Cardiff project to share dementia work in Scotland

A Cardiff-based project aimed at improving access to end of life care services for people with learning disabilities and people with dementia will share its work at a specialist annual conference in Scotland this week.

Monica Reardon is the project manager for the Big Lottery funded Including Diverse Communities in End of Life Care project, based at the Marie Curie Cardiff and the Vale Hospice. 

She is set to present at the New Directions in Palliative Medicine Finding Strength: Challenges and Opportunities for Patients with Neurological and Psychiatric Disorders conference on September 28, to highlight the work she has done and some of the outcomes so far.

“This project aims to improve access to palliative care services for people with learning disabilities and people with dementia,” said Monica.

“The goals are to identify barriers to service access, implement changes within our services to reduce barriers and share best practice supporting these groups at end of life.”

Monica collects data through focus groups and surveys, with participants recruited via organisations that support these groups. The project manager has also run information sessions for professionals to increase their awareness of barriers faced by these groups and how to support them.   

Data has not been formally analysed as yet, but themes that have emerged include

• People with Dementia benefitting from earlier involvement from palliative care services due to the prolonged dying trajectory of dementia.
• Both people with Dementia and people with learning disabilities are often supported by social care professionals and these individuals are well-placed to identify patients who are dying for referrals and support patients around care planning at end of life.
• Partnership working could improve social care staff’s confidence around providing support to these groups and improve access rates of palliative care services by both groups.

Monica will also highlight the work being undertaken around becoming a Dementia Friendly hospice both with physical changes to the environment and further staff training to improve confidence.

“In many ways the message has come back to this throughout the project—improving services’ accessibility to meet the needs of one group often has a ripple effect on improving services for all,” she said.

“While these groups face unique needs and challenges compared to other patient groups, some of the improvements we can make to reduce these barriers will have a wider positive impact on the service we provide.

 “Overall, the outcomes of this project, shaped by the input and involvement of people affected by dementia and learning disabilities, will not only improve our services for these groups, for whom we know there is a clear need, but will also more broadly ensure that more people living with a terminal illness have access to high quality care until the end of their lives.”