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Guiding design of dementiafriendly environments inresidential care settingsConsidering the living experiences

S A N D R A D AV I S Monash University,Australia

S U Z A N N E B Y E R S Australian Centre for Evidence Based AgedCare,Australia

R H O N D A N A Y LaTrobe University,Australia

S U S A N K O C H LaTrobe University,Australia

Abstract In the past twenty years, the importance of the physical andsocial environments in supporting the person with dementia hasgained a much higher profile in dementia care. Despite efforts tomove aged care away from the medical model to a more balancedsocial model of care, we still struggle with the dominance of aninstitutional context which impedes individuality and choice. Thisarticle argues that the experience of the person with dementia shouldframe the perspective brought to built design and the philosophy ofcare – in essence, ‘looking out from the inside’. Shifting the emphasisfrom condition to experience encourages the culture change needed tocreate environments that allow the person with dementia to be anactive participant in everyday life rather than a passive recipient ofcare. Based on the development of a resource for residential andrespite facilities in Australia, seven living experiences are identified:the presentation of self-experience, eating experience, personalenjoyment experience, bedroom experience, family and communityconnections experience, end-of-life experience and the staffexperience. Each is discussed to show how consideration of the livingexperiences provides a way to focus thinking for design of the builtenvironment to practically support the person with dementia, therebyaddressing the wider spectrum of issues in creating a dementiafriendly physical and social environment from the perspective of theperson with dementia.

Keywords dementia care; long-term care; person centred; physicalenvironment; social environment

dementia

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Copyright © The Author(s), 2009. Reprints and permissions:http://www.sagepub.co.uk/journalspermissions.nav DOI: 10.1177/1471301209103250

Environments are continually being manipulated and modified tomaximise our comfort, personal and professional development andproductivity. For people with dementia the physical environment can helpthem achieve their full potential and avoid causing any unnecessary dis-ability (Marshall, Brown, Stewart, & Hoskins, 1999). However, the benefitsof even the best physical environment can be undermined if the structureof the organisation, the social and the physical environments are notworking together as a integrated system to support the unique needs andabilities of people with dementia and their caregivers (Calkins, 2002).Residential care is often viewed largely as ‘the passive provision of a safe,caring environment’ with the concept of residents ‘improving’ being diffi-cult to introduce in such a setting (Fleming & Kramer, 1995). Followingon from the development of models of care that are person-centred,practical applications have demonstrated that this is far from the truth(Cohen-Mansfield & Bester, 2006; Davis, 2006; Rabig, Thomas, Kane,Cutler & McAlilly, 2006). While the same environment can mean differentthings to different people, how our living environments are designed andbuilt has a significant impact on health and well-being. To achieve theappropriate fit of the physical and social environment to the person in orderto have lasting effects on resident outcomes, many elements need consider-ation (Teresi, Holmes & Ory, 2000). Until such time as cures are found,the best hope for people with Alzheimer’s disease and other dementias isto concentrate efforts on interventions to improve quality of life and to thisend, the environment plays a large part (Brawley, 1997).

Underpinning design: A definition of ‘dementia friendlyenvironment’

Despite efforts to move aged care away from the medical model to a morebalanced social model of care, we still struggle with the dominance of aninstitutional context, which impedes individuality and choice. A medicalmodel imposes a situation in which all functional difficulties andemotional states are attributed to brain damage and the impact of the socialworld in which the person with dementia lives is often discounted or over-looked completely (Cheston & Bender, 2004). Hence, the experiences ofpeople with dementia are commonly neglected. The need to expressfeelings, make choices and continue with a familiar lifestyle remains inpeople with dementia even though the ways in which such expressionoccurs may change (Sifton, 2005). However, they are seldom afforded theopportunity to explore their experiences (Aggarwal et al., 2003). Shiftingthe emphasis from ‘condition’ to ‘experience’ has the potential to facilitatethe culture change needed to create environments that allows the person

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with dementia to be an active participant in everyday life rather than apassive recipient of care.

Although elements of dementia friendly environments have beenclearly articulated in the literature, a definition has been conspicuouslyabsent. Such a definition should highlight both the importance of theexperiences of the person with dementia and the need to consider theorganisational, social and physical environments which impact on thoseexperiences. Hence, a dementia friendly environment can be defined as acohesive system of support that recognises the experiences of the personwith dementia and best provides assistance for the person to remainengaged in everyday life in a meaningful way.

