregivers were analyzed with descriptive (mean, standard deviation, frequency and percent) and inferential statistics (chi-square test). The sample included older adults (mean age: 80.51 ± 7.65) with different stages of dementia. Family was the primary provider of care in 65%. Overall, COVID-19 confinement increased stress caregiver independently of the dementia stage, but those caring for severe cases had more stress compared to milder forms of the disease. Other findings were that half of the subjects with dementia experienced increased anxiety and that most family members discontinued all sort of cognitive and physical therapies. Family members’ main concerns were for severe dementia cases, fear of absence of the paid caregiver during the epidemic, and for mild cases fear of spreading the disease while assisting patients with instrumental activities. A partnership between departments of public health, care workers and families must be planned to guarantee continuity of care during these unique COVID-19 times.
              Bookmark
              • Record: found
              • Abstract: found
              • Article: not found

              FACING DEMENTIA DURING THE COVID ‐19 OUTBREAK

              1 INTRODUCTION The ongoing coronavirus disease 2019 (COVID‐19) pandemic is having a profound impact on people with dementia. A relevant proportion of COVID‐19–related deaths have probably occurred in patients with dementia. 1 Dramatically high fatality rates have been observed worldwide among residents of long‐term facilities, 2 many of them likely experiencing dementia. In addition, the restrictive measures implemented to tackle the spread of the outbreak still adversely affect patients and their caregivers because they have been asked to isolate from their regular support systems and change their routine. Social distancing and self‐isolation have probably limited the use of those strategies and general rules (e.g., distraction, stimulation, and social interaction) that are routinely adopted to manage some of the dementia symptoms (e.g., neuropsychiatric symptoms) and attenuate the caregiver's burden. 3 The prolonged self‐isolation may have contributed to generate feelings of loneliness, behavioral modifications and disruptions, and acute events (e.g., agitation and delirium) requiring therapeutic changes or even hospitalization. 4 Moreover, the emerging and evolving health needs and priorities of patients and caregivers have not been adequately met. In fact, many scheduled appointments for routine clinical checkups at dedicated services have been canceled and postponed because of the COVID‐19 outbreak. Thus, we sought to explore whether the clinical conditions of patients with dementia and cognitive disturbances have changed during the pandemic to gain insights on how to rearrange the provision of care in the postemergency phase. 2 METHODS A telephone survey of a sample of patients attending the Center for Cognitive Disturbances and Dementia, Department of Human Neuroscience, Sapienza University of Rome (Italy), was performed. All consecutive patients performing their last clinical assessment in the 2 months preceding the local introduction of restrictive measures for COVID‐19 (i.e., March 10, 2020) were considered for the present analysis. The survey was conducted by the medical staff from April 9, 2020, to April 15, 2020, as part of standard clinical routine and referred to the first month of lockdown. A standardized set of questions was asked to subjects with mild cognitive deficits or to the caregivers of patients with dementia to assess perceived changes in their clinical conditions that occurred in the previous 30 days. Patients and caregivers (or legal guardians when necessary) had already provided written informed consent for allowing the utilization of the collected data for research purposes (as required by the “Policlinico Umberto I" University Hospital of Rome). 3 RESULTS A total of 139 subjects (women = 60.4%; median age = 79.0 years) completed the survey (response rate = 85.8%). Among them, 96 (69.1%) were diagnosed with dementia, whereas 43 (30.9%) had milder cognitive disturbances (Table 1). None of the participants had received a laboratory‐confirmed diagnosis of severe acute respiratory syndrome coronavirus 2 infection, and only five of them reported having experienced flu‐like, self‐limiting symptoms. Most of patients (i.e., 66.2%) were reported to have fully adhered to the recommended restrictive measures (e.g., social distancing) and safeguard procedures (e.g., washing hands and wearing masks). Table 1 Characteristics of Participants and Reported Clinical Changes Variable Dementia (n = 96) MCI or SCD (n = 43)a Demographics Age, y 