Beyond Barriers. Developing a palliative care approach for people with the later stages of dementia...

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

Beyond Barriers

For further information

please contact :-

Jhenderson@alzscot.org