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00005768-200906000-0000300005768_2009_41_1182_gusi_caregiver_6article< 103_0_20_3 >Medicine & Science in Sports & Exercise©2009The American College of Sports MedicineVolume 41(6)June 2009pp 1182-1187Health-Related Quality of Life and Fitness of the Caregiver of Patient with Dementia[CLINICAL SCIENCES]GUSI, NARCÍS1; PRIETO, JOSUE1; MADRUGA, MIGUEL1; GARCIA, JOSE M.2; GONZALEZ-GUERRERO, JOSE L.31Faculty of Sports Sciences, University of Extremadura, Cáceres, SPAIN; 2Health System of Extremadura, Cáceres, SPAIN; and 3Geriatric Unite, Hospital of Cáceres, Cáceres, SPAINAddress for correspondence: Narcís Gusi, Ph.D., Faculty of Sports Sciences, University of Extremadura, Avenue Universidad s/n, 10071 Cáceres, Spain; E-mail: ngusi@unex.es.Submitted for publication August 2008.Accepted for publication October 2008.ABSTRACTPurpose: The aim was to assess the health-related quality of life and physical fitness of women who care for a relative with dementia compared with an age-matched group of noncaregiver women, for the purpose of designing adequate physical exercise programs.Methods: A cross-sectional study was conducted in Extremadura, Spain, with 54 caregivers and 56 noncaregivers who were assessed by the SF-36 questionnaire and a battery of fitness tests.Results: The reported mental health (mental, emotional role, and social categories of SF-36) of the carers was 22% lower than that of the noncaregivers, but both groups were similar in physical health. On the whole, the reported general health of the carers was 11% lower than that of the noncarers. In fitness outcomes, caregivers had better scores in body composition, bimanual strength, and leg strength but lower scores in the endurance capacity of the trunk extensor muscles.Conclusion: Relative to the standard exercise programs of the general population, exercise programs for female caregivers should be more focused on preventing back pain by developing the endurance strength of the trunk extensors. A supervised exercise program including the interaction between caregiver and health professional could also help to minimize the psychosocial components that affect the health-related quality of life.Given the increasing number of people whose conditions are diagnosed with dementia worldwide and the financial implications of managing this disabling condition, dementia has been recognized as a public health priority (2). It has been estimated that the total number of persons with dementia will double every 20 yr for the period 2000 to 2040 at a global rate of 4.6 million new dementia cases every year (10). This is the result of current demographic trends, namely, the increasing age of the population, and it will particularly affect underdeveloped countries. In Spain, the number of people with dementia ranges between 533,388 and 583,208, which is 1.24% to 1.36% of the total population of 43,038,035; this is a somewhat higher dementia prevalence than the European average of 1.14% to 1.27% (2,10).Between 70% and 80% of the cases of patients with dementia in Spain are cared for at home by informal primary carers (9), that is, unpaid people who have a main role providing care for a person with dementia (26). Most informal primary carers are women from 55 to 65 yr with primary studies and lived at home with the care recipient (4). Providing care for an elderly relative often restricts the personal life, social life, and employment of the caregiver. For example, caregivers may have less time for leisure (21) or physical activity (12,21).The negative impact of caregiving on the health of the caregiver is well documented. Caregivers frequently suffer mental (94%) and physical (84%) problems that affect their health-related quality of life (HRQOL) (4). With regard to mental health issues, research shows that caregivers are more prone to anxiety-depression (22,28,34), emotional strain, and sleep problems than the noncaregiver population (33). In addition, caregiving is associated with higher rates of most psychiatric disorders and higher prevalences of disability and physical illness (7). Indeed, caregiving is even a risk factor for mortality (25).Whereas the effects of caregiving on the physical health of the caregiver are less pronounced and less consistently found than the effects on mental health, they are still important because of the large number of family caregivers, which represents a potentially large public health impact (30). Research shows that caregivers have lowered cellular immunity (5), elevated blood pressure responses (18), and suffer more frequently from back pain, fractures, and fatigue (4). However, the general fitness levels of caregivers are still poorly understood, which makes it difficult to identify caregiver-associated health risks or to develop adequate physical exercise programs.Despite the importance on health-related quality of life, physical fitness has rarely been investigated on caregivers. Few longitudinal trials included the assessment of physical fitness (14,29). Although these trials were not specifically designed to assess the fitness profile of the carers of persons with dementia compared with age-matched group (e.g., nonspecific in dementia, differences in the range of age, the physical