Learning with dementia: (re)learning meaningful activities for people living with dementia

Abstract

At this point, around 280.000 people are living with dementia in the Netherlands and this number is expected to grow significantly in the coming decades due to the aging population. It is expected that by 2040 the number of people with dementia will grow to 520.000 and expand to over 620.000 people by 2050 (Alzheimer Nederland, 2018). This puts pressure on the Dutch healthcare system.Despite their impaired memory, people with dementia still have the ability to (re)learn tasks when addressing the memory systems that are associated with automatic processes and performing activities, which are relatively spared in dementia (Eichenbaum, Cohen, Otto & Wilbe, 1992). These tasks include everyday activities such as knowing how to tie your shoes, how to make coffee and how to walk a certain route.A learning method which makes use of the implicit memory is errorless learning. This is a highly structured learning method used in rehabilitation for people with dementia to (re)learn skills (De Werd, Boelen & Kessels, 2013). By regaining the ability to perform meaningful and important activities, people with dementia could maintain or improve their independence and quality of life (Cohen, Ylvisaker, Hamilton, Kemp, & Claiman, 2010).Within this thesis, the aim was to research the possibilities of involving informal caregivers in the errorless learning process for people with dementia in the home environment. The insights gained from this research are used to develop a solution that supports informal caregivers to (re)learn meaningful tasks or activities to people with dementia to maintain or increase their independence.In the analysis phase of the project, literature research was done on the errorless learning method to give an overview of how this method is applied in the current situation and which elements it consists of. Explorative research methods have been done to define what is needed to bring this method in the home environment and involve the informal caregiver in the process. This research consisted of interviews with experts on errorless learning and dementia care, hosting focus groups with people with dementia and informal caregivers, and performing two case studies.Based on the literature and explorative research, the most important aspects concerning the errorless learning process in the home situation were described by discussing the needs and requirements per stakeholder. These included the person with dementia, the informal caregiver and the professional caregiver who should guide the learning process. This was translated into a vision on how errorless learning could be performed in the home environment by visualizing it in a desired journey.A new design goal, opportunities for design, and design requirements were defined, which formed the base of the design phase. Individual and group ideation sessions were done which resulted in the proposal of a platform that was developed iteratively through low-fidelity tests, interviews and a focus group. Simultaneously the desired journey was refined.The concept proposal Leren met dementie is a platform that informs, educates and guides the informal caregiver throughout the process of errorless learning to (re)learn meaningful activities to people with dementia. It provides information on why this learning method should be applied, how to apply it and how to approach the person with dementia. This is done through a website, booklet, and application. Part of this website and application is an online tool, the Stappenplan maker. With this tool, a (printed) step-by-step plan can be made with pictures and instructions tailored to the person with dementia to use during the learning sessions.The concept proposal was validated in a focus group with the participation of people with dementia and informal caregivers. Secondly, the platform was evaluated with a professor of neuropsychology who is involved in research on errorless learning for people with dementia. This was done by describing the scenario as visualized in the desired journey and discussing the platform Leren met dementie to determine the desirability, feasibility, and viability of the proposal.Based on the validation, it could be concluded that Leren met dementie could serve as a base to further develop, discuss, research and test the possibilities of errorless learning for people with dementia in the home environment by involving the informal caregiver. However, more research is needed to evaluate the usability and understandability of the platform for the target group. Secondly, the effects of involving the informal caregivers and the step-by-step plan on the learning effects for people with dementia should be researched.