Torhild Holthe

Assessment of a Music-Based Multimedia Program for People with Dementia

Music in different forms is widely used in dementia care and several studies have shown that music-based activities support the well-being of people with dementia. The aim of this article is to describe the first results of an assessment study of a music-based multimedia program called ‘Picture Gramophone’ (PG). The assessment was carried out in dementia day care units (n= 5) in Finland, Ireland, Norway and the UK. In this article we describe the results from the first three weeks. Altogether, 28 people participated in the first interview and five dropped out over the three weeks. Most participants used the PG and, according to staff, most of them benefited from its use. Our results suggest that multimedia products can be used in dementia care if support is available and the design of the product takes into account the user requirements of people with dementia.

Occupational patterns of people with dementia in residential care: An ethnographic study

This paper describes an ethnographic study that sought to gain knowledge of the occupational patterns of persons with dementia in a care home and how the residents perceived the group activities in which they participated. The residents’ ages ranged from 82 to 92 years. They were seven women and one man. Both participant observation and interviews were used to collect data. Data analysis resulted in an ethnographic story organised around two key themes: (1) the occupational patterns of the residents, and (2) the residents’ perceptions of the activities offered. In this story residents appeared passive, playing the role of guests in the care home. Residents were dependent on staff to engage in daily occupations. Interviews revealed that residents perceived participation in activities as important to their mental and physical health and an advantage of living in the care home.

‘I Know Where this is Going and I Know it won’t Go Back’ Hearing the Individual’s Voice in Dementia Quality of Life Assessments

While it is generally agreed that any appraisal of quality of life should as far as possible rely on the individual’s own perspective, having people with dementia evaluate their own quality of life remains a much-debated issue. This article reports findings from a longitudinal study (ENABLE) designed to examine the impact of assistive technology on persons with dementia and their family caregivers. The study’s methodology sought to empower people with dementia by engaging them in the research process. Both quantitative and qualitative data on quality of life were collected from a sample of 92 persons with dementia before and after assistive technologies were introduced into their homes. This article presents preliminary baseline data on quality of life prior to when the home interventions (technologies) were introduced. Results demonstrate that people with dementia can competently participate in research on dementia and have more positive appraisals of their lives, roles and relationships than might be expected.

Ethical Considerations in the ENABLE Project

This article describes the ethical considerations and the framework that formed the basis for the design of the research methods, as well as the basis for choosing the devices to be tried out, in the ENABLE project. The principles of autonomy, beneficence and justice are defined and applied to an analysis of researchers’ experience. Some of the ethical difficulties arising from conducting an intervention study of this type with persons with dementia are outlined. The article needs to be read in conjunction with the other ENABLE articles published in this issue of Dementia.

Development of a protocol for the assessment of assistive aids for people with dementia

Assistive aids can support some people with dementia in their daily life. Examples are devices designed to facilitate time orientation, use the telephone, and cooker monitors that switch the gas off in case of over-heating. However, there is a dearth of knowledge about the feasibility of using different assistive aids and how to assess the usefulness of such products to the patient and the carer, as well as their costs and benefits for society. This article describes the development of a protocol for a multinational assessment study of different assistive aids to be used by people with dementia living in their own home. Experiences of using the protocol are also reported in this article. This work is part of the ENABLE project.

Tracing the successful incorporation of assistive technology into everyday life for younger people with dementia and family carers

Research shows that people with late-onset dementia and their relatives can benefit from using assistive technology (AT). Few researchers have investigated the use and utility of AT in everyday life for younger people with dementia (YPD) and their family carers. The aim of this study is to explore what characterised the implementation process when the AT was experienced as beneficial to the YPD and the family carer in their daily life. The qualitative longitudinal study followed 12 younger people (i.e. those under 65 years of age), who had recently been diagnosed with dementia and 14 of their family carers. In-depth interviews and observations during the process were conducted at the beginning, and were repeated every 3rd month for up to 12 months. The data were analysed, and the participants’ experiences further discussed on the basis of embodied, social- and everyday life-situated approaches, in order to provide a deeper understanding of the interactive processes involved in the trajectory. Five elements in the process were identified as important for the experience of usefulness and successful incorporation of AT. The AT had to: (1) be valuable by addressing practical, emotional, and relational challenges; (2) fit well into, or be a better solution for, habitual practice and established strategies; (3) generate positive emotions, and become a reliable and trustworthy tool; (4) be user-friendly, adaptable, and manageable; and (5) interest and engage the family carer. The study demonstrated the importance of understanding the use and utility of AT on the basis of embodied and social participation in daily life. The family carers played a significant role in whether or not, and in which ways, AT was absorbed into the everyday life practice of YPD.