Refocusing the design approach: Consideration of the‘living experiences’

Chalfont & Rodiek (2005, p. 347) argue that it is time to move beyonddesigning for the purpose of control, affect or to diminish behaviouraldifficulties and instead move toward understanding ‘how environmentsactively encourage pleasurable and satisfying behaviour, for everyone wholives or works within or near them’; an ecological approach to design thatencourages curiosity and engagement in every day activities. Recentresource development focused on the significance of understanding the‘experience’ of the person with dementia in everyday life for creatingappropriate environments (Davis, Byers, Nay, Koch, & Andrews, 2008).Seven fundamental ‘living experiences’ in residential care were identifiedthat warrant consideration in the creation of dementia friendly environ-ments in residential settings: the presentation of self, eating, personalenjoyment, bedtime, family involvement and community connections, staffand end of life. This paper highlights the ways in which these living experi-ences are conducive in developing dementia friendly physical and socialenvironments that enhance quality of life.

Living experiences

The presentation of self-experienceA common notion is that the loss of self is inextricably linked to thedeterioration associated with dementia. Yet, research specific to self-identity and dementia indicates that people with dementia maintain a senseof selfhood, even in advanced stages (Golander & Raz, 1996; Sabat & Harré,1992). However, the lack of recognition of the ‘persistence of self-identityin people with dementia’ by many residential care staff has an impact onthe process of care and overall well-being (Cohen-Mansfield & Bester,

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2006, p. 755). In examining the maintenance of self in the residential caresetting, Surr (2006) found that relationships with others (family, other resi-dents, staff), social roles (related to work, being part of a family, caring forothers/being cared for) and life stories (including selected life events andtelling of stories with symbolism) were all important for the maintenanceof self in that care setting. People with dementia can put together meaningin very basic everyday aspects of residential care – daily activities, socialinteractions, personalising their environment. In essence, ‘little things canmake a big difference in terms of how a resident with dementia feels abouthim or herself’ (Briller, Proffitt, Perez, Calkins, & Marsden, 2001, p. 150).

The residential setting, as a place to provide care for a group of peoplewith different needs, can generate everyday activities focused on theinterests of the organisation. Yet, every day activities often represent whowe are and what we are about. In residential care, many of the major liferoles disappear and are often not replaced by meaningful roles, so deter-mining the roles and relationships that were important to each resident(e.g. work, family, leisure) and creating opportunities for activities tosupport these roles is important. The cornerstone of understanding theperson in a residential facility is the collation of a social history. Socialhistory information allows staff to better understand individual behavioursand see the ‘person’ as well as providing insight into creating opportunitiesfor meaningful activities and continuing roles and interests. Surr (2006,p. 1729) suggests that ‘self in people with dementia should be consideredas a complex interplay between a number of social and biographical factors,including interpersonal relationships, the social context, and opportunitiesfor and abilities to tell stories.’ The physical environment can facilitate arange of opportunities for the self to be supported.

For example, the addition of small kitchen areas can provide oppor-tunities for many different everyday experiences that link the past andpresent. It is part of the physical environment that can easily generateshared experiences between residents, between staff and residents and staff,residents, families and friends. The ‘bus stop’, the ‘washing line’ and the‘old car’ – these are all features of the physical environment that can givemeaning to everyday life in a residential setting and have the potential tofacilitate structured or spontaneous interactions important in cultivatingpositive relationships. Similarly, opportunities for the person with dementiato maintain independence can be fostered with some thought to how theenvironment can support the individual’s remaining abilities. Setting upclothing in an accessible location and in the resident’s preferred order ofputting it on can support the person to continue to dress independently(Keane & Shoesmith, 2005). Installing handrails in hallways and usingorientation strategies can maintain more independence in mobility

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(Namazi & Johnson, 1992). Such independence is important for thepresentation of self.

All aspects of living in a residential facility, from personal care tocommunication, from breakfast to bedtime, from the garden to thebedroom, have the potential to support the presentation of self. Therefore,a dementia friendly physical and social environment is one in which thepresentation of self is a positive part of everyday life rather than an everydaystruggle to preserve self and social identity.

