How do aged care organisations balance their duty of care with the needs of people with dementia to continue to explore, understand their environment and remain as independent as possible? Rae Blackledge explains the creative strategies used at Elizabeth Lodge, in Sydney’s Kings Cross, to ‘bring the outside in’ and also enable residents to leave the home for walks and outings
Elizabeth Lodge is a 10-storey care home in Kings Cross, in the heart of Sydney, operated by Anglicare. There are 116 people living life at ‘The Lodge’. Residents are accommodated over seven floors, with one floor dedicated to people with advanced dementia. There are currently 14 people in this unit, but more than 70% of the other residents also have a diagnosis of dementia.
The home has four small outdoor spaces which don’t really offer opportunities for residents to walk or pace. There are two dedicated social spaces on Level 2 with a large communal dining room on the first floor. The building clearly has limitations, but we have worked creatively with what we have, looking to create an enabling environment for all who live here.
The dementia unit is located on Level 3. It is a secure unit with no outside access for residents. So how to ensure residents living here do not feel restricted, do not seek to leave the home and are respected and happy? Our solution was to create The Club. Using Montessori principles we dedicated one of the social spaces on Level 2 to The Club, where a range of different and very individualised and specialised activities are on hand for residents to choose and participate in. There are activities for people alone or in groups of two or three. There is flower arranging, reading, ironing, sweeping, painting, and peeling vegetables among almost 20 other activities.
The area has an adjoining balcony which gets the morning sun. On the balcony are planter boxes full of growing plants. From the balcony you can view the road and the busy activity on the street. In a small sunroom close to this, music plays and there are also iPads and headphones available for those who want to sit and enjoy listening to music of their choice.
So what is The Club? What are we trying to achieve by calling it a club?
Residents living in the dementia unit on Level 3 are encouraged in the morning to get dressed, the women to grab their handbags, take a hat or scarf – depending on the weather – from the hat stand near the door and head to The Club. The conversation is all about ‘going out’ and ‘going to The Club’. Everyone travels down in the lift to Level 2 and on ‘arrival’ are welcomed to The Club. Residents, all with a name tag, greet each other as they are introduced each day and care staff and volunteers assist them to walk to the balcony, check out the weather and have a cup of tea and a chat in the sun before being encouraged to select an activity of choice.
This is highly ritualised to promote the idea of ‘going out’ and of being special. Similarly, the end of the morning outing two hours later sees a ritual of residents and staff walking to the balcony again, having a final chat outside, and staff thanking residents for attending The Club and saying they hope to see them tomorrow.
Residents frequently report to families they ‘went out’ in the morning; often they cannot recall where, but the important thing is they recall with happiness that they went out. We have provided an experience of going out without residents having to leave the building. The Club runs five days a week.
Walk N Talk
Because we understand the need for residents in our home to get out and about, we created Walk N Talk. Walk N Talk runs seven days a week, seven hours a day. A staff member is assigned to accompany residents outside for a walk. Sometimes residents go alone, sometimes in small groups of up to three people. The staff member wears a bright orange t-shirt and is clearly identifiable to staff and residents.
The walks themselves are as long as residents want. Given our location, there is a busy city life on our doorstep, so residents often just want to go to the coffee shop at the end of the road, sometimes for a walk to the library and sometimes a walk to the park around the corner. Wheelchairs are perfectly acceptable transport for those who need it.
Residents from the dementia unit are all invited for a weekly walk, but some choose to go daily. A group of three residents without dementia meet every Monday at 9.30am and go out for their walk and have coffee. They like the idea of a staff member coming with them “in case” something happens.
However, most of our residents do have dementia and are given a time for their walk. They know where the waiting area is and it is clearly signed and also has a large clock to make sure people don’t find themselves sitting aimlessly if it’s not time to walk.
Walk N Talk provides an opportunity for residents to be active and enjoy the city they live in, in a way that is safe and meaningful, as they continue to build loving relationships both with other residents and the staff accompanying them.
Elizabeth Lodge owns three GPS watches which are regularly used by several residents, all with a diagnosis of dementia. Residents who use the watches must still have good road sense and the ability to understand the simple instruction of answering the phone. Further, this does require the support of family.
The GPS watch is linked to an iPhone which is kept at Elizabeth Lodge. As residents go outside, the iPhone is regularly updated to see where they are travelling. The watch is also a phone which staff can ring and it answers automatically. This can be used to guide the resident to return to the home, or give other instructions if needed. The watch also has an alarm which can be set to the ideal time of return, and this has been very successful.
Of course, the GPS watch does not prevent residents from travelling near or far, but it does provide the security of staff always knowing where the person is going and if they may be in trouble. The GPS watch has a red panic button which the resident can push. This activates the phone at Elizabeth Lodge so there is immediate communication between resident and staff. Residents have travelled far afield with it, but we have always been able to locate them and bring them safely home.
Clearly the GPS watch was the most challenging thing for us to introduce. Families were often the easy part. They were clearly delighted that their relative could still go out and would always be able to be located.
Staff were a little trickier to convince because they had to not only trust the technology itself, but also accept that residents really did have a right to go outside the home as long as we did our very best to keep them safe. Staff would ask “but what if they went to Melbourne?” Our reply was “well, we would know they were in Melbourne!”
