‘Person-centred’ means care centred on the needs and priorities of the individual. Person-centred outcome measures are standardised questionnaires completed by individuals (or proxies when the person is unable to fill these out themselves) of their own health status. Used in care, they improve identification and monitoring of an individual’s needs, support communication between individuals and practitioners, increase referrals, and support care planning. As a result, they may improve outcomes, such as reduced distressing symptoms.

The IPOS-Dem is a person-centred outcome measure. It was developed to incorporate symptoms and concerns that people living with dementia may often experience either due to dementia or other long-term conditions common in older age. These include physical symptoms (like pain), psychological symptoms (like depression), social concerns (like reduced opportunity for social interaction) and spiritual concerns (like not feeling at peace).

Developing IPOS-Dem

To develop this outcome measure, Dr Ellis-Smith worked closely with practitioners and family members. This ensured that the IPOS-Dem included all relevant symptoms and concerns, ensured that the language and response options were clear and easy to understand, and that it is easy to use in routine care.

After developing the IPOS-Dem, Dr Ellis-Smith evaluated its use in routine care of people with dementia living in care homes. The results demonstrate that IPOS-Dem has the potential to improve systematic identification and monitoring needs, facilitate communication within care homes, facilitate communication with family members and external health practitioners, and improve care planning.

Continuing impact

Since its publication in 2017, IPOS-Dem has been implemented into routine care in care homes, community teams, inpatient wards and hospices across the UK. In 2019, a clinical audit of the implementation of IPOS-Dem was conducted in 11 health and social care settings. These included residential and nursing homes, acute and mental health inpatient services and community settings. In 2023, an NHS England Midlands Palliative Dementia Toolkit, which was launched regionally and nationally which includes IPOS-Dem, along with an IPOS-Dem training video and manual. Internationally, the IPOS-Dem been translated into German, Italian, Swedish, Swiss German, Thai, Chinese and Persian. Dutch and Japanese translations are on their way.

The IPOS-Dem has been the subject of seven PhD students’ studies, and has been developed into a complex intervention within a £4.7m ESRC funded programme: Empowering Better End of Life Dementia Care (EMBED-Care). In this programme, the team have co-designed the intervention, called the EMBED-Care Framework, with people with dementia, family carers, and health and social care practitioners. The EMBED-Care Framework comprises IPOS-Dem to enable holistic assessment and evidence-based decision support tools to manage identified symptoms and concerns. It is delivered through an app and includes animated training videos, a manual, automated alerts and a dashboard to track symptom changes.

The programme of work continues to develop the science of palliative dementia person-centred outcome measures, and how they are implemented and used in routine care.

Working as an early career researcher

Dr Clare Ellis-Smith conducted this research as part of her PhD. She is an occupational therapist and, prior to starting her PhD, had many years’ experience working with people with dementia in mental health services.

Dr Ellis-Smith has further advice for any early career researchers looking to develop their practice.

'Develop research questions that are important to the population,' she says. 'In my case this was people with dementia and their family carers. I believe it is essential to consult with stakeholders when developing research questions to ensure that research is driven by clinical need. This means working closely with diverse Patient and Public Involvement members to develop and refine the research question and also working closely with other stakeholders such as practitioners.

'I would also advise that stakeholder engagement is needed long after the research is completed. I continue to work with practitioners across settings both to support implementation of IPOS-Dem and to learn what practitioners need to use IPOS-Dem in routine care. This continues to inform my research and impact activities.'