The eating experienceEating and drinking are just as much about being involved in social inter-actions and physical pleasure or expressing cultural or religious beliefs andfulfilling roles as they are about nutritional intake (Barratt, 2004; Brush,Meehan, & Calkins, 2002). However, within a residential setting eating isoften taken out of the usual context (Manthorpe & Watson, 2003). Food isa major component of a person’s sensory stimulation and can continue asa source of satisfaction and pleasure when other sources of gratificationoccur less frequently.

Many elements of the physical environment can have a positive impacton the eating experience. The wide range of potential changes to anyenvironment means there are options to improve the quality of the eatingexperience to fit all budgets, maintenance and modification schedules. Forexample, research has demonstrated the effectiveness of a large clock anda large-print sign identifying mealtimes in the dining area as a low costintervention that helps reduce confusion about mealtimes (Nolan,Matthews, Treesdell-Todd & VanDorp, 2004). Equally as simple inapproach, family style dining at small tables increases social interaction andimproves eating behaviour and increases communication and participation(Altus, Engelman & Matthews, 2001). Square tables clearly define eatingterritory and using tablecloths at mealtimes that colour contrast with dishesor place mats and floor covering can provide support in the eating experi-ence for people with dementia (Marsden, Briller, Calkins, & Proffitt, 2001).Increasing lighting, controlling glare and improving contrast can facilitateindependence, improve oral intake and functional abilities (Brush et al.,2002). The use of warmer, stronger colours in dining rooms encouragesconversation and interaction, and coral, peach or soft yellow are known toencourage eating (Brawley, 1997).

Thinking more broadly, the physical and social environment needs tosupport the view that the eating experience does not begin with the foodbeing put on the table (Zgola & Bourdillon, 2001). The vegetable garden,herbs in pots, planning the menu, getting a recipe, help in the preparationof food, setting the table, planning the menu, cleaning up after the meal:

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these are all opportunities for a person to be involved in different aspectsof making the eating experience, for someone with dementia, more thanjust a meal (Zgola & Bourdillon, 2001). A kitchen can be considered thehub of a residence providing a range of services and benefits includingsupporting the dining room, creating an ambience and use as a staff area(Calkins, 2005). Kitchens located adjacent to dining areas and public livingspaces have been successfully used to create homelike atmospheres in theresidential care setting (Nagy, 2002) and make the kitchen an appropriatereplacement for a nursing station found in more traditional settings(Calkins, 2005; Davis, 2006).

Similar broad considerations can generate innovative ways to addressindividual eating difficulties. For example, to maintain independence atmeal times or to increase food intake of those who are prone to walking,the introduction of a variety of finger foods can have a positive effect onthe eating experience (Zgola & Bordillon, 2001). While eating difficultiesmust be seen in their individual context, meaning comes from the socialenvironment (Manthorpe & Watson, 2003). For people with dementia, theeating experience can play an important part in maintaining and enhanc-ing quality of life. A wine before dinner can serve as a memory, appetiteand sensory stimulant. When mealtime is a pleasurable experience, it canlead to an increase in food intake and weight stability (Brush, Meehan, &Calkins, 2002).

Personal enjoymentPersonal enjoyment is an important component of well-being. Much of theresearch evidence suggests short term positive benefits can be facilitatedwith a range of therapeutic group and individual activities (Pulsford, 1997;Politis et al., 2004; Schreiner,Yamamoto, & Shiotani, 2005; Velde, Cipriani,& Fisher, 2005). Nevertheless, issues with participation in structured activi-ties undermine the benefits for people with dementia. Making activitiesmeaningful, failure-free and productive is fundamental to providingopportunities for residents to be able to draw on past roles and experiences(Brawley, 1997; Marsden et al., 2001). Put simply – ‘activities comprise the‘stuff’ of everyday life’ (Kuhn, Fulton, & Edelman, 2004).

