Harbinger Consultants

Creative Sustainability :: Place, People, Product, Potential, Partnership + Pollinating

REPORT | Forget Memory Loss – Professor Steven Sabat


For over three decades, Professor Steven Sabat has been researching the intact cognitive and social abilities of people with Alzheimer’s disease as well as the ways in which communication between those diagnosed and their caregivers may be enhanced. This month is Dementia Awareness Month #dementia2017 and Professor Sabat is touring the country sharing his knowledge and experience in a lecture titled Forget Memory Loss – What About the Person? Professor Sabat has specifically researched the importance of selfhood for people living with dementia.

He explained that terms commonly used in reference to dementia, like ‘memory loss’ and ‘wandering’, were misleading and resulted in mistreatment of people with dementia. He said that the term ‘memory loss’ misrepresented not only the nature and complexity of memory but also the experiences of people with dementia. He declared that “this term needs to go” because it negatively impacts on people with dementia and the way in which they are treated.

Professor Sabat recounted the horrific case of a woman with dementia living in a residential care environment being raped by another resident who was known to be sexually aggressive. The family mounted a legal action. In response, the legal team for the residential care facility based their defence on assumptions about memory loss arguing that the woman would experience no enduring impacts from the experience because she would not remember. The case was ultimately settled out of court. However, Professor Sabat said that the woman’s behaviour and demeanour changed after the incident and she would often cry, although the care facility responded to this by describing her as ’emotionally labile’. He cited other cases where it was shown that people with dementia were able to make new memories or respond in tacit or implicit ways.

For Professor Sabat, the term ‘memory loss’ means carers, family, friends, neighbours and medical teams aren’t held very accountable for the way people with dementia are treated. He described how partners and carers of people with dementia have described them as ‘useless’, ‘not good for anything’ and ‘unable to remember anything’. If people with dementia are assumed to forget (or, perhaps, if all we see if the lack of recall), then developing meaningful exchanges isn’t prioritised. However, memory is complex and people often respond to different triggers and access different aspects of memory including recognition and implicit retrieval.

In his summary points, Professor Sabat stressed that ‘recalling is not the same as remembering: just because one fails to recall, does not mean one fails to remember’. A person can remember even though they are unable to recall, because they might still be able to recognise and implicit memory can still exist. This raises important questions about what ‘memory loss’ really means. “It’s really explicit memory dysfunction and that is not the same as ‘memory loss’,” Professor Sabat explained. In turn this informs the way we treat people – do we treat them differently or indifferently if we believe they cannot remember anything? What does this mean for the way we care? If we understood that people with dementia remembered things that were important to them, would we treat them differently or better? People with dementia may not be able to remember what you say, but they can remember how you have made them feel.

Professor Sabat also provided some concluding recommendations, highlighting the need to create good days and make moments matter (with reference to Dorothy Pringle’s work). It is particularly important to not set up people living with dementia to fail – don’t ask questions like ‘what did you have for breakfast?’ which ultimately are not very important and rely on explicit recall. Instead, he suggests opening up conversations to let people with dementia express themselves and their memories in a broad range of ways. This is an important part of selfhood and to show what people can do rather than emphasise what they can’t.

Afterwards, during question time, one audience member described herself as an aged care professional and described the need to change the aged care environment. She asked about how to change culture and learn new approaches. The question drew applause from the audience and Professor Sabat acknowledged the importance of the question. He said “the power of one” still mattered. He encouraged the audience member to take the initiative and model different and better ways of doing things to change the systems from within.

It seems an indictment on all of us that after decades of research, advocates and researchers like Professor Sabat still need to end their lectures with reminders for showing everyone respect and common courtesy. The continued use of the term ‘memory loss’ to describe the condition of people living with dementia seems to be one of the many ways that people with dementia are not only denied dignity but erased and forgotten.


