End-of-life care of people with dementia in Latin America: A qualitative analysis
Background:People with dementia experience a gradual decline in cognitive and physical functioning, which makes the organization of end-of-life care in the right place challenging for them, their caregivers, and healthcare providers.Objectives:This study aims to understand the challenges of organizing end-of-life care for people with dementia in Latin America.Design:The study used a qualitative design.Methods:Two focus groups, one individual interview, and one dyadic interview were conducted with 15 stakeholders from 12 Latin American countries: Argentina, Brazil, Chile, Colombia, Costa Rica, Ecuador, El Salvador, Guatemala, Mexico, Paraguay, Peru, and Uruguay. Thematic analysis was used to identify patterns within the data.Results:Although there were differences between and within the countries, end-of-life care was often affected by the socioeconomic contexts, which represent barriers for access to healthcare services; under-tapped informal caregivers’ potential; societal norms and cultural expectations around care and informal caregiving; the dementia-trajectory itself; and an inadequate assurance of policies, skilled workforce, and services.Conclusion:In Latin America, end-of-life care for people with dementia has many challenges for those directly affected, caregivers, and the wider healthcare system. Routes to improvement are needed to ensure that all people with dementia and their families can navigate the end-of-life process with adequate and equitable support.
- Research Article
5
- 10.1016/j.exger.2023.112093
- Jan 18, 2023
- Experimental Gerontology
Central obesity and elevated blood pressure in middle life are associated with physical and cognitive impairment in later life: A retrospective design with repeated measures
- Research Article
9
- 10.1016/j.gerinurse.2022.12.015
- Mar 1, 2023
- Geriatric Nursing
Self-reported pain and fatigue are associated with physical and cognitive function in middle to older-aged adults.
- Research Article
3
- 10.1093/gerona/glad274
- Dec 10, 2023
- The journals of gerontology. Series A, Biological sciences and medical sciences
This study examined the relation between declines in physical and cognitive performance in older people. A population-based cohort of 7483 adults (average age 72 years) were interviewed. Physical performance was assessed with 3 standardized tests and a combination of 4 cognitive tests was used to assess cognitive function. Rate of change in physical and cognitive performance was determined for each interval between interviews. In mixed effects linear regression models adjusted for age, sex, race, and study time, and change in each factor was used to predict change in the other factor. We examined time associations by using changes in the predictor measured at 1, 2, or 3 intervals before the outcome change. Decline in cognitive function was most strongly predicted by physical decline in the same 3-year interval. The decline in cognitive function was weaker in the 1-time interval after the decline in physical function and was not significant in later intervals. When a decline in cognitive function was used to predict a decline in physical function, the results were similar. The strongest association occurred in the same time interval so that declines in cognitive and physical performance tend to occur together. Decline in cognition and physical function seem to occur together in a short timeframe. It is important to investigate the reasons for these changes that are short-term to guide the development of interventions.
- Research Article
106
- 10.1001/jama.299.3.308
- Jan 23, 2008
- JAMA
Maintaining independence of older persons is a public health priority, and identifying the factors that contribute to decline in physical function is needed to prevent or postpone the disablement process. The potential deleterious effect of poor nutrition on decline in physical function in older persons is unclear. To determine whether a low serum concentration of micronutrients is associated with subsequent decline in physical function among older men and women living in the community. Longitudinal study of 698 community-living persons 65 years or older who were randomly selected from a population registry in Tuscany, Italy. Participants completed the baseline examination from November 1, 1998, through May 28, 2000, and the 3-year follow-up assessments from November 1, 2001, through March 30, 2003. Decline in physical function was defined as a loss of at least 1 point in the Short Physical Performance Battery during the 3-year follow-up. Odds ratios (ORs) were calculated for the lowest quartile of each nutrient using the other 3 quartiles combined as the reference group. Two additional and complementary analytical approaches were used to confirm the validity of the results. The mean decline in the Short Physical Performance Battery score was 1.1 point. In a logistic regression analysis that was adjusted for potential confounders, only a low concentration of vitamin E (<1.1 microg/mL [<24.9 micromol/L]) was significantly associated with subsequent decline in physical function (OR, 1.62; 95% confidence interval, 1.11-2.36; P = .01 for association of lowest alpha-tocopherol quartile with at least a 1-point decline in physical function). In a general linear model, the concentration of vitamin E at baseline, when analyzed as a continuous measure, was significantly associated with the Short Physical Performance Battery score at follow-up after adjustment for potential confounders and Short Physical Performance Battery score at baseline (beta = .023; P = .01). In a classification and regression tree analysis, age older than 81 years and vitamin E (in participants aged 70-80 years) were identified as the strongest determinants of decline in physical function (physical decline in 84% and 60%, respectively; misclassification error rate, 0.33). These results provide empirical evidence that a low serum concentration of vitamin E is associated with subsequent decline in physical function among community-living older adults. Clinical trials may be warranted to determine whether an optimal concentration of vitamin E reduces functional decline and the onset of disability in older persons.