Meaningful activities have been categorised in a number of ways thatillustrate the experience for the person with dementia. A useful way tobroaden the scope is to consider them in the context of ‘lifestyle activities’that include domestic, artistic, outdoor, reminiscence, individual and socialactivities (Grealy, McMullen, & Grealy, 2004). Another to include is‘intimacy’. Intimate relationships and sexual expression are commonlyoverlooked as personal enjoyment for people in residential care, par-ticularly if the person has dementia. Sexuality is central to identity and

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well-being, yet contemporary practice often ignores the sexual needs,interests and rights of older people (Nay, 2004). People with dementiaexpressing sexuality tend to be generally cited in biomedical debates andlargely framed as problematic. Similarly, literature on care giving, intimacyand dementia also tends focuses on the problematic, with discussionframed around ‘managing’ such behaviours, as opposed to any discussionabout the positive aspects and the facilitation of sexuality for people withdementia (Ward,Vass, Aggarwal, Garfield, & Cybyk, 2005). While staff andfamily seem discomforted or dismissive of the sexuality of residents, sexu-ality appears to be of importance to a considerable number of older resi-dents (Murgatroyd, 1998). A lack of privacy and being confronted bynegative attitudes are common barriers to sexual expression (Kessel, 2001;Hajjar & Kamel, 2004). Just as the physical environment can supportintimacy by providing private spaces, so the social environment can fosterthe acceptance of intimacy through education and awareness-raisingamongst staff, families and residents.

The physical environment can be designed or modified to encouragespontaneous personal enjoyment. A desk with paper, envelopes and otherbasic office equipment located in a public area can offer a range of poten-tially meaningful activities for residents. A table with some artificialflowers, unbreakable vases, coloured paper, ribbon, paints and brushesallow anyone to engage in artistic endeavours. Outside areas are betterutilised if they are an integral part of the everyday environment (Chalfont& Rodiek, 2005), so plants and garden features around windows, clearviews of garden paths through easy access doors, raised garden beds,moveable potting tables and garden seating are all elements that canencourage spontaneous outdoor activities and increase residents’ optionsfor activity, privacy or social interaction (Marsden et al., 2001; Pollock,2001; Perez, Proffitt & Calkins, 2001). A little imagination and knowledgeof residents’ social histories allow the creation of many different ways forresidents to participate in activities that can bring personal enjoyment andhave a positive impact on identity.

Being able to get around independently in the environment is often anissue for people with dementia that impacts on personal enjoyment. Thephysical environment can actually help the person with dementia to getaround the residential care setting while maintaining safety. Effective cuescan be landmarks, ‘neighbourhood’ decorating schemes, sculpture, paint-ings, or architectural features such as personalised doorways, changes inlighting levels and changes in floor surfaces (Brawley, 1997; Davis et al.,2007). Walking paths can be designed to link smaller spaces with largerspaces, inside and outside and clearly defined paths can assist residents tofind their way (Bennett, 2006). Variables that influence a person’s ability

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to find their way around differ between the various types of design for resi-dential settings but regardless of type, the key is to determine the mean-ingful decision points that might assist a resident finding their way (Netten,1989). While a person with dementia can be at risk because of their impair-ment, they must be able to live their life and do as much as they can. Whena person does not use their abilities they start to fade and options forenjoying life diminish. It is important that this does not happen prema-turely because they are being ‘protected’. The environment needs to bedesigned to support a range of abilities and experiences to maximisepersonal enjoyment.

The bedroom experienceImportant elements of everyday life can be lost in the regime of the longterm care setting. When to get up, how to arrange the furniture in theirroom, when to be alone, when to go to bed – these taken for granted buthighly valued every day life activities are often out of a residents’ control.Providing control in relation to all bedroom activities is therefore a goodstarting point.

Personalising the bedroom is a significant feature of a dementia friendlyenvironment in a residential setting. To bring treasured possessions andfurniture to make it feel more familiar is commonly identified as the way to make the resident feel more comfortable (Marsden et al., 2001).Personalising should also include a choice of three to five paint colours forbedrooms from a range of apricot, peach, sunny yellow or any of a varietyof warm earth colours (Cooper, 1994; Burke, 2005; Brawley, 2006). Yetthese physical aspects do not fully capture the significance of personalisingthe bedroom. It is a way of involving family and the person with dementiain creating the home atmosphere that is the best fit. This, in turn, providesresidents with some sense of ownership of the space. It is also a way forstaff to get to know the resident, encouraging engagement in spontaneousinteractions, thereby fostering relationships between staff and residents.Family pictures, the furniture selected from their home, the paint colourschosen and the personal items – all these things provide information aboutthe person and are a consistent reminder to staff that this person brings alifetime of experiences that underlie their understanding of their world atthis time in their life.