SUPPORT | Dementia Awareness Month

Recently I encountered two very distressing incidents involving people with dementia and have come to see these as indicative of a general lack of understanding about dementia and the impact it has on on individuals. This month is Dementia Awareness Month #dementia17 and this small post is one way of raising that agenda. As a member of the Dementia Friendly Communities Advisory Group, I feel a sense of responsibility to share the work of this dedicated group and my experiences in relation to dementia friendly communities.

While poking around a local op shop, I overheard an interaction with an elderly man who came into the shop and the subsequent conversation between two of the staff. The man came into the store, looked around and started asking about whether the newspaper had been passed on. The shop attendants, a young man and middle aged woman, were a bit confused and informed him that newspapers weren’t sold in that particular store. The elderly man was impatient and walked around the shop as though looking for something. He endeavoured to explain that he knew they didn’t sell newspapers but just wanted to check that it had been passed on because usually he passes it on after he has read it. At this, the shop attendant clearly wasn’t following what the man was saying. He became abrupt and told the man that they couldn’t help him and he should check at the local grocery store. When the man left, the two shop attendants then started talking about how the elderly man came in often and probably had dementia, which was ‘sad’. One also commented that the elderly man had been inappropriate with some of the female shop assistants, which understandably upset them. The young man said if he did that again then he would have words with the elderly man. At this point, I was truly speechless at the many levels of wrong in this interaction.

The second story was recounted by my partner who heard it from a shop assistant at our local supermarket. Apparently, an elderly couple frequent the shopping centre where the supermarket is located. It was reported to my partner that the man is caring for his wife who is assumed to have dementia. When they come into the centre, the man will sometimes leave his wife while he does other things. However, she can be unpredictable and aggressive. The shop assistant reported that the woman hits people on the back of the head. On that morning, my partner was told that the woman was left alone and apparently had picked up two bottles of vinegar that she smashed together near a pram carrying an infant. While a mess resulted, thankfully neither the infant nor the woman were harmed. The shopping centre and supermarket management are considering whether to ban the woman from the premises.

People living with dementia are extremely vulnerable, and it is necessary to find the right balance between care and independence, particularly where there is a risk of harm to anyone. They can develop what is politely called ‘behaviours’ as a result of cognitive decline. This includes a lack of inhibition and propriety as well as other changes to temperament, judgement and relationships. Such behaviours often require some kind of management or redirection. Often spouses and other family members who become carers are incredibly stressed as the demands are immense and complex – carers don’t always cope well. Both responses by local businesses seem to adopt a punitive stance rather than a compassionate one. There is a sense of blaming the person with dementia and/or their carer and shifting the ‘problem’ (meaning the person with dementia) to someone else – in the case of the op shop, the man was redirected to another shop and in the case of the supermarket, responsibility was shifted back to the spouse. Excluding people with dementia from places is not an appropriate response; denying them access to support is not an appropriate response; failing to support a carer is not an appropriate response. It often takes someone on staff who has experience with a friend or family member with dementia to make the connection.

Both responses by local businesses seem to adopt a punitive stance rather than a compassionate one. There is a sense of blaming the person with dementia and/or their carer and shifting the ‘problem’ (meaning the person with dementia) to someone else – in the case of the op shop, the man was redirected to another shop and in the case of the supermarket, responsibility was shifted back to the spouse. Excluding people with dementia from places is not an appropriate response; denying them access to support is not an appropriate response; failing to support a carer is not an appropriate response. It often takes someone on staff who has experience with a friend or family member with dementia to make the connection. Neither of these businesses have information about dementia support and awareness displayed on their premises.

Most people living with dementia live in the community, not in care facilities. Dementia friendly approaches are one way of raising awareness and supporting people living with dementia. This enables people living with dementia to remain living independently or in the community. Everyone in a community has a role to play including businesses, workplaces, community organisations and local government. Earlier this month Alzheimer’s Australia relaunched its Dementia Friendly Communities website with new resources, online community and learning modules.

