Partnering with people living with dementia and care partners in technology research and design: Reflections and recommendations.

INTRODUCTION: Occupational therapists may recommend and support technology use for facilitating independence, safety, wellbeing, and participation. There are high expectations for technology for people living with dementia. However, there is recognition that technologies will need to improve to deliver these expected benefits. People living with dementia have historically been excluded from direct involvement in research and design. A program of participatory research was undertaken to codesign technologies and technology research with people living with dementia and care partners. This work aims to capture the requirements, actions, and barriers experienced in forming these partnerships in technology research and design. METHODS: A shared metareflection of experiences was conducted by members (5) of the research teams involved in three participatory research and technology design studies. The team comprising living experience experts, an occupational therapist, and interaction designer reflected on their experiences and derived recommendations. Key considerations for effective partnerships were drawn inductively by the authors from study experiences, materials, and reflexive discussion. FINDINGS: Six core areas were identified. These were four action areas-(1) Agree on the value; (2) The time to start partnering is now; (3) Ask not assume; and (4) Push back on 'we always have'-(5) barriers and tensions, and (6) unexpected benefits. The reflections indicated that genuine partnerships and engagements were possible with living experience experts in research and design teams. These required resourcing and focussed actions to promote partnership. Despite some structural changes that encourage partnering, there are considerable barriers to this engagement; however, benefits beyond the expected ones can be realised. CONCLUSION: Genuine partnerships in technology research and design with living experience experts are possible and lead to benefits for the team, research outcomes, and technologies. Recommended actions could support expansion of effective partnerships with people living with dementia and care partners as well as other partnerships in research.

Personal and complex: The needs and experiences related to technology use for people living with dementia.

BACKGROUND: With increasing focus on living well with dementia, technology has been identified as having potential benefits for safety, independence and wellbeing. Despite a large growth in specialised technology development, there has been limited uptake. There is a need to understand the current use and needs related to technology for people living with dementia and their care partners (informal carers). METHODS: As part of a participatory design study, a qualitative inquiry into technology experiences and needs was undertaken within an interpretive description approach. A cross-disciplinary team including living experience experts (people living with dementia, unpaid care partners) was involved. Semi-structured interviews, including sharing technology locations and supports, were conducted, audio-recorded and transcribed. Key aspects of the technology use experience were constructed. FINDINGS: Thirteen people living with dementia and 21 care partners participated in the study. Two core aspects of technology use were identified: Lots of moving parts: the complex context, and A technology cycle: the use and non-use. The findings indicated that the context involved an individual configuration of multiple factors including the user, their technology identity, their supporters, the technology and the environment. The experience is underpinned by shifting foundations created by constantly changing technologies and user characteristics. The cycle of use and non-use identified the processes required to maintain technology engagement. CONCLUSION: The use of technology for people living with dementia is complex and personal. Future technology development, policies and practices need to consider this complexity and the effort required to keep using technology to realise the benefits.

Active inclusion of people living with dementia in planning for dementia care and services in low- and middle-income countries.

Involving people living with dementia in service design and planning has become more common in high-income countries. It remains rare in low- and middle-income countries where two-thirds of the world's people with dementia live. In this commentary article, we explore the barriers to inclusion of people living with dementia in planning in low- and middle-income countries and make a case for the inclusion of people living with dementia in care and service planning. We suggest how this can be done at individual, community or national and state level using the following principles: 1) respecting the rights of people living with dementia to self-determination; 2) valuing people living with dementia's unique understanding of dementia; 3) creating a culture of active inclusion which creates a space for people living with dementia to participate and 4) ensuring appropriate accommodations are in place to maximise participation.