Go-along walking for dementia research

An older man with a walking cane walks along a path in a park. He is by himself. Understanding the experiences of people with dementia is difficult if they cannot express those experiences well. The next best thing is to observe those experiences. That’s what the go-along walking method is – an observation of how people with dementia experience the environment. 

Researchers carried out go-along walking interviews with fifteen people with dementia. They followed this up with sit down interviews that included a family member. The participants’ stories of venturing outdoors showed that they were aware of their changing circumstances. They all shared a sense of vulnerability and not knowing if they could trust strangers to help if they needed it.

Dementia also has a gender dynamic. Male participants were willing to relinquish control to their wives, whilst female participants were prepared to adapt to changing family dynamics. Men still wanted to be seen as independent as this equated to ‘manliness’. 

A dementia-friendly environment is one thing, but alleviating the pervading personal sense of vulnerability is also important. Regardless, the research showed that people with dementia are able to take responsibility and create other ways of being in the outside world. 

The title of the article is, On being outdoors: How people with dementia experience and deal with vulnerabilities. It’s available for download from ResearchGate

From the abstract

This paper advances understanding of how vulnerability is experienced and dealt with by people with dementia when outdoors, and at times shared with family carers. We found that for the person diagnosed with the condition, an awareness of failing knowledge about oneself or the ‘rules’ of outdoor life, which individuals experienced emotionally and dealt with civically. People with dementia attempted to manage risks and anxieties, often doing this independently so as not to burden family members. 

Ruth Bartlett has a follow up article that builds on this work. The title is, Inclusive (social) citizenship and persons with dementia. It is published in Disability & Society and needs institutional access for a free read. Or request a copy from the author. 

From the abstract

The study found that access work entailed three spheres of activity: ‘access to location technologies’, ‘access to ordinary places’, and ‘consciously sharing the responsibility of access work’. Overall, this article contributes to the growing literature on cognitive accessibility by evidencing the mental demands of access work, as experienced by people with dementia, and need to share the responsibility of access work between humans and non-humans, and state and non-state actors.

 

Ageing in Place vs Aged Care: The Costs

Three stacks of coins sit alongside a wooden cut-out of a house shape.Most people want to stay in their own homes rather than go to an aged care institution. The Royal Commission into Aged Care report confirmed this. And the obvious follows – it’s also beneficial for governments because the costs of home care are less than institutional care. But are our homes designed to support care at home?

According to an AHURI Brief, on average, someone on a home support program costs the Government around $3,900 per year. The cost of a person living in residential care costs around $69,000 a year. These figures are the annual ongoing cost per person. The cost of a home care package ranges from $9,000 a year to $52,000 per year depending on the level of support. 

The AHURI Brief includes a chart comparing the various costs of of the different packages and support against the cost of residential care. Another cost that could be reduced is the need for home modifications. Not only can people stay home more safely, care hours are also reduced. In rental accommodation such modifications can be denied by the landlord. That will lead to early entry into an institution. 

The AHURI Brief concludes, “We note that there is currently no discernible connection between the Australian Government aged care program and any Australian or State or Territory Government housing program. This must change.”

The title of the AHURI Brief is, Better supporting older Australians to age in place

AHURI (Australian Housing and Urban Research Institute) is a national independent research network. AHURI’s work informs policy about housing and urban development. They have not engaged with the proposed reforms to the National Construction Code for improved accessibility in all new housing.  

 

Aged Care: Are institutions still the way to go?

An older woman using a walking cane walks over a paved section towards the roadway.Why is it still OK for older people to be “put” in aged care institutions? We closed such places for people with disability and mental health conditions last century. There will still be a need for some people to receive care in a place that is not their home. But the vast majority could be better served with homes and neighbourhoods designed to support them. And that doesn’t mean these places won’t suit everyone else – they will. 

The Conversation has an article that discusses this issue arguing it’s time to support healthy ageing in place. “Age-friendly places aren’t just good for older people. They also support the needs of children, people with a disability and everyone else in a community.” The article includes the well-established global age-friendly framework devised by the WHO many years ago. It is still relevant today. As the authors say, the WHO framework covers the essential ingredients of liveable communities. And it supports well-being for all. 

The title of the article is, Aged care isn’t working, but we can create neighbourhoods to support healthy ageing in place.  

A previous post, Ageing in the right place, has links to more on this topic.

