Alzheimer’s disease (AD), the most common form of dementia, is the term that describes the loss of mental abilities in a variety of areas of cognition, such as memory, speech, executive functions, and visuospatial skills. This loss is so severe that it leads to the impairment of everyday, professional, and social activities of the individual [
Caregiving is by definition a very stressful task, especially when the patient faces a chronic, degenerative disease that presents several challenges such as AD [
In Greece, according to the European Alzheimer Organization (2012), there are approximately 202.000 dementia patients. It is estimated that ninety percent of these patients live at home and are cared for by a family member. There are no official data for dementia costs in Greece. By utilizing cost indicators from other developed countries, however, the annual cost of dementia in Greece may be as high as 3 billion euros. The role of caregivers in Greece, especially in relation to AD patients, has rarely been studied. The aim of this study is to estimate the physical heath and psychological well-being of relatives who care for AD patients, measuring the effects on the Health-Related Quality of Life (HRQoL) and the existence of depressive symptoms induced from the care.
This is an observational study that was designed in order to evaluate descriptive characteristics as well as associations between sociodemographic and emotional parameters with time devoted in care for AD patients’.
Between November 2013 and March 2014, 180 relatives-caregivers of AD patients (58,1 ± 13,4 years old) from the greater Athens metropolitan area were approached to voluntarily enrol in the study. The response rate was 86,1%, resulting in 155 participants. Of the 180 caregivers approached, 25 declined to participate; 5 did not consent; 8 cared for patients suffering from other forms of dementia; and 8 did not find time to carry out the interview. The selected sample of 155 participants is considered adequate to evaluate multiple adjusted effect size measures equal to 0.14 at 5% significance level of two-sided hypotheses, achieving statistical power equal to 95% (sample size calculations were performed in G-Power v 3.0.10, Kiel, Germany).
There was no control group in this study.
Identifying the different caregivers occurred through the assistance of the more established AD and Dementia Associations in Athens greater area, such as Nestor Psychogeriatric Association, Athens Association of AD and other Dementia, Karelleio Standard Alzheimer Center, Iasis Amke Day Center, Dementia Special Clinic in Laiko University General Hospital, and Memory Disorder Clinic in Gennimatas General Hospital.
The inclusion criteria for caregivers were as follows: (a) age ≥ 18 years; (b) ability to communicate in Greek; and (c) providing written informed consent. Exclusion criteria were as follows: diagnosis of dementia other than AD. All participants were informed about the aims of the study and gave their consent to participate in the face-to-face interviews. The guided interviews were carried out at the associations’ and public hospital facilities. In special circumstances concerning the patient’s clinical condition, the interview was arranged to take place by telephone. The Ethics Committee of the Hellenic Open University gave approval for the study.
A structured, close type questionnaire was used to retrieve sociodemographic and household information from the participants. The questionnaire included questions about age, sex, education, family status, self-reported medical history of hypertension, dyslipidemia, diabetes, coronary artery disease, heart failure, COPD, and arthritis, as well as questions about the relationship with the patient (spouse, child, brother, or others) and their living conditions. In particular, they were asked whether they live with the patient and asked about the number of other housemates and the size of the house as well as the housing ownership. The educational level of the participants was classified into three groups-levels (primary education, secondary education: up to high school or technical colleges, and higher education: university, masters, and doctorate degree). Moreover, participants were also asked to evaluate their financial status (report it as good, moderate, or bad) and report potential participation in patient’s medical expenses. Finally, the stage of the disease as well as the overall time that the caregiver has been caring for their relative (in years, days a week, and hours per day), as well as potential attendance to caregivers’ support programs, was also recorded.
Depressive symptomatology was assessed using a translated and validated version of the Zung Depression Rating Scale (ZDRS) [
Previous studies render ZDRS to be a valid and sensitive measure ideal as a research instrument for clinical severity in depressed patients and support its continued use [
Health-Related Quality of Life evaluates the impact of physical and mental disorders on the general well-being of a person [
Continuous variables are presented as mean ± standard deviation and median (due to nonconvergence of the distributions with the normal distribution). Categorical variables are presented as frequencies. Correlations between categorical variables were tested by calculation of Pearson’s chi-squared test. Comparisons between continuous variables following normal distribution or with general population’s SF-36 scores were performed by measuring the control Student’s
Sociodemographic and financial characteristics of participants are listed in Table
Sociodemographic characteristics and financial status of the participants (
Age (in years) | 58,1 ± 13,4 |
Main carer (yes), % | 95,5% |
Type of relationship | |
Spouse, % | 37,4% |
Child, % | 48,4% |
Siblings, % | 2,6% |
Other relatives (in-laws, cousins, friends), % | 11,6% |
Partner, % | 0,6% |
Family status | |
Single, % | 11,6% |
Married, % | 74,8% |
Divorced, % | 11,0% |
Widowed, % | 1,9% |
Educational status | |
Primary education, % | 14,2% |
Secondary education, % | 48,4% |
Higher education, % | 37,4% |
Economic status | |
Economic participation in care (yes), % | 23,9% |
Economic status stated to be good, % | 9,0% |
Economic status stated to be moderate, % | 67,1% |
Economic status stated to be bad, % | 23,9% |
Self-reported health status of the participants, living conditions, time engaged in the care, and stage of illness of the patients are outlined in Table
Self-reported health status of the caregivers, living conditions, and time engaged in the care.
