Relationship Between Quality of Life of People with Dementia and Their Caregivers in Indonesia

Abstract

Background:

Caregivers, as one of the most important roles in caring for a person with dementia, have a challenging task. Therefore, maintaining the quality of life (QoL) of caregivers is an integral part of dementia care.

Objective:

To explore the relationship between the QoL of people with dementia and their caregivers in Indonesia.

Methods:

This is a cross-sectional study using binary correlations to analyze the relationship between people with dementia and caregivers’ QoL. Conducted in Cipto Mangunkusumo Hospital in Jakarta, the subjects were 42 people diagnosed with dementia according to the PPDGJ-III (adapted from the ICD 10) and 42 primary caregivers with at least 6 hours duration of caregiving per day. The QoL of people with dementia was measured by EuroQol-5D and VAS EQ-5D, while severity of dementia was measured by MMSE. Caregivers underwent an interview using WHO Quality of Life Instrument (WHOQOL-BREF) and NPI.

Results:

Most caregivers were women, aged 40–70 years old. The study found caregivers’ QoL environmental domain strongly correlated with people with dementia’s QoL (r = 0.839). Severity of dementia had a strong correlation with caregivers’ QoL physical domain (r = 0.946). Age, duration of caregiving per day, period of care provided by caregivers, and caregiver’s distress had a strong correlation with caregiver QoL for specific domains.

Conclusion:

There was a strong correlation between people with dementia’s QoL and caregiver QoL, so in managing dementia, clinicians should consider caregivers’ wellbeing as an essential part significantly affecting the quality of elderly care improvement.

Keywords

Caregivers dementia Indonesia quality of life

INTRODUCTION

Quality of life (QoL) is one of the most important parts of a human, as psychological wellbeing. Many things could affect one’s QoL; in the elderly, dementia is among them. In Indonesia, no less than 1.2 million people were affected with dementia in 2015, and this number will continue to rise to over 4 million by 2050 as life expectancy elongates [1]. Life expectancy in Indonesia was 71.5 years old in 2019, with a healthy life expectancy of 62.6 years old. There were around 8.8 years of elderly living an unhealthy life or contracting diseases [2]. Adding years to life is not necessarily meaningful but adding life to years is what really matters. That is why QoL is one of the most important factors regarding one’s life.

In a person with dementia’s daily life, the caregiver’s role becomes important as they are providing nursing from basic needs as well as related personal needs. Caregiving for a person with dementia is no effortless job; it requires physical, mental-emotional, and financial support, by which the caregiver may be overwhelmed. Therefore, caregivers are more prone to feel anger, burdened by responsibility, isolated, and finally depressed. Thus, not only is the QoL of people with dementia important, but the caregiver’s QoL should also be recognized and well managed.

QoL is usually defined by most people as an ideal and essential life achievement. It could be described as external substantial components such as physical health, safety, or support from friends and family. On the other hand, QoL is interpreted subjectively with feeling happy or fulfilled in every aspect of life [3]. The World Health Organization (WHO) defines QoL as an individual’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 [4].

Different approaches in defining QoL considers many aspects of life that could be influencing one another. Many researchers with clinical backgrounds will use health-related QoL for their study. There are several methods to measure QoL. An objective method uses standardized indicators such as illness, poverty, or criminality rate. Subjective aspects of QoL are measured from the individual’s perspective in several aspects of life [5].

Dementia is characterized by progressive cognitive decline marked by loss of memory capacity, language, problem-solving, judgment, comprehension, orientation, reasoning, and other cognitive skills while being fully alert. This condition affects one’s ability to perform daily activities [6, 7]. As the condition of people with dementia deteriorates over the course of illness, their ability to think and do activities is reduced until they are in a vegetative state. Therefore, people with dementia always need caregivers to take care of their personal hygiene and basic needs [8].

Caregivers of people with dementia are mostly informal and include family members (spouse, daughter), neighbors, or friends who are unpaid, whether they underwent formal caregiving training or workshop or not. On the other hand, formal caregivers get paid for their assistance and skill in caring a person with dementia [7]. A caregiver’s tasks are usually helping people with dementia to do daily activities and meet their basic needs like shopping, prepare meals, mobility, hygiene, administer medicine, always ready in case of emergency, and helping to plan for medication and treatment [9].

