With great interest we read Dr. Oudman’s letter to the editor related to our finding that errorless learning of skills reduced neuropsychiatric symptoms in Korsakoff patients in long-term care (Rensen et al., Reference Rensen, Egger, Westhoff, Walvoort and Kessels2018). We appreciate him addressing the importance of autonomy, even in patients who have severe cognitive impairments, and underscore the need for research using patient-centered outcomes. Due to their severe cognitive impairments, patients with Korsakoff’s syndrome mostly reside in nursing homes and need 24-hour care. Most of the times the focus of the care lies on the impairments and limitations, yet there are still lots of activities these patients may perform, including learning new skills. This learning potential is often overlooked.
As summarized by Dr. Oudman, the errorless learning training gave full support to the goals and values of the patients. Indeed, we asked all patients what they wanted to learn and some patients had clear ideas. However, the majority of the patients did not have any specific requests for help. Deciding if and what you want to learn is a very complex tasks. Lacking ideas or motivation is, however, in many Korsakoff patients a consequence of the syndrome (due to lack of illness insight, apathy, executive dysfunctions, and/or memory impairments, see Arts et al., Reference Arts, Walvoort and Kessels2017), rather than, for instance, stubbornness or unwillingness. That is, sometimes we ask the patient a question that they simply cannot answer. By providing guidance in this process through for instance shared decision making, we may be able to help patients answer the question, finding a balance between autonomy and incompetence. For example: A patient with Korsakoff’s syndrome used to like walking and participating in walking events. Currently, he lives in a nursing home. He does not ask the caregivers and does not take any actions to go for a walk. When asked, he does not know what he wants to do or learn. Most of the day, he merely sits in a chair watching television. Learning a route using errorless learning principles may offer him an opportunity to gain some autonomy in a 24-hour care setting, although is unable to put this forward by himself. In addition to the neuropsychiatric symptoms referred to above, self-reported quality of life improved after our intervention (Rensen et al., Reference Rensen, Egger, Westhoff, Walvoort and Kessels2017a; Reference Rensen, Egger, Westhoff, Walvoort and Kessels2017b). We did not find any differences in results in patients that selected the tasks themselves or those for whom the tasks were selected by the caregivers.
To conclude: It is important to not just see the patient with Korsakoff’s syndrome, but the individual with their own preferences and values, who is diagnosed with Korsakoff’s syndrome.