According to the website, in a dementia-friendly:

  • people are aware of and understand dementia
  • people with dementia continue to be active participants in their own lives
  • health staff are educated about dementia and treat people living with dementia with respect and empathy
  • businesses provide accessible services to people with dementia, including having staff who understand dementia and know how to communicate effectively
  • employers provide support for people living with the disabilities of dementia to continue with paid employment
  • the physical environment enables people with dementia to get out and about safely
  • social groups and organisations are welcoming and inclusive of members with dementia.

In the stories recounted here, my locality on Brisbane’s northside is a long way from becoming a dementia friendly community. Businesses and organisations can make some positive changes to their services, procedures and environment to better meet the needs of people with dementia. The Dementia Friendly Communities online hub provides guidelines for businesses and organisations. There are several retirement villages in the locality which are proximate to the shopping centre and public transport interchange. This is potentially a workable environment for people with dementia to remain living in the community if only the local shopping centre and businesses could recognise who their customers are and the challenges they experience.

Next time, I will be naming and shaming …

See also my article, ‘Place Making with Dementia in Mind’, published in IN PLACE, the digital magazine of Place Leaders Asia Pacific. It examines what placemaking means for people living with dementia. The article is available online.

LEARN | Facilitation, engagement and participation

Our work has recently assumed greater focus on engagement and facilitation with John developing and delivering a series of workshops and masterclasses for Flying Arts, including a professional development intensive for mid-career artists and other workshops. John’s facilitation work has received high praise from participants and clients. John is also continuing to mentor at QUT and in the arts sector.

John can work with your organisation or community to facilitate and develop training. Having worked in a broad range of organisational contexts, including higher education, John is a skilled facilitator and educator.

We are also continuing in other involvements such as the Dementia Friendly Communities Advisory Group and the research projects at QUT, including project management for an engagement platform developed by the School of Design and currently being deployed in the health sector. This involves both community engagement and workshops with clients.

September is Dementia Awareness Month and the Dementia Friendly Communities website was launched this week. The new website offers resources, learning and an online community.

Also, Linda has been giving some thought to her learnings from the STEPS Summer School and written a blog post on how the Pathways Approach could be applied to examine the roles and opportunities for artist residencies in developing communities: “When such a Sustainability is at the core of artist engagements in projects and residencies in developing countries and communities, then contestation of sustainable development goals and, ultimately, ‘trading-off’ can be better understood as political actions and choices. “

CAPABILITY | Towards Transition in Queensland

It’s official. The State Government has released policy to steer a transition to zero net emissions by 2050. The policy, Pathways to a Clean Growth Economy: Queensland Climate Transition Strategy, aims to work with Queensland’s regional communities to transition and acknowledges the role of communities and cities in transition dynamics.

This policy recognises the importance of place-based approaches to transition and the need for local and regional communities to build on their strengths and endogenous assets. The spatial scale and place-based dimensions of transitions are the least understood with a research profile now emerging. However, a regional development approach is not sufficient for addressing transitions which need to engage whole of system processes to catalyse and sustain change. This change occurs through the setting of vision to guide action for change. It involves flexible processes of coordination to facilitate system learning and innovation. The traditional style of top down blueprints and roadmaps is not sufficient for guiding such dynamic change: transition research stresses that transition is not planning. New methods, governance styles and approaches are needed.

Transitions aren’t just about technological change – they are also about changing social, institutional and ecological relationships. Sustainable transition is among our consulting and research capacities. Linda has been working on PhD to investigate relationships between sustainable transitions and regional level planning. Regional and place-based approaches are developing. The policy opens windows of opportunities for regions, communities and cities to coalesce action to develop alternative pathways.

Eco-tourism has been proposed one aspect of regional transition. This is not just about isolated or examplary projects but a broader industry-wide or place-based approach to transitioning the industry from carbon dependency to systemically sustainable ways of operating. In so doing this catalyses other benefits for the local community. Sustainable tourism appeals to a range of market segments who aim to make conscious choices about their tourism spend.

The strategy also supports local government, community engagement and social innovation as integral for transitions. The local scale is particularly important for facilitating experiments and learnings. This includes regional and remote Indigenous communities.

