CHAPTER 22 Environments that enhance dementia care
issues and challenges
FRAMEWORK
The impact of the social and physical environments on older people who have dementia is known to be critical to their care outcomes. Interrelationships between the physical environment and the social milieu within that environment has significant influence on how the person reacts, feels, finds meaning and obtains therapeutic care. There has been research into dementia-friendly environments and there are some criteria now well known to improve both the living and staff working conditions for this group. The authors discuss these criteria and the influence of small domestic living units and how they can change wellbeing. The activity that takes place in the living unit is as much an influence as the design. As far as possible the person with dementia needs to find meaning in their day and take pleasure in activity that matches their level of competence. The notion of person and person-centred care is the foundation for good outcomes. [RN, SG]
Introduction
The role of the built environment in health and social care has generated considerable interest in recent years. The traditional hospital and residential environments, emanating from the dominant medical model of care, have been called into question for both patient health outcomes and as viable working environments for health professionals (Devlin & Arnelli 2003; Ulrich 1992). Like other governments in developed countries around the world, the Australian Government has endorsed age-friendly principles and practices to underpin the ways in which older people receive treatment and care across health service settings (Care of Older Australians Working Group [COAWG] 2005). In keeping with this policy, a person-centred approach to the care of people with dementia is fundamental. The goals of person-centred dementia care are to:
Many changes can be made to the built environment to capitalise on an older person’s strengths and abilities, to minimise the adverse consequences of hospitalisation (Black et al 2006; Fleming et al 2003), to maintain independent living in the community (Gill et al 1999), and to facilitate wellbeing in the residential care setting (Teresi et al 2000; Zeisel et al 2003). As Day and Calkins (2002) state, ‘environmental design is now considered a critical part of the care milieu’. In discussions of the environment, a fundamental distinction is made between:
For people with dementia, the physical environment can help achieve their full potential.For people with dementia, the physical environment can help achieve their full potential and avoid causing any unnecessary disability (Marshall et al 1999). However, the way care is offered within that physical environment is an important partner for successful outcomes (Baro 2002). When there is a failure to link dementia-friendly physical design features to the programming, operation and service philosophy of a residential care facility, the therapeutic impact is significantly restricted (Sapperstein et al 2004). Hence, the physical environment can be secondary to leadership, philosophy and approach to care that is person-centred, welcoming, flexible, knowledgeable and calm. A definition of a dementia-friendly social and built environment has, until recently, been lacking. Davis et al (2009) propose the following definition of a dementia-friendly environment:
Over time, research and practice, a better understanding of dementia, design innovations and the rapid growth of specialised dementia care are all contributing to an ever-increasing body of evidence and consensus. As in all areas of professional practice, the research varies in quality and some areas are more fully investigated than others, however there is sufficient agreement for us to use the available literature to provide design guidance for creating dementia-friendly environments. Identifying the key components in a dementia-friendly environment and understanding why these components are important provides health professionals with the knowledge to facilitate changes that have a positive impact in the lives of people with dementia.
Principles underpinning dementia-friendly environments
Traditionally, the approach to care, organisational structures and the built environment has been designed to support the medical needs of people with dementia rather than quality of life. Despite the recognition of relationships as the foundation of a person-centred approach to care, its all-inclusive nature is often overlooked. Kidd (1997) addresses this in the context of the built environment, as he highlights ways in which consideration of residents, staff and residents’ relatives and friends is essential in the design process:
More recently, it has been argued that the ‘living experiences’ of the person with dementia are important in focusing thinking around the creation of physical and social dementia-friendly environments. Shifting the emphasis from the ‘condition’ to ‘experience’ ensures the appropriate focus to create environments that allow people with dementia to be active participants in everyday life rather than passive recipients of care (Davis et al 2008). Furthermore, because the experience of dementia changes over time and is different from one individual to another, such a focus-leading design takes ever-changing support needs into consideration.
In reviewing international literature, Marshall (1998) found consensus around some key design principles and concluded that environments for people with dementia should:
Facilitating a dementia-friendly environment: Principles in action
To understand how the environment can be supportive and enabling it is important to have a sense of the experience of the person with dementia. Providing insight into this is a description of the common characteristics of dementia from the perspective of the person with dementia, as illustrated in Table 22.1, which would be important to consider when thinking about design. Keep in mind that a person’s abilities do not remain static, and it is important to be constantly reassessing what is appropriate for a person on a day-to-day basis (Davis et al 2008). Different people will, of course, have different experiences and even when people with dementia have similar levels of impairment, the way in which they respond might be quite different. Nevertheless, research and practice have identified elements of the physical and social environment that can provide support and help individuals compensate for any impairment they might be experiencing.
