Article in Australian Journal of DementiaCare
People living with dementia and the built environment
Dementia is the term for a group of diseases affecting the brain. Dementia is progressive and irreversible, affecting cognitive, social, emotional and physical functions. Over 30 years, research (Marshall 2001; Fleming, Cookes & Sum 2008; Fleming & Purandare 2010) has proven that dementia-friendly environments are beneficial to the health and quality of life of people living with dementia, if understood from the perspective of someone living with dementia and guided by the principles of design
Australia has been slow in closing the gap between this research and practice as the Australian Government has lacked support for policy and funding for this initiative. Dementia-friendly environments and specially trained and supported staff will see co-benefits for the staff, volunteers and carers, people living with dementia, and for organisations. This essay will illustrate the importance of dementia-friendly environments in both an Australian context – Dementia Enabling Environments Project (DEEP) – and an international context – Hogewey Village in The Netherlands.
Dementia in Australia
Dementia is the umbrella term for a group of different degenerative diseases affecting the brain (Alzheimer’s Australia 2012; Australia Institute of Health and Welfare [AIHW] 2012; World Health Organisation [WHO] 2012). The symptoms of dementia include “loss of memory, intellect, rationality, social skills and physical functioning” (Alzheimer’s Disease 2013a). The symptoms of dementia are “usually of gradual onset, progressive in nature and irreversible” (AIHW 2012). There is a common misconception that dementia is a normal part of ageing, and while it is more common in people over 65 years of age, it can affect people younger than this (Alzheimer’s Australia 2013a). In Australia, there are currently more than 300,000 people living with dementia and each week 1700 people are diagnosed with dementia (Alzheimer’s Australia, 2013a). With no cure and an ageing population, it is projected that by 2050 there could be more than 900,000 people living with dementia in Australia (Alzheimer’s Australia 2013a). The progression of dementia will impact the type of care needed such as being at home, in community care, residential care or a high-level care facility (Alzheimer’s Australia 2004).
Dementia is a debilitating disease and, as a result, the built environment plays a major role in promoting or hindering the health and well-being of people living with dementia (Davis, Byers, Nay & Koch 2009; Burton 2013; Dannenberg 2013). People living with dementia often experience “difficulty with complex tasks, reduced visuospatial perception, reduced short-term memory, difficulty understanding spoken and written language, disorientation with time, place and people, apathy and withdrawal” (Alzheimer’s Australia 2013b). Over the last 30 years, studies have shown that dementia-friendly environments can significantly promote health and well-being (Marshall 2001; Fleming, Cookes & Sum 2008; Fleming & Purandare 2010). Davis et al (2009) define a dementia-friendly environment as “a cohesive system of support that recognises the experiences of the person with dementia and best provides assistance for the person to remain engaged in everyday life in a meaningful way” (Davis et al 2009). Dementia-friendly environments are important in the care, support, health and well-being of people living with dementia, allowing people to feel valued as an individual, independent and in an environment where they are safe and are provided a sense of normalcy and sustain a quality of life.
Evidence-based design and principles of design
Evidence-based design is key in the way environments are developed for people living with dementia. The Center for Health Design (2013) defines evidence-based design as “the process of basing decisions about the built environment on credible research to achieve the best possible outcomes”. People live in environments that are constantly changing and are stimulating. For someone living with dementia this experience will be very different and difficult (Mahendiran & Dodd 2009). A study by Zeisel, Silverstein, Hyde, Levkoff, Powell Lawton and Holmes (2003) found the correlation between the control of stimuli and a residential environment (rather than an institutionalised environment) leads to a decrease in aggression, agitation and depression among people living with dementia. The environment, stimulation levels, interior and exterior designs need to be modified and adapted accordingly.
In Australia, the design and development of dementia-friendly environments can be guided by the evidence-based Dementia Enabling Environment Principles (Dementia Enabling Environments 2013a). The 10 principles are: unobtrusively reduce risks; provide a human scale; allow people to see and be seen; reduce unhelpful stimulation; optimise helpful stimulation; support movement and engagement; create a familiar space; provide opportunities to be alone or with others; provide links to the community; and respond to a vision for way of life (Dementia Enabling Environments 2013b). These principles highlight the importance of understanding the problems faced by people living with dementia and how different things in the environment can affect cognitive, social, emotional and physical functions (Fleming 2013).
Dannenberg (2013) argues that “crowded, noisy, and dangerous places can have a variety of negative impacts on people such as stress, anxiety, depression and violent behaviour”. A way to reduce or deter this could be by addressing the following principle – provide a human scale. The scale is comprised of three factors that impact on a person living with dementia: “the number of people that the person encounters; the overall size of the building; and the size of the individual components, such as doors, rooms and corridors” (Dementia Enabling Environments 2013b). For example, when designing or altering a care facility, considerations could be made about having areas of residential units that only accommodate a few people with shared facilities and social areas (Fleming 2013).
Dementia Enabling Environments Project (DEEP)
The principles just discussed underpin the Dementia Enabling Environments Project, an Alzheimer’s Australia National Quality Dementia Care Initiative (Dementia Enabling Environments 2013a).
