beyond barriers. developing a palliative care approach for people with the later stages of dementia...
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Beyond Barriers
Beyond Barriers
Developing a palliative care approach for people with the
later stages of dementiaJenny Henderson
The Beyond Barriers project The Beyond Barriers project
2007 -20092007 -2009
A partnership between
Alzheimer Scotland
Care Commission
Dementia Services Development Centre Stirling University
Beyond Barriers ProjectBeyond Barriers Project
Dementia and Palliative Care
Education Support sessions
Communication
Rollout PhaseRollout Phase
January 2008 to March 2009
A total of 10 course + a pilot course
What have we achieved?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 The challenges of involving relatives…relatives…
Finding relatives
Unsure of the content of the course
Staff insecurities
The rewards of relative The rewards of relative involvementinvolvement
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 The challenges of involving care homesinvolving care homes
Communication communication communication !
Difficulties in releasing staff for such an in depth course
Geographical constraints
The Rewards… enabling The Rewards… enabling change in practicechange in practice
Spirituality Activities Communication Relatives needs Management of pain End of life care Planning care
The challenges for facilitatorsThe challenges for facilitators
communication …communication! working with staff and relatives
together tackling sensitive topics group dynamicsBut also the rewards…
‘I’m going to start by saying ‘God bless’ when I leave him’
‘She used to enjoy listening to music but I hadn’t 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 didn’t think she would hear or understand but it definitely helps to calm her down’
Staff comments………
‘I didn’t 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 What Beyond Barriers has given usgiven us
Tears Frustration Anger Sadness
also…also…
Laughter Fun Happiness Enthusiasm Commitment Belief
Most of all we have Most of all we have shownshown :-:-
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 How did we find out if we have made a difference?have made a difference?
Pre course questionnaires Evaluation forms Post it exercise Picture exercise
EvaluationEvaluation
‘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 Principles into practice network award 2009network 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?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
