“I worry all the time”: Carer strategies for managing the person with dementia who wanders at home

Wandering, a common dementia-related behavioural symptom associated with becoming lost, fatigue and injury, is identified by carers as troubling, often precipitating premature admission to long term care. This mixed methods scoping study examined the strategies Australian dementia carers typically use in managing wandering. Data from 29 carers (mean age 68.25) was collected using interviews or online surveys. The mean care recipient age was 79.15 years; most had Alzheimer’s disease, FTD or Vascular dementia and moderate scores on the Revised Algase Wandering Scale-Community version (overall mean 99.9/195; subscales:persistent walking 40/70, eloping 20/40, repetitive walking 19/35). Over three quarters of carers (76.5%) described the person with dementia as wandering, withover half expressing concern about the person’s potential for becoming lost, entering perceived hazardous areas and falling. Carer management strategies focused primarily on containment versus engagement in meaningful activities andincluded: locking the person with dementia in safe areas, physical and/or chemical restraint, restricting activities outside the home and constant surveillance. Thematic content analysis of carer data related to the strategies they reported using resulted in six themes: Commitment for the long haul; Part of the disease ; Guilt; Frustration; Fear of negative consequences; Running out of options. Results confirm the high negative impact of only a moderate level of wandering oncarers and identify negative strategies in use which arguably jeopardize the quality of life of both the person with dementia and carer and support the need for carer education and intervention development.