Eden Alternative UK & Ireland

The following article was written by Dr Al Power, an Eden Mentor and Educator and the author of Dementia Beyond Drugs, published in 2010 by Health Profressions Press. The article and the Alzheimer's Society Newsletter cited deserve a wider readership. 

"I recently had the pleasure of visiting with an Elder who experiences frequent distress in the late afternoon. I was immediately struck by the connection between her anxiety and desire to leave with a lot of employee transition activity at specific times of the day. This leads me to suggest a larger discussion about the whole concept of what we call "sundowning.”

More and more, I have come to see the term "sundowning" as a classic example of what Dr. Tom Kitwood called positioning, meaning that we blame the distress on the disease, rather than looking for other factors.

Consider this scenario: Whenever I teach a 3-day Certified Eden Associate Training, I can guarantee that around 2-3:00 PM, some of the people in the class will get up, walk around a bit, or stand in the back for a while. They are usually nurses and CNAs. Are they sundowning? Agitated? Of course not.

Most nurses and CNAs who work during the day work from 6 or 7:00 AM until 2:30 or 3:30. They are on their feet a lot. But when I train them, they end up experiencing an 8 to 5 workday where they sit nearly all day. I force people into a rhythm that is different from their usual pattern, and by mid-afternoon, their bodies start to rebel.

I suppose I could shift the class to 6:00 a.m. to 3:00 p.m. and create more opportunities for walking around. But instead, I schedule it around my own work needs, and I usually get so caught up in the process, that I don't think to get people moving around enough. Does any of this sound familiar? Welcome to long-term care.

I am going to suggest an alternate idea, which many of you may find a bit challenging to accept at first: Dementia does not cause "sundowning.” We do! Dementia simply "fans the flames" by making people (1) more sensitive to their environment, (2) more easily fatigued, and (3) less able to cope with having their biorhythms shifted into artificial schedules that better suit our nursing home operations.

This is a small distinction, but a very important one. Here's why: We cannot cure dementia, but we can cure almost all cases of "sundowning" without medication, by shifting operational patterns and staff behavior.

Still not convinced? By happy coincidence, my friend Ann Wyatt of the NYC Alzheimer's Association just sent me their latest newsletter (http://www.alznyc.org/nyc/advancingcare/janfeb2012.asp). This issue tells the story of how Beatitudes, a care home in Phoenix, shifted operations and staff behavior, and created a "rest as needed" policy on their dementia-specific living areas. They have been virtually "sundown-free" for 14 years and have eliminated almost all of their psychotropic medications as well!

I would encourage you to share this information with your teams and begin to look at how we might be able to create a more natural experience that honors the individual rhythms of our Elders. This is powerful stuff, and a great example of how culture change improves not only quality of life, but clinical care as well."

The blog started last year as a way of keeping an ‘on line’ diary – I take photos during the day at the home and load them onto my laptop when I get home.  I used to keep a computer log of the events of the day but it was very time consuming and I didn’t add photos so it was not very exciting.

One day while loading the photos onto Picasa (it’s a free service from Google for keeping photo albums stored on line) I noticed a button called ‘blog it’ and pressed it out of curiosity – and the Mount Ephraim blog was born.

I just followed the simple set up instructions and after a couple of attempts I had created the first Mount Ephraim blog entry.  I sent a link to a couple of relatives of our residents for their feedback – I wanted to check that they didn’t mind their loved ones going ‘live ‘on the ‘world wide web’ – but they were delighted and very encouraging – giving me a few useful tips to make it more user friendly.

I checked with Karen and head office, no objections, so from then on I strived to update the blog each day when I got home, by loading the photos onto Picasa and then pressing blog – it is so easy and quick but the benefits are huge.  Relatives can access the blog from wherever they are in the world and keep up to date with what’s going on back at Mount Ephraim House.  Residents like to see themselves featured on the blog and staff also check it regularly to see how everyone is doing.  Its useful as a record to show people, whether they are care professionals, prospective new residents or staff from other homes, what we do at Mount Ephraim House. We are proud to share our stories with them. 