Community engagement and civic innovation

An international group of adults stand with a big board in front of them. It says, Make Things Happen. There are lots of coloured post it notes on the board.Community engagement sounds like there’s more interaction than community consultation. But is ‘engagement’ enough, or is there a way for the community to also innovate? That is, to be part of the Civic Innovation process.

Civic Innovation is a global movement embracing smart city technology and social innovation. Citizens can play an active role in democracy if they have good information to inform their views and ideas. 

The Future of Place website has an article that outlines this new social and technological movement. It explains social innovation, the role of civic-tech, citizen activation, and collective impact. 

“Citizens often identify social and infrastructure problems before planners and developers. But are city leaders thinking community engagement strategies are enough? Or are they tapping into these valuable networks?” The question posed is whether current community engagement processes are recruiting the next generation of active citizens. Doing more with less is also an outcome of collective impact.

The title of the short and straightforward article is, When community engagement might not be enough – Let’s talk ‘why?’ civic innovation.

The Future of Place website has other useful resources.

 

Disability and Planning Research

A book and notepad lay open on a desk in a library.Planning research has not yet evolved to include disability perspectives. Is it because the medical model of disability still prevails? Or is it mistakenly believed that disability is not a design issue? Some might say it’s because the needs of people with disability are fragmented across government departments. Practitioners in the planning field are required to engage with communities, but it seems the researchers are not keeping up. 

Two Canadian researchers took a look at the situation. A search of five prominent planning journals showed that people with disability largely remain invisible. The researchers found just 36 articles – most of which come from the US and the UK. Only 20 had people with disability as the central topic. 

The authors describe the content of the papers that go back as far as 1916. Attitudes towards people with disability clearly changed over the years but including them in research did not. Papers that did mention people with disability generally added them to a list of other groups considered vulnerable or marginalised. 

The paper concludes:

“Planning researchers and practitioners, therefore, must continue to question what knowledge, assumptions, and biases we may have toward PWD and experiences of disability that manifest through our environment. More broadly, planning scholarship can be strengthened by continuous questioning of self—on the processes through which certain knowledge is produced or a pursuit of certain knowledge is prioritised within the discipline. The development of critical discourse focusing on PWD can be a vehicle for such self-reflection.

The title of the article is, The Precarious Absence of Disability Perspectives in Planning Research. It is open access on cogitation press website, or you can download directly

Disability inclusion: A closer look at philanthropy

A jumble of words representing philanthropy and generosity. Philanthropy is yet another barrier to overcome in the quest for inclusion. As a service, it too, should be universally designed. The underpinning principle of universal design is inclusion. It’s captured in the Sustainable Development Goals with the phrase, “leave no-one behind”. So let’s take a closer look at philanthropy and what that means.

Employment of people with disability and other marginalized groups in the philanthropy sector is one issue. Including people with disability within all grants is another. However, the disability sector is most often treated as a stand-alone area for receiving grants. This segregation is not helpful – disability should be included within all projects. The Disability Philanthropy website has three videos that explain more and a resource library.

Ryan Easterly explains, “Philanthropy needs to do a better job reflecting society and communities in general.” Funders should consider disability and the how it affects all aspects of life. There is hardly any issue that a foundation would fund that doesn’t impact or include disability.

Guidance for Foundations on Creating Disability Advisory Groups might be a good place to start. It has a list of Things to Know, and Things to Avoid.

 

Digital transitioning requires mainstream accessibility

Front cover of the ICT report.COVID has revealed our reliance communicating online and via social media. That’s why European countries are getting together to improve the accessibility of all digital services. The digital world has to be accessible to all. It is also part of the Sustainable Development Goals and “leave no-one behind”. That’s why digital transitioning requires mainstream accessibility.

The International Telecommunication Union has launched its ICT accessibility assessment for the Europe region. The COVID-19 pandemic has reinforced the importance of ICT accessibility. The report is designed to provide ITU members and stakeholders from the ITU Europe region with a holistic view of ICT accessibility requirements, the implementation status of ICT accessibility laws, regulations, policies and institutional frameworks, and with good practices and recommendations. Accessibility for all, including ICT is now a top priority.

A magazine article in Mirage titled, Accessible Europe 2021: Making ICTs accessible to all, provides an overview of the assessment report. By 2023 the ITU wants 90% of digital services to have the “seal of usability and accessibility”. This is part of the Accessible Europe project. 