With the increasing number of people with dementia in Indonesia, there is also an increased number of caregivers’ demands. Thus, people with dementia and the caregiver population in Indonesia will always be expanding. These large populations should be given the attention they need, especially from clinicians and the government. This study aimed to find out the relationship between people with dementia and their caregivers’ QoL in Indonesia. In the last five years, there were many studies associating people with dementia and caregivers’ QoL with several risk factors, but it was represented regionally. Since Jakarta is known as the ‘Miniature of Indonesia’, the authors assumed the participant in this study would represent various cultures and tribes in Indonesia. The results of this study could endorse policymakers and clinicians to emphasize the importance of acknowledging and involving the caregiver’s wellbeing as well as people with dementia.

MATERIALS AND METHODS

Participants

Forty-two people with dementia (mean age = 77.17±8.32; 17 males and 25 females) and 42 caregivers (mean age 50.93±16.93; 11 males and 31 females) was recruited through probability sampling in the Geriatric Outpatient Clinic and Psychiatry Outpatient Clinic, both in Cipto Mangunkusumo National Public Hospital Jakarta from January until March 2019. All the subjects volunteered to participate in the study. All people with dementia have been diagnosed with dementia according to ICD10 Indonesian version/PPDGJ-III [10], with no physical difficulties (paralysis, disability, and others). One primary caregiver of each person with dementia, who takes full responsibility for the dementia person’s well-being and helps with planning or decisions for at least 6 months, was chosen to participate. A caregiver was excluded if they were also taking care of another person (baby or other elderly). All subjects were given information about the aim, procedure, policy of the study, and signed written informed consent. This study was approved by the ethical clearance committee of the Faculty of Medicine Universitas Indonesia.

Measures

Data obtained from the questionnaire included age, gender, education, job, marital status, time since diagnosis, living together, history of dementia, family support, and medication. The Mini-Mental State Examination (MMSE Indonesian version [11]) was used to assess the severity of dementia, and the Euro QoL 5D-3L (Indonesian version adapted from [12]) was used to assess health status and self-rated health (EQ-5D VAS) to assess the QoL of people with dementia.

Caregivers’ QoL was assessed by the WHO Quality of Life short version (WHOQOL-BREF Indonesian version) [13]. Caregivers were interviewed with a questionnaire to collect demographic data (age, sex, education, jobs, marital status, period of care provided, relationship with the person with dementia, duration of caregiving each day, and caregiver training). A subset of data (n = 13) of people with dementia was asked to their caregiver about the occurrence and frequency of Behavioral and Psychological Symptoms (BPSD) including the level of caregiver distress using the 12-items Neuropsychiatry Inventory (NPI) [14].

Statistical analysis

Statistical analysis was performed using the Statistical Package for Social Sciences (SPSS) application, version 20.0 for Windows. Participants’ characteristics and demographics were expressed as sums and percentages. Descriptive analytic tests and normality tests were used to observe participants’ demographic characteristics and distributions. Table and textual context were used to display the demographics of all participants. Results from EQ-5D were sorted into categories, (1) for no detected problems in health status (2), and (3) for mild-severe problems with health status perceived by people with dementia and observed by caregivers. The EQ-5D VAS score was divided as low and high by the 70th percentile of the group.

WHOQOL-BREF raw scores were converted to WHOQOL-100 and then interpreted as high and low by mean score within the participant’s group. Statistical analyses used in this study consist of correlation (r coefficient) and association (p-value) relationships, according to the type of variables analyzed. Pearson’s correlation was used to analyze the correlation between quantitative variables if the data’s distribution was found normal, while Spearman’s correlation was used if not. The correlation coefficient (r) was obtained from correlation analysis, ranged from -1 until 1 in which 0.8–1 indicated a strong correlation. Analysis of variance one way (one-way ANOVA) and Independent t-test were used to analyze numerical data that was sorted into categories, with Kruskal Wallis and Mann Whitney for alternatives in non-parametric analyses. The significance adopted in the analysis was p < 0.05.