If you are considering investigating or implementing transition please let us know your needs. We have a deep understanding of transitions and how to work with communities to facilitate place-based approaches. Linda recently attended an immersive Summer School at STEPS at Sussex University in the UK to enhance transitions research and knowledge and pathways to sustainability.

We have extensive experience working with Indigenous communities, regional communities and local and state government in a broad range of planning and development initiatives that support sustainability. Our consulting practice has embedded transitions thinking, research and practices into our capability. We aim to work with clients and communities in ways that builds understanding of and enthusiasm for sustainable transition. We can also work with your organisation to develop workshops and training for your organising.

Please be in touch with John Armstrong at jmjarmstrong[at]hotmail.com

You can also read some of our posts about sustainable transitions and what is means for communities, government and institutions:

Also a post on LinkedIn, Transition to Zero Net Emissions in Queensland, offering some perspectives about recently released policy, which will be examined in greater detail as part of Linda’s research.

PROJECTS | Participation and process

In the last few weeks, there have been some significant shifts in our work. We work in a very flexible way and this means we often take on individual projects and roles as a way of working within communities for impact.

John is working as part of a team to develop an Indigenous enterprise and training initiative based on traditional knowledge. He has been tracking with this initiative for several years and most recently was involved in several planning meetings involving key stakeholders. He is also participating in the development of a training initiative in the Torres Strait.

John’s recent facilitation of creative practitioner masterclasses in Hervey Bay are testimony to his skills as a facilitator and communicator.

Linda’s PhD research continues with a focus on sustainable transitions in regional infrastructure planning. The transitions approach is based on complex systems thinking and aims to identify transitions pathways in social and technological contexts.

Linda is also facilitating a Students as Partners initiative with the Oodgeroo Unit at QUT to build student and staff collaboration. Recently, a collaborative workshop was held in which students and staff explored and co-designed ideas for working together to enhance student success.

Linda’s role with the Dementia Friendly Communities Advisory Committee continues and she recently participated in a face to face meeting in Sydney to discuss and contribute to the development of resources that will support people living with dementia.

Linda also contributed an article to IN PLACE, the digital magazine of Place Leaders Asia Pacific, examining what placemaking means for people living with dementia. The article is now published online.

Linda was offered a place in the ESRC STEPS Summer School on Pathways to Sustainability, at University of Sussex, UK. The Summer School is set to commence mid May.

COMMENT | Any place for a ‘Chief Transitions Officer’?

In an article in Cities Today, John Krauss examines how resilience is placing new demands on planning and other built environment professions addressing urban challenges. Krauss calls for a new breed of professionals to deal with the complexity of issues facing our cities and communities. The article asks the question: How do we build infrastructure that is both resilient in itself and adds to a city’s overall resilience, by adapting to climate change and anticipating new shifts such as driverless transport, changing business models and demographic change?

The Rockefeller Foundation has successfully introduced a global campaign promoting resilience by supporting cities to employ a Chief Resilience Officer. This is important and commendable work, although the mix of new professional skills and knowledges shouldn’t stop there. Where resilience addresses the necessity of adapting to, responding to and recovering from shocks, such as extreme weather events, transitions makes it explicit that more systemic and long term change is needed. Having just endured another extreme weather event in Queensland, it seems somewhat self-defeating to end the discussion at resilience. A whole town is being evacuated in northern NSW because a levy, an infrastructural resilience initiative, isn’t high enough. How’s that cost-benefit analysis and governance process really measuring up?

How are we addressing transition other than a handful of throwaway sustainability and emissions targets? Throughout my research on sustainable transitions and infrastructure, I’ve been underwhelmed by many of the planning responses to transitions in Australia, particularly focused on Queensland. Yet, transitions are being explored, tested and trialed in many places around the world – not just the German energy transition, but experiments in transition management in the Netherlands, various urban labs, and transitions analysis of infrastructure systems elsewhere. Transitions prompt us to look to the very long term to design pathways for change and to engage the whole system in problem-solving, system innovation and path creation. It’s highly charged political and contested territory.

