“We are just sitting here”: patient participation for elderly with dementia.

Abstract

Institutionalized elderly with dementia should, regardless of their reduced mental capacity, be involved in their own care. Elderly, chronically ill patients are often found vulnerable and limited in their ability to participate. Ample research is available on patient participation; however, the enhancement of it has mostly been studied in hospital settings, not in nursing homes. This research focuses on the implementation of patient participation in the context of dementia care. In order to provide an answer on the following research question: “How do healthcare professionals influence patient participation in a specialized dementia care unit in a Dutch nursing home?”, a case study is performed. This is facilitated by semi-structured interviews among eleven health care professionals working in a specialized dementia care unit. Based on the literature, four attributes of patient participation were addressed, and the influence of health care professionals’ attitude and behaviour was analysed. The findings showed that health care professionals have a great influence on opportunities for residents’ participation. Especially in dementia care, residents are dependent on health care professionals’ guidance, willingness and ability. Therefore, health care professionals need to observe, sense and know residents to accommodate their wishes and needs. Picking up signals as well as valuing residents as equal partners were strong facilitators to involve dementia residents in their care. The most critical hindrances were residents’ negative attitude, absence of knowledge on dementia care, task-oriented nursing labour and lack of self-reflection. Establishing relationships was a natural consequence of caring for dementia residents, which is strengthened by both verbal and non-verbal communication and underlying values, such as empathy and trust. This research shows the ability of healthcare professionals to facilitate patient participation regardless of residents’ cognitive impairment. Through an awareness of the hindering and facilitator factors together with critically, reflective thinking of healthcare professionals, patient participation can be enhanced within dementia care.