Background
Understanding and supporting transitions is central to social and health care and research, in recognition that it is during times of significant change that people require the most support. Transition has been studied in a broad range of disciplines, particularly in relation to life phases, stages and changes. Across anthropology (van Gennep, [1919] Reference van Gennep1960), management (Bridges, Reference Bridges2009) and nursing (Meleis, Reference Meleis1975, Reference Meleis2010), transitions are usually characterised as having three distinct phases: ending, limbo and new beginning. The first phase of transition has been variously described as separation (van Gennep, [1919] Reference van Gennep1960), letting go (Bridges, Reference Bridges2009) and rupture (Storø, Reference Storø2017); it is a time of increased uncertainty, anxiety and lack of security. The second phase is characterised as one of confusion (Bridges, Reference Bridges2009) and passage (Chick and Meleis, Reference Chick, Meleis and Chinn1986), and has the potential to be experienced as a time when identity unravels (van Gennep, [1919] Reference van Gennep1960). The final stage involves re-establishing a new identity and a sense of security (Turner, Reference Turner1967). Over time, a lack of consensus has emerged around this linear conception of the transition process, with some arguing that transition is instead cyclical and ongoing, and others arguing that one transition always intersects with another (Zittoun, Reference Zittoun, Valsiner, Molenaar, Lyra and Chaudhary2009; Storø, Reference Storø2017; Smith and Dowse, Reference Smith and Dowse2019). This complexity resonates with the most cited definition in the health and social care literature:
[Transition is] a passage from one life phase, condition, or status to another … transition refers to both the process and the outcome of complex person–environment interactions. It may involve more than one person and is embedded in the context and the situation. (Chick and Meleis, Reference Chick, Meleis and Chinn1986, p. 239)
In this paper, we investigate how the concept of transition is experienced by people with dementia and complex support needs. The lived experience of dementia involves a range of personal, social, health and care-related transitions (Kind and Gilmore-Bykovskyi, Reference Kind, Gilmore-Bykovskyi, Downs and Bowers2014; Hirschman and Hodgson, Reference Hirschman and Hodgson2018). These transitions pivot around critical moments which require a significant adjustment of identity and agency, like diagnosis (Swaffer, Reference Swaffer2015), driving cessation (McKillop, Reference McKillopnd) and – most frequently – physical transitions, like moving from and between home, hospital, residential care and palliative care settings (Fortinsky and Downs, Reference Fortinsky and Downs2014). However, despite the predictability of many of these transitions, there is limited research on how these ‘moments’ or ‘movements’ are experienced by people with dementia or their needs during these times (Hirschman and Hodgson, Reference Hirschman and Hodgson2018). This is especially true for people with dementia and complex support needs, in particular during end-of-life and palliative care which have been highlighted as important times of transition (Fleming et al., Reference Fleming, Kelly and Stillfried2015), but underresearched (Young et al., Reference Young, Lind and Orange2021).
Strategies and supports for transitional care of people with dementia are significant both because people with dementia experience more transitions than those without the condition (Aaltonen et al., Reference Aaltonen, Rissanen, Forma, Raitanen and Jylhä2012, Reference Aaltonen, Raitanen, Forma, Pulkki, Rissanen and Jylhä2014; Callahan et al., Reference Callahan, Arling, Tu, Rosenman, Counsell, Stump and Hendrie2012, Reference Callahan, Tu, Unroe, LaMantia, Stump and Clark2015) and because transitions represent particular challenges for people with dementia. Transitions are considered dangerous times for people with dementia, with increased risk of falls, fractures, seizures and infections (Kind and Gilmore-Bykovskyi, Reference Kind, Gilmore-Bykovskyi, Downs and Bowers2014) and higher levels of anxiety and depression (Sury et al., Reference Sury, Burns and Brodaty2013). People with dementia require more support to adapt to stressors or frequent change (Gilmore-Bykovskyi et al., Reference Gilmore-Bykovskyi, Roberts, King, Kennelty and Kind2017). Immediately after a significant physical transition, people with dementia are more likely to experience disorientation and loss, confusion and loss of control, and increased vulnerability (Thein et al., Reference Thein, D'Souza and Sheehan2011; Aminzadeh et al., Reference Aminzadeh, Molnar, Dalziel and Garcia2013). However, the limited research about experiences of transition from the perspective of people with dementia suggests that it is the psycho-social aspects of transition, rather than its physical nature, that is significant (Young et al., Reference Young, Lind and Orange2021). As with older people in general (Tanner et al., Reference Tanner, Glasby and McIver2015), even when transitions are planned, people with dementia often feel like they are excluded from decision-making processes, and it is both the decision and the relocation into a different environment that amplifies impairment affects, and experiences of loss of independence, agency, sense of control and connection, particularly when people need to move home (Aminzadeh et al., Reference Aminzadeh, Dalziel, Molnar and Garcia2009, Reference Aminzadeh, Molnar, Dalziel and Garcia2013).
