Interactive dementia pathway toolkit

Based on an initial idea from Faculty member Iracema Leroi, December has seen the Dementia Academy develop a new multi-level integrated dementia pathway toolkit that we hope will be a useful resource for everyone working in dementia care.

It was identified that there was a significant gap in the joined-up knowledge of how professionals can support people living with dementia and their caregivers. Professionals require easily accessible, pragmatic, and dynamic information about dementia which can be tailored to the specific needs of their local populations to assist in supporting people with dementia at all stages of the condition and in various settings.

Based on other pathway models developed by the Parkinson’s Academy an Expert Reference Group was estasblished led by Dr Ira Leroi, Sue Thomas and Dr Tony Burch, a London GP now working in GP education with Health Education London. Via the setting of two consecutive day-long dementia masterclasses which were supported by the NHS England National Clinical Director for Dementia Professor Alistair Burn, an overall framework outline was developed to elicit the knowledge, expertise and opinions required to develop draft versions of the interactive care pathway. The format of the pathway was based on previous successfully implemented care pathways for other conditions like Parkinson’s.

Using a modified Delphi technique the contents were elicited using various methods at the Dementia MasterClass including: (1) didactic lectures from experts in the field; (2) small break-out group consensus discussions prompted by prototype clinical cases drawn from various care settings; (3) a facilitated panel discussion of multi-disciplinary experts regarding ‘crisis points’ in the community setting; and (4) small group workshops regarding key psychosocial support issues, each led by a relevant expert. In the first MasterClass, the basic content was agreed upon by group consensus.

The information was captured by field notes and video recording and transcribed into the interactive format by the pathway lead, Sue Thomas, and fed back to the group for approval of content. In the second MasterClass, two months later, and with a different group of expert professionals, the first draft of the pathway was presented, the content sharing activities repeated, and specific feedback on the draft pathway requested from the professionals before eliciting the input from patient and caregiver stakeholders in an informal focus group setting. This led to a second and third iteration of the pathway.

Content identified as essential has been obtained by working in partnership with the NHS England Greater Manchester and East Lancashire Clinical Network and also includes contributions on aspects of care for example around delirium, anticholinergic burden and end-of-life care. Experts in each MasterClass were drawn from the following care disciplines: geriatric psychiatry, mental health nursing, primary care (GPs), geriatric medicine, neurology, occupational therapy, social work, third sector, emergency services (police and ambulance), commissioning and policy leaders.

The output is an integrated care pathway toolkit which is based on what participants felt would be of most use to them in both providing and commissioning dementia services. The pathway is highly adaptable to incorporate local care needs and guidelines as well as to capture updates in care practices. In the growing field of dementia care, an integrated care pathway toolkit that is this adaptable and dynamic will improve the care of people with dementia and their families, particularly in primary care settings and we would welcome feedback on its usefulness in clinical practice.