- Research Article
1
- 10.1016/s0301-5629(00)00196-4
- May 1, 2000
- Ultrasound in Medicine & Biology
Latin America
- Research Article
- 10.1152/physiol.2025.40.s1.1286
- May 1, 2025
- Physiology
BACKGROUND: Aging is associated with deterioration of metabolic, physical, and physiological functions, resulting in a profound impact on quality of life. L-Kynurenine (L-Kyn) is a product of tryptophan catabolism which increases with age and has been associated with frailty in humans. Regulated by the transcriptional co-regulator peroxisome proliferator-activated receptor gamma coactivator 1-alpha (PGC1α), kynurenine aminotransferases (KATs) are responsible for degrading L-Kyn into kynurenic acid and are robustly expressed in skeletal muscle. OBJECTIVE: The objective of this study was to 1) determine if elevating L-Kyn levels exacerbates an age-related decline in physical, muscle, and mitochondrial functions, and 2) determine if transgenic expression of PGC1α in skeletal muscle (MCK-PGC1α) protects against age-dependent L-Kyn associated pathology. METHODS: Male and female 16-mo C57BL6N (wildtype; WT) and MCK-PGC1α mice were randomized to either a control diet or diet supplemented with 200mg/kg L-Kyn. Physical function was assessed using a battery of tests including treadmill running capacity, physical activity, walking speed, and grip strength at 16, 20, and 24 mos. of age. Terminal experiments were performed within 2 wks after the physical function assessment at 24 mo. RESULTS: As expected, both male and female mice displayed significant age-dependent declines in all metrics of physical function. In male mice, L-Kyn supplementation significantly decreased running capacity ( P =0.002) and physical activity ( P <0.0001). In females, L-Kyn only decreased walking speed ( P <0.04). Female MCK-PGC1α mice demonstrated greater running capacity, physical activity, and walking speed than WT regardless of diet or age ( P <0.006). Soleus muscle strength and power were not impacted by diet or genotype in males ( P =0.12) or females ( P =0.16). Mitochondrial oxidative phosphorylation (OXPHOS) function in male MCK-PGC1α was 36% greater than WT ( P =0.04) while there was a ~41% increase in female MCK-PGC1α relative to WT ( P <0.01). No effect of L-Kyn was detected on OXPHOS ( P =0.22). CONCLUSION: Age-related declines in running capacity, physical activity levels, and walking speed are exacerbated by increased L-Kyn levels. Elevating KAT expression through transgenic expression of PGC1α in skeletal muscle can mitigate some of these effects, highlighting muscle as a key source of L-Kyn catabolism. This study was supported by the National Institutes of Health grant R01-AG076490 (T.E.R and R.T.H). This abstract was presented at the American Physiology Summit 2025 and is only available in HTML format. There is no downloadable file or PDF version. The Physiology editorial board was not involved in the peer review process.
- Research Article
16
- 10.2215/cjn.07050521
- Dec 1, 2021
- Clinical Journal of the American Society of Nephrology
Although progressive decline in physical activity and function are common in individuals with worsening CKD, little is known about the effect of dialysis initiation on physical activity. We assessed for any association of progression to dialysis in people with advanced CKD with temporal rates of change in physical activity and function. Canadian Frailty Observation and Interventions Trial (CanFIT) participants with an eGFR of <30 ml/min per 1.73 m2 were included. Outcomes included change in physical activity level, measured using the Physical Activity Scale for the Elderly, and physical function, measured using the chair stand, 4-m gait speed, and grip strength tests. Generalized linear regression models were conducted to determine whether dialysis initiation was associated with greater decline in physical activity or function. Of 386 individuals, 162 progressed to dialysis. Both assessments were completed by 98% of individuals for the Physical Activity Scale for the Elderly, 86% for the chair stand test, 84% for the gait speed test, and 91% for the grip strength test. Median (interquartile range) interassessment follow-up was 427 (357-578) days for the "stable advanced CKD" group and 606 (428-1000) days for the "progressed to dialysis" group. Self-reported physical activity and gait speed significantly declined in both groups. Mean (SD) chair stand time increased from 20.8 (17.1) to 24.0 (21.0) seconds among patients with stable advanced CKD, and from 18.5 (15.4) to 27.4 (22.2) seconds among those who progressed to dialysis (adjusted difference in change, 5.2 seconds; 95% confidence interval, 0.8 to 9.7 seconds; P=0.02). Patients with advanced CKD experience progressive declines in physical activity and function. Transition to dialysis is associated with accelerated decline in physical function, as measured by the chair stand test. This article contains a podcast at https://www.asn-online.org/media/podcast/CJASN/2021_12_01_CJN07050521.mp3.
