How can I tell you what’s going on here? – The development of the PIECE-Dem observation tool

People with advanced dementia face particular challenges in not being able to tell anyone directly about their experiences, especially if care is poor. They are also more likely to be vulnerable to the risk of abuse, neglect and loss of dignity. Whilst it is recognised that much can be gained by interviews and focus groups, the perspective of those with significant communication problems is likely to be under-represented in research.

One of our early research projects was to develop a robust and sensitive tool to capture the experience of people with advanced dementia. The aims were to develop a tool that:

• Focused on the experience of people with advanced dementia to ensure that their perspective is included in research;
• Could capture both positive and negative experiences of care which could help differentiate between care environments where abuse, neglect and loss of dignity were more or less likely to occur;
• Could be used both by researchers and practitioners with minimal training to assess the experience of those with very limited or fluctuating cognitive abilities;
• Focused specifically on observable signs of abuse and neglect or risk factors associated with this.

How was the tool developed?

13 in-depth interviews and 5 focus groups were undertaken with experts by experience including professionals, whistle-blowers, family members whose loved ones had been abused in care, and people living with dementia. Thematic analysis identified key themes from which a pilot observational framework was developed: PIECE-Dem

PIECE-Dem stands for Person, Interaction, Environment, Care Experience in Dementia.

The observational tool was developed in practice in 7 care homes in 11 successive trials. After each trial the observation results and researcher reflections about the process and experience of observation were used iteratively to inform further development of the tool and the underpinning theoretical framework. Repeat visits to 3 care homes were completed to carry out inter-rater reliability, which showed a high level of concordance between researchers.

How is PIECE-Dem used?

Each researcher chooses two residents to be observed in detail. As well as dementia, the selected residents have high levels of need and characteristics which mean they are potentially most at risk of neglectful or abusive practice. Residents are not observed if they have a history of paranoia, are newly admitted, or have unstable mental or physical health. Anyone who appears uncomfortable with the researcher’s presence is excluded from the observation process.

One researcher observes two participants, spending time alternately with each in 15-minute blocks for 2 hours. The researcher observes the participants’ experiences of the world around them and makes a written record at one-minute intervals of their levels of engagement, interactions that occur and how their immediate environment appears to be impacting upon them. After 2 hours the observations are summarised.

Observations generally occur in public areas. Intimate care activities are not directly observed, but how residents are escorted to the bathroom following an episode of incontinence, how they appear following intimate care delivery, or how they are helped to eat a meal will often be very telling. Observation periods include times of high demand for staff interventions and times when there is a high level of need for personal care, as well as reflecting the resident’s routine and level of activity.

What are the implications for policy and practice?

PIECE-Dem provides a structures means of including the perspective of people with advanced dementia in research into the quality of care. It has potential to be a useful tool for those with responsibility in regulating, inspecting or monitoring care practice. It provides further insight into the experience of people with advanced dementia in care, recognising that challenges tend to be institutional rather than with individuals.

How has the Association for Dementia Studies used PIECE-Dem?

Since its development, PIECE-Dem has been used as the observational tool within two of our main care home-based projects:

• CHOICE – Care Home Organisations Implementing Cultures of Excellence
• Namaste Care Intervention UK

We are also looking at developing it further, potentially in terms of an instruction manual and accompanying training course, so that it can be used by practitioners to assess the experience of their most vulnerable residents.

Project funding

The PIECE-Dem research and development was part of the PANICOA (Prevention of Abuse and Neglect in the Institutional Care of Older Adults) Research Initiative and was joint-funded by the Department of Health and Comic Relief.

For more information about PIECE-Dem please contact us on dementia@worc.ac.uk

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