[Features of frontotemporal dementia from the perspective of a special family support group]

Eight spouses of patients diagnosed with frontotemporal dementia (FTD) participated in a special support group. Seven weekly sessions of 90-min duration were held. This pilot project provided the opportunity to learn more about FTD and the specific problems and needs of caregivers. Their problems are predominantly due to changes in the patients' personalities and behaviour, not to the cognitive impairment. Furthermore, in contrast to Alzheimer's disease, patients are relatively young, the current state of scientific knowledge about FTD is unsatisfactory, and the disease is almost unknown among physicians. As part of the group activity, caregivers received information on the typical symptoms of FTD. This enhanced their understanding of the alterations in the patients' personalities and behaviour and facilitated acceptance of the disease. During group meetings, participants were encouraged to express their own needs and to deal with painful emotions including aggression, anger, mourning, and guilt. The caregivers felt relieved by sharing their problems with others. They were able to learn from each other and to exchange suggestions and solutions. The group also helped to establish new contacts and friendships. Participants' evaluations of the novel intervention were very positive. We conclude from these initial observations that support groups are needed for caregivers of patients with FTD which are tailored to their specific needs.