Tuesday, 18 January 2011 patty is checking the blog.. Patty was answering her emails today; including one from Canada - her niece checks the blog regularly, so Patty decided to have a look to see what she has been up to lately!! Hollie, one of the new carers at MEH, is reading along with Patty... Posted by marigold at 6:25 PM Email ThisBlogThis!Share to TwitterShare to Facebook

We get a lot of feedback from relatives and friends, and it helps initiate conversations when they meet up or phone.

I have used blogspot – (there are many other companies to use) it is free and very easy to use.  You can nominate other people as ‘authors’ or contributors to the blog so that you can share the responsibility of keeping it up to date.

From time to time, I change the format, the backgrounds or colours and styles, just to keep it more interesting and fun – all done with the touch of a button.

I have also started a Facebook page for Mount Ephraim House but its not ‘live’ at the moment – not really sure if its appropriate for this situation… likewise with twitter, don’t think its appropriate at the moment but I’m sure If any of the residents wanted their own Facebook page it could be arranged !!

Marilyn Bridger (meh@greensleeves.org.uk)

This blog is extracted from the Changing Aging blogg of Al Power, Eden Alternative Educator and Mentor.

Creative Approaches in Dementia Care, has been released by Palgrave Macmillan. Edited by Hilary Lee (President of Dementia Care Australia) and Trevor Adams (University of Surrey, U.K.), this book contains a dozen chapters describing the use of art, music, laughter, storytelling, end-of-life engagement and several other avenues to enhance the well-being of people living with dementia.

Foreword 

‘There is no use trying,’ said Alice. ‘One can’t believe impossible things.’ ‘I daresay you haven’t had much practice,’ said the Queen. ‘When I was your age, I always did it for half an hour a day. Why, sometimes I’ve believed as many as six impossible things before breakfast.’ — Lewis Carroll, Through the Looking Glass

What is creativity? Photographer Dewitt Jones (1999) defines it as ‘a moment – a moment where we look at the ordinary, but see the extraordinary.’ This simple definition describes what is so important about this book.    

Our traditional view of dementia is one that focuses on loss – loss of nerve cells, memory and impairments in various types of cognition. We constantly measure people living with dementia by what they cannot do. Standardized assessments like the Folstein Mini-Mental Status Exam are a litany of discrete tasks to be performed: Can you spell ‘world’ backwards? Can you remember three objects after five minutes? Can you copy a figure of two intersecting pentagons?

In performing these assessments, we reduce the person to the sum of those discrete tasks. This distracts us from the fact that many complex and integrative skills continue to exist, even in advanced forms of the illness. Our focus on disease and deficits blinds us to seeing the whole person. This biased view – referred to by Kitwood (1997) as ‘positioning’ – leads us to respond to expressions of distress or need by blaming neuropathology, rather than looking into the heart of the person in our care.

In our biomedical approach to dementia, we have created care environments around the needs of well care-partners, rather than those of the person living with dementia. In explaining the fallacy of this approach, I often ask audiences to think of a man whose legs have become paralysed, who now needs a wheelchair for mobility. Through tireless advocacy, new laws have been enacted requiring building owners to construct ramps and other types of disability access, in order to enable such a person to continue to succeed in our world.

But we don’t build ‘ramps’ for people with dementia. We create environments where they can no longer succeed, and blame the resultant distress on their ‘disease’. Imagine pushing the man I just described out of his wheelchair and exhorting him to ‘walk as we do’. Next, imagine that after he falls to the ground and becomes angry with us, we diagnose a ‘behaviour problem’ and give him a sedating medication. It sounds ludicrous, but we do this every day to people who live with dementia, in all care environments around the world.

In crafting a new ‘experiential’ view of dementia that enables engagement and growth, I use a simple definition: Dementia is ‘a shift in the person’s perception of the world’, (Power, 2010). By moving our focus from disease to shifting experience, it is possible to see the whole person and conceive of new approaches to care that reflect and capitalize upon how that individual sees the world.

