Investigation of the Factors Affecting Quality of Life in Patients with Mild to Moderate Alzheimer’s Disease in Terms of Patients and Caregivers

Background and Objectives: As with other chronic diseases with limited medical treatment, the most important goal of Alzheimer’s disease (AD) treatment is to provide a better quality of life (QoL). The purpose of this study was to investigate the factors affecting the QoL of patients with mild to moderate AD in terms of patients and caregivers. Materials and Methods: Seventy-three home-dwelling patients with AD and their caregivers participated in this prospective, cross-sectional study. The patients were asked about their cognition, depression and a self-rating part of a QoL questionnaire. The caregivers were asked about their patients’ sociodemographic information, sleepiness, activities of daily living and a proxy rating part of a QoL questionnaire. Results: The self-rated QoL was higher than that provided by the proxy rating. Cognition (p = 0.02), sleepiness (p < 0.01) and depression (p = 0.03) were correlated with the self-rated QoL, while the patient’s independence level in activities of daily living was correlated with the proxy-rated QoL (p < 0.05). In regard to predicting QoL according to linear regression analysis, the following were statistically significant: depression was for total score, depression and cognition were for the self-rating and instrumental activities of daily living was for the proxy rating (p < 0.01). Conclusions: While individual factors such as psychology are an important determinant of QoL for patients with AD, objective conditions such as the independence of the patient in daily life are important for the caregiver. While evaluating the quality of life of AD patients, it is important to remember that patients and caregivers have different priorities, and the priorities of both should be taken into account when planning a treatment program.

Investigation of the Factors Affecting Quality of Life in Patients with Mild to Moderate Alzheimer's Disease: A Cross-Sectional Study from Turkey

Background Like other chronic diseases with limited medical treatment, the most important goal of Alzheimer’s disease rehabilitation is to provide a better quality of life. The purpose of this study was to investigate the factors affecting the quality of life of the patients with Alzheimer's Disease (according to parts of the Quality of Life in Alzheimer’ Disease Questionnaire: patient, proxy and total score). Methods In this cross-sectional study, 73 home-dwelling patients with Alzheimer's Disease and their caregivers were recruited. Cognition, depression and Quality of Life in Alzheimer’ Disease -self rating were asked to the patient. The caregiver was asked about patient’s sociodemographic information, sleepiness, activities of daily living and Quality of Life in Alzheimer’ Disease -proxy rating. Results The Quality of Life in Alzheimer’ Disease -self rating were higher than the Quality of Life in Alzheimer’ Disease -proxy rating. Cognition (p = 0.02), sleepiness (p < 0.01) and depression (p = 0.03) were correlated with the Quality of Life in Alzheimer’ Disease -self rating, while the independence level of the patient in activities of daily living was correlated to the Quality of Life in Alzheimer’ Disease -proxy rating (p < 0.05). Predicting quality of life according to linear regression analysis those were statistically significant in respectively; depression is for Quality of Life in Alzheimer’ Disease, depression and cognition were for Quality of Life in Alzheimer’ Disease -self rating and instrumental activities of daily living was for QoL-AD-PR (p < 0.01). Conclusion While subjective situations such as psychology is important for the patients with Alzheimer's Disease, objective conditions such as the independence of the patient’s in daily life activities are important for the caregiver. While evaluating the quality of life, both the evaluations of the patients with Alzheimer's Disease and the caregiver should be applied, because different things are prioritized by them and priorities of both should be taken into account when planning the treatment program.

Agreement Between Proxy-Rated and Self-Reported Quality of Life for Persons With Dementia

While quality of life (QOL) is an important endpoint of homecare for persons with dementia (PWD), PWDs often have difficulty in articulating their QOL by themselves. Instead proxy-rating is often used. However, evidence is still scarce regarding to what extent proxy-ratings reflect actual QOL of PWDs. We examined the association between self-report QOL by PWDs and proxy-rated QOL. We conducted a questionnaire survey to PWDs who were 75 years and older, their family, and homecare nurse in charge of the PWD. Two measures were used: 1) a newly developed, 4-item self-report for QOL of PWDs, and 2) a standardized, 6-item proxy-rating dementia QOL scale. In the self-report, the PWD were asked about their daily mood or satisfaction in life in brief, easy-to-understand sentences. The self-reports and proxy-ratings were compared using intraclass correlation coefficients (ICC). Data from 382 PWDs, 248 family caregivers and 124 nurses were used. The mean age of PWD was 85.9 years and 60.5% were female. The proxy-rating by nurses were more strongly associated with self-reports, compared to the association between family proxy rating and self-reports (r = 0.351, p &lt; .001; r = 0.236, p &lt; .001, respectively). Proxy ratings by spouses and biological children were significantly associated with self-report (r = 0.257, p =.004; r =. 204, p = .006, respectively), while rating by children-in-law were not (r = 0.217, p = .160). Proxy-ratings may not be an appropriate substitute for self-report. Homecare nurses may evaluate the QOL of PWD better than their family caregiver.

Psychological Outcome in Young Survivors of Severe TBI: A Cross-Informant Comparison

Objective. To investigate the psychological outcome and the agreement between self-ratings and proxy-ratings in young individuals after severe traumatic brain injury (TBI).Methods. Twenty pairs of former patients who sustained a severe TBI in their adolescence or early adulthood and their significant others (SOs) were contacted around 66 months after injury to complete a measure of psychological and behavioral problems. The Adult Self-Report 18–59 and the Adult Behavior Checklist 18–59 were used.Results. Results showed significant differences compared to the normative sample in the domains withdrawal, attention, and intrusive and internalizing problems. Good or excellent levels of agreement were found between the self-rating and the proxy-rating in overt areas such as somatic complaints and aggressive and intrusive behavior. Fair or poor levels of agreement were found in nonovert areas such as anxiety and depression, withdrawal, thought and attention problems, and personal strength.Conclusion. The findings show that young patients experience psychological dysfunction. Our study suggests that the use of either a self-rating or a proxy-rating would be appropriate for evaluating overt domains, regarding the good to excellent levels of agreement. However, in nonovert domains, such as withdrawal and attention, an additional proxy-rating from a SO could provide supplementary information and build a more complete objective assessment.

Expert Versus Proxy Rating of Verbal Communicative Ability of People with Aphasia after Stroke

In randomized clinical trials of aphasia treatment, a functional outcome measure like the Amsterdam-Nijmegen Everyday Language Test (ANELT), administered by speech-language therapists, is often used. However, the agreement between this expert rating and the judgment of the proxy about the quality of the daily life communication of the person with aphasia is largely unknown. We examined the association between ANELT scores by speech-language therapists and proxy judgments on the Partner Communication Questionnaire both at 3 and 6 months in 39 people with aphasia after stroke. We also determined which factors affected the level of agreement between expert and proxy judgment of the communicative ability at 6 months in 53 people with aphasia. We found moderate agreement (at 3 months r = .662; p = < .0001 and at 6 months r = .565; p = .0001), with proxies rating slightly higher than experts. Less severe aphasia, measured with the Aphasia Severity Rating Scale, was associated with better agreement. In conclusion, although proxies were slightly more positive than experts, we found moderate agreement between expert and proxy rating of verbal communicative ability of people with aphasia after stroke, especially in milder cases. (JINS, 2012, 18, 1064–1070)