Table 22.1 Common characteristics of living with dementia to consider in design
| It impairs our memories |
| It impairs our reasoning |
| It impairs our ability to learn |
| It raises our levels of stress |
| It makes us acutely sensitive to the built and social environments |
| It makes us increasingly dependent on all our senses |
(Source: Stewart S, Page A 1999 Making design dementia friendly: Conference proceedings of a European Conference, 1–2 October, Dementia Services Development Centre Glasgow, Stirling, Scotland)
To understand how the environment can be supportive and enabling, it is important to have a sense of the experience of the person with dementia.Home or home-like?
Much has been made of the importance of small, domestic, home-like settings and evidence suggests that smaller group living units facilitate many benefits (Annerstedt 1993; Rabig et al 2006; Torrington 2006). New models of smaller, stand-alone facilities housing 8–10 older people are demonstrating initial positive outcomes for residents, including less depression, less use of psychotropic drugs, less decline in activities of daily living and higher levels of satisfaction from residents, family and staff (Kane et al 2006). The physical environment of such models reflects the characteristics of home with private rooms and full bathrooms, as well as sharing family-style communal space, including hearth, dining area and full kitchen (Rabig et al 2006). Research indicates that private single rooms in group facilities increase time spent alone, reduce irritability and improve sleeping patterns of people in the later stages of Alzheimer’s disease and other dementias (Morgan & Stewart 1998). Similarly, the quality of life of people with dementia living in special care units with home-like design features has been shown to improve as a result of decreased agitation, better sleeping patterns, greater freedom and increased appetite (Cioffie et al 2007). The provision of personal space such as private bedrooms with ensuites, small group seating arrangements, safe access to outdoor areas, a home-like kitchen and space to display personal items nurture the person’s sense of self (Donovan & Dupuis 2000). Greater opportunities for personalisation where the self is truly taken into account are necessary to create an environment that is more like home rather than just homelike in appearance (Calkins 1995). To be more like home, Calkins (2005) argues that environments need to be not only smaller in scale, but also have greater environmental texture, facilitate resident control and decision making, individualise care, encourage meaningful relationships, promote personalisation and provide unobtrusive clinical support. This requires a flexible, empathic approach that maximises residents’ freedom, encourages resident involvement in activities of daily living and minimises regimentation (Nagy 2002).
Private single rooms in group facilities increase time spent alone, reduce irritability, and improve sleeping patterns of people in the later stages of Alzheimer’s disease and other dementias.Meaningful activities not care tasks
Any health care setting itself, as a place to provide care for a group of people with different needs, can lead to everyday activities being focused on the interests of the organisation. To that end, behaviours are ‘managed’ and personal care becomes ‘tasks’ that are scheduled and ‘routinised’ for maximum efficiency using minimum resources. In residential facilities in particular, dressing, bathing, grooming and dining can be the most personally meaningful and comforting activities, but are often the first to be removed from an individual’s control — the very activities that can help reinforce the individual’s identity and sense of autonomy (Alzheimer’s Association 2007). The right physical environment for eating, bathing and personal grooming can help the person with dementia to use remaining capabilities and to support staff in providing assistance when it is required. For example, poorly lit, noisy, institutional-style bathrooms have been identified as the main reason for creating the fear and confusion residents often experience and for the difficulties staff experience with resident behaviours that this experience manifests (Sloane et al 1995). Design must consciously create a sense of calm and attempt to reduce risk, noise, glare and odour (Brawley 2002). Achieving appropriate bathroom design may incorporate: colour contrasting of the various interior surfaces, fixtures, and fittings; climate control with additional heating sources to provide supplemental heating for comfort; materials on floors, walls and ceilings that are suitable for wet areas that also reduce noise (e.g., acoustic ceiling tiles that are moisture, mould, mildew and bacteria resistance); fold-down handrails on both sides of toilets, and adjustable spray heads that accommodate various heights with a wand-type spray unit that reaches every corner of the bathroom (Davis et al 2008; Noreika et al 2002). The spatial position of the toilet in relation to the door and line of sight should be considered carefully to balance privacy against visibility cues. Clear visibility of a toilet increases its use (Calkins 2005; Namazi & Johnson 1991). Little details relevant to visibility of key support elements of the physical environment are often overlooked, such as towel rails and grab rails that colour contrast effectively with the wall for maximum visibility (Brawley 2002), or minor modifications to wardrobes and drawers that can facilitate accessing, selecting and sequencing clothes to assist the person to continue dressing with minimal assistance (Briller et al 2001). Even if facilities are unable to significantly change the physical environment, small touches such as pictures or decorative towels can soften some of the more institutional-type features (Calkins 2001).
