Determinants of self‐ and carer‐rated quality of life and caregiver burden in Alzheimer disease

Abstract

Objective We aimed to investigate factors associated with self‐ and carer‐rated quality of life (QoL) and caregiver burden related to very mild to severe clinical Alzheimer disease (AD). Methods One hundred patient‐carer dyads were recruited, and assessments of relevant outcomes were performed, including sociodemographic characteristics, QoL, activities of daily living (ADL), cognitive performance, behavioural and psychological symptoms of dementia (BPSD), caregiver burden, and health resource utilisation. Results There was a strong correlation between carer‐ and self‐rated QoL, with patients consistently rating their QoL higher than caregivers. Duration of illness did not affect the QoL ratings. There was an inverse association between both self‐ and carer‐rated QoL with age, age at symptom onset, impairment of ADL, time spent on assisting the patient, and depression. Both self‐ and carer‐rated QoL ratings were higher if the caregiver was a spouse vs a child. Carer‐rated QoL was inversely associated with severity of dementia, BPSD, caregiver burden, and requirement to supervise the patient. The variables age at symptom onset, ADL, and living together with the primary caregiver explained 34.50% of the variance in self‐rated QoL, whereas age at symptom onset, ADL, and BPSD explained 48.20% of the variance in carer‐rated QoL. For caregiver burden, 26% of the variance was explained by the variables ADL, living together with the primary caregiver, and agitation. Conclusion Our study highlights the need for a stronger focus on QoL in clinical AD research by providing further pieces of evidence on the key determinants, including the important aspect of caregiver burden.

Quality of life and factors affecting it in patients with Alzheimer’s disease: a cross-sectional study

“…Our analysis showed no differences in terms of gender of the informal caregiver, as stated by Römhild et al [17], Schumann et al [15] and Martyr [18]. However, this result was different from the findings of Conde-Sala et al [13].…”

“…Not only the patients' but also the relatives' and professionals' perceptions of the patients' QoL should be considered [14]. The factors associated with the QoL-AD by selfand proxy ratings have been reported in many recent studies [15][16][17][18][19][20]; however, none of them have used a Turkish sample. One meta-analysis pointed out that future work should explore whether PwAD in lowerincome countries or other cultures can identify different factors [21].…”

Effects of Music Therapy on Patients with Dementia—A Systematic Review

“…The results of our review have two important implications in informing best practices. First, the alleviation of BPSD in patients living with dementia who received music therapy might suggest the reduction of caregiver stress or burden, as suggested by the included studies, as well as other evidence in the literature [13,15,20,31,65]. However, this observation was not an outcome set in our review, hence, it warranted confirmation from further independent studies.…”

Factors associated with health‐related quality of life among family caregivers of people with Alzheimer's disease

“…It is generally believed that they are experiencing stress from multiple dimensions. 27 Therefore, providing training in stress management for caregivers may improve their coping skills and regulate their emotions, ultimately affecting their QOL.…”