Once we have re-framed our view of dementia and shifted our focus from disability to possibility, it is easier to see the intersection of creativity with dementia. In fact, Jones’ definition of creativity seems to embrace the very core experience of the person living with dementia: looking at the ordinary, but seeing the extraordinary. Instead of simply viewing such a shift as evidence of confused pathology, is it possible to channel this perspective through creative expression and enhance one’s well-being as a result? This book answers that question with a resounding ‘Yes!’

For Al's complete blog click here

Ever heard the expression “in the middle of nowhere” or “blink and you miss it” - allow me to share the most amazing experience I had visiting two such places this week. It is no secret that the field of ageing has many challenges – not the least being a surplus of elders matched by the ever decreasing support which the various facilities receive. Living in town and being involved with an organization that runs an efficient service , it was with much scepticism (despite being assured that these were oases of care in deep rural KZN) that I agreed to visit 2 out of town homes to deliver a gift of 2 blow up kiddies’ pools for the residents (what were the donors thinking ?… – little kiddies pools so that the old folk would be able to dip their feet in water – just for fun ? not because it was nail cutting time, health and hygiene requirements or even for a visit from an out of towner. Just for fun…) Nice thought perhaps – but to journey 4 hours to deliver a relatively cheap item seemed somewhat over the top to me. Never mind, I had said I would do it, and in any case perhaps I could share my expertise and advise these “lesser” homes in what they could do to improve themselves…

What followed over the next day and a half can only be described as “light bulb” moments - as I came face to face with spontaneity, love in action, and the servant leaders who serve their aged with such passion and dignity, with good humour, fun, and an eye for the opportunity of making a difference in lives which have been long , difficult but mostly well lived. What a pity we never think to ask these people about themselves, their lives, their history, their interests – why is it that we feel we can do so much for them?  Another light bulb moment came when I sat down at the end of 2 days and reflected on what these people had done for me.

Driving through the gate at St. Antonine’s on a cold June morning we were met by the not inconsiderable warmth of Sister Lucia Raseipone, the Director, and Charles Ngubane the Chairman of the Home.    Here, in the heart of nothingness are these warm, vibrant people running a Home for 58 displaced, abandoned, mentally challenged and abused elders – ranging in ages from 65 to 90.   Passionate about their Home and the residents they serve, they are so obviously happy doing what they do, the residents are well cared for, relaxed and happy. A few raised eyebrows and some curious onlookers watched as Charles pumped up the kiddies’3-tier pool (this was a real luxury as water is at a premium – they struggle with their water pumps being stolen continually, and they of necessity collect water in buckets from the rain tank).   Two buckets of warm water later and we were in business!   Off came the shoes, some socks, of 4 old Khele’s – trouser legs rolled up and there we were in Thekwini – “dis lekker by die see”. The laughter and obvious enjoyment resulted in a circle of old, gnarled feet – all shapes and sizes, toes that had taken on new directions and nails that could be highlighted for the next edition of Ripley’s “Stranger than Fact”.   Gogo’s, not to be outdone were soon in the pool – modesty set aside as skirts were raised above the knees to enjoy this new experience. There were interesting asides as to the youthful looking legs belonging to those who could afford glycerine not other creams – these Gogo’s still have life in them!   And so it was that I sat, feet in water chatting to these elders who told me of their lives – jobs in Durban, ears cut off in faction fighting in Lamontville, a foot hacked off and reattached over a period of 4 years of surgery, tattoos on chests and arms done by candlelight with needles and ink – I was charmed by the warmth, honesty and sharing of this group of elders. I was humbled by the stories of elders who raised children against all odds amidst great hardship - only to be lost or forgotten by them in later years, of children who had succeeded and forgotten their roots and the parents who had struggled to provide for them.   This pool was a well of sharing – sharing from the heart of love, fears, happy times, of lost love and just simply enjoying the warmth of the water on old bones – an experience that was completely new.

