Mohammed T. Abou-Saleh

CAREGIVERS AND THEIR SUPPORT 765Table 1Timetable of Dementia Caregivers’ Training ProgramMorning Afternoon EveningDay 1Day 2Day 3Day 4Day 5Day 6Day 7Day 8Day 9Day 10Admission proceduresWelcome and orientationStress management and relaxation‘‘Telling your story’’Reducing carer distress 2RelaxationRe-rolingRelaxationAssertiveness training 1Relaxation practice with tapePicnic outingRelaxation practice with tapeChurchRelaxationCommunicationStress management and relaxationReality orientationRelaxationUse of community servicesRelaxation‘‘What if’’—planning for the future‘‘Getting to know you’’Reducing carer distress 1Healthy eating for older peopleReminiscenceKeeping fit and healthyTherapeutic use of activities andactivity analysisMedical aspects of dementia 1Sunday driveAssertiveness training 2Medical aspects of dementia 2Work simplification and organizationin the homeCombating burnoutCoping with physical frailtyFarewell afternoon tea andpresentation of diplomasSocializingFilm nightCarer outingSocializingSocializingSocializingExtended family sessionsExtended family sessionsSocializingskills of communication, activity analysis, reality orientation andreminiscence.Patients and caregivers were given name tags and briefed dailyafter breakfast to review the previous night and to confirm eachday’s arrangements. Less threatening sessions were scheduled forthe first week of the program; those that required more selfexaminationor were more confronting about the realities of thedementia were left until the second week. At the end of theprogram there was an afternoon tea graduation ceremony andpresentation of a diploma.Follow-throughFollow-through was an essential part of the program. While the10 day program was both intensive and comprehensive andsupplemented by take-home written materials and audiotapes, itwas felt that the lessons would be lost without reinforcement.Telephone conferences were arranged with the coordinator atincreasing time intervals over 12 months, starting at 2 weekly andfinishing at 6 weekly intervals. The coordinator’s input wasgradually diminished on these telelinks. Towards the end of theyear, the coordinator would absent herself from teleconferencecalls. Cohorts of caregivers attended the hospital for follow-upassessments at 3, 6 and 12 months after the completion of theprogram, thus providing opportunities for reunions. Relationshipsamong cohorts of caregivers varied, with some establishingquite close friendships and continuing to meet informally at eachother’s houses. After the first year, annual telephone follow-upswere conducted. Two long-term outcomes were monitored,nursing home admission and death. Data on these endpointswere obtained for all patients.THE TRIALWe recruited subjects by seeking referrals from doctors, agedcare and healthcare providers or by having articles in themedia. While the pilot programs had been heavily subscribed,once the research proper began, the well-known ‘‘disappearingsubjects’’ phenomenon was evident. Of the 96 caregivers whoentered the study, 40 did so of their own initiative, 16 werereferred by local doctors, 15 through the Alzheimer’s Diseaseand Related Disorders Society, eight after media publicity, and17 through other sources.To be eligible, we required that patients be less than 80 yearsold (for follow-up purposes) and have mild to moderatedementia, defined by the Diagnostic and Statistical Manual ofMental Disorders, 3rd edn 11 . The patients had to live in aprivate home with a supporter, be able to understand English,not be a wanderer and not be aggressive. We stipulated thatpatients had to have dementia of mild to moderate severitydefined as a score on the basic Activities of Daily Living of 0or 1. All subjects agreed to random allocation to either amemory-retraining program (for patients only) or a dementiacaregivers’ program (as described above). Subjects were toldthat neither program offered a cure, but both offered thepossibility of improvement in function. Institutional ethicscommittee approval was received prior to the trial and allsubjects gave written informed consent.ProceduresProspective applicants for the program were sent questionnairesand the postal date on the envelope of the questionnairedetermined which group eligible subjects were assigned to.Importantly, no systematic bias could have occurred becausethe time when caregivers sent their application was purelyrandom and therefore meant that their allocation was notbiased by any selection procedure. Subjects were assigned inturn to one of three treatment groups: memory retrainingprogram, immediate dementia caregivers’ program, orwait-list ordelayed dementia caregivers’ program. In the memory retrainingprogram, patients were admitted for 10 days and received thepatient component of the dementia caregivers’ program, while