Transitional supports for people with dementia
While transitional care interventions have been found to improve outcomes for other frail older-age patients (Naylor, Reference Naylor2012), people with dementia have also been frequently excluded from much intervention research in transitional care (Kind and Gilmore-Bykovskyi, Reference Kind, Gilmore-Bykovskyi, Downs and Bowers2014). What does exist has tended to focus on interventions to postpone, prevent or reduce health-care transitions. As such, transitional supports for people with dementia have focused on increasing support around formal health-care exit and entry points (intake, patient journey and discharge) (Villars et al., Reference Villars, Dupuy, Soler, Gardette, Soto, Gillette, Nourhashemi and Vellas2013; Kuske et al., Reference Kuske, Graf, Hartig, Quasdorf, Vollmar and Bartholomeyczik2014; Gilmore-Bykovskyi et al., Reference Gilmore-Bykovskyi, Roberts, King, Kennelty and Kind2017).
There is a smaller body of research focused on person-centred interventions when transitions are necessary (Hirschman and Hodgson, Reference Hirschman and Hodgson2018; Young et al., Reference Young, Lind and Orange2021). Despite the challenges, transitions can provide a useful opportunity to reflect on person-centred processes and planning (Kind and Gilmore-Bykovskyi, Reference Kind, Gilmore-Bykovskyi, Downs and Bowers2014). These strategies dovetail into evidence-based practice on person-centred care planning and continuity of care for people with dementia, which includes putting the person with dementia's story at the centre of planning processes (Brodaty and Seeher, Reference Brodaty, Seeher, Waldemar and Burns2017), enabling choice and goal setting where possible (Sury et al., Reference Sury, Burns and Brodaty2013), facilitating clear and collaborative communication with care partners (Rose and Palan Lopez, Reference Rose and Palan Lopez2012), and establishing inter-professional teams with expertise in dementia to work during and between transition sites (Gilmore-Bykovskyi et al., Reference Gilmore-Bykovskyi, Roberts, King, Kennelty and Kind2017).
When transitions have been examined from the perspective of people with dementia, they emphasise the importance of the preservation and support of a sense stability (Aminzadeh et al., Reference Aminzadeh, Molnar, Dalziel and Garcia2013). This is particularly the case when people are permanently leaving their home and entering residential aged care, a time characterised by grief and loss (Aminzadeh et al., Reference Aminzadeh, Dalziel, Molnar and Garcia2009). Preliminary principles for care during transitions to long-term care include: support based on unique and individual contexts; validation and acknowledgement of both positive and negative transitions; including people with dementia in transition through support for shared decisions; encouragement of regular social contact with family and friends; and support to integrate socially into new settings (Young et al., Reference Young, Lind and Orange2021). These principles not only indicate a need for increased intensity of person-centred support during transition, they also indicate that fostering a sense of stability and connection during change is crucial to transitional care. Tangible objects which travel with people with dementia are one potential way of providing this stability and connection.
Based on the literature on transition, in general, and transitions for people with dementia, in particular, this study assumed that people with dementia and complex support needs would find the large physical transition from one physical home to another difficult. By using the terminology ‘dementia and complex support needs’, we draw from work on disability that recognises that when there is a depth and breadth (Rankin and Regan, Reference Rankin and Regan2004) of need, a different kind of support is necessary, particularly around change and transition (Smith and Dowse, Reference Smith and Dowse2019). Complex support needs do not only include multiple disabilities, such as cognitive impairment, physical impairment and psycho-social impairments, complex support needs also refer to forms of social disadvantage that compound the impact of these impairments (Smith and Dowse, Reference Smith, Dowse, Ellis, Garland-Thomson, Kent and Robertson2018). For people with dementia and complex support needs, such social disadvantage might include social isolation, institutionalisation and ageism. In line with inter-disciplinary understandings of transition, we wondered whether people with dementia and complex support needs would both experience the impact of this large physical transition in phases (potentially the three phases described as ending, limbo and new beginning) or whether these phases might not capture the complex support needs in their lives (Smith and Dowse, Reference Smith and Dowse2019).
Objects to support transitions
Some researchers have found that attachment to objects can be useful for supporting the transitions of people with dementia and complex support needs. Originally, Winnicott (Reference Winnicott1953) used the concept of ‘transitional objects’ to explain how children form attachments to objects to provide them with comfort and security as they physically and emotionally move away from a parent or primary carer. In other words, their use of the objects may be an ‘external sign of an internal process’ (Winnicott, Reference Winnicott1953). Miesen (1993) has argued that attachment theory can equally be applied to people with dementia, explaining that when people with dementia feel unsafe and threatened they express a need for attachment, e.g. when a person with dementia shows attachment to a doll. Loboprabhu et al. (Reference Loboprabhu, Molinari and Lomax2007) have argued that objects can provide an ‘anchor’ and comfort for people with dementia and complex support needs during a time when they may feel uncertainty and confusion as part of their transitioning to more dependency – particularly when that object has tactile and soothing qualities, like textiles, toys, blankets or items of clothing. Stephens et al. (Reference Stephens, Cheston and Gleeson2013, p. 708) described transitional objects for people with dementia in residential care as ‘help[ing] … by being something tangible that represents an attachment figure or figures when internal representations may be elusive’. Recent work by Kenning and Treadaway (Reference Kenning and Treadaway2018) did not find that personalised blankets for people with late-stage dementia exactly mapped on to Winnicott's work on transitional objects. However, the blankets did provide comfort and, in line with the principles of transitional care (Young et al., Reference Young, Lind and Orange2021), they supported connections with family and friends, and supported the person with dementia to feel more anchored in their new setting.
