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A Support Group for Caregivers of Patients with Frontotemporal Dementia

Department of Psychiatry and Psychotherapy, Technische Universität München, Munich, Germany

T. Mayer

Department of Neurology, Technische Universität München, Munich, Germany

H. Förstl

Department of Psychiatry and Psychotherapy, Technische Universität München, Munich, Germany

A. Kurz

Department of Psychiatry and Psychotherapy, Technische Universität München, Munich, Germany

Several recent articles have pointed out that caregivers of patients with frontotemporal dementia (FTD) need counselling and support. To date, however, no support groups have been provided other than those available to caregivers of patients with Alzheimer's disease (AD). At our outpatient unit for cognitive disorders we initiated a specific support group for caregivers of patients with FTD. This pilot project had four objectives: 1) to provide information, advice and support to caregivers, 2) to learn more about the specific problems and needs of family carers of patients with FTD and to explore the differences to caregiver burden in AD, 3) to encourage mutual support and development of coping strategies, 4) to evaluate the intervention using a questionnaire completed by the caregiver. Eight spouse caregivers of patients diagnosed with frontotemporal dementia (FTD) participated in special support groups. Seven weekly sessions of 90 minutes' duration were held. To evaluate the program participants were asked to complete a questionnaire about their satisfaction with the support group immediately after the final session. Six months after the intervention they received a questionnaire by mail gathering information on coping efficacy. It became obvious that many problems faced by caregivers of patients with FTD are different from those encountered in AD. During group meetings participants were encouraged to express their own needs and to deal with painful emotions, including aggression, anger, mourning and guilt. Caregivers felt relieved by sharing their problems with others. They were able to learn from each other and to share coping strategies. The group also helped to establish new social relations contacts and even friendships. The participants rated the program as useful and said that benefits were sustained even six months after termination. We conclude from these initial observations that caregiver support groups are a useful component in the management of patients with FTD. Such groups should be tailored to the specific problems and needs of these caregivers. To maintain benefits, self-help groups are recommended even in the absence of professional input.

Key Words: caregiver • education • frontotemporal dementia • non-cognitive symptoms • support group

Dementia, Vol. 2, No. 2, 151-161 (2003)
DOI: 10.1177/1471301203002002002


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