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

Message from the Ambulance Service

We all carry our mobile phones with names & numbers stored in its memory. If we were to be involved in an accident or were taken ill, the people attending us would have our mobile phone but wouldn't know who to call. Yes, there are hundreds of numbers stored but which one is thecontact person in case of an emergency? Hence this 'ICE' (In Case of Emergency) Campaign.

The concept of 'ICE' is catching on quickly. It is a method of contact during emergency situations. As mobile phones are carried by the majority of the population, all you need to do is store the number of a contact person or persons who should be contacted during emergency under the name 'ICE' (In Case Of Emergency). The idea was thought up by a paramedic who found that when he went to the scenes of accidents there were always mobile phones with patients but they didn't know which number to call.

He therefore thought that it would be a good idea if there was a nationally recognised name for this purpose.

In an emergency situation, Emergency Service personnel and hospital Staff
would be able to quickly contact the right person by simply dialling the number you have stored as 'ICE'.

For more than one contact name simply enter ICE1, ICE2 and ICE3 etc.
CHECK BBC NEWS ICE CAMPAIGN - http://news.bbc.co.uk/1/hi/wales/4746789.stm

Grandparents and Mission -  Identifying opportunities for greater effectiveness
Tuesday 19th May 2009 10:30am - 3:15pm at the Wilson Carlile Campus, Sheffield.
A chance to network with other grandparents, share ideas for nurturing the spiritual lives of their children, grandchildren and great grandchildren, hear input on the changing nature of grand parenting in our society, raise important issues for further resourcing, and identify ways in which local churches and their leaders could support grandparents in their congregations. Limited places are available.
£20 conference fee per person will cover all costs of the event including lunch.
 Please make this known to your contacts especially grandparents and pass on to others who may be interested.

M Collyer - Older People Exploring evangelism, spiritual needs and fresh expressions of church among older people.

 If you would like to book a place please return the booking form to Mrs. Claire Dalpra as indicated.
The Sheffield Centre
Wilson Carlile College of Evangelism
Wilson Carlile Campus
Cavendish Street Sheffield
S3 7RZ Tel 0114 272 7451
www.sheffieldcentre.org.uk
Faith Words Action - For latest news follow us at http://twitter.com/churcharmy

Winter 09 Launch of Charter of Rights

EMBARGOED RELEASE: 08:00 THURSDAY 08 OCTOBER 2009
To: News/Politics/Health editors
PHOTOCALL – 12.30PM, GARDEN LOBBY STAIRS, SCOTTISH PARLIAMENT. Photos will also be sent via wire to all major newspapers by 1.30pm.

Bringing dementia rights out of the shadows: the Charter of Rights for People with Dementia and their Carers in Scotland

Today, Irene Oldfather MSP, convenor of the Scottish Parliament’s Cross-Party Group on Alzheimer’s, will announce Scotland’s first Charter of Rights for people with dementia and their carers.  The Group will call for support from all MSPs and the public. The announcement will be made immediately after First Minister’s Questions, in the Garden Lobby of the Scottish Parliament at 12.30pm. Copies of the Charter will be available at this time.

People with dementia and their carers (family members and friends) have the same human rights as everyone else in Scotland.  However, it is widely recognised that, in addition to the impact of the illness, they face cultural, social and economic barriers to fulfilling these. This Charter aims to empower people with dementia, those who support them and the community as a whole to ensure their rights are recognised and respected.

Irene Oldfather MSP, convener of the Cross Party Group on Alzheimer’s, said, “The publication of a Charter of Rights for people with dementia and their carers is long overdue. In recent years numerous reports have demonstrated that levels of care for people with dementia are simply not at a high enough standard. This Charter should be used both as an empowering tool for service users, and also serve as a framework for care homes, hospitals and other organisations when developing services for people with dementia.”

“Publishing the Charter is not the end of a process, but rather a beginning. We want the Scottish Government to put the Charter at the heart of the dementia strategy and send a vital message that all of Scotland wants to bring about culture change about how dementia is perceived, and ensure that there are high quality levels of care and support, from diagnosis through to end of life. “
Henry Simmons, Chief Executive of Alzheimer Scotland, said, “For too long the rights of people with dementia and their carers have been in the shadows. Although they have the same rights as everyone else in Scotland, people with dementia have become disadvantaged, disenfranchised and disowened. We call on as many people as possible to sign up in support of this Charter, which we want to act as both a charter mark for service providers and a key influence on the National Dementia Strategy that’s currently in development.”

 Duncan Wilson, Head of Strategy and Legal at the Scottish Human Rights Commission, said, “This Charter brings some long overdue focus on empowering people with dementia to understand and claim their rights, and will help to increase the ability - and accountability - of those responsible for caring for vulnerable adults.

“The Commission welcomes the efforts of the Cross-Party Group to reflect international human rights standards in their work. Looking ahead, we hope that a wide range of public and private bodies will be encouraged to make human rights part of their day to day work with older people.”

Anonymous quote from a relative of a person with dementia, submitted during the consultation process for the Charter, “My family have been shocked by the treatment some people living with dementia receive.  Things are improving in some areas, but the Scottish Government needs to take a far more serious approach to deal with discrimination towards people who have a life limiting illness.  Dementia strategies are words and we really need to see actions.  Anyone currently supporting someone living with dementia would want to see things improve for other people diagnosed in the future.  Life could and should be much better for people living with dementia and their family and friends.”

