Rev Cuid. 2025; 16(2): 4646

https://doi.org/10.15649/cuidarte.4646

RESEARCH ARTICLE

Relationship between caregiver characteristics and the reported quality of life of people with mild and moderate dementia

Relación de las características de los cuidadores en la calidad de vida informada por las personas con demencia leve y moderada

Relação das características dos cuidadores e a qualidade de vida relatada por pessoas com demência leve e moderada

Psychologist, Young Researcher, Master’s in Clinical Neuropsychology, Universidad Surcolombiana, Neiva, Colombia. E-mail: alvarezpolo2021@gmail.com Correspondence Author Mabel Tatiana Alvarez Polo
Psychologist, Specialist in Clinical and Child Development, Master’s in Psychology, Master’s in Clinical Neuropsychology, Universidad Surcolombiana, Neiva, Colombia. E-mail: ruddysg@gmail.com Rudy Marcela Sanchez Guarnizo
Psychologist, Specialist in Applied Statistics, Neurocognition and Psychophysiology Laboratory, Universidad Surcolombiana, Neiva, Colombia. E-mail: duvanfgomezm@gmail.com Duván Fernando Gómez Morales
Psychologist, PhD in Cognitive Neuroscience, Psicosaberes Research Group, Universidad Cooperativa de Colombia, Neiva, Colombia. E-mail: jasminbonillasantos@hotmail.com Jasmin Bonilla-Santos

Highlights

 

How to cite this article: Alvarez Polo Mabel Tatiana, Sanchez Guarnizo Rudy Marcela, Gómez Morales Duván Fernando, Bonilla-Santos Jasmin. Relationship between caregiver characteristics and the reported quality of life of people with mild and moderate dementia. Revista Cuidarte. 2025;16(2):e4646. https://doi.org/10.15649/cuidarte.4646

Received: November 16th 2024
Accepted: March 25th 2025
Published: August 27th 2025

CreativeCommons 

E-ISSN: 2346-3414

Abstract

Introduction: Individuals with dementia are typically cared for at home by a family member who provides informal care, a role that can negatively affect their quality of life (QoL) and caregiving performance, thereby impacting the QoL of the person with dementia. Objective: To examine the relationship between caregiver characteristics and the QoL reported by individuals with mild or moderate dementia. Materials and Methods: This quantitative, cross-sectional, correlational study involved 50 dyads comprising individuals with mild to moderate dementia and their caregivers. The variables assessed were the QoL of the person with dementia, caregiver competence, caregiver burden, caregiver QoL, attention, cognitive flexibility, inhibitory control, decision-making, and working memory. Results: The study found significant correlations between caregiver competence, QoL, and burden/stress with the QoL of individuals with dementia. Executive function (inhibitory control and cognitive flexibility) was significantly associated with caregiver competence. Discussion: Caregiver QoL is positively associated with the QoL of individuals with dementia; therefore, enhancing caregiver-related characteristics contributes to effective disease management and the well-being of the person with dementia. Conclusions: The study demonstrates the impact of informal caregivers’ competence, burden, and executive function on the QoL of individuals with dementia.

Keywords: Informal Caregivers; Dementia; Caregiver Burden; Executive Function.

Resumen

Introducción: Las personas que padecen demencia habitualmente son atendidas en casa por un familiar, quien realiza la labor de manera informal y que pueden verse perjudicados en su calidad de vida y en el desempeño de la actividad de cuidar e impactar en la calidad de vida de las personas con demencia. Objetivo: Examinar la relación de las características de los cuidadores sobre la calidad de vida informada por las personas con demencia en etapa leve o moderada. Materiales y Métodos: Estudio de enfoque cuantitativo de diseño transversal de alcance correlacional. Los participantes fueron 50 díadas conformadas por personas con demencia leve y moderada y sus cuidadores. Las variables evaluadas fueron calidad de vida de la persona con demencia, competencia, sobrecarga, calidad de vida del cuidador, atención, flexibilidad cognitiva, control inhibitorio, toma de decisiones y memoria de trabajo. Resultados: El estudio evidenció correlaciones significativas entre la competencia, la calidad de vida y la sobrecarga/estrés del cuidador con la calidad de vida de las personas con demencia. La función ejecutiva (control inhibitorio y flexibilidad cognitiva) se asoció significativamente con la competencia de los cuidadores. Discusión: La calidad de vida del cuidador está relacionada positivamente con la calidad de vida de la persona con demencia, por lo que fortalecer las características del cuidador contribuye al adecuado manejo de la enfermedad y bienestar de la persona con demencia. Conclusiones: Se evidenció el impacto de la competencia, sobrecarga y función ejecutiva de los cuidadores informales sobre la calidad de vida de las personas con demencia.

Palabras Clave: Cuidadores Informales; Demencia; Carga del Cuidador; Función Ejecutiva.

Resumo

Introdução: Pessoas com demência geralmente são cuidadas em casa por um membro da família, que realiza esse trabalho informalmente. Isso pode afetar sua qualidade de vida e o desempenho das atividades de cuidado, impactando a qualidade de vida das pessoas com demência. Objetivo: Examinar a relação das características do cuidador com a qualidade de vida relatada por pessoas com demência leve e moderada. Materiais e Métodos: Trata-se de um estudo quantitativo, transversal e correlacional. Os participantes foram 50 díades compostas por pessoas com demência leve e moderada e seus cuidadores. As variáveis avaliadas foram qualidade de vida da pessoa com demência, competência, sobrecarga, qualidade de vida do cuidador, atenção, flexibilidade mental, controle inibitório, tomada de decisão e memória de trabalho. Resultados: O estudo mostrou correlações significativas entre competência do cuidador, qualidade de vida e sobrecarga/estresse com a qualidade de vida de pessoas com demência. O funcionamento executivo (controle inibitório e flexibilidade cognitiva) foi significativamente associado à competência do cuidador. Discussão: A qualidade de vida do cuidador está positivamente relacionada à qualidade de vida de pessoas com demência; portanto, o fortalecimento das características do cuidador contribui para o manejo adequado da doença e o bem-estar das pessoas com demência. Conclusões: O impacto da competência, da sobrecarga e das habilidades executivas dos cuidadores informais na qualidade de vida de pessoas com demência foi evidente.