RESULTS

Subject characteristics

Table 1 shows the characteristics of subjects (people with dementia and caregiver). People with dementia in this group are mostly women, aged between 71 and 80 years old, with more than 80% who underwent formal education and living with their children. The majority of people with dementia have no family history of dementia. Approximately 74% of caregivers in this group were women, with the majority being daughters and primary caregivers of people with dementia. Almost all caregivers never went through formal training. Half of the caregivers were responsible for 16 hours of care per day or greater.

Table 1

Sociodemographic characteristics of PWD^* and caregivers

	PWD	Caregivers
	(N = 42)	(N = 42)
Age
41 –50 (%)	–	11 (26.2)
61 –50 (%)	–	11 (26.2)
71 –80 (%)	17 (40.5)
Women (%)	25 (59.5)	31 (73.8)
Islam (%)	33 (79)	33 (78.6)
Schooling
Elementary	7 (16.7)	3 (7.1)
Junior high	11 (26.2)	3 (7.1)
High school	9 (21.4)	14 (33.3)
College degree	15 (35.7)	22 (52.8)
Married (%)	21 (50)	30 (71.4)
Employed (%)	34 (81)	15 (35.7)
Duration of illness
< 5 years (%)	28 (66.7)	–
5 –10 years (%)	11 (26.2)	–
Living with
Child (%)	17 (40.5)	–
Spouse &child (%)	13 (31)	–
Relationship with PWD
Child	–	17 (40.5)
Spouse	–	13 (31)
Family support (%)	31 (73.8)	–
No formal training (%)	–	38 (90.5)
Period of care
< 1 year (%)	–	5 (14.3)
1 –5 years (%)	–	24 (57.1)
6 –10 years (%)	–	10 (23.8)
> 10 years (%)	–	2 (4.8)
Duration of care
6 –10 h/day (%)	–	9 (21.4)
11 –15 h/day (%)	–	12 (28.6)
16 –20 h/day (%)	–	21 (50)

Age, gender, religion, marital status, employment status, living with, and relationship with PWD data shown were the majority of the group. PWD, person with dementia.

Quality of life of people with dementia and their caregivers

QoL of people with dementia measured by EQ-5D is shown in Table 2. Each item was categorized by severity level (see Methods). Health status was observed objectively by people with dementia and confirmed by their caregiver, showing that most people with dementia in this group have some problems in mobility. Quality of health state was rated subjectively by people with dementia; five subjects did not fill the self-rated questionnaire (3 bedridden, 2 refused). This result found that more than half of the people in this group felt their health state below the standards group population. Caregivers’ QoL was measured by WHOQOL-BREF and was converted to WHOQOL-100. The results found in this group of caregivers have a good QoL in psychological and social relation domains and the worst QoL domain was environmental domains (See Fig. 1).

Table 2

Person with dementia Quality of Life (EQ-5D)

	Level 1	Level 2	Level 3	Score
EQ-5D
Mobility	11 (26.2)	27 (64.3)	4 (9.5)
Self-care	23 (54.8)	10 (23.8)	9 (21.4)
Usual activities	21 (50)	14 (33.3)	7 (16.7)
Pain/discomfort	24 (57.1)	18 (42.9)	–
Anxiety/depression	33 (78.6)	9 (21.4)	–
EQ-5D VAS
Below standard ^a				23 (54.8)
Above standard				14 (33.3)
Missing ^b				5 (11.9)

^aStandard was obtained from 70th percentile of group score = 80. ^b5 PWD were unable to filled the scale because of their condition/refused to answer.

Fig. 1

Caregivers Quality of Life (WHOQOL). Caregivers QoL measure by WHOQOL-BREF, then converted to WHOQOL-100. QoL was divided into four domains. The standard group was taken by mean score in the group population. Good QoL was in the psychological and social relation domains, while the worst was environmental domains.

Figure 2 describes BPSD symptoms measured by NPI 12 items. Anxiety is the most common symptom of BPSD found in 8 out of 13 people with dementia (61.54%), followed by apathy in 7 people, and by agitation, depression, and sleep disturbances in 6 people for each symptom. The least common sign and symptom was aberrant motor behavior showed in only 1 person with dementia. As seen in Table 3, people with dementia who have symptoms of apathy appear as the most frequent symptoms (4.00±0), with its distress in caregiver scored 1.43±0.98, whereas the highest caregiver distress was caused by agitation (2.50±1.52) and disinhibition (2.50±0.71).