In this study we build on this work, creating objects with and for people with late-stage dementia to support them as they moved from one residential aged care facility to another. Drawing on the principles of transitional care of Young et al. (Reference Young, Lind and Orange2021) and the work on transitional objects for people with dementia (Kenning and Treadaway, Reference Kenning and Treadaway2018), we hypothesised that giving people personalised objects would offer an anchor, comfort and stability in a time of change.
Method
Study design
This study was undertaken as part of a larger Participatory Action Research (PAR) project about Care Connections for people with dementia in residential aged care, in the context of people living in residential aged care being moving from one residential facility to another. PAR projects often involve cycling through three stages: (1) observing and planning, (2) acting, and (3) observing and reflecting (Bradbury and Reason, Reference Bradbury and Reason2003). In Stage 1 of the project we found that the support needs of people with dementia, particularly those with higher or more complex needs, had not been considered in the plans for the move to the new facility (Smith and Phillipson, Reference Smith and Phillipson2020). This led to Stage 2, the action phase, which involved collaborating with a local social enterprise to co-create personalised scarves and blankets which could act as objects to support transitions for people with dementia and higher support needs (Smith and Phillipson, Reference Smith and Phillipson2020). This paper reports on the findings of Stage 3, which aimed to observe and reflect on the impact of the use of these objects on participants’ connections in care. As this was a planned transition, we were able to make these observations and reflections across the phases of the planned transition: before (in Site 1), during (in both Sites 1 and 2 and as people and their belongings were packed up and transited) and after (the arrival and settling in the new facility (Site 2)).
A structured observation schedule and ethnographic methods (interviews, photographs and observations) were used to understand how they engaged with the scarves and blankets and whether they supported the principles of transitional care (Young et al., Reference Young, Lind and Orange2021) for people with dementia in long-term care. This includes acknowledging transitions, supporting people with dementia to make decisions, encouraging social contact and supporting social integration into a new setting.
Recruitment and consent
The study was conducted in a residential aged care facility in a small coastal regional town in New South Wales, Australia. Only residents living in the secure (locked) dementia ward for people with complex support needs were included. This project followed the five steps of Dewing's (Reference Dewing2007) process consent method. Firstly, family members of people in the dementia ward were contacted by the aged care facility by phone and informed about the study through verbal and written information. Family members who agreed had their contact information passed on to the researchers who explained the project either via email, phone or in person. Written proxy consent was provided by the family member. In this case, the complex support needs of people with dementia meant that their capacity to provide informed consent was illuminated. Instead of informed written consent, the researchers (who all had experience working with people with cognitive disabilities and/or dementia) also carefully monitored participants for signs of assent and dissent, such as eye contact, anger or agitation during the co-creation process. Signs of dissent (going to their own room when we arrived, avoiding eye contact and simply saying ‘no’) by two potential participants meant that they were not included in the study, despite proxy consent being attained. Feedback was provided to staff and family members around how to support participants to use their scarf and blankets in ways they enjoyed.
Participants and research setting
The study was conducted with residents in the locked dementia wards on the two sites: in the old residential aged care facility (Site 1) with participants then moving to a newly built residential aged care facility (Site 2) at the end of the study. Site 1 was the site for the co-creation of the objects. It was an older brick building, and the dementia ward (the research setting for this study) was separate and locked so that participants could not leave on their own. Entry to the ward was through the locked doors into a hospital-like corridor with four rooms on either side. This opened on to a light-filled communal area. To the right-hand side was a dining room with a window on one side looking on to a lovely (but inaccessible) garden. The back wall was a mural of a sitting area and there was a small door which was often locked that led out on to a path that allowed people to walk around one end of the building. At the opposite end, beyond the gated nurses’ station, was a lounge area, with softer upholstered chairs – vinyl like those found in a hospital waiting room – positioned around its perimeter. There was a television, high on the wall, behind a piano which precluded access to the residents. A large courtyard was accessible through a glass door in the living area. The courtyard had empty raised beds and an empty chicken run but you could see it had been a lively space. Sparrows often flew in and out of the open door. Residential rooms – which included single and double rooms with shared bathrooms – were along a horseshoe corridor behind the living area. All were sparsely furnished and included few, if any, individual possessions.
Site 2 was a brand new residential aged care facility that was designed with a dementia design consultant. After the move, the residents from the old dementia ward were divided into two dementia households, which included their own secure garden (with small walking path) and kitchen servery (which remained inaccessible to the participants). A shared living area with two separate sitting areas, one near a television and one near a fire, was separate from a dining room with small tables. The décor was like that of a good hotel foyer – upholstered firm armchairs in pairs or groups. Individual bedrooms were along two corridors which fanned out from the central area and had a quiet, light-filled sitting area at the end of them. Each bedroom had a built-in memory box at the door (to contain significant objects about the resident) and two shelves within the room for other possessions.
