An action research study of Palliative Care for people with A Dementia and their carers

Abstract

The objectives of this participatory action research were to: identify the palliative care needs of PWAD and their carers in West Lothian; analyse two dementia care services as they develop practice in the assessment and management of distress for PWAD, and supporting carers; determine implications for practice development and service delivery.

Multiple data collection methods were used including; focus groups, interviews, participant observation, reflective accounts, case studies, documentation review, action learning and notes recorded from meetings with staff.

The first phase was a dementia palliative care needs assessment. Eight PWAD, 25 carers and 63 service providers participated in interviews and focus groups. Overall findings were that a palliative care approach provided a useful and appropriate framework to understand the needs of PWAD. Recognition of and support for family carers should take a high priority when considering a model for dementia palliative care.

More specific needs were identified, these included: the need to develop person centred approaches; enhance the management of pain and distress and enhance individual support for carers.

Two services participated in the action phase; a day centre and a hospital ward. Eleven people with a dementia, 28 carers and 86 service providers participated. Services focused on carer support or assessing pain / distress.

Carer support findings: implementing an assessment tool enhanced staffs understanding of carers needs; carers preferred flexible and individual support interventions; family carers experienced cumulative factors that restricted access to support.

Assessment of distress findings: assessing distress from the behaviour of PWAD was complex. The implementation of the Disability Distress Assessment Tool (DisDAT) identified new evidence that it provided a person centred assessment suitable for PWAD.

It was identified that the theoretical concept of relationship centred care, could provide a way of working, that complemented the adoption of a palliative care approach for PWAD, whilst enhancing carer support and assessment of distress practices.