Palavras-Chave: Cuidadores Informais; Demência; Carga do Cuidador; Função Executiva.

 

Introduction

Globally, approximately 55 million individuals are living with dementia1. In Colombia, 108,259 individuals were reported to have been diagnosed with dementia in 20222. Furthermore, the study titled Prevalencia de deterioro cognitivo leve en regiones del sur de Colombia (“Prevalence of Mild Cognitive Impairment in Regions of Southern Colombia”) reported high rates of mild cognitive impairment (MCI), with a prevalence of 51.9% in the province of Huila and 56.6% in Caquetá. At the regional level, the prevalence of MCI is as high as 53.6%. Moreover, the study estimated the conversion rate from MCI to dementia, projecting an annual probability between 10% and 15%, indicating that approximately one in four individuals with MCI may be at risk of developing dementia3.

According to the World Health Organization, this constitutes a public health problem, as the demand for care increases, given that this disease follows a progressive and irreversible course, leading to dependence on a caregiver1. It is estimated that at least 80% of individuals diagnosed with dementia are cared for at home by a family member or friend who assumes the role of an informal caregiver4,5. While caregiving can be rewarding, it can also have detrimental effects on caregivers’ health, which is why they are often referred to as the “invisible second patients.”6,7 Caregivers experience substantial burden from the care they provide and may suffer from physical and psychological problems8. These challenges are negatively associated with their own quality of life (QoL) and the care provided to the person with dementia9.

Caregivers possess varying levels of motivation, skills, and characteristics, all of which can influence their competence in performing caregiving activities. Managing the cognitive, behavioral, and psychological symptoms of dementia requires complex coping responses and should be distinguished from routine daily care10. Some caregiver characteristics that have been studied and documented include caregiver burden11,12, cognitive function, and QoL13,14

Caregiver burden refers to the emotional responses experienced by individuals who care for individuals with physical or mental disabilities.15 Caregiver burden may be perceived in situations where cognitive impairment is apparent16 or assessed objectively using standardized instruments17. Cognitive alterations reported among caregivers include impairments in working and declarative memory, attention, processing speed, inhibitory control, visuospatial skills, and executive function13,14,18. These deficits can significantly affect the well-being of people with dementia19.

The influence of caregiver characteristics on the QoL of patients with dementia has been little studied. International studies have indicated that caregiver-related stress, social constraints, and perceived caregiving competence can contribute to reduced QoL, life satisfaction, and well-being in individuals with dementia11,20. Additionally, depression, caregiver burden, and poor overall health status among caregivers have been linked to higher levels of patient distress and inappropriate care interventions21. In Colombia, a study conducted in Bucaramanga, Santander, identified factors contributing to caregiver burden among informal caregivers of patients with Alzheimer’s disease. Increased burden was observed when patients exhibited more severe behavioral impairments, when caregivers held another job, and when they received little support from other family members22. Other studies have examined caregiver burden in the context of chronic diseases such as schizophrenia, cancer, diabetes, and hypertension, overlooking the impact on caregivers of individuals with dementia23. At the regional level, only one relevant study was identified. This study, conducted in Neiva, Huila, explored the relationship between caregiving competence and QoL among family caregivers of individuals with chronic noncommunicable diseases. Findings suggested that higher caregiving competence is associated with better QoL and reduced caregiver burden24. Despite growing interest in caregiver well-being, most studies have primarily focused on the impact of caregiving on the caregiver, with limited attention given to how caregiver competence and individual characteristics affect the QoL of individuals with dementia.

The results of this study underscore the importance of caregivers’ cognitive and mental health, thereby fostering an understanding of how caregiving influences their lives25 and the QoL of individuals with dementia. The findings provide valuable insights for developing public policies, programs, and interventions aimed at safeguarding the mental health of informal caregivers. Accordingly, the objective of this study was to examine the relationship between caregiver characteristics and QoL reported by individuals with mild to moderate dementia.

 

Materials and Methods

This study employed a quantitative, cross-sectional, correlational design to assess the degree of association among multiple variables using statistical correlation techniques26.

Participants

The study included dyads composed of individuals diagnosed with dementia and their informal caregivers residing in the municipality of Neiva, Huila. A non-probability convenience sampling method was employed to recruit participants27. A Structured Query Language query was conducted on the UROS Clinic database (UROSOFT V 2.0 system) to identify patients diagnosed with dementia and treated within the past 5 years. The retrieved data included basic demographic information, municipality of origin, type of care received, and primary admission diagnosis, categorized according to the International Statistical Classification of Diseases and Related Health Problems, 10th Revision (ICD-10). A total of 234 eligible cases were identified. Telephone outreach was conducted to contact potential participants, and inclusion and exclusion criteria were applied to both individuals with dementia and their respective informal caregivers. The inclusion criteria for individuals with dementia were as follows: community-dwelling status, clinical diagnosis of dementia (any subtype), and a Global Deterioration Scale (GDS) score between 4 and 5, indicating mild to moderate dementia28. After applying these criteria, a final sample of 50 caregiver–patient dyads (N = 50) was obtained.