Procedure
As outlined above, the earlier stages of the PAR project had involved co-creating scarves and blankets with each participant (Smith and Phillipson, in press). While the co-creation is not the focus of this paper, some details are needed as background and to visualise the objects with which the people are engaging. A social enterprise, Mindful Generations, was engaged to support the making of personalised scarves and blankets for participants. These scarves and blankets are made of old fabrics and have objects and photos attached to them or in pockets (see Figure 1). Researchers conducted brief informal interviews with staff and family members about each participant's interests, likes and dislikes. Based on this, participants were then given a curated box of objects and fabrics. Experienced aged care workers from Mindful Generations engaged with participants around objects, by talking to them and supporting comprehension of them. Researchers observed participant connections with and through these objects and used these observations to determine which objects should be attached to the scarves and blankets for each participant.
Figure 1. Example of a personalised blanket, with attachments, including a photo book and games all made on specifications of people with dementia.
Over a three-month period (between October 2019 and the end of December 2019) between two and four researchers visited Sites 1 and 2 (when the move occurred in December) for between three and six hours a week. During each visit, researchers gave the participants their personalised scarves and blankets, and engaged with them around their scarves and other things that were of interest to them. Researchers mainly sat in the public areas of the dementia ward, except when they accompanied participants on walks within the facility.
To understand how the objects supported different phases of transition for people with dementia and complex support needs, we used a range of methods to adapt to different contexts and impairments. An adapted Observed Emotion and Engagement Schedule (Jones et al., Reference Jones, Sung and Moyle2015) was used to structure observations around the impact of the scarves and blankets on emotions and social engagement during the expected phases of transition. Jones et al. (Reference Jones, Sung and Moyle2015) had previously developed this schedule to observe the impact of facilitated sessions with people with late-stage dementia interacting with therapeutic pet robots. For them, the schedule proved particularly useful in isolating the difference between emotions and engagement created through the interaction with the facilitator and emotions and engagement elicited by interacting with the object itself. We adapted Jones et al. (Reference Jones, Sung and Moyle2015) by using in-person rather than video observation, due to the ethical requirements of the aged care facility. The main adaptations made to the schedule were to allow us to observe in the context of transition and different geographical settings; this involved a small space in the schedule for drawing the physical space where the observation took place. During visits, two researchers would choose 20-minute periods of time in which to conduct these structured observations on between two and five participants. Over 50 of these observation schedules were completed, all in public areas of the locked ward.
Focused ethnography was also conducted, as it has been found to be useful in health and social care contexts, particularly in identifying the complex ways in which specific problems and practices emerge in specific contexts (Muecke, Reference Muecke and Morse1994; Roper and Sharpira, Reference Roper and Sharpira2000; Knoblauch, Reference Knoblauch2005). Methods from focused ethnography, including participant observations (Galanti, Reference Galanti1999), video/photography (Knoblauch and Schnettler, Reference Knoblauch and Schnettler2012) and informal conversations (Kilian et al., Reference Kilian, Salmoni, Ward-Griffin and Kloseck2008) with participants, family members and staff were used. Detailed field notes were also written (Knoblauch, Reference Knoblauch2005). The use of ethnographic methods helped to contextualise some of the behaviours being recorded in the schedule while also allowing us to reflect on our own and other people's emotional engagement with the situations (Roper and Shapira, Reference Roper and Sharpira2000).
Ethical issues
Focused ethnographic methods, in particular the writing of detailed field notes, also supported researchers to reflect on how situated we were as researchers in the locked dementia ward. We became known by the participants, many of whom were lonely and enjoyed our presence and company. We were not just objective observers but were actively pursued by participants to become involved in their lives and support their social and relational needs. During and after the conclusion of the study we have grieved their losses and some deaths, as well as celebrated with them.
The use of photography and the subsequent publishing of photographs was a product of this reflexivity. We thought that participants would shy away from our use of the camera as a method to record our observations. Instead, nearly all of the participants loved being photographed, smiling or making faces for us, and often inviting us or indicating to us that we should take photos of particular things. Much like the use of Photovoice in residential aged care (Miller et al., Reference Miller, Buys and Donoghue2019), we surmised that with their lives locked away from view, people with dementia wanted their lives recoded and made visible. With this in mind, we changed the proxy consent form to include different degrees of permission around photography of participants (no photos, no photos with face, photos with face). We also employed a professional photographer to come and make a video and take photos of those participants who particularly enjoyed having their photos taken. In total, we took more than 150 photos, all in public spaces in residential aged care.
Data analysis
Observation schedules, field notes and photos were uploaded into NVivo 12, a qualitative data analysis software package. LS used thematic analysis and constant comparison (Braun and Clarke, Reference Braun and Clarke2006; Clarke and Braun, Reference Clarke and Braun2013) to identify themes across the observation schedules, field notes and photos. PK independently inductively coded the same data. Analytic inconsistencies were resolved through in-depth discussions between all three authors. This paper reports on the theme of transitions, both the macro and, in particular, the four types of micro transitions we observed in the everyday lives of people with late-stage dementia. The everyday or micro transitions that were identified as important and needing support include: physical transitions (a move from one place to another), social transitions (entering or exiting personal interactions), activity transitions (moving between activities) and time travel (moving between different times).
