Evaluation of the SPAN intervention for people living with young-onset dementia in the community and their family caregivers: a randomized controlled trial

Abstract

Objectives

To evaluate the effectiveness of the SPAN-intervention, a psychosocial intervention aiming at improving a sense of usefulness and engaging in meaningful activities, for community-dwelling people living with young-onset dementia (YOD) and their family caregivers.

Methods

A cluster-randomized controlled trial with two parallel groups (SPAN-intervention vs. care as usual) with assessments at baseline and five-month follow-up was performed. Sixty-one persons living with YOD and their family caregivers were included (SPAN-intervention group: n = 35; care as usual group: n = 26). Outcomes included, for the person living with YOD, empowerment (operationalized by self-management abilities using the SMAS-30; primary outcome), quality of life, neuropsychiatric symptoms, disability, apathy; and, for the family caregiver, quality of life, emotional distress, sense of competence. Data were analyzed using linear mixed models.

Results

We found no statistically significant effects of the SPAN-intervention on empowerment, nor on the secondary outcome measures for persons living with YOD or their family caregivers.

Conclusion

Although the SPAN-intervention may provide concrete opportunities to engage in activities and stimulate reciprocity, such as meaningful social activities, this study did not demonstrate intervention effects. Additional qualitative evaluations may provide more insight into the implementation process and experiences of people living with YOD and their family caregivers.

This trial was registered at ClinicalTrials.gov (NCT02937883).

Keywords:

• Empowerment
• young-onset dementia
• family caregivers
• psychosocial support

Acknowledgements

We would like to thank all of the participants and the healthcare professionals involved for their participation in this study.

Disclosure statement

The authors report there are no competing interests to declare.

Data availability statement

The datasets generated and analysed during the current study are not publicly available, but are available from the corresponding author upon reasonable request.

Additional information

Funding

This work was supported by the Netherlands Organization for Health Research and Development (ZonMw) under grant number 73305607, and the Dutch Alzheimer Society.