 

Inclusion criteria for individuals with dementia

- Prior clinical diagnosis of mild or moderate dementia (ICD-10)

- Scoring at stages 4 or 5 on the GDS28

 

Exclusion criteria for individuals with dementia

- Presence of sensory disorders, particularly hearing impairment

- Scoring <4 or >6–7 on the GDS28

 

Inclusion criteria for informal caregivers

- Agreeing to participate in the study and signing the informed consent form

- Being the primary caregiver of an individual diagnosed with mild or moderate dementia

- Not receiving financial compensation for caregiving activities

- Residing in the city of Neiva

- Providing care for at least 8 hours per day29

 

Exclusion criteria for informal caregivers

- Age below 18 years

- Caregiving duration of less than 6 months30

- Having characteristics that prevent evaluation:

- Psychoactive substance use disorder

- Presence of any sensory, intellectual, neurological, or psychiatric disorder

 

Operationalization of variables and instruments

Sociodemographic data: Sociodemographic information was collected from individuals with dementia and their informal caregivers. The variables included age, gender, level of education, socioeconomic status, duration (in years), and intensity (average daily hours) of caregiving, among other relevant demographic indicators.

Variables and instruments for persons with dementia

Disease stage: To classify the stage of dementia, the GDS was applied28. This scale delineates seven progressive stages of degenerative dementia: stage 1 (normal), stage 2 (age-associated memory impairment ), stage 3 (MCI), stage 4 (mild dementia), stage 5 (moderate dementia), stage 6 (moderately severe dementia), and stage 7 (severe dementia). The GDS demonstrated good internal consistency, with a reported Cronbach’s α of 0.82.

QoL of individuals with dementia: Quality of life was treated as a nominal, qualitative, dependent variable. It was operationally defined as a multidimensional construct encompassing social, environmental, health-related, emotional, and spiritual domains. These include diverse elements such as occupational and leisure activities, hobbies, cognitive function, economic success, and psychological well-being. The instrument used to measure this variable was the QoL in Alzheimer’s Disease (QoL-AD). This instrument has two validated versions: one for the patient (QOL-ADp) and one for the caregiver (QOL-ADc) to assess the QoL of the person with dementia. Each version includes 13 items. The QOL-ADp scale had a Cronbach’s alpha of 0.88, and the QOL-ADc version had a Cronbach’s alpha of 0.8231.

Variables and instruments for assessing informal caregivers’ characteristics

Competence: Caregiving competence was treated as an ordinal, qualitative, and independent variable. It was theoretically defined as “the capacity, ability, and preparedness of the person with a chronic illness and/or the family caregiver to conduct home-based caregiving activities.” This variable was assessed using the Home Care Competence Scale (GCPC-UN-CPC), family caregiver version. The instrument comprises 60 items distributed across six dimensions: knowledge, uniqueness or specific personal traits, procedural/instrumental skills, minimum conditions for caregiving or caregiver well-being, anticipation, and social relationships and interactions. The scale has a Cronbach’s α of 0.9632.

Caregiver QoL: Quality of life was categorized as an ordinal, qualitative, and independent variable and defined as “a person’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards, and concerns.”33 The variable was measured using Item 1 of the WHOQOL-BREF questionnaire, which assesses general QoL. Responses were scored on a 5-point Likert scale ranging from 1 (very poor) to 5 (very good). The instrument has demonstrated satisfactory reliability, with a Cronbach’s α exceeding 0.8034.

Caregiver burden: was considered an ordinal, qualitative, and independent variable, defined as the caregiver’s subjective experience of the demands associated with caregiving. The burden can be established objectively through the changes the caregiver makes in their life and the emotional impact caused by the demands of the caregiving role35. The Zarit Burden Interview, comprising 22 items, was used to assess this variable. The total scores were categorized as follows: no caregiver burden (≤46), mild caregiver burden (47–55), and severe caregiver burden (≥56). This scale has a Cronbach’s α of 0.9236.

Attention, cognitive flexibility, decision-making, inhibitory control, and working memory were treated as ordinal, qualitative, and independent variables, with a mean of 50 and a standard deviation of 10. Scores were classified into the following performance levels: very low (3–10), low (11–25), average (26–75), and high (>75)37,38. Participants with the poorest performance were categorized as “very low,” while those with the strongest performance were categorized as “high.”

Attention is both a mental process and a behavior, essential for discriminating, focusing on, processing, and monitoring relevant information37. Cognitive flexibility refers to the ability to shift thought or behavior in response to changing situational demands39. These two variables were assessed using the Trail Making Test (TMT-A and B), adapted for the Colombian population. TMT-A assesses attentional processes (R² = 0.426; p < 0.001). TMT-B evaluates executive functions, particularly cognitive flexibility (R² = 0.475; p < 0.001)37.

Decision-making is defined as the ability to choose the most adaptive course of action by evaluating various behavioral alternatives. In this mental process, the cognitive aspects of the situation, the respective contingencies, and the emotional cues associated with the possible options are taken into account40. This variable was evaluated using the Modified Wisconsin Card Sorting Test (M-WCST) for the Colombian population. The version used comprised four stimulus cards and 48 response cards. The test showed statistically significant normative data (R² = 0.243; p < 0.001)37.