Design should consider that sleeping and dressing are not the onlyactivities residents complete in the bedroom. Reading, a chat with a friend,sexual activity or having coffee and toast in the morning; these and manyother options can be accommodated. Design should seek to prevent falls,make it easier to find the toilet at night and enable a person who likes toget up and walk around at night, to do so in safety. The bedroom should

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have a distinct entrance that is meaningful to the resident, plenty of spaceto move around the bed, good natural lighting and ventilation, includeboth task and overhead lighting, carpet on the floor, appropriate clothingstorage and direct access to the ensuite (Bourgeios, 1993; Perez et al., 2001;Nolan, Matthews, Truesdell-Todd, & VanDorp, 2002; Noell-Waggoner,2002). Space within the room should also respond well to changes in func-tioning over time. As dementia progresses, the experiences of the personwith dementia will change and in turn, the ways in which the physicalenvironment supports the person need to change. Modification of thephysical environment should continue to be considered in order to supportthe person and maximise their remaining abilities. It should continue tobe a supportive private space that reflects the person, not the condition.

The family involvement and community connectionsexperienceOngoing family involvement and community connections are essential forthe creation and sustainability of a dementia friendly environment. Resi-dential care facilities are themselves ‘communities’ and yet are generallyviewed in a negative light by virtue of past models of institutional care andnegative stereotypes of frail older people. They are not seen as inviting orpleasant places to go. This impacts on both family involvement andcommunity connections experiences.

Family members have a particularly important role because they ‘knowof the past person who happens to have dementia and interpret their futurein relation to that knowledge, seeking to value the individual and minimisethe intrusiveness of the dementia’ (Clarke, 1999, p. 717). A move into aresidential setting should not mean that their life together should be re-linquished. To encourage ongoing involvement it is important to rememberthat it is much easier for family to comfort, encourage and nurture thepeople they love ‘if they feel comfortable and nurtured themselves’(Brawley, 2006, p. 67). This comes from a physical and social environmentthat is inviting to family and friends that makes room for them and makesthem feel at home. Therefore, staff-family relationships are extremelyimportant. Organisational systems and management practices can eitherinhibit or cultivate productive staff-family relationships (Bauer, 2006).Cooperative staff and family activities that facilitate learning and under-standing are beneficial to the development of positive relationships that canonly enhance the quality of life for the resident (Haesler, Bauer, & Nay,2006). Families want to be acknowledged and asked to participate in thecare of their relatives. If asked to participate in what they see as positiveavenues, they may be more satisfied with the level of care being providedby the home (Tornatore & Grant, 2004). To encourage family involvement

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it is appropriate to target activities in relation to the maintenance of familystability (family structure and behaviour patterns) and connectedness(family system attuned to its environment) (Haesler, Bauer, & Nay, 2006).

Components of a physical environment in residential care settings thatsupport ongoing relationships between residents, family and friends andfoster the development and maintenance of positive relationships betweenstaff and family members need serious consideration. The built environ-ment should be relaxing and positive and encourage relatives and friendsto remain involved (Kidd, 1997). A homelike physical environment is onein which family can be involved in everyday activities with residents –activity kitchens, small dining rooms or small eating areas inside andoutside, areas for recreation, quiet private areas for residents and family aswell as family and staff. Just having extra spaces in dining areas so thatvisitors around mealtimes can be invited to stay adds another dimensionto family involvement. Staff and residents eating together has also becomea fixture in some dementia friendly models of residential care, with resi-dents having the option of inviting guests to eat with them being a naturalextension of the family atmosphere (Cohen-Mansfield & Bester, 2006;Rabig et al., 2006). Including areas inside and outside for children to playencourages families to bring children to visit more often. The increasinguse of assistive technology will see the advent of access to technology suchas video-phones and video-link to allow distant family and friends to keepin touch and see the resident.