History of hypertension, % | 32,9% |
History of dyslipidemia, % | 18,1% |
History of diabetes, % | 8,4% |
History of coronary artery disease, % | 4,5% |
History of heart failure, % | 3,9% |
History of COPD, % | 3,2% |
History of arthritis, % | 13,5% |
First stage of AD (patient), % | 22,6% |
Second stage of AD (patient), % | 54,8% |
Third stage of AD (patient), % | 22,6% |
Living with patient (yes), % | 69,7% |
Years of care | 4,6 ± 3,7 |
Days/week of care | 7,1 ± 5,2 |
Hours/day of care | 10,1 ± 7,4 |
Participation in any course for caregivers (yes), % | 27,7% |
AD = Alzheimer’s disease. COPD = chronic obstructive pulmonary disease.
Moreover, the majority of the patients (85 out of the 155, percentage of 54,8%) were clinically diagnosed at the second stage of AD disease. The caregivers provided assistance for 4,6 ± 3,7 years, with an average of 7,1 ± 5,2 days of weekly care and 10,1 ± 7,4 hours of daily care. While 69,7% of the caregivers resided with the demented patient, only 27,7% of the whole group had ever received any formal education in caregiving, such as informational seminars, psychoeducational, skills-training, and therapeutic counselling interventions to help offset their burden. Due to the small percentage of caregivers receiving help there was no statistically significant association between the participation in such courses and depressive symptomatology and quality of life of the participants.
The distribution of the SF-36 and ZDRS scores of caregivers of the study is presented in Table
Depression (ZDRS) and quality of life (SF-36) scores of the caregivers and correlation coefficients between ZDRS and SF-36.
Mean ± SD | | |
---|---|---|
ZDRS score (20–80) | 42.9 ± 10.7 | |
SF-36 dimensions score (0–100) | ||
| 80 ± 22.5 | −0.434, (0.0001) |
| 65.5 ± 41.5 | −0.462, (0.0001) |
| 68.7 ± 30 | −0.422, (0.0001) |
| 64.7 ± 22 | −0.666, (0.0001) |
| 57.8 ± 23 | −0.761, (0.0001) |
| 57.4 ± 33.7 | −0.598, (0.0001) |
| 44.7 ± 44 | −0.576, (0.0001) |
| 52.7 ± 23.6 | −0.462, (0.0001) |
| 50.6 ± 10 | −0.342, (0.0001) |
| 37 ± 14 | −0.774, (0.0001) |
ZDRS = Zung Depression Rating Scale.
The associations from the multiple linear regression analysis performed between the ZDRS, PCS, and MCS scores (independent variables) and gender, age, years of school, financial level, chronic diseases, living conditions, progression of illness, weekly care, and family relationship (dependent values) are shown in Table
Results from multiple linear regression models that evaluated sociodemographics, financial status, chronic diseases, habitation conditions, aggravation of illness, kinship, and weekly care.