Findings
Fifteen people (out of a possible 18 in the locked ward) with dementia participated in the study. They were aged between 60 and 98. One participant had been in residential aged care for over 15 years, while two others arrived at the very beginning of the study. Participants had a range of types of dementia and other compounding conditions, which meant they had varying degrees of physical, sensory and cognitive impairment. While some could walk without aides and make their meaning known through speech, others did not use speech to communicate and were non-ambulant, while others still were receiving palliative care. Participants’ physical and cognitive conditions fluctuated over the course of the study, with one participant dying during the course of the study. Pseudonyms are used in this paper.
Supporting transitions for people with dementia
This study aimed to improve understandings of the experience of a large physical transition for people with dementia and complex support needs from one residential aged care home to another. It also sought to understand the potential usefulness of personalised objects as a type of support during this transition. However, it was not until we actually gave participants their scarves and blankets that we began to understand the nature of transition for them. This Findings section reflects the ways in which our assumptions about transitions, supports, and the capacity of people with dementia and complex support needs to connect were challenged through the process of observing them with personalised objects.
Firstly, and consistent with our original aims, we outline how the scarves and blankets were used to support the large physical transition from one residential aged care facility to another. Secondly, we report on our unexpected findings about transitions – describing the complexity of transitions as experienced by people with late-stage dementia. Through observing participants with the objects, we found they were supporting them to make three types of micro transitions, and in so doing making their lives more manageable, meaningful and comprehensible.
The ‘macro’ physical transition
The physical transition we set out to understand and support was the movement from one residential aged care facility to another. Our observations revealed that the personalised scarves and blankets did provide comfort to people throughout the different stages of this physical transition, during both ‘the ending’ or packing up phase, ‘the limbo’ or move day and the ‘arrival’ or settling in.
During the ‘packing up’ or ‘ending’ phase in Site 1, the levels of distress and anxiety increased for some residents during the weeks leading up to the move to the new facility. Even though the secure dementia ward did not experience the same degree of disruption as other parts of the facility, the residents with dementia were stressed by the packing up of their personal objects and expressed both fears of material loss and feelings of concern for their own safety:
Ursula worried about her room and contents. People moving things and taking them. She doesn't want to be in her room on her own but she doesn't want to leave it in case other people touch her things. She wants her mother and is concerned about her photographs. There are a pile of boxes in the corner of her room. (Observation schedule, Site 1)
Sharon keeps saying, ‘I'm scared. I've scared.’ Her face is tight and looks pained. She clings to my hand when I sit next to her, burrowing her body towards mine. We go for a walk around. I say ‘You're safe. People are here to help you.’ She says ‘Thank you’, her voice shaky. (Field notes, Site 1)
Figure 2 is a photograph of Sharon and LS at Site 1 which illustrates this time. As we walked in circles, Sharon cried and held on to her scarf.
Figure 2. Sharon (wearing scarf) and LS walking together during a stressful time of macro transition.
For Ursula, her blanket provided occasional comfort and distraction. Ursula had been walking up and down the halls, looking around, searching for her brother and worried people were stealing her things:
I get out the box of scarf attachments and suggest that Ursula can swap some of her old attachments for new ones. ‘I love all of them. I want them all’. She holds each object in her hand, smiling and examining them closely; a notepad and pen, some crayons, a soft squishy toy. I wonder if I should let her have all 20 objects she's piling up on her blanket. I think that this is the first time I've seen her sit down for ages. (Field notes)
According to the principles of transitional care of Young et al. (Reference Young, Lind and Orange2021), acknowledging the negative and positive aspects of transition is crucial. Interestingly, while many of the staff were very emotional about the transition, they only talked about the transition as positive to the people with dementia:
It was Susan's last shift at the facility today. She looked like she was going to tear up as she was leaving. I asked if she was OK, she said ‘I've been working here for 20 years. This is like my second home. It's really hard to say goodbye. I asked if I could give her a hug. She said yes, and she burst into tears. ‘It's a really sad day for me.’ This is grief. I'd heard Susan reassuring all of the residents all day, saying how good it was going to be in the new facility. I wonder what would have happened if she had have cried with them instead? (Field notes, Site 1)
On the move or ‘limbo’ day, the scarves and blankets provide moments of comfort – even in great distress – because they travelled with participants, literally around or on their body. On the move day few of the participants had objects that you would expect to take when you move house (handbags, wallets, luggage or keys), nor did they move with people they knew (family, friends). As such, the personalised scarves and blankets became an embodied replacement for other possessions and objects of significance: they provided physical security and safety in a time of distress and at times reminded them of home and of who they were. On the day of the move, Sharon was very distressed, crying and screaming out, physically resisting when staff tried to hold her hand and support her to move towards the vehicle to go to the new facility. The only thing that offered her comfort was the scarf and one of the attachments, a soft bunny rabbit toy. This was also the only physical and tangible thing that was offered to her: ‘Staff tie the scarf around Sharon's waist for her journey in the car, and she holds the rabbit, stroking it as she cries’ (field note, Site 2). Similarly,