While family are usually the primary link to life outside in thecommunity for the person with dementia (Janzen, 2001), there is also the potential for a robust relationship between residents and life outside inthe community that is facilitated by the inclusion of the residential carefacility as part of that wider community. Regular community involvementis important to enhance residents’ quality of life, to improve quality of careand to increase the level of understanding in the community about theissues and complexities of residential care. In addition, people withdementia can have ongoing opportunities to contribute to the community.

Maintaining community connections for people with dementia inlong-term care facilities is not a new idea. Common strategies includeshopping trips, attending local events, pet visiting and volunteer visitorsprograms to name a few. However, innovative community connectionsrequire broader thinking in terms of making the residential facility a partof the community. Whether modifying existing buildings or designing anew facility there is a general lack of consideration about how the physicalenvironment can make the residential care facility a more vital part of thecommunity. For example, if day care in short supply in the area perhaps achildcare centre can be co-located. Include a coffee shop in the design that

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can draw in facility residents, staff, family, visitors and local communityresidents. People with dementia should have the opportunity to maintainlinks with organisations or community groups to which they used tobelong, so consider space to hold meetings in the residential facility. Bycontacting local businesses, community groups, schools, peak organis-ations and advertising in the local paper, any residential facility can engagethe community to work with staff and residents to look for ways to makethe residential care facility part of the community. The main obstacle is lackof imagination.

The staff experienceThe practical application of any model of care under the umbrella of theperson-centred approach can be undermined by a lack of clear understand-ing about person centred care. Recent appraisals suggest that the originalvision of person centred care has been lost in common usage of the termand it is nothing more than a political slogan to identify a user-orientedapproach to care (Nolan, Davies & Brown, 2006). In their discussion of arelationship-centred approach to care, Nolan et al. (2006, p. 9) provideinsight into the key elements that should be experienced by both residentsand staff in order to achieve high quality care, advocating for a ‘SensesFramework’ which focuses on supporting all individuals (residents, staff,family/friends, etc.) in the care setting. This work highlights two of the keyelements of the original conceptualisation of person centred care that have,over time, dissipated with the uptake of the term itself in policy andpractice. In the first instance, it brings back to attention the relationship asthe foundation of the approach to care. Second, it highlights the need fora person-centred approach to care to be all inclusive. Staff members areoften overlooked as full participants in the social system we call the resi-dential care setting, and instead are seen as merely part of the structure ofcare delivery. What we know about the importance of relationships topersonhood, and the maintenance of identity, clearly signals the role ofstaff. What we often forget however is that staff and residents share signifi-cant everyday life experiences.

The organisational work climate has influence on the quality of care(Matthiasson & Andersson, 1995). The traditional organisational structuredoes not lend itself well to the person-centred approach (Zimmerman et al., 2005). The standard hierarchy of management in an organisationwill make it very difficult for direct care staff to deliver person centredcare. The staff experience of ‘challenge and meaningfulness in work’ aswell as concern to maintain and contribute to quality care are fostered inmore creative organisational climates (Norberg, Hellezén, Sandman, &Asplune, 2002). This includes staff participation in planning and design.

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Redistributing authority and responsibility with a flattened organisationalstructure empowers direct care staff to respond more effectively to resi-dents’ needs (Chenoweth & Kilstoff, 2002). Flexible management struc-tures have proved to be successful in generating dementia friendlyenvironments for people with dementia (Cohen-Mansfield & Bester, 2006;Rabig, Thomas, Kane, Cutler, & McAlilly, 2006).

Any physical environment will be sending staff a message and it can bea powerful influence on attitudes and the approach to care. The physicalenvironment should allow staff to work safely, effectively and to sharenaturally in the everyday life experiences of residents. Organisations canalso send a clear message that acknowledges staff needs and their value tothe organisation by providing a quiet, comfortable area for staff to rest, aconvenient work area and storage area for personal belongings (Brawley,2006). Thoughtful design, based on dementia friendly principles, willbenefit staff in terms of work practices, workloads and workplace safety.This does not mean waiting for significant modifications or new buildingsbefore considering physical changes. Some changes to the physicalenvironment can be simple and effective such as positioning storage areasand work areas so that members of staff have clear visual access to the resi-dents. Modifying storage space areas can reduce the time wasted by staffwalking from one place to another, accessing equipment and so on.Ensuring safe walking areas for residents will reduce staff need for constantobservation and intrusion on residents. Most importantly both the physicaland social environment should foster and support the relationshipsbetween staff, residents and family/friends. The physical design of ‘home’facilitates a person centred approach to care. This is in stark contrast to aninstitutional-style setting in which physical features support a medicalmodel of care. As Brawley (1997, p. 159) states, ‘different parts of thecountry and different cultures may designate household rooms differently,but almost no one grew up with a day room or a nurse’s station as part oftheir traditional home environment’.

