Mohammed T. Abou-Saleh

CAREGIVERS AND THEIR SUPPORT 763Exacerbating factors drive the reaction towards more psychologicalstrain; protective factors ameliorate this.CONTENT OF THE PROGRAM aFigure 1Model of the effects of dementia on caregiversclose to the caregiver and past history of psychological ill-healthwere other risk factors 3–6 .By the early 1980s, several intervention techniques had beendescribed. These were designed to enhance the skills ofcaregivers in coping by cognitive-behavioural approaches,training in problem solving, educational therapy, meditativerelaxation, training in social skills, supportive counselling ofindividuals or families, and the management of stress (seereviews 7,8 ).The outcomes of studies were limited by a number ofmethodological difficulties. The numbers of subjects were small,the period of follow-up was insufficient, the interventions werelimited in scope, the baseline level of morbidity in subjects wasoften low, making it impossible to demonstrate improvement,and patient outcome was inadequately evaluated. Even so, therewere some positive outcomes demonstrated: reduced familyburden, decreased psychological morbidity, greater knowledgeabout dementia and more assertiveness and tolerance bycaregivers 7 .A number of events, some unique, led to the development of theSydney Dementia Carers’ Training Program. First was thecontent, which was based on addressing factors known toexacerbate caregiver distress and indirectly potentiate nursinghome admission. Second, there was a period of low occupancy onthe psychiatric ward of a general hospital which, if not remedied,meant that some of the beds were under threat of closure. Third,the author, as the director and superintendent of that ward, wasable to utilize a variety of staff to assist in the program. Fourth, apilot program had proved feasible and anecdotally effective andfacilitated a grant from the Australian Commonwealth Departmentof Health.In the model underpinning the program (Figure 1), dementialeads to increasing dependency and a number of problembehaviours. These impose a burden on the caregiver, which canmanifest as psychological, physical, financial and social strain.The content of the 10 day intensive residential program can beconceptualized under 10 rubrics [discipline of professional(s)conducting the session; number of sessions and duration ofsessions are indicated in parentheses]:1. Reducing caregiver distress (social worker/occupational therapist;262 h+161.5 h). These sessions were scheduled first, aswe found that caregivers were unable to acquire newknowledge until their psychological distress had been dealtwith. Sessions were informal, supportive and expressive innature, with caregivers encouraged to unburden themselves.Discussion in the first session included topics such ascaregivers’ stories, the stresses of caring, associated feelings,setting limits for the person with dementia and caregiver,coping with caring, and role changes. The second sessionexplored the additional themes of acceptance of the diseaseand how dementia affects relationships with family, friendsand community. The third session focused on caregiver burnoutand how to look after one’s individual needs.2. Combating isolation (psychiatrist; 161 h). We aimed to reducecaregivers’ social isolation by the group interaction, residentialsetting and bringing together four caregivers for 10 days. Thisoften led to mini-support groups forming and was a rehearsalfor participation in other support groups. After the intensiveresidential program, telephone conference calls and hospitalfollow-up visits strengthened the bonds between groups offour caregivers. Extended formal family sessions broughttogether an expanded network of potential caregivers. Formany families it was the first time they had all gathered todiscuss ways of assisting with care. Sometimes geographicallydistant families participated on speaker telephones.3. Guilt and separation. Caregivers previously trapped by theirrole, guilt or their partner’s insecurity or suspiciousness wereseparated from their charges for most sessions, and encouragedto enjoy a number of activities, such as excursions to thelocal shopping centre or coffee shop. This provided a rehearsalfor more separateness when at home.4. New ways of thinking(a) Assertiveness training (psychologist or occupationaltherapist; 261.5 h). Participants were provided with a workingknowledge of assertive, non-assertive and aggressive behaviours,with their own ‘‘Bill of Rights’’, and with strategies forcoping with criticism. Sessions were concrete and used roleplayextensively.(b) Re-roling (psychologist; 162 h). This focused on roles—concept, definition (mainly by gender), expectations andresponsibilities—and how these were affected by dementia.Many caregivers had considerable difficulty taking over rolesrelinquished by the dementing person, such as driving,organizing the family and dealing with bureaucracy. Requiredskills were identified and their development promoted.(c) Relaxation and stress management (occupational therapist;8630 min, daily). Techniques for relaxation, meditation, useof physical imagery and progressive muscular relaxation,complemented by two half-hour discussions on the theory ofrelaxation and stress response, were very popular. Caregiversobtained audiotapes to practise techniques themselves andwith their partners.a Reproduced by permission from Brodaty et al. 1 Copyright John Wiley & Sons Ltd.