You can register your support for the Charter of Rights for people with dementia and their carers at the Alzheimer Scotland Charter site – www.dementiarights.org

ENDS
Members of the Cross Party Group and the Scottish Dementia Working Group (an independent group run by people with dementia) will be in attendance and will be able to speak to the media about the charter.
Contact details:
Kirsty Jardine, Awareness Manager (Alzheimer Scotland), tel 0131 243 1453, 07747 025041, kjardine@alzscot.org

Quotes from other members of the Cross Party Group on Alzheimer’s:

George Kappler, Deputy Director of the Mental Welfare Commission welcomed the launch of the Charter, “our organisation has a legal duty to safeguard the rights of people with dementia and to ensure they are offered equal protection under Scottish law. We wholeheartedly support the aims of this Charter which will help individuals, made vulnerable through the illness, to better understand and access their rights.”

Notes for editors:

• Dementia affects approximately 69,500 people in Scotland. (http://www.alzscot.org/pages/statistics.htm)
• Alzheimer’s disease is the main form of dementia (60% of cases). The second most common is vascular dementia (17%). As yet there is no cure.

Alzheimer Scotland is Scotland’s foremost voluntary organisation working for people with dementia and their carers. It:

• speaks out for the rights and concerns of people with dementia and their carers;
• operates services on over 60 sites throughout Scotland providing practical services such as day, evening and weekend centres, home care and befriending and carers' support services;
• provides the 24 hour national freephone Dementia Helpline (0808 808 3000);
• provides the website  www.alzscot.org;
• supports a network of over 40 carers' support groups;
• provides information to carers, professionals and people with dementia;
• publishes leaflets, booklets, reports and a quarterly newsletter keeping carers and professionals up-to-date
• has a research programme.

More about the Scottish Human Rights Commission can be found at www.scottishhumanrights.com

More about the Cross Party Group on Alzheimer’s can be found at www.scottish.parliament.uk/msp/crossPartyGroups/groups/cpg-alz.htm

Alzheimer Scotland – Action on Dementia is a company limited by guarantee and is recognised as a charity by the Inland Revenue. Registered Office: 22 Drumsheugh Gardens, Edinburgh, EH3 7RN. Registered in Scotland 149069 Scottish Charity No. SC022315

Palliative Care

The Care Commission has recently published a Report on ‘The Quality of Palliative and End of Life are in Care Homes for Adults and Older People’ which is defined as “ensuring a good quality of life for both residents and their families at every stage of a life  limiting illness which can be from diagnosis onwards.  One part of palliative care is care given towards the end of life, which can be the last few months, days and hours of a person’s life.

The palliative care approach is about caring for people as individuals, recognising that they may have needs which are physical, social, psychological, or spiritual, or a combination of these and it is important for this approach to be adopted by anyone in a care setting, including care homes.

FiOP welcomes this report which includes an emphasis on meeting the spiritual needs of older people and their families and we also recognise that many care staff find it difficult to elicit the spiritual care needs of residents or patients. The FiOP courses and events and the DVD that is currently being developed are aimed at providing practical and supportive ways to build the confidence of staff to enable the spiritual needs of those they care for to be met.

Jewish Faith and the Elderly

Judaism is a faith based on action. Jews believe that be performing G-d’s commandments called mitzvot, they connect to the Divine and bring holiness into the world. These rituals cover all areas of life from the intimate to the political but the main issues Judaism impacts on in daily life concern food and time. Jews have a series of food laws called Kashrut, which in brief concern not eating certain animals, eating meat that has been slaughtered and prepared in a certain way and separating milk and meat. Keeping kosher, as it is called, is of importance to many Jews though levels of observance differ. The same is true for issues surrounding time, the Sabbath and the Festivals. Judaism sanctifies periods of time such as the Sabbath or Shabbat, that goes from Friday evening to Saturday night. It also has many festivals with their different customs and rituals, often revolving around food. Again, while levels of observance may differ, these special times are important in the lives of most Jews.

This becomes especially true when people become older. Practices that were part of someone’s childhood, which may have been discarded in their youth, often assume increasing importance as people age and contemplate their own mortality.  Elderly Jews who may have not particularly observant for much of their lives, may want to make up for it in their old age. Freed from the pressures of work and often family life, they reconnect to the Jewish community and may become more observant of the Sabbath or seek to keep Kosher to a higher degree. For those who have been relatively observant all their lives, it often becomes important to be able to continue this observance into their later years. This is especially true as their circumstances change and they may be forced to leave their own homes to enter care. Here Jewish observance becomes a link to their past life, even as it sometimes becomes more difficult in the context of non-Jewish institutions. In all these cases the Jewish community seeks to help older people to continue to maintain a Jewish lifestyle to the extent they wish to do so, and thus make their final years spiritually and culturally rewarding.

News Malcolm NZ

One of our trustees, the Reverend Malcolm Goldsmith is a keynote speaker at the International Conference in September 2009 This will be held in Auckland, New Zealand hosted by The Selwyn Centre for Ageing and Spirituality

The conference builds on evidence-based models of medical care which have paved the way for people to live much longer, healthier, physical lives.  But has the quality of spiritual guidance and care offered to older people kept pace?  Are older people's spiritual needs being adequately met in healthcare and social systems around the world?

The issues of ageing and spirituality will be discussed against the backdrop of gender, culture and new models of care. This conference will consider the positive possibilities of ageing well, and flourishing, despite difficulties.

It will bring together researchers, aged care practitioners and those with an interest in helping older people find meaning and fulfillment towards the end of their lives.

Themes include:

• policy formation and influencing political thinking
• spiritual models of care for the baby boomer generation
• indigenous issues and cultural case studies
• end of life issues
• pastoral care and ministry  
• funding and spiritual models of care

http://www.selwyncare.org.nz/?t=233

We would welcome feedback on the themes of this conference as we are in the process of planning a similar event in Scotland next year.