Good person-centred care encompasses the staff as well as the residentsand families. The challenge is to provide an organisational, social andphysical environment that maximises the quality of life for people withdementia and staff well-being and morale.

The end-of-life experienceEnd-of-life care for those with dementia living in the residential caresettings raises some specific concerns. Dementia does not necessarily followa predictable course and nearness to death is difficult to predict. The personmay be dying from the complications of severe dementia and have a slowdecline, with death anticipated over weeks or months. People with

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dementia who are terminally ill often suffer from multiple ailments withas high as 91% having a co-morbid condition (Moss, Braunschweig, &Rubinstein, 2002). The resident with dementia is likely to have troubletelling anyone where it hurts, or that the pain comes and goes at particu-lar times – or that they just do not want to eat any more (Cox, Gilhooly, &McLennan, 1997). Furthermore, often residents who have advanceddementia and are dying are not perceived as having a terminal conditionand therefore do not receive optimal palliative care (Mitchell, Kiely, &Hamel, 2004). As a result, people with dementia dying in long-term caremay have unmet needs ranging from pain relief and emotional support tobeing treated with respect. Specific design principles that can ease the dyingtrajectory in the final stages of dementia are often overlooked.

Privacy, space and familiarity are important components of the physicalenvironment in the end of life experience (Kaysor-Jones et al., 2003). In adementia friendly environment, the residents’ bedroom should alreadyprovide a personalised, private space in which family pictures, favouritepillows, blankets and other personal items provide familiarity and comfort.Where it is necessary to move the resident to another location, ensure thatsuch personal items are made available. A private, quiet environment inwhich family can stay with a dying relative is essential, with comfortablechairs and a space for a family member to sleep or even a family room closeby. Other private areas in the garden or elsewhere in the home can be madeavailable for families and friends to share time with the person dying. Spacefor family counselling, time-out, coffee/tea and readily accessible equip-ment that supports ease of movement, pain relief and respiratory supportare just some of the design considerations to support the end-of-lifeexperience.

The majority of people are likely to define death in a clinical or biologi-cal sense but ‘social death’ (the point at which a person ‘dies’ in the socialsense), can have a greater impact. This idea of ‘social death’ can be signifi-cant when the person has dementia, as it is often the point at which othersstop behaving as they would towards a living person (Cox, Gilhooly, &McLennan, 1997). As families and friends struggle with this, members ofstaff need to recognise the impact that this perception can have on thequality of end of life care. The palliative approach is a natural extension ofthe person-centred approach to care, with a goal of trying to achieve thehighest quality of life possible during the time remaining the approach hasthe flexibility to address the varying individual needs of residents (Brawley,2006; Australian Government Department of Health and Ageing, 2006). Aperson-centred approach to care demands that living is presumed and theperson living and dying with dementia is accorded respect, dignity sensoryand cultural support right up until clinical death is pronounced and the

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family have completed culturally relevant rituals within the facility. So toensure excellence in palliative care, it is essential to provide support foradvance care planning, expert symptom management, care for psycho-logical and spiritual suffering, and bereavement services for family and staffcaregivers (Hanson & Ersk, 2006). The sensitivities towards the dyingprocess in other settings need to be extended to residential care and theimportance of the physical and social environments to the end-of-lifeexperience needs to be recognised.

Conclusion

In recent years, new models of long-term care have been developed thatshow why the dominant medical model framework is not suited to creatingthe kind of ‘enriched environment’ (Nolan et al., 2006) essential for qualityof life and quality of care for people with dementia. New concepts in thebuilt environment, person-focused philosophies of care and an increasingunderstanding of the ‘experience’ of dementia has lead to viable alterna-tives in long-term care provision.