Inhibitory control refers to the capacity to deliberately suppress dominant or automatic responses when the situation requires it41. This ability was assessed using the Stroop Color and Word Test, adapted for the Colombian population. The test includes 3 pages, each with 100 items arranged in 5 columns, to be read aloud from left to right within 45 seconds. Significant results were observed for Stroop Total Words (R2 = 0.381; p < 0.001), Stroop Total Colors (R2 = 0.397; p < 0.001), Stroop Words-Colors (R2 = 0.357; p < 0.001), and Stroop Interference (R2 = 0.58; p < 0.001)37.

Working memory is a temporary information storage and manipulation system42. This construct was measured using the Digit Span subtest of the Wechsler Adult Intelligence Scale-Fourth Edition (WAIS-IV). The subtest included three sections (Forward, Backward, and Sequencing), each with eight items and two trials (A and B). It has a Cronbach’s α = 0.9338.

Procedure

The study was conducted over a period of 7 months and was structured into 3 distinct phases. In the first phase, individuals with a clinical diagnosis of mild or moderate dementia (within the past 5 years) and their informal caregivers were identified with the support of the UROS Clinic. Initial contact was established with potential participants, during which the project objectives were explained to them. Participants who met the established inclusion and exclusion criteria were invited to participate. GDS was administered to caregivers to confirm the dementia stage of the individual under their care. A contact database was subsequently compiled. In the second phase, an in-person appointment (lasting 45–60 minutes) was scheduled to obtain informed consent and administer scales and neuropsychological tests. In the third phase, the assessment instruments were scored, and individual evaluation reports were prepared and delivered to the participants.

Ethical considerations

Ethical approval was granted by the Institutional Bioethics and Research Committee of the UROS SAS Clinic (Approval Minute No. 95). This study adhered to both national and international ethical guidelines for research involving human participants, in accordance with the Declaration of Helsinki. Participants’ rights and interests were prioritized throughout the study. All participants received comprehensive information regarding the study procedures, including their right to withdraw at any point. For individuals with dementia, their caregivers served as witnesses.

Data analysis

Data were analyzed using the Statistical Package for the Social Sciences (SPSS), version 26.0. Descriptive statistics were applied to characterize the sample and summarize performance across all administered instruments. To assess the relationships between variables, bivariate correlations were computed using Spearman’s rank correlation coefficient (Spearman’s ρ)43. Correlation coefficients were interpreted based on both the direction and strength of the relationships. Positive correlations indicated that as one variable increased, so did the other, while negative correlations indicated that one variable increased as the other decreased. The strength of the correlations was interpreted according to the following ranges: -0.91 to -1.00 = perfect negative correlation; -0.76 to -0.90 = very strong negative correlation; -0.51 to -0.75 = strong negative correlation; -0.11 to 0.50 = moderate negative correlation; -0.01 to -0.10 weak negative correlation; 0.00 = no correlation; +0.01 to +0.10 = weak positive correlation; +0.11 to +0.50 = moderate positive correlation; +0.51 to +0.75 = strong positive correlation; +0.76 to +0.90 = very strong positive correlation; +0.91 to +1.00 = perfect positive correlation43. All data generated and analyzed in this study are publicly available in the Figshare repository44.

 

Results

The sample of individuals with dementia comprised 29 women (58.00%) and 21 men (42.00%). Among them, 7 participants (14.00%) were diagnosed with mild dementia, while 43 (86.00%) had moderate dementia. Participants’ ages ranged from 76 to 97 years, with 96.00% falling within this age range. Most had between 0 and 5 years of formal education (64.00%) and lived with a companion (98.00%) (Table 1).

The caregiver group comprised 45 women (90.00%) and 5 men (10.00%). Half of the caregivers (50.00%) were between 28 and 59 years of age. Most belonged to a low socioeconomic stratum (64.00%) and had received 11 to 15 years of formal education (52.00%). In terms of caregiving experience, 68.00% reported providing care for 1 to 5 years. Additionally, 64.00% indicated that they provided care for 16 to 24 h per day (Table 2).

 

Table 1. Sociodemographic data of individuals with dementia (n=50)

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Table 2. Sociodemographic data of caregivers (n=50)

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Table 2. Sociodemographic data of caregivers (n=50)

Domain

Frequency

% (n)
Sex
   Female 90.00 (45)
   Male 10.00 (5)
Age (years)
   Young (27) 2.00 (1)
   Adult (28–59) 50.00 (25)
   Older adults (≥60) 48.00 (24)
Years of receiving education
   1–5 6.00 (3)
   6–10 14.00 (7)
   11–15 52.00 (26)
   16–20 26.00 (13)
   ≥21 2.00 (1)
Years dedicated to the care of the individual with dementia
   1–5 68.00 (34)
   6–10 18.00 (9)
   11–15 14.00 (7)
Hours of daily care
   6–10 16.00 (8)
   11–15 20.00 (10)
   ≥15 64.00 (32)

 

Regarding the QoL of individuals with dementia, in the self-reported scale (QOL-ADp), 33 (66.00%) reported having QoL, whereas 17 (34.00%) reported not having QoL. In the caregiver-reported measure (QOL-ADc), 45 caregivers (90.00%) perceived that the person with dementia had QoL, and only 5 (10.00%) reported otherwise.

Table 3 presents the distribution of caregiver competence levels across various domains. High levels of competence were observed in the domains of knowledge (n = 48; 96.00%), anticipation (n = 42; 84.00%), and procedural/instrumental skills (n = 47; 94.00%). Regarding overall caregiver QoL, 28 (56.00%) rated it as good to very good, while 10 (20.00%) reported poor to very poor QoL.