80.5 (76.0–85.0) 73.0 (65.5–77.5) Female sex 53 (55.2) 31 (72.1) Survey respondent Patient 2 (2.1) 40 (93.0) Caregiver 94 (97.9) 3 (7.0) Clinical changes Cognitive improvement 1 (1.0) 2 (4.7) Cognitive worsening 34 (35.4) 10 (23.3) Functional improvement 0 (0.0) 0 (0.0) Functional decline 18 (18.8) 1 (2.3) Improvement of NPSs 2 (2.1) 3 (7.0) Worsening of NPSs 55 (57.3) 21 (48.8) Changes in pharmacological therapies Any therapeutic adjustment 9 (9.4) 1 (2.3) New pharmacological treatment 2 (22.2) 1 (100) Dosage increase of ongoing therapies 5 (55.6) 0 (0.0) Dosage reduction of ongoing therapies 2 (22.2) 0 (0.0) Caregiver burden Increased caregiver stress 47 (48.5) 1 (33.3) Note: Data are shown as median (interquartile range) or number (percentage). Abbreviations: MCI, mild cognitive impairment; NPS, neuropsychiatric symptom; SCD, subjective cognitive decline. a MCI: n = 37; SCD: n = 6. Overall, a worsening of cognitive symptoms, particularly of memory and orientation abilities, was reported in nearly one‐third of the sample (i.e., 31.7%) (Table 1 and Figure 1). A functional decline was noticed in 19 patients and was mainly described in terms of reduced levels of independence in personal care and housekeeping. More than half of patients (i.e., 54.7%) experienced the worsening or the onset of behavioral disturbances, with agitation/aggression, apathy, and depression representing the most commonly observed manifestations. Such clinical changes were most commonly observed in patients with overt dementia compared with respondents with milder cognitive deficits. Of note, an improvement of cognitive and neuropsychiatric symptoms was described in some cases. Figure 1 Clinical changes reported in the study population. Data are shown as percentages. In 7.2% of patients, the observed clinical changes required adjustments of the ongoing pharmacological therapy or the introduction of new treatments (mostly antipsychotics). Half of caregivers (i.e., 49.5%) reported higher levels of stress and exhaustion compared with the previous month. 4 DISCUSSION These findings, although obtained in a limited study population and based on the perceptions of patients and caregivers, suggest that the COVID‐19 outbreak is indirectly affecting the clinical conditions of people living with dementia and cognitive disturbances. Their multifaceted health needs, largely neglected in the emergency phase of the pandemic, might have silently changed and become even more challenging. Accordingly, caregivers might have been exposed to critical levels of stress because they had to manage, with little external support, complex disturbances. Special support is urgently needed for patients with dementia and their caregivers during critical events. Dedicated services and facilities, often suspended or reduced in their activities in a period of crisis, must be restored as soon as possible and get organized to deal with the high demand. In the meanwhile, alternative forms of support should be enforced and delivered, taking inspiration from previous promising experiences. 5 Regular contacts, performed by physicians and professional nurses (also with the support of novel technologies), can allow us to monitor the conditions of patients and timely identify urgent situations to prioritize. Self‐help guidance and resources should be disseminated to families and caregivers to improve the at‐home management of patients and attenuate stress. 3
                Bookmark

                Author and article information

                Journal
                eg
                Enfermería Global
                Enferm. glob.
                Universidad de Murcia (Murcia, Murcia, Spain )
                1695-6141
                2023
                : 22
                : 69
                : 426-447
                Affiliations
                [1] West Java orgnamePoltekkes Kemenkes Jakarta III Indonesia raden.maryam@ 123456poltekkesjakarta3.ac.id
                Article
                S1695-61412023000100014 S1695-6141(23)02206900014
                10.6018/eglobal.537891
                e215bedd-358a-482d-b40d-4658b6f6ad1e

                This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 International License.

                History
                : 03 September 2022
                : 01 October 2022
                Page count
                Figures: 0, Tables: 0, Equations: 0, References: 30, Pages: 22
                Product

                SciELO Spain

                Categories
                Originales

                risk of dementia,riesgo de demencia,adulto mayor,carga de cuidado para la familia,elderly,of care for family

                Comments

                Comment on this article