And so it was that our hearts were touched through that which money cannot buy – the warmth and caring that comes from those who have a vocation not a job. St Antonine’s is a small complex of well run, clean, odourless buildings, housing staff and residents in a compassionate and caring environment, where food is simple yet good, where running water is a constant battle due to pumps being stolen, where borehole water is plentiful but so full of lime that a purifier is needed to enable its useage, where help is through each person reaching out to assist another. Emseni has different challenges – old buildings spread out makes control and nursing difficult. A larger supply of elders than facilities and funds allow, residents who are poverty stricken and often sick when they arrive.   And yet, each person is treated so lovingly by Jabu Nkabinde, each person is greeted by name and respected for who he/she is.   The grounds are fenced and all have access to the grounds – dementia elders are lovingly directed by others and are able to wander around the grounds quite safely, a degree of love and tolerance was evidenced that I have yet to see at sophisticated homes.

Susan Musgrave

The £50,000 café scheme, the first of its kind in Sandwell, was launched in January by Accord Housing Association in partnership with Sandwell Council and a host of other local organisations.

With over 3,200 people in the borough living with dementia, the cafes offer people with the condition and their carers a friendly and comfortable place to socialise and go for informal help and support.   

The free drop-in sessions, which are held for two hours per month in Oldbury, Smethwick, West Bromwich, Rowley Regis, Tipton and Wednesbury, take place at different venues and times, including at evenings.

A specially-trained dementia coordinator is available at every café as well as guest speakers, activities and free refreshments. 

Nicole Beeching, Health and Wellbeing Manager at Accord Housing Association, said: “It’s important to remember that dementia can make people with the condition and their carers feel isolated and alone, so these cafes are a real life-line.

“We have had a great response to the café so far, with some lovely comments from those that have attended. With another three cafes taking place this month and many more after that, we’re looking forward to welcoming even more people along to these special sessions.”

Dementia cafés were originally pioneered by Dr Bère Miesen in the Netherlands in 1997. A clinical psychologist, he wanted to create a setting where people could openly talk about the condition and get help and support.

(Michelle Barker michelleb@accordha.org.uk)

Honeyfield and Court Regis began their Eden journey two years ago and have both made significant progress in improving the lives of their residents.

Honeyfield’s implementation began with Manager Julie Ayres appointing two new activity coordinators with enthusiasm and ideas but no previous experience in care. This has enabled Honeyfield to provide an activity programme covering seven days. A measure of their success is the fact that a major selling point for the home is its busy atmosphere. Inclusion of domestic and kitchen staff in the training programme has made it easier to incorporate a whole range of domestic tasks into the daily lives of the residents. The garden, which was previously an attractive feature of the home, but mostly for looking at, is now a ‘working’ garden with residents choosing and planting the shrubs and flowers, the inclusion of a washing line and also a bus stop.

                 
                                    Residents and staff of Honeyfield

In common with an increasing number of homes Honeyfield has hatched chicken’s eggs, raised a small number of chicks. Residents now collect fresh eggs for their breakfast. 

Court Regis is a single level care home dating from the 50s. Although dated it has the advantage of extensive gardens which can be access through a number of exits enabling the home to manage with a minimum of locked doors. A major feature of this home is the effort that they have made to build relationships with the local community. Apart from visits from local schools, including poppy sales by the local primary school, the home has close links with a hairdresser and a café. Although Court Regis has a visiting hairdresser, the residents than can do so enjoy the opportunity to go out to have their hair done. Similarly, a coffee always tastes better in a café than in the lounge. As the relationships have developed both small businesses have become involved in the home’s fundraising efforts for a minibus.

A notable Court Regis resident is Bernadette who makes it her job to look after new residents, making sure that they know their way around and comforting them when necessary. Bernadette is in her eighties and living with dementia.