The person experiences living with dementia: they do not experiencethemselves and the physical and social environments as separate. Rathereach is in relationship with the other. The physical environment cansupport or obstruct social interaction and a sense of self. It can allowmaximum independence or force dependency upon the residents. Equallyor more importantly the philosophy of the home can reduce the impact of the best in environmental design. Hierarchical management, over-protective risk management, infantilisation of residents and marginalisingfamilies all work counter to dementia friendly physical environments. Onthe other hand visionary leadership, creativity and open, collaborativeapproaches to care can compensate significantly for otherwise inappropri-ate physical environments. However, a recent qualitative study examiningthe impact of moving residents from a more traditional dementia-specificenvironment to a purpose-built more homelike environment with manydementia friendly features suggests the physical environment can have apositive impact on the social environment (Cioffi et al., 2007). The authorssuggest that new arrangements for serving food, increased comfort ofrelatives with visiting and better access to staff are signs that the physicalenvironment is influencing social interactions in a different way than theprevious environment. There is no doubt that a well-designed physicalenvironment can make these and other elements of the social environmenteasier to implement and maintain but we need to be mindful that manyinvolved in the provision of dementia care still struggle with culture changein moving beyond the ‘condition’ of dementia in the creation of the built

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environment and the implementation of person-centred care to underpinthe social environment. Consideration of ‘living experiences’ provides away to focus thinking, to link the plethora of information about the builtenvironment to practically support the person with dementia and toaddress the full spectrum of issues in creating a dementia friendly physicaland social environment.

AcknowledgementsThe resource from which this paper was based, Creating Dementia Friendly Physicaland Social Environments for Residential and Respite Settings, was developed withfunding from the Victorian Department of Human Services, Rural and RegionalHealth and Aged Care Services, Melbourne, Australia.

The late Professor Gary Andrews was part of the consultancy team developing thisresource at the time of his death, May 2006. We gratefully acknowledge thesignificant contribution made by Professor Andrews in the development of theresource and express our admiration for his extraordinary lifelong contribution togerontology.

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Bibliographical notesS A N D R A DAV I S , BA, PhD is a social gerontologist, starting her career at the Centre for

Social Gerontology, Keele University. Following her position with the Centre forAgeing Studies (Flinders University) overseeing Wave Six of the AustralianLongitudinal Study of Ageing and six years as Deputy Director of the Centre forApplied Gerontology in Melbourne, Sam is now with School of Rural Health,Monash University, developing rural ageing research. Address: School of RuralHealth, Office of Research, Monash University, PO Box 666, Bendigo,Victoria,3552, Australia [email: Sam.davis@med.monash.edu.au]

S U Z A N N E B Y E R S , BSc was a researcher with the Centre for Applied Gerontologybefore moving to the Australian Centre for Evidence Based Aged Care. She wassenior research officer on the project to develop the Handbook for CreatingDementia Friendly Physical and Social Environments in Residential and RespiteSettings. Suzanne is now with the Victorian Department of Human Services.

R H O N DA NAY, RN, PhD, FRCNA, FCN(NSW) leads the TIME for Dementia StudyCentre for Victoria and Tasmania, Director of the La Trobe University GeronticNursing Clinical School; Co-Founder and Director of the Australian Centre forEvidence Based Aged Care; a fellow of the Royal College of Nursing and theAustralian Association of Gerontology; and a consultant to the InternationalCouncil of Nurses. Rhonda has significant expertise in Australian residential andrespite care settings and sits on the Aged Care Accreditation and Standards AgencyBoard, is currently a member of the National Advisory Committee on Ageing(Australia); the Clinical Governance Committee AUSeMED and an Expert Advisorto the International Council of Nurses.

S U S A N KO C H, RN, BA Ed. Studies (Stirling), Master of Nursing (Research) (RMIT),PhD (La Trobe) is the Director of Nursing Research at the La TrobeUniversity/Alfred Hospital Clinical School; Director of Collaborations at ACEBAC; afellow of the Australian Association of Gerontology; Chair of the Royal College ofNursing, Australia and president of Alzheimer’s Australia Vic. She has vastexperience in conducting funded research and consultancies in a range of areasrelated to quality institutional aged care.

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