The use of assistive technology in the everyday lives of young people living with dementia and their caregivers. Can a simple remote control make a difference

BACKGROUND This study was a part of a larger study exploring the impact of assistive technology on the lives of young people living with dementia (YPD). This paper focuses on one of the most useful devices, the simple remote control (SRC). The objective was to explore the reason why the SRC is significant and beneficial in the everyday lives of YPD and their caregivers. METHODS This qualitative longitudinal study had a participatory design. Eight participants received an SRC. The range for using it was 0-15 months. In-depth interviews and observations were conducted at baseline and repeated every third month up to 18 months. A situated learning approach was used in the analysis to provide a deeper understanding of the significance and use of SRC. RESULTS Young people having dementia spend a substantial amount of time alone. Watching television was reported to be important, but handling remote controls was challenging and created a variety of problems. YPD learned to use SRC, which made important differences in the everyday lives of all family members. Comprehensive support from caregivers and professionals was important for YPD in the learning process. CONCLUSIONS The SRC was deemed a success because it solved challenges regarding the use of television in everyday lives of families. The design was recognizable and user-friendly, thus allowing YPD to learn its operation. Access to professional support and advice regarding assistive technology is vital for establishing a system for follow-up and continued collaboration to make future adaptations and adjustments.

Responsible development of self-learning assisted living technology for older adults with mild cognitive impairment or dementia

In this paper we present work in progress in the Assisted Living Project – responsible innovations for dignified lives at home for people with mild cognitive impairment or dementia. The project has a distinctly interdisciplinary approach and engages experts in nursing and occupational therapy, in ethics and responsible research and innovation, and in technology, in particular automation and machine learning. Our approach is to involve the end-users, their family and their care providers and develop technology responsibly together with them. The technological approach employs self-learning systems to develop solutions that provide individualised support in accordance with the user’s values, choices, and preferences. The paper presents our approach, current findings and future plans.

The assisted living project: a process evaluation of implementation of sensor technology in community assisted living. A feasibility study

Abstract Introduction: The ageing population has been described as a grand societal challenge worldwide, and access to technology is one important strategy for meeting this challenge. The Assisted Living Project has a responsible research and innovation approach and includes older adults in evaluating sensor-based functions in assisted living facilities. The purpose of involving users in research is to enhance a wider dialogue about the values, methods, and purposes of the research project. Methods: We carried out a feasibility study in order to inform the development and conduct of a pilot project with eight residents. The purposes were to evaluate the process of technology installation, the feasibility of the technology, and methods for user involvement. One resident, Hilda, gave her informed consent to take part in this feasibility study. Her sensor system consisted of two magnetic sensors, six pyroelectric infrared motion sensors, one power sensor, one push button by the entrance door, and one loudspeaker. The sensors were wirelessly connected to a controller, which registered and transmitted all data to a secure server. Results: The feasibility study suggested important modifications for the pilot project, which concerned pre-configuration of the sensors, securing efficiently, rapid installation, number of visitors during the installation, preparation necessitating a site acceptance test for the wireless network and environmental prerequisites for mounting the sensors. Furthermore, this study recommends that the signals that are transmitted from the sensors to the secure server need verification. Conclusion: A feasibility study provides an opportunity to inform develop and conduct of a main trial. The MRC framework was useful for doing a process evaluation to assess feasbility and quality of implementation, clarify causal mechanisms and identify contextual factors associated with variations in outcome. Implications for rehabilitation The feasibility study was useful in order to develop sustainable technological solutions by evaluating the robustness of the technology consider challenges regarding the architectural features/requirements for mounting sensors etc. decide user needs for individual tailoring to reach a ‘person-fit’ technology User participation in a feasibility study is vital to learn about the end user’s needs and expectations regarding information, technical support, for support in daily use and follow-up. Transdisciplinary collaboration in the feasibility study is necessary to inform the main technology implementation project.

Benefits and burdens: family caregivers’ experiences of assistive technology (AT) in everyday life with persons with young-onset dementia (YOD)

Abstract Background: People with dementia and their family caregivers may benefit from assistive technology (AT), but knowledge is scarce about family carers’ (FC) experiences and involvement in the use of AT in everyday life. Aim: To examine the FC roles and experiences with AT as means of supporting people with young onset-dementia (YOD). Method: Qualitative interview study with follow-up design. Repeated semi-structured interviews were conducted with 13 FC of people with YOD, participating in an ongoing intervention study investigating the families’ use and experiences of AT in everyday life. Results: Six main themes emerged: (1) timely information about AT; (2) waiting times; (3) AT incorporated into everyday living; (4) AT experienced as a relief and burden; (5) appraisal of AT qualities and (6) the committed caregiver. Conclusions: The study found benefits for the FC, especially with simply designed AT, but also several barriers for successful use. A committed caregiver is vital throughout the process. Users will need professional advice and support, and occupational therapists may have a significant role in the process. Interventions implementing AT must be based on analysis of the needs of the person with YOD and the carers: their capabilities, preferences, embodied habits, and coping strategies. Implications for Rehabilitation Committed family carers (FC) play an important, often decisive, role in providing support for the person with young-onset dementia (YOD, onset <65 years) to use and benefit from the AT. The simpler the AT, the better. The AT should be introduced at “the right time”, before the cognitive and adaptive reduction is too great. The “window” for implementation may be short. AT has potential to ease caregiving and give relief for FC. However, many barriers, difficulties and problems must be attended to. A system for individualized support over time is necessary for implementing AT for this group.