In terms of caregiver burden, 28 (56.00%) experienced no burden, whereas 22 (44.00%) reported mild to severe burden. Evaluation of caregivers’ executive cognitive functions (attention, Cognitive flexibility, decision-making, working memory, and inhibitory control) revealed that most performed within the average range, except in decision-making, where lower performance was more prevalent: 20 caregivers (40.00%) scored low, and 18 (36.00%) scored very low.

 

Table 3. Key Characteristic levels among informal caregivers of individuals with dementia (n=50)

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Table 3. Key Characteristic levels among informal caregivers of individuals with dementia (n=50)

Caregiver Characteristics Subdomain -level

Frequency

% (n)
Competence Well-being
   Medium 52.00 (26)
   High 48.00 (24)
Uniqueness
   Medium 52.00 (26)
   High 48.00 (24)
Social interaction
   Medium 66.00 (33)
   High 34.00 (17)
Knowledge
   Medium 4.00 (2)
   High 96.00 (48)
Anticipation
   Medium 16.00 (8)
   High 84.00 (42)
Procedural/instrumental
   Medium 6.00 (3)
   High 94.00 (47)
WHOQOL-BREF Quality of life
   Very poor 4.00 (2)
   Poor 16.00 (8)
   Normal 24.00 (12)
   Good 48.00 (24)
   Very good 8.00 (4)
ZARIT Caregiver burden
   No caregiver burden 56.00 (28)
   Mild caregiver burden 22.00 (11)
   Severe caregiver burden 22.00 (11)
Executive functioning
Trail Making Test TMT-A Attention
   Low 40.00 (20)
   Average 58.00 (29)
   High 2.00 (1)
Trail Making Test TMT-B Cognitive flexibility
   Very low 2.00 (1)
   Low 16.00 (8)
   Average 76.00 (38)
   High 6.00 (3)
Stroop Interference Inhibitory control
   Very low 22.00 (11)
   Low 18.00 (9)
   Average 46.00 (23)
   High 14.00 (7)
Wisconsin Decision-making
   Very low 36.00 (18)
   Low 40.00 (20)
   High 24.00 (12)
Digit Span Working memory
   Very low 30.00 (15)
   Low 18.00 (9)
   Average 48.00 (24)
   High 4.00 (2)

Note: Home Care Competence Scale (GCPC-UN-CPC), World Health Organization Quality of Life (WHOQOL-BREF), ZARIT Burden Interview, Trail Making Test TMT-A, Trail Making Test TMT-B, Stroop Interference Test, Wisconsin, Card Sorting Test, Digit Span subtest.

 

To analyze the relationship between caregiver characteristics and the QoL of people with dementia, Spearman’s rank correlation coefficients (rs) were calculated: competence, caregiver burden, and QoL of individuals with dementia, both self-reported and caregiver-reported (Table 4).

A strong positive correlation was found between caregivers’ well-being and their own QoL (rs = 0.544, p < 0.01), caregiver-reported QoL of the individual with dementia (rs = 0.576, p < 0.01), and self-reported QoL of the individual with dementia (rs = 0.609, p < 0.01). In contrast, a strong negative correlation was observed between caregivers’ well-being and caregiver burden (rs = 0.626, p < 0.01).

In the uniqueness domain, a moderate positive correlation was found with caregivers’ QoL (rs = 0.418, p < 0.01), caregiver-reported QoL of the individual with dementia (rs = 0.487, p < 0.01), and self-reported QoL (rs = 0.351, p < 0.05). A moderate negative correlation was also found between uniqueness and caregiver burden (rs = –0.435, p < 0.01). The social interaction domain exhibited strong positive correlations with caregiver-reported QoL (rs = 0.606, p < 0.01) and self-reported QoL (rs = 0.601, p < 0.01), and a strong negative correlation with caregiver burden (rs = 0.588, p < 0.01).

The knowledge domain demonstrated moderate positive correlations with caregiver-reported QoL of the individual with dementia (rs = 0.483, p < 0.01) and self-reported QoL of the individual with dementia (rs = 0.333, p < 0.05), and a moderate negative correlation with caregiver burden (rs = –0.404, p < 0.01).

Anticipation showed a moderate positive correlation with caregiver-reported QoL of individuals with dementia (rs = 0.363, p < 0.01) and a strong negative correlation with caregiver burden (rs = –0.523, p < 0.01). In the procedural/instrumental domain, a strong positive correlation was found with caregiver-reported QoL (rs = 0.534, p < 0.01).

Caregivers’ overall QoL was negatively correlated with caregiver burden (rs = –0.649, p < 0.01), while caregiver burden was also strongly negatively correlated with caregiver-reported QoL of individuals with dementia (rs = –0.641, p < 0.01).

Finally, self-reported QoL of individuals with dementia showed moderate positive correlations with caregivers’ QoL (rs = 0.441, p = 0.001) and caregiver-reported QoL of the individual with dementia (rs = 0.424, p < 0.01), as well as a moderate negative correlation with caregiver burden (Table 4).