activity levels of noncaregiving tasks, recruitment, or the profile testers), their valuable baseline measures indicated that older carers were, overall, approximately 15% worse on average than normative values scores for healthy people of similar age (14). Here, we assessed the health-related quality of life and physical fitness of female caregivers of relatives with dementia relative to those of an age-matched group of female noncaregivers.We hypothesized the following: Hypothesis 1: Caregivers were expected to have worse health-related fitness (HRF; body composition, musculoskeletal fitness, and motor fitness) than noncaregivers. Hypothesis 2: Caregivers were expected to have a worse health-related quality of life (mental health outcomes and physical health outcomes) than noncaregivers.METHODSParticipantsThis investigation used a cross-sectional study design where caregivers were compared with noncaregiver women who did not exercise regularly (less than two sessions or bouts of 30 min·wk−1). For the investigation, the primary caregiver was defined as a person who had a family member with dementia (Alzheimer, vascular dementia, and others) and provided at least 20 h of in-person care per week (4). To qualify as a noncaregiver, the person had to report no caregiving responsibilities for any frail family member in the past 10 yr. Eligible women for both groups were those aged 50 yr and older who did not have any physical problems that precluded their ability to complete a battery of fitness tests, as assessed by the Physical Activity Readiness Questionnaire (27). The caregivers were recruited from regional associations of relatives of patients with dementia. After sending all members an invitation to participate in the study, 63 caregivers asked for more detailed information about the study. Once they were informed about the protocol, 54 eligible persons consented to participate in the study. The noncaregivers were recruited from two urban and two rural primary care centers in the central area of Cáceres (Spain). We located the participants by recruiting general practitioners, who in turn informed individuals about the protocol. Seventy noncaregivers asked for more detailed information about the study, and 56 eligible persons consented to participate in the study.All participants gave their written informed consent once the study protocol had been explained to them. The study was exclusively developed and performed at the University of Extremadura, Spain. It adhered to the updates of the Declaration of Helsinki and was approved by the Committee on Biomedical Ethics of the University of Extremadura.MeasuresThe sociodemographic characteristics that were measured included age, place of residence, marital status, number of coresident persons, educational level, smoking and alcohol habits, and level of physical activity. In a single session at home, each subject first completed the questionnaires and then performed the battery of fitness tests. The questionnaires were administered by a trained interviewer, whereas the fitness tests were administered by a physical fitness tester.Health-related quality of life.Health-related quality of life was measured by using the Short Form 36 (SF-36) health survey questionnaire, which is a generic measure (31) that has been translated and validated in Spanish (1). It consists of 36 items assessing eight functional parameters: physical functioning (PF), physical role limitations (RP), bodily pain (BP), general health (GH), vitality (VT), social functioning (PS), emotional role limitations (RE), and mental health (MH). The scores of each parameter range from 0 (worse health state) to 100 (best health state) relative to the Spanish norm-reference of the general population. The first four parameters add up to the Physical Component Summary (PCS), whereas the latter four parameters add up to the Mental Component Summary (MCS). Question 2 of the questionnaire, which refers to the change in health during a period (the question asked whether the respondent's general health was much better, somewhat better, stayed the same, was somewhat worse, or much worse compared with the previous year), does not contribute to the final score, and the data from this question were analyzed separately.Health-related fitness.All participants completed a battery of health-related fitness tests for older people for a period of approximately 45 min. Patients were tested without previous warm-up to control or reduce the individual variability influenced by the warm-up. Initially, the weight, height, and circumferences of the waist and hip were measured according to the recommendations established by the European Council (20) for calculating the body mass index (BMI) and the waist-hip ratio (WHR). Handgrip strength was assessed for both hands by using a hand dynamometer (TKK; Tokyo, Japan), and the mean value of both hands was considered to be the outcome. Our group reported the test-retest intraobserver reliability coefficient of this test (intraclass coefficient = 0.99) in Spanish adults (23). Lumbar trunk muscle endurance was assessed by using by two tests (17). To evaluate flexor endurance, the subject was asked to lie in a supine position and to raise the lower extremities with 90° flexion of the hip and