Evelyn travelled with her scarf around her neck. She continually touches all of the attachments. When someone puts the scarf under her wheelchair, she reaches around to try to get it. ‘I need it,’ she says. Later she asks me when she can go back home, and I say, ‘This is where you're going to live now. This is your new home’, ‘OK,’ she says, and sits on the firm new couch. We look at a big coffee table book about birds together and she gets out the birthday card which is attached to her scarf. (Field notes, Move day)
There was a mistake in the move plans and Audrey is moved earlier than everyone else in her household. She arrives to an empty building with just a volunteer. I grabbed her knitting bag and her scarf before I left the old building. I'd brought them in my car. Audrey looks at me with desperate eyes, hugging the knitting bag and her scarf close in to her body with both arms. ‘I had no idea … I'm a stranger to myself here.’ Later, Audrey's niece and nephew arrive. They have lots of things to decorate Audrey’ new room. Later I go to check how Audrey is settling in, Audrey is sitting on her bed looking at a photo album as her niece and nephew put all of her photos and quilts up around her room. She looks calmer. (Field notes, Move day)
After their first week in the new facility, the blankets were still used by people with dementia to feel safe and secure in their new home by providing them with ownership of a possession and helping them to find their own place within an unfamiliar environment:
Ursula is the only person we can't take the blanket off at the end of our stay. We wanted to make some adjustments and change the name plates but she had already folded it and put it in her walker. When I ask her if we can take it to make some changes, she says ‘I've got it away now.’ She is so excited about having a possession. Her room is empty. None of her personal things are there, there are only a few items of clothes. She can't find her handbag. Even though Ursula often doesn't know where she is, she always knows were her blanket is when we ask her. It is as if it gives her something tangible and clear to know. (Field notes, Site 2, Week 2 after transition)
Gordon comes back from the bathroom. Staff have told us he's been disruptive this morning, calling out and swearing. He recognises his blanket in front of the seat he was sitting at before, touches it, and sits back down where he was. He sings along as Audrey plays the piano. (Observation schedule, Site 2, Week 2 after transition)
Identifying and supporting micro transitions
Micro physical transitions
While the personalised scarves and blankets were designed to support participants during the macro physical transition, they also made smaller physical moves from one place to another smoother. For people with dementia and complex support needs, small free physical movements from one place to another are often pathologised or problematised, labelled as wandering, requiring restriction and being physically risky or dangerous (Steele et al., in press). For the participants in this study, these small physical transitions were challenging because they sometimes resulted in confusion and disorientation and, particularly for those who wanted to go home, could lead to distress. In this sense, we can see that these small physical movements (from lounge to toilet, around the garden) took on the characteristics of transitional phases of much larger transitions (ending, limbo, rupture, de-identification). During these moments, the scarf or blanket offers support to create a new beginning and settle in to a new place. We see in the examples below how capacity to manage and engage with the scarves and blankets in their everyday movements allowed participants to make calmer and more independent transitions:
Jeanne M walks around with scarf ingeniously attached to her walker. How did she clip it on like that? [20 minutes later] Jeanne returns after going to the toilet with her scarf rearranged on the walker. (Observation schedule, Site 2)
Evelyn walks outside with walker three minutes later returns with scarf back on (self placed). Seems that it has now become ‘her’ scarf. After more walking outside [13 minutes later] returns with scarf and walker. (Observation schedule, Site 2)
Connie wakes from a sleep in her chair, she takes her scarf off, folds it and puts it on her lap. She folds and refolds it and then puts it on her walker next to her handbag. She gets up and puts a tissue in the bin. (Observation schedule, Site 2)
Engaging with the scarves and blankets also supported residents to feel settled and anchored in a particular place. During our study, Clara had a one-on-one staff member allocated to her because of her behaviour towards other residents. In particular, she would hit out at people unpredictably and grab on to others, pulling them down towards her. Other participants warned us about her as we engaged with Clara around the scarves: ‘‘‘Watch out for that one,” Paul told me nodding towards Clara over his daily 3 pm beer which rested on his walker’ (field notes). But while Clara occasionally threw some of the objects we offered her, her engagement with the scarves, blankets and objects we offered her meant that she was calm and focused on looking at and touching objects:
Alyce [care worker] said she couldn't believe how different the room was when she came back from her break. Clara spent three hours calmly sitting, picking up the objects we had in the boxes and pulling at them, smelling them (or maybe she was using them to wipe her nose) and calmly engaging with them. She said to Gayle [researcher], ‘There's another one over there.’ It was the first time I heard her speak. When we packed all of our things away at the end of our time, Clara started to walk back and forth again, seeming to get more distressed. It was lunch time and she looked lost. Gayle [researcher] ended up helping her with Alyce [care worker]. As they both shepherded Clara back towards her seat, Alyce backing her into the chair by propping her own body on the arm of the chair, Alyce said, ‘Sometimes you have to play good cop, bad cop.’ (Field notes)
Micro social transitions
A social transition involves entering, establishing, fostering and/or exiting an exchange or relationship with someone else. Large social transitions might involve meeting new people or moving between social contexts (e.g. work and home). In the context of large physical transitions for people with dementia, support is required around social transitions, so that people can maintain and foster connections (Young et al., Reference Young, Lind and Orange2021). However, we found that for people with dementia and complex support needs, it is not only during macro transitions that social changes require support. For people with dementia and complex support needs, who may not remember familiar people's faces, names or roles in their lives, micro social transitions – such as a person re-entering a room or a familiar person re-engaging them in conversation after a pause – are significant and require particular kinds of support.