The first time we tried it, when David, a resident, went out with a GPS watch, all the staff (including me) were nervous. I think I checked the phone every couple of minutes to see where he was. He was walking around the block and staff kept asking “is he back?”, “is he back?”. They were really worried. Eventually, when David returned home, he was greeted with cheers and handshakes – the technology had worked, our fears were unfounded and David felt great having been enabled to do what he had done for the past 50 years of his life – go for a morning walk. We have since started using a shoe GPS as well.
Care and risk can co-exist
The idea of knowing where someone is and the dignity that allows them in terms of maintaining their independence had to be given the importance it deserved, rather than us being driven by fear regarding our obligations to provide safety, especially when providing that safety meant preventing a resident from leaving the home. Aged care comes with an inherent bias towards safety, but without the dignity of risk the so-called safety we provide can actually be crippling.
We have worked very hard at Elizabeth Lodge to promote the idea that care and risk can co-exist. It’s all about knowing each person and what works for them.
Risk enablement: resources and further reading
Enablement in Dementia is a tool that includes information to support practitioners to take a positive risk-taking approach to decision-making with people with dementia – including 10 questions to support positive risk assessments. Freely available to download at: http://bit.ly/2mgRejL
Risk Enablement: Frontline Briefing (2016) discusses risk enablement, identifies examples of good practice and provides useful tools and methods for working effectively with risk. It’s accompanied by a reference chart Risk Enablement (CHART): Frontline Briefing which provides an outline of some of the key definitions and considerations in risk enablement. Available at: http://bit.ly/2mgIl9D
Both resources are produced by the Research in Practice for Adults program of The Dartington Hall Trust, in the UK.
‘Nothing Ventured, Nothing Gained’: Risk Guidance for People with Dementia (2010), by Professor Jill Manthorpe and Jo Moriarty, King’s College London, for the Department of Health, UK. Provides guidance on best practice in assessing, managing and enabling risk for people living with dementia. It is based on evidence and person-centred practice. Available at: http://bit.ly/2mRcj5A
How Can ‘Positive Risk-taking’ Help Build Dementia-Driendly Communities? (2014), by Steve Morgan and Toby Williamson for the Joseph Rowntree Foundation, York. Available at: http://bit.ly/2lXiKA9
There is currently no national Australian resource on risk enablement in aged or dementia care. However, while the resources above were produced for UK practitioners, the general principles are universal and could apply in any risk management setting. Be mindful that the resources are written for people with dementia and so do not address all the residents who live in aged care facilities. The other factor to consider is that the laws, both from legislation and court cases, are not the same as in Australia.
The following publications are specific to Australia:
Policy and Practices Updates: Impediments to Applying the ‘Dignity of Risk’ Principle in Residential Aged Care Services, by Joseph Ibrahim and Marie-Clair Davis. Australasian Journal on Ageing 32(3) 2013 188-193. Freely available at: http://onlinelibrary.wiley.com/doi/10.1111/ajag.12014/full
Residential Aged Care Communique 6(3) 2011. Risk, Rights and Responsibility. Published by The Department of Forensic Medicine, Monash University. Freely available at: http://www.vifmcommuniques.org/
Monash University Professor Joseph Ibrahim is currently investigating dignity of risk in residential aged care with PhD scholar Marta Woolford. Their ultimate aim is producing a resource for Australian practitioners on risk enablement. Joseph is also releasing an animated short film later this year exploring the subject of dignity of risk, and has a website where he discusses ageing issues, including risk, at www.profjoe.com.au
Professor Ibrahim is head of Monash University’s Health Law and Ageing Research Unit, and an Adjunct Professor at the Australian Centre for Evidence Based Aged Care, La Trobe University. Contact him at email@example.com
Bringing ‘outside’ in
The clear glass front doors to Elizabeth Lodge provided a ready vista to the road and the action of the very busy city outside. For residents with dementia, being able to see outside was an invitation to go outside. Except for the secure dementia unit on Level 3, Elizabeth Lodge is not a ‘secure’ home, in that doors open and close and visitors and many residents come and go as they please.
So how do we stop some residents from going outside whilst still maintaining their dignity and independence? There are no worse words for aged care residents to hear than ‘no, you can’t’. We are talking to grown people and we need to provide alternatives rather than directives, solutions that enable the resident to exercise choice rather than rules which impose our way.
Our solution was to fix a garden decal to the front doors so they were completely covered. We put up a sign saying ‘Courtyard this way’ and, with a yellow pathway painted on the carpet, this provided a new route for residents to take.
The ‘path’ takes them to the front patio, where a vegetable and flower garden grows, providing a sensory welcome as residents can come and sit, enjoy fresh air and see the sun whilst still enjoying the view of the traffic passing by on the busy main road.
Since putting the decal on the front doors we have completely stopped exit-seeking behaviours. Of course there is also a sign in the courtyard inviting people to go for a walk by signing up for Walk N Talk.
The dignity of risk
We have had to be creative, we have had to, at times, bring the outside in and provide a ‘day out’ for
people, sometimes without them ever leaving the home. We have sought to provide residents with options to getting out and about that are supportive and enabling.
We do this by honouring those living with us, by understanding their need to continue to explore and understand their environment and also remain as independent as possible. This really boils down to knowing the person, and knowing that each person deserves our duty of care but, equally, deserves to exercise their own dignity of risk and make their own choices to participate in ways that are meaningful to them in their home.
We need to finely balance the responsibilities of an institution with the very real needs of residents to always feel at home. Being actively and obviously locked in is not, and can never be, home.
Rae Blackledge is Village Manager at Elizabeth Lodge. Contact her at: firstname.lastname@example.org