Managing time with dementia : assessment and early detection of the need for time-related interventions and experiences of time assistive technology

Abstract

Background: Dementia is one of the most common global diseases. One frequently occurring consequence of dementia is time-related problems, and persons with dementia often need support from significant others to manage time in daily life. With no medical cure available, non-pharmacological interventions, such as the prescription of time assistive technology (AT), become important. Previous research has shown that persons with dementia can benefit from using AT. However, there is a knowledge gap regarding how occupational therapists assess the time processing ability and daily time management of persons with dementia and their experiences of prescribing time AT. Furthermore, while valid and reliable instruments assessing all three levels of time processing ability and daily time management are available for other patient groups, none have yet been evaluated for persons with dementia. Orientation to time and experience of time are known to be linked to dementia; however, expanded knowledge of associations between time processing ability, daily time management, and dementia severity could enhance the comprehension of time-related problems in dementia and further contribute to the identification of time-related problems and the need for time-related interventions. Considering this, it is also important to enhance the body of knowledge on how persons with dementia manage time in daily life and receive support from significant others in their daily time management, as well as examine the experience of time AT from the perspectives of both persons with dementia and significant others.

Aim: The overall aim of this thesis is to explore daily time management in persons with dementia, with a focus on assessments of daily time management and time processing ability, and the prescription and use of time AT from the perspectives of persons with dementia, significant others, and occupational therapists. The specific aims for the four studies are as follows: 1. (I) To explore occupational therapists’ experiences of assessing the need for and prescribing time AT for persons with dementia; 2. (II) To evaluate the psychometric properties of KaTid-Senior, Time-S Senior, and Time-Proxy when used with persons with dementia; 3. (III) To investigate the associations between time processing ability, daily time management, and dementia severity; and 4. (IV) To explore the experiences of persons with dementia and significant others regarding daily time management and their perceptions on how time AT affects their everyday life.

Methods: This thesis contains two studies where qualitative methods were applied (study I and IV) and two studies that used quantitative methods (study II and III). In study I, focus group interviews with occupational therapists (n=17, in total) who prescribe time AT for persons with dementia were analysed via qualitative content analysis. In study II and III, persons with dementia (n = 53) and their significant others (n = 49) participated. In study II, Rasch analyses were used to evaluate KaTid-Senior, Time-S Senior, and Time-Proxy regarding the following aspects: rating scale functioning; internal scale validity; person- response validity; unidimensionality; person-separation reliability; and internal consistency. In study III, bivariate analyses were used to investigate associations between time processing ability, daily time management and dementia severity. Linear regression models were used to further predict the role of the subtests in the Mini Mental State Examination (MMSE) for the time processing ability results. In study IV, semi-structured interviews with persons with dementia (n=6) and significant others (n=9) were carried out three months after obtaining the prescribed time AT. Qualitative content analysis was used for the analysis of interviews.

Results: The focus group interviews revealed that the prescription of time AT was a multiplex and time-consuming process that required support from significant others. Due to organisational limitations and time constraints, the occupational therapists were often impeded in following the national prescription guidelines. They also had to take responsibility for keeping up to date with existing time AT and commercial alternatives. The Rasch analyses demonstrated appropriate psychometric properties for KaTid-Senior, Time-S Senior, and Time-Proxy. However, in order to also target persons with mild symptoms of dementia, more challenging items should be added in KaTid-Senior. Moreover, the person- response validity parameters in Time-S Senior need to be remedied. The bivariate analyses showed significant correlations between time processing ability and dementia severity, where the strongest correlation occurred with visuospatial functions. Time processing ability also demonstrated a significant correlation to proxy-rated daily time management. Moreover, proxy-rated daily time management was significantly correlated with dementia severity and persons with dementia’s self-ratings of daily time management. Finally, the interviews with persons with dementia and significant others found that the significant others provided support for daily time management at all stages of dementia. The responsibility for time management, the top level of time processing ability, was successively transferred to the significant others, and the support in time management was often integrated with other kinds of support. Time AT supported time orientation but did not enable independent time management for the persons with dementia; however, it could enhance involvement.

Conclusion: Support from significant others is important in all aspects of daily time management for persons with dementia. This also includes support from significant others during the whole prescription process and implementation of time AT. Thus, there is a risk that persons with dementia without support from significant others do not receive time AT interventions or subsequent support in using the device. Specific forms of support need to be developed directed at those individuals to ensure that they have fair opportunities to obtain and benefit from time AT.

When assessing time-related problems in dementia, KaTid-Senior, Time-S Senior, and Time- Proxy can validly and reliably be used to assess time processing ability and daily time management, both in clinical research and healthcare settings. The assessments can also increase the possibility of early detection of impaired time processing ability and daily time management problems, facilitating early, timely interventions to enhance occupational performance.

Knowledge of the association between time processing ability, dementia severity, and visuospatial functions can further increase the possibility of early identification of time processing ability impairments. However, for a thorough assessment of time-related problems in persons with dementia, objective measures should be used together with self-ratings and proxy-ratings. These findings can be used in clinical research and healthcare settings to promote methods to compensate for time-related problems in dementia.

Since support in time management is transferred to significant others at an early stage of dementia, time-related assessments and interventions should be provided at onset to increase the possibility to maintain daily time management skills. Even when not used independently by persons with dementia, time AT and calendars can be used to inform about time management carried out by others, which can increase agency and occupational participation for persons with dementia. As persons without support from significant others comprise an extra vulnerable group, is it important that society has adequate resources to also meet their need of support in daily time management.