A Support Group for Caregivers of Patients with Frontotemporal Dementia

Abstract

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.

Functional disability in primary progressive aphasia

“…In this section we will present a summary of current published findings and our own extensive experience in advising on dementia management as well as the feedback from the family carers themselves, compiled over the past 10 years. We will also combine elements of published studies (Diehl, Mayer, Förstl, & Kurz, 2003;Grinberg et al, 2008;Merrilees & Ketelle, 2010; into the examples. The primary stage of any management plan in PPA should involve education to both formal and family carers about the disease process and resulting clinical manifestations of symptoms and behaviours (LoGiudice & Hassett, 2005).…”

Identifying Cognitive and Demographic Variables That Contribute to Carer Burden in Dementia

“…The provision of structured group-based education programs to the carers of dementia patients is modestly successful in reducing stress and burden [33,34,35]. In contrast, behavioural management strategies for the patients themselves have thus far proven less effective (especially in FTLD) [36].…”

The emotional well-being of young people having a parent with younger onset dementia

“…A recent report looking at caring responsibilities of young carers ) across a broad range of situations, not specific to YOD, has emphasised the association with young carers' mental and physical health and its deterioration over time, particularly as young carers move into adulthood. Much of the existing research assumes that it is the spouse that will be the principal caregiver in YOD (Diehl, Mayer, Förstl, & Kurz, 2003;Nicolaou, Egan, Gasson, & Kane, 2010;Rosness, Mjørud, & Engedal, 2011), a model typically derived from older adults with dementia (Lin, Macmillan, & Brown, 2012). Whilst research has outlined the impact on young people living with a parent with YOD it has not been considered in depth, (Svanberg et al, 2011, p. 370) and from theoretically informed perspectives.…”