 

Table 4. Correlations between caregivers’ characteristics and the quality of life of individuals with dementia

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Table 4. Correlations between caregivers’ characteristics and the quality of life of individuals with dementia

Variables 1 2 3 4 5 6 7 8 9 10
1. Well-being — — — — — — — — —
2. Uniqueness 0.504** — — — — — — — — —
3. Social interaction 0.567** 0.547** — — — — — — — —
4. Knowledge 0.360* 0.560** 0.475** — — — — — — —
5. Anticipation 0.284* 0.569** 0.388** 0.672** — — — — — —
6. Procedural/instrumental 0.380** 0.558** 0.492** 0.716** 0.577** — — — — —
7. Caregivers’ QoL 0.544** 0.418** 0.488** 0.265 0.240 0.180 — — — —
8. Caregiver burden −0.626** −0.435** −0.588** −0.404** −0.523** −0.369** −0.649** — — —
9. Caregiver-reported QoL of the individual with dementia 0.576** 0.487** 0.606** 0.483** 0.363** 0.534** 0.474** −0.641** — —
10. Self-reported QoL of the individual with dementia 0.609** 0.351* 0.601** 0.333* 0.265 0.373** 0.441** −0.395** 0.424** —

Note: **p= < 0,01; *p= < 0.05.

 

Table 5 presents the correlations between caregivers’ executive functions, their caregiving competence, and the QoL reported by individuals with dementia. Cognitive flexibility showed a moderate positive correlation with the uniqueness domain of caregiver competence (rs = 0.315, p < 0.01). Similarly, inhibitory control demonstrated moderate positive correlations with the uniqueness domain (rs = 0.384, p < 0.01), knowledge (rs = 0.316, p < 0.05), anticipation (rs = 0.293, p < 0.05), and procedural/instrumental (rs = 0.493, p < 0.01) domains. However, no statistically significant correlations were observed between caregivers’ executive functions and the QoL reported by individuals with dementia.

 

Table 5. Correlation between caregivers’ executive functions and competence and the QoL of individuals with dementia

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Table 5. Correlation between caregivers’ executive functions and competence and the QoL of individuals with dementia

Variables Well-being Uniqueness Social Interaction Knowledge Anticipation Procedural QP
Attention −0.014 0.261 0.040 0.271 0.257 0.210 0.080
Cognitive flexibility 0.155 0.315* 0.107 0.156 0.134 0.169 0.033
Inhibitory control 0.152 0.384** 0.201 0.316* 0.293* 0.493** 0.147
Decision-making 0.091 0.063 0.152 −0.081 −0.260 −0.096 0.017
Working memory 0.082 0.081 0.189 −0.058 0.025 0.148 −0.003

Note: Home Care Competence Scale (GCPC-UN-CPC), Trail Making Test TMT-A, Trail Making Test TMT-B, Stroop Color and Word Test (interference), Wisconsin Card Sorting Test, Digit Span subtest, and QoL of the person with dementia (QP). *p ≤ 0.05.**p ≤ 0.01.

 

Discussion

This study explored the relationship between informal caregivers’ characteristics and the QoL reported by individuals with mild to moderate dementia. Significant positive correlations were identified between caregivers’ QoL and their competence in the domains of well-being, uniqueness, social interaction, knowledge, and procedural/instrumental skills. Conversely, a negative relationship was observed between caregivers’ burden levels and the QoL reported by individuals with dementia. Although no significant associations were found between caregivers’ executive functions and the QoL of individuals with dementia, positive correlations were observed between inhibitory control and competence (more specifically, the uniqueness, knowledge, anticipation, and procedural/instrumental domains). Additionally, cognitive flexibility was positively correlated with the uniqueness domain.

Demographically, the majority of caregivers in this study were older adult women with a relatively high level of education who cohabited with the person with dementia. These findings align with previous literature reporting similar caregiver profiles9,19,45-49. Notably, the caregivers’ average educational attainment exceeded 8 years, which may have positively influenced their performance on cognitive tasks. This level of education is considered high in other studies50,51, and evidence suggests that the higher the caregiver’s educational attainment, the better their perception, coping skills, and adaptation to the demands of caregiving52,53. In contrast, other studies have found that caregivers with lower educational levels tend to acquire less knowledge about the disease and report higher levels of caregiver burden when providing care53-54. These observations highlight that both educational level and average performance on cognitive assessments may act as protective factors that enhance the quality of care provided to individuals with dementia.

These findings underscore the importance of integrating the sociodemographic characteristics of caregivers into the design of supportive policies and intervention programs. Factors such as gender, age, relationship to the care recipient, and education level can influence the experience and needs of caregivers of individuals with dementia. Additionally, existing research has pointed out that caregivers, being family members, often view their role as a responsibility or an opportunity to strengthen their relationship with the individual with dementia, which in turn can reduce caregiver burden and alleviate behavioral symptoms of dementia55,56.

In the present study, the QoL of individuals with dementia did not appear to be adversely affected. This may be attributed to the caregivers’ sociodemographic characteristics and adequate levels of competence they reported. The results of this study showed significant correlations between caregiver characteristics and the QoL of individuals with dementia. The main caregiver characteristics associated with the QoL of the person with dementia are discussed below.

Caregivers’ well-being demonstrated a significant positive association with QoL of individuals with dementia, both caregiver-reported and self-reported. Other studies19,57 suggest that the emotional and physical well-being of caregivers has a direct impact on the perceived QoL of the person with dementia. Moreover, caregivers with higher well-being are better prepared to provide more effective care based on their knowledge of the disease and its progression, which in turn benefits the patient’s QoL11. Evidence shows that when caregivers can identify the positive aspects of caregiving, their mood and overall well-being improve,11 which in turn enhances their caregiving role and positively influences the QoL of individuals with dementia. As previously discussed, caregiving can be both a rewarding and a stressful experience, potentially compromising caregivers’ health and well-being8. However, it is also important to acknowledge that caregivers may experience positive relational aspects that favorably influence their well-being and, consequently, their caregiving role. Research has shown that perceived positive aspects of caregiving are associated with better QoL58 and well-being19,56.