Fig. 2

Prevalence of behavioral and psychological symptoms of dementia (n = 13). A subset data of samples with present behavioral and psychological symptom(s) was collected from 13 people with dementia. The table shows how many people with dementia are present with each symptom according to the 12-items NPI. The most common signs of BPSD were anxiety (n = 8), followed by apathy (n = 7), and agitation, depression, and sleep disturbances (n = 6). Whereas the least common sign was aberrant motor behavior (n = 1).

Table 3

Frequency and severity of BPSD and caregiver’s distress using NPI scale (n = 13)

Symptoms (n)	Frequency	Severity	Total score	Caregiver distress
Delusion (3)	2.33±1.53	1.67±1.15	5.00±6.08	0.67±1.15
Hallucination (3)	2.33±1.53	1.67±1.15	5.00±6.08	0.67±1.15
Agitation (6)	2.83±1.17	1.83±0.75	5.67±3.93	2.50±1.52
Depression (6)	2.17±0.98	1.5±0.55	3.50±2.51	1.67±0.52
Anxiety (8)	2.38±1.41	1.33±0.71	3.50±2.27	1.88±0.99
Euphoria (3)	3.00±1.00	1.00±0	3.00±1.00	0.67±0.58
Apathy (7)	4.00±0	1.5±0.79	6.29±3.15	1.43±0.98
Disinhibition (2)	2.00±1.41	2.00±1.41	5.00±5.66	2.50±0.71
Irritability (4)	2.00±1.00	1.71±0.76	4.00±3.79	2.14±1.57
Aberrant motor behavior (1)	3.00	2.00	6.00	2.00
Sleep disturbances (6)	2.50±1.05	1.50±0.84	3.83±2.79	1.67±1.21
Eating problem (4)	3.00±1.41	1.50±0.58	4.75±2.99	1.75±0.96
Total NPI score (13)			19.38±17.76	6.85±5.77

Score is presented as mean±SD from the number of people with present symptoms (n).

Figure 3 shows the variance of NPI score in each people with dementia and its caregivers’ distress. The 12-item NPI score has the lowest score in 4, with 73 as the highest, while the caregivers’ distress (mean±SD = 6.85±5.77; median = 5.00) has its lowest score in 2 and highest in 22. We found the mean NPI total score is 19.38 with±17.76 standard deviation and median = 14.00. The 12-item NPI was found to have a low correlation with caregiver distress, using Spearman’s non-parametric correlation (r = 0.331). Caregiver’s distress had strong statistic significant correlation with social relation domain WHOQOL-BREF (r = 0.841) as well as physical domain (r = 0.813) and psychological domain (r = 0.785), meanwhile only moderate significant statistic correlation with environment (r = 0.474).

Fig. 3

NPI score and caregiver distress (n = 13). A subset data of samples with present behavioral and psychological symptom(s) was collected from 13 people with dementia. The table shows the variance of NPI score in each people with dementia and its caregivers’ distress. The mean±SD of the 12-items NPI score is 19.38±17.76, while caregivers’ distress is 6.85±5.77. The lowest NPI score is 4, with 73 as the highest.

Correlation between quality of life of people with dementia and caregivers

Bivariate analyses showed that there was a positive correlation between people with dementia’s QoL and their caregivers’ QoL (Table 4). There was a very strong correlation marked between people with dementia’s QoL with the environmental domain of caregivers’ QoL (r = 0.839). There was also a very strong correlation between people with dementia subjective QoL and the social relationship domain of caregivers’ QoL (r = 0.820).

Table 4

Correlation between PWD and caregiver’s Quality of Life

	Caregiver QoL
	Physical	Psychological	Social relationship	Environmental
PWD QoL
EQ-5D^a	0.142	0.413	0.263	0.839
EQ-5D VAS^a	0.128	0.263	0.820	0.160

^aBivariate correlation using Pearson’s correlation.

Factors influencing caregivers’ quality of life

Caregivers’ QoL is influenced by internal and external factors. In this study, there were several internal factors that strongly correlated with caregivers’ QoL (Table 5). Meanwhile, caregiver QoL such as physical domain (r = 0.946) and social relationship domain (r = 0.786) had a very strong and strong correlation with the severity of people with dementia’s cognitive level which is measured by MMSE.