knee joints. To evaluate extensor endurance, the subject was asked to lie a prone position while holding the sternum off the floor. During both procedures, the subjects were asked to maintain the original positions for as long as possible but not exceeding a 2-min time limit. The time (s) over which subjects could maintain each position was considered to be the outcome. The reported intraclass coefficient of the flexor endurance test was 0.95, and the extensor endurance test was 0.97 (17). Flexibility was assessed by using the sit-and-reach test (32). Here, the distance (6) between the tips of the fingers in the start to the final positions during this trunk flexion was recorded. The best result of three trials was considered as the outcome. We reported the test-retest intraobserver reliability in Spanish adults (intraclass coefficient = 0.94) (23). Postural balance was assessed by performing a blind flamingo test (13,23,24) in which the barefoot subject stood with eyes closed on one leg, while the other leg was flexed at knee level and held at the ankle by the hand of the same side of the body. The number of trials that the subject needed to complete 30 s of the static position (the chronometer was stopped whenever the subject did not comply with the protocol conditions) was measured. The outcome was expressed as number of trials (= number of falls + 1). In our group, the test-retest intraobserver reliability coefficient of this test calculated (intraclass coefficient = 0.83) can be considered as acceptable for field testing in Spanish adults (23). Lower extremity function was assessed by using the chair-stand test (8). The subject was asked to stand upright from a standardized chair (0.43 m in height) with her arms folded across the chest and to sit back down 10 times as quickly and safely as possible. The best result of two trials (expressed in s) separated by 3 min was considered as the outcome.Sample SizeThe primary outcomes were the fitness scores. The required sample size was calculated with the Spanish data set of healthy population (23), and the data reported in lumbar trunk muscle endurance testing set (17) were calculated for a hypothetical nonparametric analysis by Mann-Whitney U-test comparing two groups with an α significance level (0.05) and 90% of the power needed for a minimal clinically relevant difference of 0.5 SD (z-score). The required total sample was 87 participants. However, we selected at least 105 participants to exceed the higher number by 20%, thus allowing for potential dropouts.Data AnalysisThe descriptive statistics are presented as means and SD for continuous variables and as frequency and percent for categorical variables. The normality of the data was initially tested by using the Kolgomorov-Smirnov test using the correction of Lillifors. As expected, because of the non-normal distribution of data in previous studies, the results of this test suggested the use of nonparametric analyses. Differences between groups were tested by using Mann-Whitney U-test for continuous variables and the χ2 test for categorical variables. To standardize the scores, the difference between the carer's raw score and the mean score of the reference group was calculated. This difference was then divided by the SD of the control group. These standard scores (z-scores) express the individual's distance from the reference group in terms of the distribution (effect size). Thus, any score equal to the mean of the reference group will be equivalent to an effect size of zero. Negative or positive values indicate an individual who falls below or above the mean, respectively. For all tests, the significance level was set at P < 0.05. The analyses were performed by using SPSS 14.0 (SPSS, Inc., Chicago, IL).RESULTSSociodemographic characteristics.A total of 110 women between the ages of 50 and 75 yr were included in the study. Of these, 54 were caregivers and 56 were noncaregivers. Table 1 reveals that the caregivers smoked significantly more and did less physical activity than the noncaregivers. However, the two groups did not differ significantly in other sociodemographic characteristics, namely, place of residence, number of coresident persons, educational level, marital status, and alcohol consumption. The usual profile of the caregivers participating in the study were a daughter of a patient with Alzheimer who has been caring for him or her for more than 5 yr.TABLE 1. Sociodemographic, health, and caregiving characteristics of females at baseline.Health-related quality of life.Table 2 shows the parameters and component scales of the HRQOL as reported by the participants. The mental component scores of the caregivers were 22% lower (P < 0.001) than those of the noncaregivers, but significant differences were not detected in the physical component scores. On the whole, caregivers had lower scores in the general health and psychosocial parameters.TABLE 2. Differences on health-related quality of life stratified by group (carers = 54, noncarers = 56).Physical fitness.Table 3 indicates the fitness scores of the two groups. The caregivers had significantly better scores than noncarers about body composition (BMI and WHR) and the muscular strength of the hands (as determined by the bi-handgrip test) and the legs (as