Positive behaviour support in frontotemporal dementia: A pilot study

ABSTRACT

Frontotemporal dementia (FTD) is a progressive neurodegenerative brain condition clinically characterized by marked changes in behaviour that impact the individuals’ relationships and community participation, and present challenges for families. Family carers of individuals with FTD find apathy and disinhibition particularly challenging leading to high levels of stress and burden. Positive behaviour support (PBS) as a behaviour intervention framework has never been trialled in FTD. This pilot study examined the functional basis of apathetic and disinhibited behaviours in four FTD dyads and explored the acceptability of a PBS intervention. The PBS programme was provided by an occupational therapist in the participants’ homes. Measures collected at baseline and post-intervention (M = 3.9 months) assessed: function of behaviours, challenging behaviours, and qualitative outcomes pertaining to the acceptability of the PBS approach. PBS was an acceptable intervention for all four dyads. “Sensory” and “tangible” were the most common functions contributing to the maintenance of behaviour changes, and aspects of apathetic and disinhibited behaviours improved following intervention. This study demonstrates the acceptability and potential benefit of a PBS programme to provide support in FTD. A more rigorous trial will be an important next step in developing improved services tailored to the needs of this unique population.

KEYWORDS:

• Positive behaviour support
• Frontotemporal dementia
• Challenging behaviour
• Family support
• Family carer

Acknowledgement

The authors wish to thank the families who made this research possible.

Disclosure statement

No potential conflict of interest was reported by the authors.

Data availability statement

The data generated and analysed during the current study are available from the corresponding author on reasonable request.

Additional information

Funding

This work was supported in part by funding to ForeFront, a collaborative research group dedicated to the study of frontotemporal dementia and motor neuron disease, from the National Health and Medical Research Council (NHMRC) [grant number GNT1037746] and the Australian Research Council (ARC) Centre of Excellence in Cognition and its Disorders [grant number CE110001021]. AF is supported by Flinders University, and Lifetime Support Authority Research Grant. OP is supported by an NHMRC Senior Research Fellowship [grant number GNT1103258].