Objective: To describe the theory, elements and practice of a successful caregiver training programme; and report the 8-year outcome.
Design: Prospective, randomized control trial and longitudinal follow-up over approximately 8 years.
Setting: Psychiatry unit, general teaching hospital, Sydney, Australia.
Participants: 96 persons less than 80 years old with mild to moderate dementia and their cohabiting caregivers.
Interventions: All patients received a 10-day structured memory retraining and activity programme. Caregivers in the immediate and wait-list caregiver training groups received a structured, residential, intensive 10-day training programme, boosted by follow-ups and telephone conferences over 12 months. Those in the wait-list group entered the programme after waiting 6 months. The third group of caregivers received 10 days' respite (while patients underwent their memory retraining programme) and 12 months booster sessions as for the other groups.
Main outcome measures: Nursing home admission; time until patient death.
Main results: 64% of patients whose caregivers were in the immediate training group, 53% of wait-list group patients and 70% of memory retraining patients had died. Nursing home admission had occurred in 79% of the immediate training, 83% of the delayed and 90% of the memory retraining group. Eight-year survival analysis indicated that patients whose caregivers received training stayed at home significantly longer (p = 0.037) and tended to live longer (p = 0.08).
Conclusions: Caregiver training programmes demonstrably can delay institutionalization of people with dementia.