“The Dementia Enabling Environments Project (DEEP) is aimed at facilitating the creation of supportive environments for people with dementia. It is an Australian-first project to translate research into practice for dementia enabling environments, National initiatives will assist architects, designers, landscapers and aged care staff to refurbish or build future aged care environments and support families to adapt their homes, it address the increased demand for dementia enabling environments” (Dementia Enabling Environments 2013a).
Prior to this project there was no national port of call for advice and information regarding ways to make environments dementia friendly (Dementia Enabling Environments 2013a). This project is leading the way in Australia in closing the gap between research and practice (Dementia Enabling Environments 2013a). A major focus for DEEP is adapting homes to be dementia friendly, because the majority of people with dementia live in their homes (AIHW 2012). For example, when adapting a bedroom, Dementia Enabling Environments (2013c) suggests that by placing “a clock that denotes whether it is day or night may help a person with dementia to know whether it is time to wake up or time to sleep” and placing “blackout blinds can encourage a good night’s rest and reduce the possibility of the person with dementia seeing shadows and illusions cast onto the curtains from external light sources.” Dementia Enabling Environments (2013d) also suggests that to create a dementia-friendly home garden, special considerations would need to be made, such as carefully selecting plants to ensure there are no poisonous or spiky plants, keeping paths clear and even by removing overgrown bushes or branches hanging over the paths, and encouraging wildlife into the yard with additions such as a birdfeeder.
Case study: Hogewey Village, The Netherlands
Hogewey Village is based in a municipality called Weesp, just outside Amsterdam in The Netherlands (Henley 2012). This village accommodates 152 people living with severe dementia, who are cared for by 250 highly-trained staff and volunteers. Hogewey Village has two core principles:
(1) It aims to relieve the anxiety, confusion and anger people with dementia can experience by providing a safe, familiar and human (not hospital) environment. The aim of the village is to make people feel at home. The environment is surrounded by objects that are familiar and loved by the residents who are, in turn, grouped with people who have similar values, backgrounds and interests (Henley 2012).
(2) It is all about keeping people active. Although the people living in the village cannot leave the site, they are free to move around in the outside area of the residence and through the village (Henley 2012).
The village is two-storey, however there are lifts with built-in sensors, which automatically detect people waiting for the lifts (CNN 2013). Hogewey Village has 25 clubs encompassing many different interests “from folksong to baking, literature to bingo, painting to cycling” (Henley 2012). The homes are categorised into seven different lifestyle themes, such as crafts, culture, religious and urban (Tinker 2013). This is to “provide the most normal possible life, reminiscent of each individual’s formative years” (Tinker 2013). Facilities throughout the village include a grocery store, a hairdresser, a shop and a café. These are to bring a sense of normalcy to the people living there. All facilities are run as they would be in the wider community, however all the staff are highly trained to deal with people with severe dementia. There are social workers who are on call, so if a resident is anxious, agitated or angry they can be cared for in a calm and positive manner.
The village is government-funded and relatively affordable. Henley (2012) from The Guardian UK reports that the cost for the residents in the village is not “much higher than regular care homes in Britain” (Henley 2012). A payment of “€5000 a month, is paid directly to Hogewey by the Dutch public health insurance scheme, to which every Dutch taxpayer contributes through their social security deductions. Some residents also pay a means-tested sum to their insurer. There is a very long waiting list” (Henley 2012). The Hogewey Village is the only one like it in the world. Experts from the United States, Australia and Germany have shown interest in this village and how it works.
There can be co-benefits in dementia care if the design, training and education align (RCN Online 2012). In a formal care setting, if the design principles are adhered to and the staff and volunteers are trained and educated about dementia-friendly environments and are confident on how to deal specifically with each person then people will be calmer and have an increased positive quality of life, and therefore can decrease the overuse of strong drugs like anti-psychotics. This can reduce the rate of staff turnover, saving organisations money as well as decreased stress of formal and informal carers. However, there are a lot of resources (trainers, audit tools, education resources, resources for the care facility to make the changes, more staff), time (when would the training sessions take place, how long will the environment take to adapt) and money (how much will it cost to implement) needed to make sure this is implemented and working properly, otherwise things could go in the opposite direction.
The majority of government funding is put into research to find a cure for dementia, which is vital, but this is often at a cost for supporting people living currently with dementia. With the ageing population, there is an urgent need to fund and develop sustainable ways to care for and provide a caring, safe dementia-friendly environment. In 2012, dementia was placed on the national agenda after being made the ninth National Health Priority Area (AIHW 2012). In 2013, the Federal Government “has committed to an additional $200 million for dementia research over the next five years” (Alzheimer’s Australia 2013a). However, strategies, policy and funding have seen the priority of dementia-friendly environments being left out. There should be a national government strategy for this because dementia places immense pressure on the health-care and aged-care sectors (Alzheimer’s Australia 2013a). This is because over half of “permanent residents in Australian Government-funded aged care facilities had a diagnosis of dementia” (AIHW 2013).
Dementia environments should not be just in the health and aged care sector, it should branch out to all environments such as shops, and libraries and consider the walkability of environments. It is also important to provide comprehensive education and support for staff, carers and families about dementia.
The DEEP plays a significant role in the big picture. A comprehensive and national approach is needed to cope with the ageing population.
There are considerable gaps between research of dementia-friendly environments and practice. The Australian Government needs to consider stronger national policy and more funding to ensure ample sustainable care facilities for the future and a safe and secure environment for people living with dementia. There is more to be done.