Alzheimer Scotland Palliative Care Initiative (2009)

This exciting year long initiative is a partnership project between Alzheimer Scotland, Dumfries and Galloway NHS and The University of the West of Scotland and is funded by the Scottish Government.

It builds on Alzheimer Scotland’s previous work in raising the profile and understanding of the need of people with dementia in the later stages of the illness and their relatives. Firstly through the Lighting up Lives report (2004 -2006) which identified the unmet palliative care needs of people in this stages of the illness living in Dumfries and Galloway and secondly through the Beyond Barriers Project (2007- 2009). The aim of this project was to develop current care practice by supporting staff and relatives to meet the palliative care needs of people in the later stages of dementia living in care homes and recognised that this process maybe protracted and last up to two years. 

 Outcomes of this work have been: -

• the development of workbooks linked to knowledge evidence requirements for Health and Social Care SVQ
• a greater understanding or the  importance of involving relatives in such a programme of education
• the importance of providing supported learning to enable change in practice to occur

The aim of the Alzheimer Scotland Palliative Care Initiative will be to develop knowledge and understanding of a palliative care approach to care for people with dementia and their families to a much wider audience including health care and social service professionals.

 The Review of palliative care services in Scotland August 2008 identified that ‘specialist palliative care should be available to patients with complex needs while general provision should be available to all.’ One of the key messages from the report identified ‘that most palliative care is provided by generalist staff in hospitals, care homes or in-patient’s own homes. But palliative care needs are not always recognised or well supported. Generalists need increased skills, confidence and support from specialists to improve the palliative care they give to patients and their families’

The Initiative will therefore: -

• develop the workbooks to meet the wider needs of health and social care professionals
• gain SVQ accreditation for the workbooks
• publish the workbooks for as wide a distribution as possible
• create a data base of staff providing education within NHS and Social Care settings
• provide a free one-day course for up to 60 trainers, to provide them with the knowledge and skills to deliver the course and a further free day of supported learning.
• following a small pilot phase The courses will be rolled out throughout Scotland and will be delivered by experienced members of the Alzheimer Scotland Learning Development team
• there will also be the opportunity for the trainers to participate in an Action Learning Set this will be optional as there will be a cost involved.

The University of the West of Scotland will externally evaluate the Initiative.

Jenny Henderson

Communication

I want to thank you for listening.
You see, you are words.
Words can make or break you.
Sometimes people don’t listen,
They give you words back,
And they’re all broken, patched up.

But will you permit me
   to say that you have
the stillness of silence,
That listens, and lasts.

This poem was written by a person with dementia as a result of a workshop run by John Killick, poet, writer and broadcaster who has been a writer in residence with people with dementia. 

John, together with Kate Allan, a clinical psychologist who has worked in the dementia field for over ten years, ran a one-day workshop for Faith in Older People in January this year. 

The Workshop, which was attended by 25 people, set out to explore the role of communication in underpinning the provision of care for the person with dementia, as well as its importance for the personhood and wellbeing of all concerned.  Participants were invited to consider many aspects of communication including language, non-verbal channels, creativity and humour and gained many ideas for new ways of connecting with persons with dementia.

They will be running the same workshop in Stirling on 21st April and in Glasgow on 2nd June.

The response to the workshop was overwhelmingly positive:

“I found this very refreshing in approach – full of encouragement, positivity and passion for the subject.  It was rewarding on both a personal and professional level.” 
“The workshop more than fulfilled my expectations – it raised issues that really matter about the essence of being.”

Visit Kate and John’s website at www.dementiapositive.co.uk

Harvest Conference - Celebrating in Inverness

Building on a very successful conference in October 2008 on the theme of Old Age: Wasteland or Harvest Field Faith in Older People responded to requests to enable people from the more remote parts of northern Scotland to participate in discussion and in meeting our aim of working on a wider geographical basis..

Even though we held the conference in May the harvest theme seemed to resonate with our participants! We were delighted to welcome over 50 delegates to the first conference held in Inverness. We had a very pleasant venue, using the Bishops Palace which is part of the Eden Court developments.

Our morning speaker Gaynor Hammond……………… inspired us about the use of memory boxes and the importance of these as part of transitions. She was speaking particularly about movement into residential care but I felt that she could just as well have spoken about any kind of transition. I think we all felt we wanted to create our own memory boxes as part of our life’s journey whatever age or stage we were at.

We divided into group work sessions which covered a variety of topics including the spiritual tasks of ageing, worship and dementia and voicing the spiritual. The expected rain didn’t materialise so that we could get to the different break out venues without getting soaked. Professor John Starr helped us place individual ageing in the context of the wider demography, economic, health and social policy. He gave us a very engaging talk and helped us understand the wider context in which we experience ageing.

The delegates all felt by the finish of the conference that this should be the beginning of something important rather than the end of the conference.   We hope that we can build on this feeling and aspiration. During the day we talked a lot about the importance of relationships and how relationships are made and sustained through story telling and listening. It is our relationships with each other that help us understand ourselves and our own ageing. Our gift to each other is to offer ourselves in friendship and to faithfully try to understand and celebrate ageing. We hope that we can take our learning from the conference back into our faith communities and build on a very successful and encouraging day. We will be setting up some further North of Scotland events which will help to do this.

We again appreciate the financial support from ACTS and the Scottish Episcopal Church in Society Committee 

The Golden Rule

In these days of constant change the fact that so many people have such a depth and length of life experience is to be cherished.  It is a huge asset. 

The Golden Rule should inform all our dealings with the oldest members of our society.  But while all of us have been younger than we are now, none of us have been older, and so do not know from our own experience how they would like to be treated, we can only guess.  So we must ask!

We must consult the older people in our families and neighbourhoods, our hospitals, care homes and churches.  When dealing with older people with dementia we must make the greatest efforts to find out what lifts their spirits and avoid what crushes them – the “do as you would be done by” Golden Rule in this context involves a leap of imagination and a firm commitment to compassionate care.                     

Mary Moffett