Abstract
BackgroundAlthough educational interventions are recommended in Alzheimer’s disease (AD), studies assessing the impact of interventions such as “therapeutic patient education” are scarce. Indeed, the intrinsic nature of the disease is considered a barrier to patients’ involvement in such approaches. We aimed to evaluate an intervention by using a “dyadic” approach (patient and caregiver) in both intervention and assessment.MethodsTHERAD is a monocentric, randomized, controlled trial assessing the effects of a 2-month educational programme in mild to moderately severe AD patients among 98 dyads (caregiver/patient) on caregiver-reported patient quality of life (QOL) at 2 months. Community-dwelling patients and their caregivers were recruited in ambulatory units of the French Toulouse University Hospital. Self-reported patient QOL, autonomy, behavioural and psychological symptoms and caregiver QOL and burden were collected at 2, 6 and 12 months. Linear mixed models were used in modified intention-to-treat populations. We also performed sensitivity analysis.ResultsA total of 196 dyads were included, 98 in each group. The mean age of the patients was 82 years, 67.7% were women, diagnosed with AD (+/- cerebrovascular component) (mean MMSE =17.6), and 56.9% lived with a partner. The mean age of the caregivers was 65.7 years, and 64.6% were women (52.3% offspring/42.6% spouses), with a moderate burden (mean Zarit score = 30.9). The mean caregiver-reported patient QOL was lower than the self-reported QOL (28.61 vs. 33.96). We did not identify any significant difference in caregiver-reported patients’ QOL (p = 0.297) at 2 months, but there was a significant difference in self-reported patients’ QOL at 2 months (p = 0.0483) or 6 months (p = 0.0154). No significant difference was found for the secondary outcomes. The results were stable in the sensitivity analyses.ConclusionsThis randomized controlled trial assessing an educational intervention in 196 dyads (Alzheimer’s disease affected patient/caregiver) highlights the need to better consider the patient’s point of view, since only the self-reported QOL was improved. Additional studies using this dyadic approach are necessary in targeted subpopulations of caregivers (spouse vs. child, gender) and of patients (severity of cognitive impairment or behavioural disturbances)Trial registrationTHERAD study NCT01796314. Registered on February 19, 2013.
Highlights
Alzheimer’s disease (AD) patients’ care and support of their family is a major issue in the health care systems of Western countries [1]
With regard to the patients, their mean age was 82 years, 67.7% were women, 16.9% had a bachelor degree or higher, 56.9% lived with a partner, they were diagnosed with AD for a mean time of 15 months, their mean MMSE was 17.65, 48.2% had at least one incapacity of Activities of Daily Living scale (ADL), and their Neuro Psychiatric Inventory (NPI) mean score was 21.7 and 49.2% were being treated with antidementia drugs
The mean age of caregivers was 65.7 years, 64.6% were women, they were mainly a close relative (52.3% were offspring, 42.6% were spouses), living at home with the patient (53.3% spending a mean time of 21.67 h per week in caregiving) with a moderate burden and a low quality of life (QOL)
Summary
Alzheimer’s disease (AD) patients’ care and support of their family is a major issue in the health care systems of Western countries [1]. By affecting one’s cognition, emotional processes and behaviour, AD modifies the nature of the relationship between the person and his or her caregiver, usually a relative, and the role of each individual in the family and social sphere [2] Even if this change is sometimes positive for the relationship, it can lead to what has been called a “burden”, which, shouldered by informal caregivers, has been reported in the literature as causing poor physical and mental health (depression, cardiovascular disease, anxiety) [3]. Several types of psychoeducational strategies have been developed in AD, mostly offered either to caregivers or patients but, only recently, to the dyad (patient/caregiver) They mainly belong to multicomponent interventions, including a formalized educational programme and/or psychological support and/or respite and/or pharmacological treatment [6, 7]. We aimed to evaluate an intervention by using a “dyadic” approach (patient and caregiver) in both intervention and assessment
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