A positive relationship between the uniqueness or individuality domain and QoL of individuals with dementia, in both the caregiver-reported and self-reported measures, was observed. Recognizing and respecting the individuality of a person with dementia promotes personalized and respectful care, contributing to their QoL. Given the degenerative nature of dementia, the caregiver-patient relationship dynamics inevitably evolve, with caregivers taking on their role as the person with dementia becomes more dependent, requiring both to adapt to the diagnosis and the changes brought about by the disease11. Therefore, it is essential that caregivers receive accurate, tailored information, particularly in the early stages of the disease and throughout its progression59.

Regarding social interaction, activities that foster socialization can significantly contribute to improving the caregiver’s QoL and, in turn, the QoL of the person with dementia. Research has shown that greater caregiver social participation is associated with increased involvement of individuals with dementia in activities such as visiting relatives, attending religious services, and volunteering60. Similarly, having fewer social restrictions, resulting from receiving more support in caregiving, can reduce caregivers’ stress levels and, consequently, positively impact their well-being and the level of care they provide. Conversely, when caregivers receive no assistance, the person with dementia may be affected, as the caregiver’s well-being is likely to be compromised11.

Regarding the knowledge domain, greater knowledge of the disease and its management can translate into more effective care strategies, thereby benefiting the QoL of individuals with dementia11,61,62. In particular, being informed about available formal and informal support services, best caregiving practices, communication techniques, and ways of addressing the challenges that arise throughout the progression of the disease are aspects that can help family caregivers develop effective coping strategies59,63.

In terms of anticipation, the caregiver’s ability to anticipate the patient’s needs can help improve daily caregiving experiences. By focusing on promoting relationships, encouraging social participation, and facilitating daily functioning, caregivers not only address physical and mental health issues but also ensure high-quality care, thereby contributing to improved QoL for people with dementia64.

Similarly, adequate caregiver procedural and instrumental competence—such as managing daily routines and administering medication— is fundamental to maintaining and improving the patient’s QoL. Therefore, training caregivers about the disease and the importance of medication adherence can help ensure optimal treatment61,65.

Finally, this study confirmed a significant negative correlation between caregiver burden/stress and the QoL of individuals with dementia. High levels of stress and burden among caregivers can lead to less optimal care, reduced quality of life, and poorer interactions between the caregiver and the person with dementia11,56. Research has shown that, particularly in challenging times, positive and negative psychological states often coexist. Positive emotions play a vital role in understanding how individuals respond and adapt to such demanding experiences. As such, strengthening caregivers’ sense of competence is essential for reducing stress levels56. This is particularly important given that higher stress levels have been associated with lower self-evaluations of QoL by individuals with dementia11,66.

Evidence shows that the QoL of people with dementia influences the QoL of caregivers, and vice versa. Thus, one of the main objectives in dementia care should be the preservation of caregivers’ QoL across multiple dimensions, as this can directly improve disease management and ultimately enhance the QoL of the person with dementia9. In line with previous findings, this study also identified that lower caregiver burden is generally associated with better self-assessed QoL by the person with dementia, and vice versa11. Similar results were found in another study, where caregiver burnout and caregiver burden negatively correlate with caregivers’ QoL67.

Another critical factor influencing caregivers’ QoL is their executive functioning. In this study, inhibitory control showed positive correlations with competence in the domains of uniqueness, knowledge, anticipation, and procedural/instrumental skills, while cognitive flexibility was positively associated with uniqueness. These findings contrast with previous research reporting impairments in inhibitory control, attention, working memory, declarative memory, episodic memory, cognitive flexibility, and processing speed among caregivers13,18,68-70, which were found to be negatively associated with the QoL of the person with dementia.

Generally, caregivers who possess knowledge about dementia, its treatments, and other related aspects report less uncertainty, experience reduced caregiver burden, and demonstrate improved QoL. This knowledge enables them to anticipate the needs of the person with dementia, allowing caregivers to provide more efficient and detailed care15,71. Similarly, caregivers who report stronger skills and caregiving abilities also tend to report higher QoL24. In contrast, other studies have found that many caregivers report medium to low competence in various domains, highlighting the need to investigate caregiver training processes as a determining factor in the quality of care provided32,72. Importantly, this study found that the well-being domain was negatively correlated with caregiver burden, suggesting that caregivers who perceive themselves as having higher well-being also report lower levels of stress and burden. Supporting this, research indicates that caregivers’ stress perceptions can have a detrimental impact on their well-being19. These findings align with our data, where 56% of caregivers reported no caregiver burden and 22% reported only mild caregiver burden, suggesting that most caregivers in this sample experienced relatively low stress levels. This finding is consistent with prior studies which have shown low levels of caregiver burden, even among those providing more than 200 hours of care per month48.

Taken together, these results highlight the importance of multidimensional support for caregivers, including reducing caregiver burden, promoting well-being, enhancing knowledge about the disease, and facilitating meaningful social engagement. Strengthening these areas not only improves the caregivers’ QoL but also improves te QoL of individuals with dementia. Finally, as dementia is a progressive neurodegenerative disorder, the role of caregiving evolves over time, often leading to fluctuations in caregivers’ QoL19. Therefore, continuous and adaptable support for caregivers is essential for mitigating stress and strengthening their feelings of competence, generating a positive impact for both the caregiver and care recipient11,19.