Factor(s): | ZUNG score | PCS | MCS |
---|---|---|---|
| | | |
Age (in years) | −0,115 ± 0,078, (0.145) | −0.073 ± 0.081, (0.369) | 0.171 ± 0.113, (0.132) |
Men versus women | 4,782 ± 1,815, (0.009) | −3.215 ± 1.864, (0.087) | −5.489 ± 2.609, (0.037) |
Primary versus middle/higher education | 0.372 ± 1.224, (0.761) | 0.502 ± 1.263, (0.691) | −0.212 ± 1.768, (0.905) |
Normotensive versus hypertensive | 5.494 ± 2.038, (0.008) | −4.442 ± 2.095, (0.036) | −3.547 ± 2.932, (0.228) |
Normal versus dyslipidemic | 1.068 ± 2.028, (0.599) | 0.477 ± 2.082, (0.819) | −1.403 ± 2.914, (0.631) |
Nondiabetic versus diabetic | 1.569 ± 2.979, (0.599) | −1.467 ± 3.056, (0.632) | 1.368 ± 4.278, (0.750) |
Coronary artery disease (Y/N) | −0.012 ± 0.006, (0.045) | −4.4 ± 3.863, (0.257) | −6.693 ± 5.407, (0.218) |
Progression of AD (Y/N) | 2.650 ± 1.138, (0.021) | 0.465 ± 1.167, (0.691) | −3.103 ± 1.634, (0.060) |
Cohabitation with patient (Y/N) | −7.950 ± 1.955, (<0.001) | 2.128 ± 2.01, (0.292) | 8.692 ± 2.814, (0.002) |
Weekly care (0–7 days) | −0.079 ± 0,148, (0.592) | 0.254 ± 0.152, (0.095) | −2.249 ± 0.212, (0.242) |
Higher versus middle and low income | 3.272 ± 1.517, (0.033) | −2,71 ± 1.568, (0.086) | −3.257 ± 2.195, (0.140) |
AD = Alzheimer’s disease, PCS = physical component summary, and MCS = mental component summary.
Comparisons of SF-36 dimensions between the sample of the study’s caregivers and an age-sex matched sample from the dataset of the Greek general population retrieved from Pappa et al. [
Comparisons of SF-36 dimensions between study’s sample and an age-sex matched sample from the general population (retrieved from Pappa et al. [
General population mean ± SD | Caregivers mean ± SD | | |
---|---|---|---|
SF-36 dimensions score(s) (0–100) | |||
| 74.8 ± 32 | 80 ± 22.5 | 0.168 |
| 71.6 ± 46 | 65.5 ± 41.5 | 0.062 |
| 70.5 ± 31 | 68.7 ± 30 | 0.455 |
| 59 ± 24 | 64.7 ± 22 | 0.040 |
| 61 ± 22.8 | 57.8 ± 23 | 0.123 |
| 78 ± 30.4 | 57.4 ± 33.7 | <0.001 |
| 83 ± 72 | 44.7 ± 44 | <0.001 |
| 63.6 ± 20.6 | 52.7 ± 23.6 | <0.001 |
Comparing the SF-36 scores of the population of the present study to those of the Greek urban general population as they were presented at another survey that was also conducted in Athens [
The link between AD caregiving and higher rates of physical and mental disorders that can cause deterioration of quality of life has been well established in the literature [
As our findings indicate, women were more adversely affected compared to men in terms of both QoL and depression. This can mainly be explained by the fact that women take up more exhausting activities such as patient’s personal hygiene and managing household chores [
The present study bears some limitations. The basic limitation is that it cannot draw any definitive conclusions about cause and effect results and, therefore, only informed assumptions can be made for the underlying relationships that affect AD patients’ caregivers’ physical and mental health. Comparisons were made only to data from epidemiological reference population, since there is no registered representative sample for the population of our study in Greece. However, comparison to a control group is required to fully assess the magnitude of the consequences brought upon the AD caregiver. In addition, the survey was conducted in only one region of the country, which, as representative as it might be since half the Greek population resides in the capital, does not fully cover the entire societal spectrum. Cross section investigation of all regions should take place. Moreover, the fact that participants did not enter the caring role at identical intervals, as well as the fact that they did not face similar care challenges at the same time, may also have affected the scores recorded. The interview of the same caregivers at different times as part of an overall cohort study could give a clearer picture of the quality of life and depressive symptoms experienced.
However this work also has some merits; the study is of the few of its kind in the Greek setting and could therefore serve as the basis for further funding and research as well as public health policies in relation to AD caregiving. Important and necessary functional, emotional, and financial support could be provided to assist relatives who serve as informal caregivers cope with the burden of caring and in this way increase their quality of life and overall economic well-being.
In conclusion, this study has shown that taking care of a family member with AD negatively affects HRQoL and depressive symptomatology. The presented findings provide strong support for exploiting the possibility of offering functional, emotional, and financial support to the caregiver. Local dementia associations could provide information, emotional support, practical advice, support groups, and training programs, assuming that greater financial support for that cause becomes available either through the state or through other fund raising processes. Under the prism of the current financial crisis that Greece faces, a National Action Plan could present a roadmap of tackling the medical, social, and financial impact of dementia in our country, assist in the overall coordination of both health and social services among a number of currently fragmented structures, and initiate a national research policy. Finally, the development and implementation of such a National Action Plan on AD disease are of the utmost importance not only in terms of supporting patients and their caregivers but also in terms of achieving long-term rationalization of state resources available for the disease.
The authors declare that they have no competing interests.
The authors would like to acknowledge the valuable contribution of all study’s participants.