Sustainable transitions are understood in terms of socio-technological systems, such as infrastructure systems, and their impacts on economic and socio-economic activity to address ecological and socio-ecological priorities. Transition theory is an emerging and growing area of research, which envelops systems, evolutionary economics, governance, innovation and complexity theories Transitions occur through both incremental and multi-dimensional momentum towards radical change involving learning and experiment. Sustainable transitions involve system innovations that trigger whole-of-system changes, not just system improvements, as can be the result of urban and regional planning. Several research papers addressing transitions and infrastructure planning call for a rethinking of professional education.

Krauss calls for 10,000 Chief Resilience Officers worldwide, but that’s only part of the sustainability remix of our professions and their skills – and the role they play in urban and regional governance. There is also a case for a new breed of professional focusing on transitions, say a ‘Chief Transitions Officer’, to provide the kind of strategic and reflexive leadership that is much needed for addressing complex challenges like carbon and infrastructure lock-in.

SYMPOSIUM | Designing for Dementia

The Designing for Dementia Symposium hosted by the QUT Design Lab presented diverse research project updates, highlighting some of the vital work by designers and researchers in addressing the needs and wellbeing of people living with dementia. The presentations all presented nuanced approaches to person-centred design and environments, project evaluation, participatory and inclusive approaches to design, and the need to create meaningful experiences for people living with dementia. Some of the projects that were profiled during the day are listed below.

The LAUGH (Ludic Artefacts Using Gesture and Haptics) research project is designing innovative playful devices that amuse, distract, comfort, engage, bring joy, and promote ‘in the moment’ living for people with late stage dementia.

Materialising Memories
The Materialising Memories project aims to use a design approach to assist people in remembering through a selection of appropriate digital media cues and facilitating forgetting irrelevant experiences. This project will investigate remembering and forgetting (both results of the same process), the effects of physical and digital media on memories in everyday life and the creation and curation of these media. This knowledge will be used to design, implement and evaluate interactive systems that will facilitate remembering and forgetting.

Dementia Care by Design
A research film about De Hogewyk by Nicole Gaudet.Given exclusive access to de Hogeweyk in early 2015, researcher Nicole Gaudet and Megan Strickfaden with filmmaker Steven Hope traveled to the Netherlands to explore a care facility for people with dementia – De Hogeweyk. This ethnographic documentary promises a glimpse into the world of dementia through an innovative space that leaves audiences touched by the humanity of a different kind of care facility that gives hope for future generations.

MinD – Designing for People with Dementia
This project aims to help people with dementia engage in social contexts to improve psychosocial wellbeing. Design can offer novel ways of complementing existing care approaches to empower people with dementia in everyday social situations. Utilising the concept of mindful design, the project investigates innovative design solutions to enable self-empowerment and confidence building of people living with dementia.

Dementia Training Australia
DTA is a service established to provide dementia-specific training to aged care, health care professionals, undergraduate trainees, and a range of other professionals and community service providers. The goal is to improve the care and wellbeing of people with dementia.
DTA will provide a range of services, events, and resources to ensure that up-to-date dementia knowledge and skills training are within reach of anyone who has a professional contact point with people who have dementia.

The presentation by Kirsty Bennett focused on Environmental Design Principles for Dementia, which is downloadable from the website.

Dementia Friendly Airports
Airport audit using the Dementia Friendly Communities Environmental Assessment Tool to determine the ‘dementia friendliness’ of Brisbane Airport’s Domestic and International Terminals.

Inside Aged Care
Through a semi-longitudinal ethnographic case study, the ‘Inside Age Care’ project investigated the day-to-day ‘lived experience’ for residents of one Brisbane aged care facility over three years (2014–2016). One of the project outputs was an exhibition at the State Library of Queensland featuring photographs and stories by the project participants.

I also recently attended the Dementia Friendly Communities Advisory Group meeting which involved co-design of the program. The participation of people living with dementia and their carers is essential for the success and relevance of this program. In Place, the magazine of the Place Leaders Asia Pacific, will also be publishing an article I have written about place making and dementia in the near future.