The personalised scarves and blankets provided a useful way for other people to support micro social transitions for the participants in the study. Particularly for participants with limited verbal communication, the scarves and blankets provided family, staff and friends with something to connect with and share when they came to visit or provide other forms of assistance to participants:
The nurse comes in to give all of the residents their medication. As she administers the medication to everyone she looks at all of the attachments on the scarfs and laughs and talks about each one. (Field notes)
The scarves and blankets also give residents something around which to initiate a social transition or connection with others. Figure 3 shows Gordon reading out a Christmas card attached to his blanket which he has written to his mother, the care worker, who has her iPad in her lap and is doing her notes, leans over to engage with Gordon. At another time:
Gordon has a blanket, carer tries to engage with him, he says he doesn't know where it came from. However, he does not usually use a walker to aid mobility, but is using one to carry the blanket. He takes it outside and shows Sandie, the physio. Also enacted a phone call with it [using the phone attachment]. Still involved with game [attachment]. He examines the blanket, gets out the bits, looks at them. Cat on cushion [attachment] turns around and tries to see if it moves. Then rolls up blanket, drops, picks up, folds. (Observation schedule)
The scarves and blankets also give participants a tangible way of ‘arriving’ at a social relationship quickly. Sharon does not interact much, however, the scarf gives a vehicle for interaction:
Sharon smiles at Madelaine [care worker] when she comes in. Madelaine approaches Sharon and says ‘What have you got?’ Sharon laughs and Madelaine mews and holds the cat attachment up to Sharon – she mews and Sharon mimics – this is the most animated I've ever seen Sharon. This goes on for some time. Sharon maintains eye contact with Madelaine. (Observation schedule)
Figure 3. Scarf supporting social transition with care worker.
Micro activity transition
An activity transition involves moving from one activity to another in a way that enables the full engagement in the new activity: the sense that one has arrived, settled and can participate in it. People with dementia and complex support needs often require functional, cognitive and communication support to engage in activities, even activities that have previously interested them. Through our observation of participants we noticed that starting, changing or ending an activity (eating dinner, watching a performer, getting changed) required particularly intense support to overcome the feelings of chaos, confusion and disorientation which are usually associated with the first two phases of transition. As stable, familiar and wearable objects, the scarves and blankets provided some stability and support for activity transitions. Not only did the attachments on the scarves and blankets enable access to familiar activities, the scarves and blanket could travel with the participant between other activities and offer them comfort.
Participants would choose whether they wanted to have their scarf or blanket with them or not, they would often leave it on a table in front of them or in their walker and get it out when they wanted to. They would also use the scarves and blankets (and their attachments) in ways that met their changing needs: for warmth, for entertainment, to share, to look at, to fold. This kind of individualised activity offered by the scarves and blankets is, however, not typical of the activity offered in residential aged care, which is usually group based.
We found that there was little support around transitions between activities in the residential aged care facility during our periods of observation. Staff and family provided very few cues about daily ‘activities’ like lunch or getting ready for bed. The lunch trolley would arrive and then staff would start moving people from the lounge to the dining room. They might say, ‘It's lunch time now’ as they moved someone, but would not prepare them before by setting the table or talking to them about what they were having. Similarly, participants would often go to their rooms at about 3 pm to go to the toilet and when they came back staff would have put them in their night clothes. This lack of transitional support around activity seemed to encourage a kind of passivity in the participants around participation in daily life.
Similarly, when more formal activities were arranged within the secure unit, such as concerts by external musical groups, there was no formal introduction or programme, instead the musicians just began, finished and left. Many residents struggled to engage in these performances but the scarves and blankets provided some comfort and sensory security around being members of an audience. Figure 4 illustrates Evelyn's use of the scarf during an activity:
10:40–10:50 Evelyn right at front of concert – looking at scarf-e and photos while listening – flicking through.
10:40 Beth also tapping along – holding flower on scarf – she used to do costume design for musical theatre, Madelaine [care worker] reminds me.
10:50 Jeanne walking with scarf-e on walker seat while the music plays Gordon starts singing along to Bye Bye Blackbird from the other end of the room. It's not until Gayle and Marina [researchers] go and sit with Eleanor, Evelyn and Jeanne in the audience that they start to connect to the music. Gayle and Marina clap along to the rhythm and the women join in. (Observation schedule)
Along with having no formal start or end to activities, many activities were often cut across by other medical or care-related interventions – interrupting the residents’ opportunity to be present in the activity. For example, during the performance by the Ukulele group (referenced above), one of the participants was having his ear drained by a doctor, both of whom were talking at full volume and with little regard for the residents’ engagement in the music or the other people in the public space and their potential engagement with the activity. In this context, the scarves and blankets provided a proximate and familiar activity to engage with no matter how confusing or unclear surrounding activities were.
Figure 4. Evelyn engaging with scarf and attachments during a ukelele concert.