 

Videos more effective than policy

A brightly coloured film strip with the word Video on it.Policy is often seen as the way to make change. But when it comes to being inclusive it hasn’t worked very well. If policies, codes and papers are not accessible to all stakeholders, how can we create inclusion? Janice Rieger makes this point in her paper which will be the subject of her workshop at the UD Conference in Melbourne in May. She says videos make change more effectively than policy.

The title of her short paper and workshop is, Reframing Universal Design: Creating Short Videos for Inclusion. Her research provides insights on how videos travel and reach different audiences. This results in a significant impact and enacted change and informed policy. Dr Rieger concludes that “video impacts more than policies, codes and papers ever can”. 

Editor’s comment: I think this will be one of the highlights of the program. Janice works internationally and we are very pleased to have her contribution to the program.

Here is an extract from her paper:

“Video is a visceral medium, offering the opportunity to reframe universal design practice and education. It captures movements and can be co-created with people with disabilities. Videos co-created for inclusion encourage detailed and rich embodied knowledge and experiences because information is prompted by association with one’s surroundings. Significantly, videos have the capacity to excavate personalized knowledge of those with different abilities and uncover systems of exclusion that are often hidden or naturalized, and shamedly rendered invisible through policies, codes and papers.”

In a short video titled, Wandering on the Braille Trail, Sarah Boulton explains how she navigates the environment using her white can and tactile ground markers.

 

Public toilets by universal design

A row of handbasins in a public toilet.We all have to go sometime. Accessible public toilets have their own Australian Standard. It spells out how to design it and what fittings go where. But an accessible toilet doesn’t solve all our toileting issues. It’s time take a universal design approach and re-think the business of public toilets. That’s what Katherine Webber will be discussing at the upcoming Universal Design Conference.

Thinking more broadly than people with limited mobility is important if we are to be inclusive. Katherine Webber’s Conference paper explains where the design of public toilets are letting some people down. She discusses the taboos, policy and legal barriers in several countries. Katherine lists the many issues people found with public toilets and they go beyond those of wheelchair accessible toilets. She proposes that a universal design approach be taken to the design and placement of public toilets. 

Katherine recently visited Canberra to talk to policy makers how our public toilets should better. ABC News has written a short piece on her visit and some of the findings from her Churchill Fellowship research. 

The title of Katherine’s paper is, Everyone, everywhere, everyday: A case for expanding universal design to public toilets. She will also lead a discussion group at the lunchtime Table Topics session at the conference.

You can find more peer reviewed papers from the upcoming conference in Melbourne  17-18 May 2021 on the Griffith University website 

Planning Inclusively: Make Communities Just for All

View from high building in Brisbane overlooking building roofs and the Brisbane river and bridges. Jacaranda trees can be seen in the street.Urban planning is a highly contested and politicised area to work in. The talk is that planning is about people, not roads and buildings. But when do users – people – get a say in planning? Only at the end when plans are put on exhibition. Then you need to be an expert to understand them. Planning inclusively is to make communities just for all. 

Lisa Stafford, in a briefing paper, asks how well do we consider human diversity in planning cities and regions?  Planners and bureaucrats would rarely even consider the concept of “Ableism” in their designs. That’s why we still have marginalisation by design. The lens of the average or the “normal” person is rarely put aside for a lens of diversity. 

Graphic with four circles: one each for exclusion, separation, integration and inclusion.Social planning can drive inclusive communities because it operates from a justice framework. Participatory planning is one way to work towards inclusion. 

The tile of Lisa Stafford’s paper is, Planning Inclusively: Disrupting ‘Ableism’ to Make Communities Just for All.  She has four recommendations at the end of her easy to read paper. Briefly they are:

      1. Adopt an approach of planning for all
      2. Apply spatial justice thinking to planning
      3. Embed universal design as a core planning principle
      4. Re-emphasise the social in planning

Editorial Introduction 

“Disabled people continue to experience exclusion by design in our everyday spaces, infrastructure and services, which has been magnified through the COVID-19 pandemic. Now, more than ever, there is an opportunity for urban and regional planning practitioners, researchers and disabled people to come together to advocate for and create inclusive, sustainable communities for all. However, to make this transformative, we must first critically question how well do we really consider human diversity in planning cities, towns and regions? This question is examined in this briefing paper by contesting entrenched challenges like ‘ableism’ before providing fundamental starting points for planners in planning more inclusive and just communities for all.”