 
                                     Emma Hodges, June, Tracey Creasey                       

 Common to both homes was the atmosphere or calm unhurried activity and the obvious rapport between all staff, not just carers, and the residents. Our congratulations go to Julie Ayres and her staff at Honeyfield and Emma Hodges and her staff from Court Regis.(jayres@avantecaresupport.org.uk ehodges@avantecaresupport.org.uk)

 

The staff team at Lyle House, a Richmond upon Thames Churches Housing Trust care home commenced a programme introducing the Eden Alternative within the home in April 2011. The home manager and 12 members of staff attended a 3 day course and are enthusiastic about the philosophy of care and fostering the concept within the home. 

Part of the Eden concept is to encourage staff to be spontaneous in the provision of care and activities with residents. The photo attached is an example of this. It shows how staff member Ferdinand Bernal bought his iPad into work so that a resident from his unit with dementia resulting in short term memory loss could look at news stories and images from her native Hungary. The resident has lived in England for many years but because she has short term memory loss, her first language, Hungarian, is now the dominant language. Using the iPad Ferdinand was able to access news and other Hungarian websites easing her feelings of isolation. Other residents have since benefited from the iPad because it is also a visual aid residents like to sit, view and listen to a wide variety of stories.

 The home will be looking to raise funds to purchase 2 iPads for the residents use throughout the home.                                   

Sharon Simpson (ssimpson@rutcht.org.uk)

At the Eden Denmark networking meeting earlier this month Birkelund became the first Registered home on the Eden Denmark Register. The Eden Denmark Register joins similar Registers in the USA and Canada, Australia and New Zealand and the United Kingdom. Further evidence of the flexibility of the Eden Alternative care philosophy to adapt to many different cultural environments.

 

Birkelund has been implementing the Eden Alternative since 2005/2006 and was one of the key participants in a large scale implementation project that brought the philosophy to 3 municipalities. The Birkelund development has been led from the front by the Manager Käthe Rasmussen, together with the ‘Eden ambassador’ Lisbeth Bickmann and nurse Birthe Priske – together they call them selves ‘The Trifolium’. Eden has been adopted enthusiastically by residents, staff and family members. Birkelund have also played a key role in developing the Danish Eden Alternative material from the original American.

 

 

National Eden Coordinator Aase Porsmose, Lisbeth Bickmann (Eden Ambassador), Birthe Priske (Nurse), Manager and Eden mentor in DK, Käthe Rasmussen, National Eden Coordinator Karin Dahl and Danish Eden Mentor Anne Juul Sørensen, Head Manager in the Elder area in Odder Municipality.

In the early 1990's Dr Bill Thomas first became aware that Loneliness, Helplessness and Boredom were three plagues that were responsible for most of the suffering in the nursing home in which he worked. He realised than in some cases it was this that was killing some of his residents, rather than the medical conditions that might have been the reason for their admission into the nursing home. From these observations Bill Thomas and his wife Jude Meyer-Thomas developed the Eden Alternative, a culture change movement currently being implemented across the world.

Twenty years later Dr Steven Cole of the University of California, Los Angeles may have discovered a physiological foundation for the original observations of Bill Thomas. Broadly speaking he has discovered differences in the immune response of lonely people compared with people with a more active social life. Ultimately this leads to a greater risk of developing illnesses associated with chronic inflammation, such as heart disease and some cancers. These results have been published last year in the Public Library of Science, Medicine and reported in The Economist, February 26 2011.

If we needed another reason for eliminating the three plagues from nursing homes, here it is!

On 15^th December 2010The Briars care home on the Isle of Wight, one of the Greensleeves Homes Trust group, became the first in the group to be registered on the Eden Alternative UK Register of homes as being well on their Eden journey of culture change .

The 32 residents and staff at the Briars began introducing the philosophy of the Eden Alternative in April 2008 under the leadership of Manager Fiona O’Regan, Activity Coordinator Margaret Williams and Senior Carer Patrick Alexander and has been hailed as a shining example of person centred care in practice throughout the Greensleeves group.



                                Margaret Willams, Patrick Alexander, Fiona O'Regan