The development and evaluation of an informal caregivers’ communication training in community dementia care : a pilot study

Abstract

Background: Communication, as a major component of brain function impacted by dementia, progressively deteriorates self-expression abilities. This not only strains the relationship between the person living with dementia (pLwD) and the informal caregivers, but also their wellbeing and quality of life, while increasing caregiver burden. With impaired self-expression, the pLwD may use other means of communication which may be interpreted as ‘challenging behaviour’. Informal caregivers feel they lack competence in handling such behaviours, further contributing to caregiver burden and unmet needs of the pLwD. To date, training on effective communication in dementia care was mostly offered to formal caregivers i.e., healthcare professionals, working within healthcare or residential care settings. Aim: To develop and evaluate a pilot communication training programme, based on the PACTM dementia care approach by Ms. Teepa Snow, targeting informal caregivers of community-dwelling people living with dementia (PLwD). Methodology: A mixed-method approach was used to investigate the impact of pilot communication training on informal caregivers, mainly caregiver burden and self-efficacy. Quantitative outcomes were gathered via online questionnaires at pre-, post-intervention and at follow-up after two months from completion of the training programme. Four sessions of two-hours each were delivered to informal caregivers online. Questionnaires included the following standardised assessments: The Communication Problems Scale, The Caregiver Burden Assessment, The Revised Memory and Behaviour Assessment, and The Communication Self-Efficacy Scale – all measuring outcomes using a 5-point Likert Scale. Informal caregivers were recruited from the Dementia Intervention Team, which provides community dementia services. A total of ten initial participants who later dropped to eight (3 males ; 5 females) completed the whole data collection process. Qualitative outcomes were gathered via online recorded focus groups, and were analysed using thematic analysis by Clarke & Braun (2013). One participant completed the training and questionnaires remotely. Caregivers had access to recorded sessions and were given recapitulating material at the end of each session. Results: Most of the caregivers were femals – daughters of the pLwD, not living with the pLwD, and employed. Data gathered on caregiver burden showed that caregivers mostly experience tension (subjective stress burden), with these being higher among employed caregivers. Caregivers also reported having less time for themselves, friends or other family members, less time to spend in recreational activities, and less time for doing their own daily chores or work (objective burden). However, after the training these components of caregiver burden recorded improvement with statistical significance. Caregiver communication self-efficacy also recorded improvement, but not statistically significant. Conclusion: This pilot study provided evidence that communication training for informal dementia caregivers can support them by enhancing dementia knowledge and provide strategies for effective interaction with the pLwD, despite the impaired communication skills. This enhances the wellbeing of both and enables caregivers to handle challenging situations better.