Table 5

Correlation between sociodemographic variable with caregiver QoL (WHOQOL)

Sociodemographic variable	Caregiver QoL
	Physical	Psychological	Social relationship	Environmental
Caregiver
Age^a (r)	0.609^*	0.188	0.805^*	0.638^*
Period of care provided^b (r)	0.238	0.927^*	0.581^*	0.644^*
Duration of care per day^c (p)	0.039^p	0.140	0.310	0.074
Gender^d (p)	0.092	0.872	0.882	0.906
Religion^e (p)	0.825	0.378	0.021^p	0.755
Level of education^b (r)	0.282	0.132	0.577^*	0.522^*
Employment status^e (p)	0.889	0.562	0.408	0.148
Marital status^e (p)	0.871	0.171	0.979	0.880
Caregiver training^d (p)	0.417	0.469	0.183	0.550

^aBivariate correlation using Pearson’s correlation; ^bbivariate correlation using Spearman’s correlation; ^cbivariate relationship using one-way ANOVA (p < 0.05); ^dbivariate relationship using Mann Whitney; ^ebivariate relationship using Kruskal Wallis; ^*significant correlation coefficient (r); ^psignificant association (p).

The caregiver’s age had very strong and a strong correlation with social relationship, environmental, and physical domains of the caregiver QoL using the Pearson correlation (r = 0.805, r = 0.638, r = 0.609 consecutively). Using Spearman analysis, the length of caregiving periods also had a very strong correlation statistically with caregivers’ psychological domain (r = 0.927), a strong correlation with environmental domain (r = 0.644), and a moderate correlation with social relationship domains (r = 0.581), while the duration of care per day had a significant relationship with the physical domain of caregivers’ QoL (p = 0.039) using One-way ANOVA analysis.

From sociodemographic variables, religion was analyzed using non-parametric Kruskal Wallis and found to have a significant association (p = 0.021) with caregiver’s social relationship domain. Level of education had moderate correlation with social relationship (r = 0.577) and environmental domains (r = 0.522), using Spearman’s correlation.

DISCUSSION

This study established the correlation of QoL of people with dementia and QoL of caregivers, in addition to associated factors determining the caregivers’ QoL. These findings suggest the importance of thorough supportive management for caregivers equivalent to people with dementia.

Barbe et al. study found most people with dementia lived with their family (spouse or daughter), who are usually helping them with basic needs and daily activities [15]. Our study had similar findings (70%), but those family caregivers could also maintain people with dementia’s social relationships and other prior activities carried by people with dementia.

In terms of living situations, there is also consistent finding with research done by Barbe et al., Brodaty et al., and Farina et al. [15 –17]; it was established that majority of informal caregivers were spouses or children and children-in-law, mostly female, who lived with people with dementia. These caregivers had poorer QoL and more severe depression symptoms compared to those caregivers who live apart from people with dementia [18]. It appears most primary caregivers did not have a formal job so there was no stable financial support. Furthermore, many women caregivers also have a responsibility to do household chores, raise their child, and other duties as housewives. This energy-draining labor would accumulate as a burden which could consequently reduce the quality of caregiving. This finding is in line with a previous study by Andreakou et al. [18] that reported woman caregivers mostly have a lower QoL and more depression symptoms than men.

A study from Montgomery et al. [19] stated 48% of caregivers were personally responsible for more than 13 hours of care per day and provided at least four years of care. This current study found most caregivers provided less than five years of care and more than half the population of this group was responsible for more than 16 hours of care per day. This extends an affirmation to abundant care that caregivers provide to people with dementia. Aside from caring for people with dementia, caregivers also had to take care of their personal interests including childbearing, careers, and relationships [16].

This study found 73.8% of people with dementia have problems in mobility but the overall health state measured by the EQ-5D questionnaire confirmed by their caregiver indicated this group in a good state. However, in the self-rated health state, 54% of participants had a subjective QoL below the standard (70th percentile). These findings can be understood because one’s health state was influenced by individual perceptions about their physical condition and their ability to do daily activities. Poor QoL is marked in people with dementia with disabilities to do daily activities such as personal hygiene [20].

