Gathering tips from carers to support people with dementia: an adaptation of the TOP 5 program for community use

Behavioral and psychological symptoms of dementia are often managed inappropriately with antipsychotic medicines. The TOP 5 program, which involves recording up to five relevant and meaningful tips that assist in personalizing care for the person with dementia, has been tested in the hospital setting and transitions of care in Australia, and has been found to be useful. Our study aimed to adapt the TOP 5 program as a strategy to support people with dementia in a primary care setting and to test the acceptability of our adapted TOP 5 program materials.

The adapted TOP 5 program materials were delivered as part of a larger intervention by the Australian Government Department of Veterans' Affair's Veterans' Medicines Advice & Therapeutic Education Services program to reduce inappropriate antipsychotic use in veterans with dementia. This study focuses on the acceptability of our adapted TOP 5 program materials for ascertaining carer or family members' advice about what actions might help to calm their relative when she or he is agitated. Educational materials relating to the resources for implementing the adapted TOP 5 program together with the one-page survey response to evaluate acceptability of our adapted TOP 5 program materials were mailed to 4827 general practitioners (GPs), 8381 accredited pharmacists, and 2510 Residential Aged Care Facilities.

We received survey response forms from 350 (7%) GPs, 366 (4%) pharmacists, and 196 (8%) residential aged care facilities. Although the response rate was low, 90% of respondents in all groups indicated they were very likely or moderately likely to assist family members and carers of patients with dementia to identify their top tips to personalize care. GPs who found the information useful more frequently indicated that they were likely to assist family members and carers in identifying their top tips. Approximately one-third of respondents reported they had received positive feedback from families regarding the helpfulness of sharing their practical tips for care of their loved one. Pharmacists indicated having the tips would assist them when undertaking medicines reviews.

Our findings suggest that the TOP 5 program, or an adaptation of the TOP 5 program, such as ours, has potential to improve the health and care of people with dementia and their carers by using patient centerd nonpharmacological approaches and avoiding the unnecessary use of antipsychotics for behavioral and psychological symptoms of dementia. Longer-term follow-up would help to establish whether the apparent benefits persist.