Report

Teaser, summary, work performed and final results

Periodic Reporting for period 1 - MinD (Designing for People with Dementia: designing for mindful self-empowerment and social engagement)

Teaser

MinD aims to help people with dementia (PwD) engage in social contexts to improve psychosocial wellbeing. People who are affected by Alzheimer’s disease or other dementias often face cognitive, behavioural and psychosocial difficulties, including impairment and degeneration...

Summary

MinD aims to help people with dementia (PwD) engage in social contexts to improve psychosocial wellbeing. People who are affected by Alzheimer’s disease or other dementias often face cognitive, behavioural and psychosocial difficulties, including impairment and degeneration of memory and of perceptions of identity. This can cause difficulties of recognizing, relating to and empathising with other people, which often pose a challenge for engaging socially, reinforcing their effects and reducing personal well-being.

Design can offer novel ways of complementing existing care approaches to empower PwD in everyday social situations. Using the concept of mindful design, we investigate innovative design solutions to enable PwDs’ self-empowerment and confidence building. We focus on a) personal difficulties with social interaction and b) environmental influences on social engagement. In these two contexts, we study how personal, wearable designs can help mediate perceptions of identity and emotion management; and how environmental aspects can reduce feelings of information overload and instil feelings of self-empowerment and control.

Our objectives are to:

1) investigate the challenges and opportunities of increasing subjective wellbeing and social engagement for PwD through design from a mindfulness perspective;
2) develop mindful co-design approaches to empower PwD to express their needs and challenges during the design process;
3) develop a mindful design approach to developing design product solutions to empower PwD to engage in social contexts;
4) investigate and test the conceptual and technical development of tangible mindful design solutions, both personal and environmental, supportive of personal well-being and social inclusion within a dementia care context;
5) develop a holistic model of mindful design-integrated dementia care with regard to the challenges and opportunities of social engagement.

Outcomes include new uses of design for helping PwD to engage socially and improve subjective well-being; a robust methodological co-design framework for the development and evaluation of the designs in dementia care settings; a holistic mindful model of designing and of a model for mindful care for social engagement for PwD; policy recommendations for the inclusion of design within dementia care.

Work performed

MinD comprises 5 scientific work packages (WPs 2-6), progressing in 3 overlapping phases, bracketed by mindful framework development (WP2), and underpinned by the organisational WPs.

Mindful framework for data collection (WP2):

The Mindful Design Framework is MinD’s theoretical backbone, providing the conceptual framework and values that underpin the practical aspects through MinD’s research phases, including data collection, design development and implementation evaluation. The scientific work during the first two years consists of a review of the theoretical position and approaches of mindfulness, and the identification of core mindfulness values, synthesised into a framework as a starting point and guide for the data collection.

Dementia framework and data collection (WP3)

The core tasks of WP3 are the theoretical review of the relevant areas of dementia care as a context for the data collection and analysis with PwD and their carers, which has been conducted to collect information about activities of daily living (ADL), leisure and social activities, involvement in decision making in these three areas, times/situations of well-being (or not), changes over time, any supporting objects, artefacts or devices used.

Data was collected in ES, DE and NL with both PwD and their carers. To provide a holistic understanding, 3 different types of data collection were used: focus group interviews, individual interviews, and visual diaries. The latter were introduced to allow for the collection of richer data in particular with regard to people’s emotions, values, and visual information on design objects or devices (either supportive or challenging). Data collection ran from September 2016 to April 2017, and was presented for validation and feedback in LU in May 2017 to the team as well as the Alzheimer Europe Working Group (including groups of PwD and carers).

Mindful design framework (WP4 and WP5)

Work on WP4 and 5 began in Sept 2016. In the 1st 6 months, the teams of both WPs worked closely together, and with WP2/3, to develop materials to support data collection, and establish the framework.

• development of visual cards and visual diaries to support data collection and provide a holistic and design-based approach. The visual cards supported focus group and individual interviews with PwD as prompts and memory aids when talking about everyday, leisure and social activities. The visual diaries complemented the formal interviews, to be completed at home with more time and reflection, to understand better participants’ wishes and values, difficulties and challenges in everyday life.

• review of existing design products and services available to support PwD and their usefulness with regard to personal well-being, self-empowerment and meaningful social engagement.

• development of the framework and tools, including:
o framework for mindful scenario and task analysis to interrogate the data collection results for opportunities for mindful design interventions related to improving subjective wellbeing, self-empowerment and meaningful social engagement.
o Design development methods, including ideation and brainstorming to develop tangible design solutions.
o Design guidelines for designing with and for PwD.

• WP4 and 5 started developing the application of the framework to supporting PwD personally, as individuals (WP4), and to develop suggestions for a more supportive environment (WP5) through scientific papers.

Training, dissemination and outreach (WP7 and WP8)

MinD is delivered through events and training activities during the exchanges (eg presentations, site visits and training workshops, co-research, public discussions).

Dissemination and outreach are achieved through academic and public outlets, including public symposia, presentations and workshops with Public and Patient Involvement groups.

Final results

MinD makes a significant contribution to the improvement of European research and innovation potential:

• contribute to dementia care research (a core EC priority) through its unique focus on social engagement, joining dementia care, mindfulness and design. Through this integration, MinD will improve the human dimension of dementia care.

• Aid human-focused use and integration of new technologies within health, which corresponds to EC recommendations, especially within dementia care. MinD addresses current issues of insufficient user involvement in the development of technological innovations, highlighted by leading Alzheimer organisations.

• Significantly further design innovation potential through the expansion and application of design interventions for healthcare – supporting the goals of ‘Design for Europe’: enabling innovation and improving peoples’ experiences as well as public services.

• Further design research capability: both staff expertise and capacity building. It will provide capacity for the growth of EU design research and its contribution to health care improvement, in particular dementia care, by providing new skills to staff and training for early stage researchers in the field of design research.

Website & more info

More info: http://designingfordementia.eu.