A previous study from Farina et al. [17] indicated there were comorbidities affecting caregiver QoL and care of people with dementia such as Lewy body dementia (LBD). This condition could precipitate by alteration in the LBD’s patient behavior, notably with hallucination which appear in LBD course of illness. In our study, we did not specify the type of dementia, but we did subset data analyses for the behavior symptoms using NPI. Caregivers’ distress seems to be mostly burdened by agitation and disinhibition. This study found that for people with dementia who have symptoms of apathy, despite being the most frequently apparent symptoms, the caregiver’s distress was not significantly affected.

Agitation and disinhibition were symptoms that act more actively toward the environment, therefore significantly affecting caregiver distress. This was proven by the strong correlation between caregiver distress and the social relationship domain of QoL (r = 0.841). This finding is consistent with Indonesian culture where family and gatherings are preferred on a regular basis, especially on special occasions (e.g., Eid Al-Fitr, Christmas, etc). When those symptoms present, the caregiver’s burden, and stress will also escalate due to feelings of shame and stigma received from others.

From the caregivers’ sociodemographic aspect, the level of education had a significant correlation with social relationships and the environmental domain. The awareness and knowledge about the nature of disease including their hope and expectation could give a significant effect on the QoL of people with dementia which also reciprocates the caregivers’ QoL.

Maintained good relations with family and friends are known to improve people with dementia’s QoL. Acceptance and assistance from family and friends could make people with dementia’s QoL better. Meanwhile, rejection or loneliness, and feeling undesirable/uncomfortable with close family or home environments could worsen their QoL because they are a very important part of support in dementia care [17]. In Asian countries, particularly Indonesian culture, families are the core of care support systems. The family has more power than the person with dementia itself, who frequently made important decisions for the person with dementia. [21]

Most Asian countries are influenced by strong religious and spiritual values, thus forming a culture that families taking care of the elderly with dementia is something commonly accepted. Children have an obligation to respect and dedicate themselves to their parents. This perspective usually makes caregivers more accepting and caring for patients with dementia, compared to western culture. This could have a positive impact on the caregiver’s emotionality as a coping mechanism. Despite its drawbacks, this can negatively impact the early diagnosis of dementia, active treatment-seeking, and therapeutic optimism [21].

Indonesia is one of the countries with the largest Muslim population in the world (87.2%) [22]. As already known, Muslim societies have many gatherings, group, and ritual activities. This could somehow increase social interaction that exists within the religion, both from family and personal circles to public religious activities. This might be the reason behind the significant association we found between religion and social relationship domain, although these hypotheses need further study to prove it. Social relationship in Elderly Indonesian population has a significant meaning, as shown by Redayani P study in Manggarai district, Jakarta [23].

In this study, one-third (31%) of caregivers were elderly spouses of people with dementia, who have limited workload and abundant emotional burden that might be related to poor QoL. Changes in people with dementia’s behavior, loss of ability to communicate, or notable functional deterioration were described as a frustrating situation to spouse caregivers. These conditions contribute to emotional and QoL decline in spouse caregivers [17]. Lack of emotional and financial support from family and close friends could affect caregivers’ QoL. Poorer QoL in spouse caregivers resulted from a higher burden and lower physical and mental health well-being [24].

Our study established internal factors contributing to caregivers’ QoL, including the period of care provided and the duration of caregiving each day. Both of those internal factors had a strong correlation with caregiver QoL. The majority of caregivers in this study provide care for less than five years which is usually when behavioral problems occurred in people with dementia. Those factors determined caregivers’ poor QoL specifically in psychological and environmental domains.

One of the internal factors influencing caregivers’ QoL is the duration of care each day. Zacharopoulou et al. [24] found the QoL was potentially determined by the duration of care especially if more than 8 hours of caregiving every day could decrease caregiver QoL. This current study extends the statement by finding more than half of the population in this study group were caring for people with dementia for more than 16 hours per day. Duration of care is strongly correlated with the physical domain in caregiver QoL. The majority of people with dementia lived together with their caregivers leading to almost full-time duties; this situation will eventually drain the caregiver’s energy. When caregivers felt tired, they usually prefer to do chores alone without involving the person with dementia. It is very important to engage people with dementia in activities such as household chores supervised by caregivers that could improve their QoL. Therefore, maintaining the caregiver’s condition and QoL are as important as people with dementia’s health state and QoL.