determined by the chair-stand test) but lower strength endurance for the extensors of the trunk. However, the two groups did not differ in flexor trunk endurance, flexibility, or balance (motor fitness outcome).TABLE 3. Differences on physical fitness stratified by group (carers = 54, noncarers = 56).DISCUSSIONThe main findings of the present study show that caregivers of patients with dementia have different health-related physical fitness profiles compared with the general population and that their reported psychosocial health-related quality of life is worse.In fitness outcomes, our first hypothesis stated that caregivers were expected to have worse HRF (body composition, musculoskeletal fitness, and motor fitness) than noncaregivers in balance, walking velocity, and leg strength (14,29). This hypothesis was partially verified because caregivers showed lower strength of the extensors of trunk than noncaregivers. This deficit is consistent with the higher rates of back pain reported by caregivers in previous studies (4). However, the carers showed higher muscular strength in their legs and hands than the noncarers. Moreover, their body composition data suggest that they are at lower risk of cardiovascular problems because it is well known that BMI and WHR (body composition) are indicators of the risk of mortality. Thus, in our study, noncaregivers were at higher risk of mortality than caregivers were. These findings have been observed in other studies with different research designs as well (19). The higher muscular strength of the caregivers is probably due, at least in part, to the daily physical activity that is involved in managing a patient with dementia, such as seating the patient, getting them up, or tying them up. Indeed, a study by Friedman et al. (12) has shown that although female caregivers reported less leisure time exercise than noncaregivers, they were not less physically active; this was explained by the physical activity entailed in caregiving tasks (12).Although the effect of caregiving on physical health outcomes measured by SF-36 questionnaire was limited, the second hypothesis was verified on the whole because we found that caregiving had a marked negative impact on mental health outcomes, especially in the emotional role, mental health, social function, and general health. These results were consistent with those reported by a previous Spanish study (3). It may be that caregivers do not tend to differ from the general population in reported physical health outcomes because physical health is influenced by many factors other than the caregiver role, such other social roles, socioeconomic status, the quality of social relations, health-promoting habits, personality, and even genetic factors (15,16).Limitations.The study has some limitations. First, we did not use population-based sample strategies, which limits its generalization as normative values. However, the sociodemographic characteristics and HRQOL profiles of caregivers and noncaregivers were consistent with those reported by large studies that were previously performed in Spain (3,4). The health-related quality of life instrument we used is feasible and useful as a general instrument because it includes five clear and simple items, but it also limits to differentiate between two different concepts: anxiety and depression. Both concepts are included in a single item. Therefore, the analysis in depth of this dimension requires further study with other more specific instruments.Future directions.Care services to the elderly are provided primarily by informal caregivers such as spouses and adult children. Consequently, these caregivers occupy an important position within the community in its health and social care policies. Future research should focus on identifying interventions that could prevent, or minimize, the worsening of the HRQOL and fitness of caregivers. One such intervention could be the institution of a supervised program of moderate physical exercise. However, the daily life activities of caregivers of patients with dementia remain to be detailed, and the effects of exercise programs on these caregivers need to be assessed (11).Practical implications and conclusions.The current study provides novel knowledge that will help the design of an adequate exercise program for carers of patients with dementia. For instance, caregivers incur physical demands peculiar to the task reflected in some fitness differences.Compared with conventional programs that are suitable for the general population, this exercise program should focus more on back pain prevention by improving the endurance strength of the trunk extensors. As far as the carers reported low social and emotional levels, and they usually has little free time, the interaction and support of supervised programs between the health or sport professional and the caregivers could also help to minimize the psychosocial components that affect the HRQOL of caregivers (29).This study was cofinanced by Sanitary Research Funds (Inst. Carlos III, Food and Drug Administration, Spain; grant no. PI051601) and the Junta (Regional Government) of Extremadura as part of its Regional Research Plan (grant no. 2PR02B017). Thanks to J. C. 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