Informal Caregivers

After training, informal caregivers better understood SOCAV goals and more clearly described their own support needs. Informal caregivers shifted from safety-focused and controlling approaches toward more relaxed autonomy-supportive care. Informal caregivers initially endorsed self-direction but lacked concrete strategies for supporting it. Unpaid carers supported goal setting, activity promotion, and adherence throughout the MAINTAIN intervention. Informal caregivers experience practical burden, emotional strain, grief, and changing relationship dynamics as dementia progresses. The number and intensity of SOCAV activities burdened informal caregivers and contributed to dropout. About one in five carers reported missing one to thirty workdays due to caring responsibilities. Carer burden was measured using the Zarit Burden Interview-12 as a secondary outcome measure. Carer stress was assessed at the initial baseline assessment alongside the person with dementia's falls history and functional measures. Each person with dementia enrolled in the trial was required to have an unpaid carer willing to participate.