Study limitations and future perspectives

This study has several limitations that should be acknowledged. First, the sample size was a limitation. A larger sample could have helped draw more definitive conclusions regarding the identified relationships. Additionally, the use of convenience sampling may have introduced selection bias. Future research should aim to re-examine this issue to obtain more information on the relationship between the QoL of people with dementia and the characteristics and role of the caregiver. Another limitation to consider is the study design, which was descriptive and cross-sectional and therefore did not allow for causal inferences. Furthermore, the use of a convenience sampling technique prevents generalizability of the results. Despite these limitations, the present study underscores the significant influence of caregivers’ QoL and competence on the QoL of individuals with dementia. Specifically, caregiver competence appears to be a key factor in preventing caregiver burden. In turn, caregiver burden is associated with cognitive decline in caregivers and impacts the care they provide.

 

Conclusion

This study contributes to a deeper understanding of how caregivers’ characteristics and competence influence the QoL of individuals with dementia. The findings highlight that caregivers’ competence levels were generally moderate to high. The dimensions of social interaction, uniqueness, and well-being were rated at a medium level, reflecting the essential skills needed to address the daily challenges of caregiving.

In contrast, knowledge, anticipation, and procedural/instrumental dimensions were rated highly, suggesting that many caregivers may have received psychological education or training on managing this neurodegenerative disease. Regarding the QoL of individuals with dementia, both self-reported and caregiver-reported measures yielded positive outcomes. Notably, few caregivers reported experiencing severe caregiver burden, which is known to be negatively associated with caregivers’ QoL.

Significant relationships were observed between the QoL reported by individuals with dementia and caregiver-related variables, including caregiver burden, QoL, and competence in the domains of well-being, uniqueness, social interaction, knowledge, and procedural/instrumental skills. In terms of executive functioning, inhibitory control was positively correlated with caregiver competence across uniqueness, knowledge, anticipation, and procedural/instrumental dimensions. Cognitive flexibility was also positively associated with the uniqueness domain. However, no direct association was identified between caregivers’ executive functioning and the QoL of individuals with dementia.

These results underscore the impact of caregivers’ characteristics on the QoL of individuals with dementia. They offer valuable insights into the components that should be incorporated into interventions to achieve a greater impact on people with dementia. This study underscores the need for research and interventions that target both individuals with dementia and their informal caregivers. While many studies focus on only one group, our findings demonstrate that supporting both members of the care relationship can lead to more effective and efficient interventions.

Conflicts of Interest: The authors declare no conflicts of interest related to this research.

Funding Information: This study did not receive any financial support from public, commercial, or not-for-profit funding agencies.

 

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Millenaar JK, Bakker C, Koopmans RTCM, Verhey FRJ, Kurz A, de Vugt ME. The care needs and experiences with the use of services of people with young-onset dementia and their caregivers: a systematic review. Int J Geriatr Psychiatry. 2016;31(12):1261–76. https://doi.org/10.1002/gps.4502

X

Referencias

Martyr A, Nelis SM, Quinn C, Wu YT, Lamont RA, Henderson C, et al. Living well with dementia: a systematic review and correlational meta-analysis of factors associated with quality of life, well-being and life satisfaction in people with dementia. Psychol Med. 2018;48(13):2130-2139. https://doi.org/10.1017/S0033291718000405

X

Referencias

O’Conor R, Russell AM, Pack A, Oladejo D, Filec S, Rogalski E, et al. Managing medications among individuals with mild cognitive impairment and dementia: Patient-caregiver perspectives. J Am Geriatr Soc. 2024;72(10):3011–21. https://doi.org/10.1111/jgs.19065

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Woods RT, Nelis SM, Martyr A, Roberts J, Whitaker CJ, Markova I, et al. What contributes to a good quality of life in early dementia? Awareness and the QoL-AD: A cross-sectional study. Health Qual Life Outcomes. 2014;12:1–11. https://hqlo.biomedcentral.com/articles/10.1186/1477-7525-12-94

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Takai M, Takahashi M, Iwamitsu Y, Oishi S, Miyaoka H. Subjective experiences of family caregivers of patients with dementia as predictive factors of quality of life. Psychogeriatrics. 2011;11(2):98–104. https://doi.org/10.1111/j.1479-8301.2011.00354.x

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Corrêa MS, de Lima DB, Giacobbo BL, Vedovelli K, Argimon II de L, Bromberg E. Mental health in familial caregivers of Alzheimer’s disease patients: are the effects of chronic stress on cognition inevitable?. Stress. 2019;22(1):83–92. https://doi.org/10.1080/10253890.2018.1510485

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Referencias

Palma KAXA, Balardin JB, Vedana G, De Lima Argimon II, Luz C, Schröder N, et al. Emotional memory deficit and its psychophysiological correlate in family caregivers of patients with dementia. Alzheimer Dis Assoc Disord. 2011;25(3):262–8. https://doi.org/10.1097/WAD.0b013e318209e453

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Dassel KB, Schmitt FA. The impact of caregiver executive skills on reports of patient functioning. Gerontologist. 2008;48(6):781–92. https://doi.org/10.1093/geront/48.6.781

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McCabe M, You E, Tatangelo G. Hearing Their Voice: A Systematic Review of Dementia Family Caregivers’ Needs. Gerontologist. 2016;56(5):70–88. https://doi.org/10.1093/geront/gnw078

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Carrillo GM, Gómez OJ, Aldana EA, Barrera SY, Rodríguez KA. Competencia para el cuidado (CUIDAR) en el hogar de personas con enfermedad renal crónica en hemodiálisis. Enfermería Nefrológica. 2016;19(3):265–73. https://doi.org/10.4321/S2254-28842016000300009

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