My topic stems from a user research challenge my team and I are setting up right now. Our project’s context is community dementia care but the core UX issues and eventual approach decided upon could be applicable elsewhere, hence a good topic for wider discussion. I am learning about dementia as I go so the following is written from a laypersons’ perspective.
At ground level, the project aims to extend dementia care support further into the community. At a macro level, the project is about working towards a cohesive national system of care to manage increasing demand on resources as the population ages. Success at a community level will be determined by positive differences made to Persons With Dementia (PWDs) and their caregivers. Assessment of success at a national level will be how a model of community care compares to institutionalization in a nursing home (cost).
What I have learnt from clinicians and social workers is the majority of dementia cases are not captured by supporting services. Services familiar with difficulties on the ground note the reasons the majority of dementia cases are not captured occur out of sight behind closed doors. Reasons are a likely mix of social, cultural, educational, familial, and financial to other personal and community factors. Succinctly put by a social worker, “dementia care is about coping”, i.e., caregiver ability to cope on top of all the day-to-day things the rest of us care responsibilities might consider a tough day. The challenge in hand is how to design research so participation is feasible for caregivers and the insights gained will be relevant to the project goals. Simply put, we first need to better understand our target users before developing anything.
So what does this mean in terms of research work on the ground? Caregivers want relief but many may not see the point of research, nor have the time or energy to participate. For willing participants, difficulty in articulating their situation will be another challenge. Ethnography can give participants a voice but as with most personal issues, once you start looking you will find them to be multilayered. Getting to the root of a PWD and caregiver’s difficulties could be like working with them through a set of Matryoshka (Russian nesting) dolls. Each layer may have part of their story but the core is where the reasons driving their perception and behavior are rooted.
CC Image James Lee on Flicker
Key discussion points from the group
The below key points are captured from the discussion. Ethics requirements were not included but will be considered for the overall research design of a project. Ethics reviews are in place to protect the rights and welfare of participants involved in research.
- Stigma: Persons with dementia and caregivers may not want to share personal details due to negative perceptions of dementia in Asian culture. Immediate family of persons with dementia may not even want extended family to know after dementia first sets in.
- Research focus shift: Common ethnographic tools such as opened ended interviews are less effective when people find it difficult to articulate their concerns. In such cases a narrative where people feel the focus is on describing the scenario and less on them can ease discomfort in talking about difficulties. Prompts captured from an individual’s daily life can facilitate a narrative. The prompt or record validates the existence of the problem and leaves the narrative free to explore what is happening. With less sensitive topics, tools such as Narrative Clip could be considered. With dementia cases the Narrative Clip or similar would not work as PWDs will not wear anything unfamiliar and caregivers may not agree to photos or video records.
- Secondary sources of insight: If photography and videography are not possible, individuals who are part of the daily routine of PWDs could highlight difficulties and stress points they see. These insights could come from children, friends, neighbors and members of the community. Such alternative sources may only capture that something has happened but that could be enough to support a narrative. If PWD’s and caregivers are comfortable enough, they may go onto vent their frustrations. An emotive outburst would lose objectivity but may capture usually unspoken issues, which could be revisited (and verified) later when the individuals are composed.
- Immersion is important: Community familiarity with researchers, even if cursory would be better than researchers turning up cold. A familiarisation stage with the community and key individuals through introduction by social workers would be essential for researchers to get their bearings. Without the trust of the community, researchers will unlikely get insights beyond what is already visible.
- Unfamiliarity with symptoms: The immediate family of PWDs may not notice the onset of dementia. Subtle early behavioral changes might be accepted without realising the possibility of dementia. One example given was a family had no idea until an incident prompted a hospital visit. After diagnosis, there was a struggle to fully understand what they were dealing with.
- Multiple home visits over one-off: Dementia-induced behavior comes in spells. Researchers may not see behavior changes if these occur outside of scheduled home visits. Behavior is usually triggered by stress and researchers will need to respond quickly to have visibility of PWD and caregiver behavior as it happens.
- Appropriate incentives: The question of appropriate incentives for research participants also needs careful consideration. The socio-economic status of some PWDs and caregivers can be a factor in not receiving support by dementia care services. Such caregivers are simply working hard to make ends meet. Cash or incentives with monetary value could be a strong motivator but may inadvertently carry a bias into the insights gained.
The above is a snapshot of dementia in the community and of one initiative working towards a broader system of care. The project in question will run for three years with results from each stage to be first understood by stakeholders before sharing in the public domain.
The approach, however, can be shared as each stage of work is done. As mentioned above, the approach decided upon could be applied to different situations and sectors where end users find difficulty in articulating their concerns, needs and wants.
Below are some links for those interested to know more about community dementia care, or designing dementia friendly communities. There is much scope for UX in social issues be they worked on in the private, public or VWO sectors.