- Research Article
5
- 10.1002/gps.5704
- Mar 31, 2022
- International journal of geriatric psychiatry
ObjectivesAmyotrophic Lateral Sclerosis (ALS) is a systemic and terminal disorder of the central nervous system which causes paralysis of limbs, respiratory and bulbar muscles, impacting on physical, communication, cognitive and behavioural functioning. Informal caregivers play a key role in the care of people with ALS. This study aimed to explore experiences of burden along with any beneficial aspects of caregiving in ALS. An understanding of both burden and benefit is important to support the informal caregiver and the person with ALS.Methods/DesignThis exploratory mixed methods study characterizes two groups of informal caregivers in Ireland (n = 76) and the Netherlands (n = 58). In a semi‐structured interview, quantitative data were collected in the form of standardized measures assessing psychological distress, quality of life and burden. Qualitative data were collected from an open ended question, in which caregivers identified positive aspects in their caregiving experience. These data types were purposefully mixed in the analysis and interpretation stages, to provide a greater depth of evidence through diverse research lenses.ResultsThe caregiver cohorts were predominantly female (69%) and spouse/partners (84%) of the person with ALS. Greater levels of self‐assessed burden were found among the caregivers in the Netherlands (p < 0.05), and higher levels of quality of life among the cohort from Ireland (p < 0.05). Themes generated through qualitative analysis identified caregiver satisfaction, ability to meet the patient's needs and the (re) evaluation of meaning and existential aspects of life as positive aspects of caregiving. Existential factors were identified frequently by the caregivers in Ireland, and personal satisfaction and meeting their care recipient's needs by caregivers in the Netherlands. Three percent of all respondents reported there was nothing positive about caregiving.ConclusionsBased on our findings, we suggest that both burden and the presence of positive factors should be evaluated and monitored. The possibility of concurrent positive and challenging experiences should be considered in the design and delivery of supportive interventions for informal caregivers.
- Research Article
- 10.1093/geront/gnaf108
- Mar 18, 2025
- The Gerontologist
Background and ObjectivesDespite a growing body of literature on physical functioning and informal caregiving in later life, few studies have explored how physical functioning changes over time in older caregivers versus noncaregivers and the role of different functioning types in understanding these changes. This study investigates the association between informal caregiving and changes in physical functioning over time among older adults in the Northern Netherlands.Research Design and MethodsWe analyzed data from 2 waves of the Lifelines Cohort Study, using a sample of 9,912 older caregivers and noncaregivers. We examined 11 outcome variables: overall physical functioning and 10 physical functioning types (e.g., vigorous and moderate activities; lifting/carrying groceries; walking various distances). We also controlled for health and demographic characteristics. Associations between changes in physical functioning and caregiving were modeled using generalized estimating equations.ResultsCaregiving affects the effect of aging on older adults’ physical functioning, with caregivers experiencing less decline in overall physical functioning, moderate activities, and lifting/carrying groceries compared with noncaregivers. Despite this, caregivers exhibited higher mental and physical impairments at baseline, contradicting aspects of the healthy caregiver hypothesis. Gender differences were significant, with women showing more limitations in physical functioning than men. Additionally, higher household income and educational attainment were associated with better physical functioning, potentially weakening the negative association between caregiving and aging.Discussion and ImplicationsThis research contributes valuable insights into healthy aging, informal care, and disability in later life, indicating the need for tailored interventions and policies for older caregivers.