Our study found a significant correlation between people with dementia and caregiver QoL which interacts with each other, particularly for disease severity of people with dementia and their quality of health. Self-rated health state or termed as the quality of health of the people with dementia was proven to have a strong correlation with caregiver QoL specifically in the environmental domain (r = 0.839).

In the WHOQOL instrument, the environmental domain was rated by several aspects such as physical safety and security, transportations, financial, home environment, recreation/leisure activities, and health and social care [4]. Severity of the disease, BPSD, and functional decline are among other factors influenced low QoL in caregiver who lived together with people with dementia. Formal expenses (medicine, medical and institutional care) and informal expenses (daily needs, loss of income, and informal care) were caregiver responsibilities, which lead them to believe that financial support could improve their QoL [17].

One of the external factors that affect caregiver QoL was their physical health status. This domain had a very strong correlation with severity of the disease (r = 0.946) measured by MMSE. Montgomery et al. [19] discovered the severity of Alzheimer’s disease is related to the poor QoL of caregivers. Progressive cognitive deterioration resulted in the inability to do daily activities, with more severe declines made the people with dementia more dependent on formal or informal care. These problems worsen in caregivers with comorbidities or psychological problems and leading to disruption of caregivers’ role personally or professionally.

From this study we can derive that each domain of caregivers’ QoL is influenced by people with dementia’s QoL and vice versa, thus maintaining caregivers’ QoL aspects is one of the goals in dementia management, because in practice caregivers’ QoL have not received the attention they deserve yet, especially in Asian countries, where there were inadequate resources and a lack of policy on dementia care, as dementia care is not a health care priority yet [25]. Service delivery and support systems for caregivers are an integral part of dementia management and this should be a consideration for policymakers and clinicians.

In line with the consensus program on Improving the Quality of Life for Asian People with Dementia (QoLDEM), support systems for dementia care should involve a multidiscipline approach. Partnerships between people with dementia and their caregivers, health professionals, local communities, and policymakers should be established. Policymakers are expected to make a regulation of care-plan for dementia and the community, with active implementation and evaluation. This will also require participation from non-health community leaders and members, such as police and legal workers, social workers, religious organizations, NGO sectors, philanthropic foundations, and media [26].

Execution of a well-planned strategy will make a huge improvement in dementia care holistically, with dementia people and caregivers as the central part of consumer participation. From delivering the diagnosis of dementia to treatment plans and possible future outcomes, patients and families should be informed in a caring and optimistic atmosphere, by providing all the necessary support. Including in conflict resolutions and enhancement of positive relationships through counseling and negotiation whenever family conflicts arise. Preferably, a care-plan coordinator/case-managers should be appointed for each person with dementia to engage closely with their home care and family environment. People with dementia and their caregivers should also be actively invited to participate in education programs, public education activities, and policy development, therefore improving both of their QoL [26].

Indonesia has a national strategic dementia plan [27] launched 5 years ago but the implementation and monitoring of it still needs further evaluation. Even though people’s awareness of dementia is increasing, there remains many mistreatments and neglect of people with dementia in practice. Strong initiative and partnership between society and government should be more synchronized and coordinated. To achieve a better QoL for both people with dementia and their caregivers, a good delivery service system should be available and easily accessible by society. Comprehensive dementia care is urgent to set up in any level of care institutions including hospitals.

In this study, caregiver’s physical disability and mental-emotional problems within the period of care were unknown. This study focused only on the physical and psychological aspects of QoL of people with dementia, besides their behavior problems. Meanwhile, to evaluate QoL requires a broader approach not just in both domains, but also in the social relations and environmental domain of people with dementia, including health and social services they have been receiving.

Footnotes

ACKNOWLEDGMENTS

The authors would like to thank Dr. Cipto Mangunkusumo Hospital Jakarta especially the Geriatric outpatient clinic and Geriatric Psychiatry outpatient clinic staff and all the participants.

Authors’ disclosures available online ().

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