Objective-To reduce the psychological stress and improve the skills in coping of people who care for relatives with dementia. Design-Assessment and suitability of carers by questionnaire; assessment of patients and carers in a hospital outpatient clinic; allocation. to groups according to date of application to study. Linkage of groups of four carers and programme coordinator by telephone conference calls over 12 months after programmes. Reassessment at three, six, 12, and, for those in the "wait list" group, 18 months. Setting-The programmes were conducted in the psychiatry unit of a Sydney teaching hospital. Subjects-Eligible patients were less than 80 years old, had mild to moderate dementia, and lived at home with their carer. Ofthe 96 patient-carer pairs in the study, 33 were in the dementia carers' programme group, 31 were in the memory retraining group, and 32 were in the wait list group. Interventions-Carers in the dementia carers' programme received training in coping with the difficulties of looking after patients with dementia while the patients had sessions in subjects such as memory retraining. In the memory retraining programme patients were admitted and received the patient component of the carers' programme while their carers had 10 days' respite. In the wait list group carers waited six months before undertaking the carers' programme. Main outcome measures-Effect of the programmes on carers' general health questionnaire scores and the rate of placement of patients in institutions. Results-At 12 months' follow up the carers' programme had resulted in significantly lower psychological stress among carers than the memory retraining programme (mean (SD) general health questionnaire scores at 0 months were 6-31 (6.23) and 3-60 (6.25) respectively, and at 12 months were 4-69 (5.58) and 7 40 (9-39) ; p<0 05.) In the wait list group distress scores remained stable, even after the carers and patients had undertaken the carers' programme. Patients deteriorated over 12 months regardless of group allocation, but at 30 months, allowing for patients who died and could not be included in the analysis, 65% of patients in the carers' programme group were still living at home compared with 26% in the memory retraining programme group. Conclusion-The intensive intervention programme described for carers of patients with dementia can reduce the psychological morbidity of the carer and delay the placement of the patient in an institution without increasing the use of health services by either patient or carer.
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. © 1997 John Wiley & Sons, Ltd.
Community care policies and service practices need to be re-examined to make sure that they are person-centred and reflect consumer needs, for instance by integrating client and carer services and providing appropriate activities for PWD.
The study aimed to identify the shared issues and challenges being experienced by staff, their clients and informal carers, with the introduction of Consumer Directed Care (CDC). Secondary analysis was undertaken of data that had been initially collected, via semi-structured in-depth interviews, to inform the development of a discrete choice experiment. The raw staff and client/carer data were re-examined using an iterative inductive process. The analysis focused on locating the shared themes and differences between the participant groups based on their CDC experience. The data were also assessed for difficulties or barriers that impacted on the service. Four broad shared themes were derived: culture, role change, operational systems and resourcing, but with a range of diverse and sometimes conflicting sub-themes between the different participant groups. Differences can be linked to participant role in the service chain, with discordance emerging between what has been traditionally offered and what might be possible. This investigation occurred during the period in which services were transitioning from a traditional aged care service model to a new model of service provision requiring considerable industry change. We conclude that existing industry regulation, culture and practice supports an established service model in Australia that arguably makes translation of the objectives of CDC difficult.
The Australian Government has commenced a two-year pilot of consumer-directed care (CDC) across 500 home and community aged care packages. This policy paper discusses the model being trialled in Australia in light of the UK's Individual Budgets' Pilot Programme and the USA's Cash and Counselling Demonstration. The results of these randomised controlled studies suggest that older people vary in their preferences for consumer direction and that many find the administrative tasks of implementing CDC programs difficult. The relatively restricted model of CDC that the Australian Government is trialling may minimise the problems encountered in the overseas programs, but does not allow consumers to hire family or friends which they preferred to do overseas.
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