Digital support for people with cognitive impairment : An intervention to increase the occupational performance in everyday life

Sammanfattning: Introduction: Senior people with cognitive impairment may experience an inability to manage everyday life due to difficulties related to time management, and planning and structuring everyday life. These difficulties can affect people negatively, for example not remembering to carry out future planned activities. Interventions that compensate for lost cognitive ability often include using assistive technology for cognition (ATC). By investigating the feasibility and potential effects of an intervention with the interactive digital calendar with active reminders, RemindMe, knowledge can be generated about aspects of learning to use and using digital support. Further, knowledge can also be generated about occupations in everyday life that people need to receive reminders for, both during the rehabilitation period and two years after the rehabilitation period. This knowledge can support building evidence-based interventions in rehabilitation for people with cognitive impairment using digital technology. Aim: The overall aim of this thesis was to study an interactive digital calendar with mobile phone reminders (RemindMe) for people with cognitive impairment, as support to increase the occupational performance in everyday life. Methods: This thesis includes four studies, using both qualitative and quantitative data collection methods. Study I was a focus group interview, exploring twenty senior people aged between 66 and 85 and their experiences of learning to use and using RemindMe in everyday life. The seniors had used RemindMe for six weeks and had received weekly support calls from a research assistant during the study period. After six weeks, the participants took part in focus group interviews. Four focus group interviews were conducted, analysed with content analyses. The use of RemindMe and feasibility aspects were also investigated in study II with a mixed-methods design. Eight patients with cognitive impairment, aged between 26–68, and seven occupational therapists participated. The occupational therapists were experienced in occupational therapy and were working at three different outpatient rehabilitation clinics in southeast Sweden. They had a median of 20 years of experience (range of 2–25 years). The patients received an introduction to using RemindMe, as well as weekly support calls from occupational therapists or a research assistant for eight weeks. Quantitative data was collected using the Quebec User Evaluation of Satisfaction with Assistive Technology 2.0 (QUEST 2.0). The frequency of and the actual use of RemindMe was generated by RemindMe. Qualitative data was collected via face-to-face interviews with occupational therapists, via field notes from the weekly support conversations, and during the assessments with patients with cognitive impairment. Analyses were conducted using descriptive statistics and directive deductive content analyses. Study III investigated the intervention with RemindMe, addressing plausible outcome measures by investigating changes in outcomes, impact on occupational performance, independence, health-related quality of life, and the psychosocial impact of support used for people with cognitive impairment. The design was a pilot randomized controlled trial with fifteen patients, with cognitive impairment, aged between 26–79, randomized to either an intervention group or a control group. The intervention group consisted of eight patients and the control group of seven patients. The outcome measures were assessed using the Canadian Occupational Performance Measure (COPM), the Functional Independence Measure (FIM), the EuroQol 5-Dimension Visual Analog Scale (EQ-5D-VAS), and the Psychosocial Impact of Assistive Devices Scale (PIADS). Study III was registered at ClinicalTrails.gov, identifier: NCT04470219. Study IV explored seven patients, aged between 51–71, experiences of strategies and support used to establish a new everyday life and their experience of support for time management and planning and structuring everyday life due to cognitive impairment. The study was a qualitative, semi-structured, face-to-face interview. The interviews were analysed with inductive content analysis. Results: The results of this thesis address learning to use and using assistive technology for cognition (ATC) in everyday life and outcomes from using RemindMe. The participants were accustomed to using calendars. However, there were differences in terms of whether they preferred to use “low tech” calendars (such as paper calendars), or “high tech” calendars (for example, digital calendars with reminders), or whether a combination of “low and high tech” was preferred (Studies I and IV). Other support strategies were also described, for example, the conscious use of objects as reminders in the home environment or everyday life routines (Study IV). Participants were positive towards the use of digital technology, especially mobile phones/smartphones that they easily can carry with them (Studies I and IV). Participants also described the advantage of using digital technology with active reminders and audio prompts, signalling, and telling them when to do something. This was described as the reminder “talks to me” (Study I). The actual use of RemindMe showed that reminders were for example used for taking medication, do exercises, or meeting family or friends (Study II). Occupational therapists in Study II described that their patients benefited from using reminders and that patients have to be active in their everyday life and perceive a need for reminders. The outcomes from measurements of occupational performance (COPM) indicate that patients in the intervention group increased their occupational performance and their satisfaction with their performance compared with the control group. The intervention group also increased their independence (FIM) in the communication and social and intellectual abilities subscales (Study III). Conclusions: The results indicate the importance of choosing a reminder that is suited to the patient’s needs, and this reminder can be either “low tech” or “high tech”. The important thing is that the reminder matches the patient’s needs. The result also indicates that for people with cognitive impairment to make full use of the reminder in everyday life, support with learning to use and using the device for a longer period is needed. Participants (Studies II, III, and IV) described scheduling and receiving active reminders as important for achieving a feeling of comfort and security. Another technique was to find habits and routines or objects to support time management and planning and structuring everyday life. Having a sense of comfort and security involved being in control of everyday life. It can be understood as people talking about being fully involved in their life situations, and in that sense as experiencing participation. However, this was s not investigated in the present studies. Two years after the rehabilitation period, digital or paper calendars were used to establish a new everyday life. Active reminders were trusted and resulted in a feeling of comfort and security as well as a sense of control and independence in everyday life.