- Research Article
- 10.1093/ijpp/riae013.026
- Apr 29, 2024
- International Journal of Pharmacy Practice
Introduction Intellectual disability defined as “a condition characterized by significant limitation in both intellectual functioning and adaptive behaviour that originates before the age of 22”.[1] Older adults with intellectual disability are exposed to high anticholinergic burden, due to the high prevalence of neurological and mental health diseases compared to the general older adult population. The long-term use of anticholinergics is associated with adverse effects such as decline in physical function, cognitive function and higher risk of dementia and Alzheimer disease in the general population. However, a recent scoping review found that there are no longitudinal studies examining adverse effects associated with long-term use of anticholinergics amongst older adults with intellectual disability.[2] Aim To examine adverse effects associated with long-term use of medication with anticholinergic activity among older adults with intellectual disability. Methods This study examined older adults with intellectual disability aged 40 or over, who participated in wave 1 (2010-11) (W1) and wave 4 (2019-20) (W4) in the Intellectual Disability Supplement to the Irish Longitudinal Study on Aging (IDS-TILDA). Anticholinergic burden was quantified using the Anticholinergic Cognitive Burden (ACB) Scale. Participants were categorised into three groups based on their total ACB score: no exposure (ACB = 0), mild exposure (ACB 1-4) and high exposure (ACB = 5+). Logistic regression used to examine adverse effects reported at W4 associated with ACB score captured at W1. Reported anticholinergic adverse effects were constipation, falls, edentulous, Barthel Index for activity of daily livings, mental health conditions and dementia/Alzheimer’s. The logistic regression model was adjusted for age, gender, level of intellectual disability, residence, epilepsy, and polypharmacy excluding anticholinergic medications. Results 506 people with intellectual disability participated and 487 (96.24%) provided medication data at both waves. At W1, 30% had no exposure (ACB=0), 40% had mild exposure (ACB = 1-4) and 30% had high ACB score (ACB = 5+). At W4, there was an increase by 5% of those with mild ACB and a reduction of 1.5% and 3.5% in those with no exposure and high ACB exposure respectively. Participants with high ACB score at W1, were significantly associated with falls (OR = 1.97, 95% CI 1.20-3.54), reporting mental conditions (OR = 14.78, 95% CI 7.84 - 27.86) and dementia, Alzheimer’s or taking anti-dementia drugs (N06D) (OR = 0.21, 95% Cl 0.07 - 0.67) at W4, compared to those with no anticholinergic exposure. Conclusion The long-term use of anticholinergics was associated with physical and mental adverse effects, and therefore the possibility of anticholinergic deprescribing should be explored and examined to enhance appropriate medicine use among older adults with intellectual disability. This is the first study examined the impact of long-term anticholinergic use among this population. However, further anticholinergic adverse effects should be addressed in future such as decline in cognitive function and frailty.
- Research Article
44
- 10.1080/01634372.2021.1898512
- Mar 16, 2021
- Journal of Gerontological Social Work
COVID-19 has had an enormous impact on older people around the world. As family caregivers provide a good portion of the care for older people, their lives have been drastically altered by COVID-19 too. Our study is an in-depth exploration of the greatest concerns of family caregivers in the United States during COVID-19, as well as their perspectives on the benefits of caregiving during this global pandemic. We conducted in-depth interviews with a diverse sample of 52 family caregivers in the United States between May and September of 2020 over video conferencing using a semi-structured interview guide. Thematic analysis was conducted to ascertain our participants’ perceptions. Caregiver’s concerns were organized into six main themes, including social isolation, decline in mental health, decline in physical and cognitive functioning, keeping their family members safe from COVID-19, lack of caregiving support, and caregiving stress. The themes related to the benefits of caregiving during COVID-19 included: enjoyed the slower pace, increased time to spend together, deepened relationships, recognizing the resilience of family members, and caregiving innovations. Our in-depth study helps social workers understand the nature of caregiving stress during COVID-19, as well as the positive aspects of caregiving, even during a global pandemic.
