Needs assessment of informal caregivers supporting a person with dementia: a descriptive study of current practices

Abstract

Abstract Background Informal caregivers who support a person with dementia (ICDs) play an essential role in the healthcare system. Their intensive contribution puts them at high risk of negative consequences on their physical and psychological health. Despite significant unmet needs, ICDs rarely or only belatedly ask for support. Identifying these unmet needs is essential for a timely use of the relevant support services and for the prevention of exhaustion. Research about how diverse support providers assess the needs of ICDs is scarce. Our study aimed to describe current evaluation practices of support providers regarding needs assessment in one Swiss canton (province), in order to identify strengths and weaknesses. Methods A survey was completed by 55 professionals and volunteers involved in ICDs support with six open-ended and four closed questions investigating current practices for assessing the needs of ICDs. Results A diversity of providers assessing the needs of ICDs reported spending on average 45 minutes per assessment (range: 5-120 minutes). Most providers declared that they were reassessing the needs of ICDs (80%) and in most cases ICDs received some feedback after the assessment (86.5%). Few providers used a systematic procedure focused on ICDs (27.1%), and no validated tool with a focus on the needs of ICDs was used. Only 52.7% of providers reported having been trained in needs assessment. 41.8% described heterogeneous assessment procedures in their service, and the collected information was mostly stored in files related to the person with dementia (PwD) and not in a file directly attributed to the ICD. Conclusion Current practices in assessment of the needs of ICDs maintain the lack of coordination within the fragmented network of support providers, highlighting the need for policy thinking along the ICDs trajectory. As a first step towards improvement, providers need a cross-professional tool that allows for systematic and exhaustive assessment focused on the needs of ICDs.