Eating is a social experience that can continue as a source of satisfaction and pleasure even in the later stages of dementia (Davis et al 2009) and when mealtime is a pleasurable experience, it can lead to an increase in food intake and weight stability (Brush et al 2002). Cueing to entry and purpose of the dining room is important, particularly if the room has multiple uses. A large clock and a large-print sign, tablecloths and napkins and other specific sensory cues that identify mealtimes in the dining area help reduce confusion about mealtimes (Nolan et al 2002). The dining environment can be distracting because of a range of external stressors from décor through to excess noise levels (Roberts & Durnbaugh 2002), so use colours that encourage eating, appropriate lighting, and moveable screens to create smaller dining areas or more private areas for eating, as well as to reduce noise and distractions. Even hanging cloth partitions to eliminate views to ongoing activity has been found to reduce distractions by two-thirds, thereby increasing the ability of people with dementia (at all stages) to focus on a task (Namazi & Johnson 1992a). The function of any furnishing and fittings should be considered in the context of the experience of the person with dementia. Again, contrast is one of the key elements. Brighter lighting and heightened colour contrast (such as high contrast tablecloths, placemats, etc) have been found to improve food intake and reduce agitation (Day & Calkins 2002). Adjustable lighting can be beneficial so that it can be turned up at breakfast and down at lunchtime if there is ample natural light. Tabletops of wood or wood laminates are warm and familiar and a matte finish reduces glare. Specific features that enhance visibility define the eating area for the person with dementia, such as square tables and contrasting borders around the edges of tables.
When mealtime is a pleasurable experience, it can lead to an increase in food intake and weight stability.Family dining can be an important part of life in some cultures so consider arranging dining room furniture to emulate family-style dining, which has been shown to improve eating behaviour (Gotestam & Melin 1987), and increase communication and participation (Altus et al 2002). Kitchens are often the hub of the family home, so designs that have the kitchen opening directly on to dining areas provide visibility to encourage residents to participate in informal kitchen activities and permits ‘activity kitchens’ to be used to serve centrally prepared meals (Nagy 2002). Such design features provide a range of services and benefits including supporting the dining room, creating an ambience and use as a staff area, a more dementia-friendly feature than the traditional nurses’ station (Calkins 2005). A view from the eating area to a garden or other spaces such as the lounge room and a visual link to the kitchen is beneficial. As Davis et al (2009) point out:
The garden, the kitchen, the dining room, and other areas of the residential setting can provide opportunities for many activities associated with the broader eating experience that also generate spontaneous interactions and foster positive relationships between residents and staff.
The experience is not just confined to the meal on the table. The vegetable garden, favourite recipes, help preparing food, and table setting or cleaning up after the meal are all opportunities for the person with dementia to be involved if so desired (Zgola & Bordillon 2001).
Extending that line of thinking, activities comprise ‘the stuff of everyday life’ (Kuhn et al 2004), and the physical environment can provide opportunities for spontaneous activity for personal enjoyment and channelling behaviours of concern, such as rummaging, into activity that is not intrusive to others. A box of objects with different textures and colours or chest of drawers near a busy place in the facility or tucked away in a more remote corner (depending on the resident’s preference) can be an alternative option for rummaging activity that invades others’ privacy. Bookcases or shelves with books and small objects can serve a similar purpose for repetitive actions. A desk with paper, envelopes and other stationery or basic office equipment located in a public area can offer a range of potentially meaningful activities for residents, just as a table with artificial flowers, unbreakable vases, coloured paper, ribbon, water-based paints and paintbrushes will allow anyone to engage in artistic endeavours (Davis et al 2009). The environment needs to be designed to accommodate a range of abilities and experiences. In doing so, the importance of the person’s wealth of experience over the life course and their social and cultural history cannot be overstated. The current behaviour of the person with dementia needs to be understood in terms of the individual’s past life and experiences (Dewing 1999).
The environment needs to be designed to offer a range of abilities and experiences.Building relationships on strong foundations
Underpinning the social environment should be a philosophy of care that can support personhood. Personhood is a product of interaction and feedback between a number of factors, including personality, biography, physical health, neurological impairment and social psychology (Kitwood 1997). The self is presented through the perpetuation in the present; attributes from the past that confirm current ideas of the self (Gillies & Johnston 2004). Although the experience of dementia is often perceived as a steady erosion of personality and identity through the various stages until there is no recognisable person remaining, a body of evidence has developed that challenges this perception and that informs dementia care in a way that confronts traditional approaches. While many personal and social competencies of people with dementia may diminish, research indicates that the sense of self is preserved during dementia, though the ability to communicate it may be hindered (Li & Orleans 2002; Sabat et al 1999). The physical environment has the potential to provide a range of opportunities for that sense of self to be supported. Family pictures, personal furniture, ornaments and other personal items can reinforce identity. So, too, can design features that support the individual to retain their independence in dressing and personal grooming.
The physical environment has the potential to provide a range of opportunities for that sense of self to be supported.
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