- Research Article
3
- 10.1111/hex.13671
- Dec 8, 2022
- Health Expectations : An International Journal of Public Participation in Health Care and Health Policy
IntroductionThe physical limitations experienced by people with chronic pain (CP) produce a greater need for care and assistance, most of which is provided by an informal caregiver (IC). Despite the key role ICs play in the everyday lives of individuals living with CP, knowledge about their experiences and needs is limited. We aimed to address this limitation by exploring the experiences of IC of people with CP.MethodsThis is a qualitative descriptive study using semistructured interviews. Participants were 12 ICs purposively chosen from the Unit of Pain at the University Hospital in Cádiz. Individual interviews were recorded, transcribed verbatim and analysed following thematic analysis.ResultsWe developed one overarching theme ‘Becoming a secondary actor of one's own life’ and three themes: 1. Key elements that shape a caregiver's experiences; 2. It's the hand that life dealt me; 3. The burden of being a caregiver and coping strategies.ConclusionsThis study's findings highlight how the CP impacts IC lives. Being an IC for a relative with CP became the most important role in the IC's life, to the point of casting a shadow over their own needs. Besides, participants felt not having other options but to keep going with that role. Yet, the context was essential in shaping the experiences as caregivers and the burden derived from caregiving. In this line, differences related to gender roles were found in the narratives of participant women and men.Patient or Public ContributionParticipants were purposively chosen from the Unit of Pain at the University Hospital ‘Puerta del Mar’ who attended the consultation accompanying their relatives. All the eligible participants were approached by the clinician. After this initial approach by the clinician, one of the researchers met the potential participant and they went to a quieter place in a clinical setting for the interview, before which the participant was shown a letter with more comprehensive information about the study and its aim. The participants were left alone to read and think carefully before giving their written informed consent. Participation was voluntary and the subjects received no financial contribution for their time.
- Research Article
- 10.58179/sswr9s105
- Oct 25, 2025
- Sociology and Social Work Review
Informal female caregiving remains a deeply gendered phenomenon, embedded in cultural norms that perpetuate systemic violence against women. In Italy, caregiving continues to fall predominantly on women and is often framed as a moral duty rather than recognised as labour (Hochschild 1983). Drawing on Amartya Sen’s (1993) capability approach, this study explores how informal caregiving, frequently imposed rather than chosen, affects women's well-being and sustains patriarchal structures. Specifically, it addresses the following research question: How do culturally embedded expectations regarding the caregiving role shape informal female caregivers’ self-perceptions and contribute to forms of systemic micro-violence? Using qualitative semi-structured interviews with informal female caregivers of people with Parkinson’s disease (n=25), the research identifies three caregiving configurations emerging from the intersection of attitudes, behaviours, and role expressions: “I am, therefore I care”, “I love, therefore I care”, and “I must, therefore I care”. These types reveal the continuum between agency and coercion that shapes women’s caregiving experiences. The findings highlight two intertwined forms of violence: symbolic violence, which normalises caregiving as an inherent female duty, and structural violence, rooted in institutional neglect and inadequate welfare support. By linking empirical insights to theoretical frameworks, the study demonstrates that informal caregiving operates as a subtle yet pervasive form of gender-based violence, sustained by cultural expectations and policy silence. It calls for a gender-sensitive welfare model capable of dismantling patriarchal norms, enhancing caregivers’ capabilities, and promoting caregiving as a shared social responsibility rather than a naturalised female obligation.
- Research Article
3
- 10.1007/s10433-017-0437-0
- Jul 4, 2017
- European Journal of Ageing
It is well established that socioeconomic position (SEP) and social relations impact physical function and mortality in old age. Due to differential vulnerability, few social relations may lead to greater decline in physical function and mortality among older people with low compared to high SEP. The aim was to investigate whether older people with few social relations experience greater decline in physical function and mortality when also subject to low financial assets? The study population included 4060 older people aged 75 or 80years at baseline in 1998-1999. Social relations at baseline and physical function at baseline and after 1.5, 3.0 and 4.5years were obtained from questionnaires. Financial assets at baseline and mortality during 10years of follow-up were obtained from registers. Analyses of the associations between financial assets combined with social relations and decline in physical function and mortality, respectively, were conducted. Among males, but not females, low financial assets and few social relations were associated with the greatest decline in physical function. Yet, interaction only reached significance between financial assets and visits. Among males and females, low financial assets and few social relations were associated with the highest mortality. Interactions only reached significance between financial assets and visits for females and social activity for males.In conclusion, few social relations implied greater decline in physical function among older males and higher mortality among older males and females with low financial assets; however, the study only supports the presence of differential vulnerability for visits and social activity.
- Research Article
1
- 10.1016/j.ejso.2025.110119
- Jun 1, 2025
- European journal of surgical oncology : the journal of the European Society of Surgical Oncology and the British Association of Surgical Oncology
Postoperative quality of life in patients with early-stage cervical cancer: A prospective 10-year follow-up study.
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