Beyond Barriers

Developing a palliative care approach for people with the later stages of dementia Jenny Henderson

The Beyond Barriers project A partnership between Alzheimer Scotland Care Commission Dementia Services Development Centre Stirling University

Beyond Barriers Project Dementia and Palliative Care Education Support sessions Communication

Rollout Phase January 2008 to March 2009 A total of 10 course + a pilot course

What have we achieved? Total care home staff participating in the course 85 Total relatives participating in the course 46 Total number of care homes participating in the course 55 Total number of care homes invited to attend the course 77

The challenges of involving relatives… Finding relatives Unsure of the content of the course Staff insecurities

The rewards of relative involvement Staff had much to learn from relatives Relatives views have been a catalyst for many of the changes the care homes have made staff have gained an increased understanding of relatives needs having relatives on the course has been enlightening, interesting and gave me time to think and put myself in relatives shoes staff member

The challenges of involving care homes Communication communication communication ! Difficulties in releasing staff for such an in depth course Geographical constraints

The Rewards… enabling change in practice Spirituality Activities Communication Relatives needs Management of pain End of life care Planning care

The challenges for facilitators communication …communication! working with staff and relatives together tackling sensitive topics group dynamics But also the rewards…

Im going to start by saying God bless when I leave him She used to enjoy listening to music but I hadnt played it for a while so I started to hum some of her favourite songs and I know she could hear me.. She started rubbing her hands when the music played I would have never thought about reading to her at this stage. I didnt think she would hear or understand but it definitely helps to calm her down

Staff comments……… I didnt realise that relatives could feel so distressed Relatives need to be involved much more I never thought about dementia as a terminal illness This course should be compulsory for all staff!

What Beyond Barriers has given us Tears Frustration Anger Sadness

also… also… Laughter Fun Happiness Enthusiasm Commitment Belief

Most of all we have shown :- Most of all we have shown :- it is possible for relatives and staff to work together it is possible to tackle difficult and sensitive subjects together together we can make changes in care practice to develop a palliative care approach to care for people with dementia and their families

How did we find out if we have made a difference? How did we find out if we have made a difference? Pre course questionnaires Evaluation forms Post it exercise Picture exercise

Evaluation Overall the vast majority of relatives and staff found the training to be beneficial Many of the staff found the comments and views of the relatives to be a useful complement to a professional The programme was excellent and should become a standard for all care homes in the future to give better care and understanding to all

Principles into practice network award 2009 Category : Carer involvement and support The Beyond Barriers Project Alzheimer Scotland has shown commitment to developing services that place the needs, views and rights of service users at their heart. This project was voted by delegates at the 2009 conference as demonstrating best practice in carer involvement and support

Where do we go from here? Palliative Care initiative (2009) We plan to: - Develop and publish the Beyond Barriers work books Provide training for trainers Continue to develop our work with palliative care and dementia

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