Transitions in time
We have labelled this transition ‘time travel’ to help us describe the ways in which we observed people with dementia move in and out of present and past times, sometimes completely inhabiting a different period of time and sometimes just being completely absorbed in another period of their lives. Sometimes ‘time travel’ was exciting and happy, sometimes it caused distress – particularly when participants went back into particularly vulnerable times or were jolted back into the present, realising their own rupture in time. This movement between different periods of time was supported by the scarves and blankets, with the fabric and the sensory nature of some of the attachments providing comfort and distraction.
The scarves and blankets play a role in supporting movements through time, but not in ways that we could always predict. At times, the tangible nature of the scarves and blankets provided a soothing anchor to the present, but at other times they were a visceral reminder of who someone was in the past. In the excerpt below we hear Ursula seeing her much-missed brother, but upon realising that it is not him, she finds her blanket a comforting connection to the present and to her visitors:
Lately, Ursula has been asking when her mother and brother are going to come, saying that she wants to send them something. Today when I arrived with Alex [the photographer], Ursula looked so happy. She moved towards us so quickly, her face open wide in a smile. I smiled too, I'm always so happy to see her, and Alex turned to greet her and her face dropped. ‘Oh, I thought he was someone else. I thought you'd brought my brother with you.’ I felt the grief rattle through her. Alex and I both tried to soothe her and I explained that Alex was here to take some photos. ‘Oh we'll break it [the camera]’ but she was excited too. We sat down together and chatted, she showed Alex her blanket, she was happy and funny and engaged. At some point she said, ‘Well it is nice to see a handsome young man. I thought he was my brother.’ I thought she wanted to touch his face. (Field note)
In contrast, Ruth is comforted by the softness of one of her scarf attachments, but instead of jolting her out of her time travel it allows her to exist in the past more calmly:
Ruth often cries quietly in her chair with her eyes closed, she does this for long periods of time and calls out for her mother. At one point today, Marina went over and stroked her hair. Marina gives Ruth a cat to hold on the scarf. Ruth calms and stops crying. Ruth falls asleep 4 minutes later, calmly holding the cat. At another point in the day I also go up and offer Ruth a soft rabbit on the scarf to soothe her while she's crying, ‘That's lovely dear, but I'll have to ask your father about that.’ But she holds the rabbit, and her face changes, gets sturdier as a mother of a young child (me). (Field note)
Discussion
Transitions are significant for all of us, but are more numerous and challenging for people with dementia. For people with dementia and complex support needs, the challenges of transitions increase due to cognitive and physical impairments and other psycho-social factors. Significant transitions for people with dementia are usually conceptualised as large physical transitions from one place to another – in particular, one care environment to another. Yet while such transitions are important to understand from a service and care continuum perspective, this paper found that even in the context of a large geographical move, it was the small or micro transitions that were of primary importance to people with dementia and complex support needs.
Drawing on a PAR study with 15 people with dementia in a locked dementia ward, this paper examined how personalised co-created scarves or blankets which were designed to support a major physical transition were used by residents to make their everyday or micro transitions manageable, meaningful and comprehensible. To illuminate this, we developed a typology of four micro transitions: physical transitions, social transitions, activity transitions and time travel. In this discussion we will explore the implications of this new typology of transitions for understanding transitions in the lives of people with dementia and the implications it has for providing transitional supports.
Understanding transitions for people with dementia and complex support needs
This study found that for people with dementia living in a locked dementia ward, much of their everyday life could be characterised by experiences akin to the disruptive first two phases of transition. These first two phases – ending and limbo – are associated with uncertainty and confusion (Bridges, Reference Bridges2009), chaos, anxiety, lack of security (van Gennep, [1919] Reference van Gennep1960) and passage (Meleis, Reference Meleis1975). Without support, most of the participants with dementia and complex support needs whom we observed in both Sites 1 and 2 were either in these disruptive transitional states or in very passive states of sitting staring into the distance or sleep. Using a conceptualisation of phases of transition to help understand this is useful to shift us away from static diagnostic labels and symptoms of dementia (they are confused, disoriented, depressed) to a more fluid and dynamic understanding of it. In other words, in understanding people with dementia and complex support needs as moving through different states of transition (rather than symptomology) disrupts a biomedical thinking and encourages us to look further at the nature of micro transitions that might be triggering these particular responses and what kinds of supports might help these transient moments.
Four micro or everyday transitions were observed in this study: physical transitions, social transitions, activity transitions and time travel. People with dementia and complex support needs found it difficult to ‘be in the moment’ or find moments personally significant or meaningful (Keady et al., in press) without support from an object or social interaction. So it was only in being supported by a scarf or blanket and/or a social interaction in these everyday transitions that people with dementia and complex support needs were enabled to engage actively and connect with their environment (in both Sites 1 and 2), other people, the activities and their pasts. This is consistent with literature on people with mild to moderate dementia's experience of macro transitions (such as moving into residential aged care), where it takes time and effort to adjust to a new environment (Digby et al., Reference Digby, Moss and Bloomer2012), and where social connections with others (family, friends and new neighbours), settling in to the new daily rhythms and activities, and feeling accepted all benefit from supports (Thein et al., Reference Thein, D'Souza and Sheehan2011; Aminzadeh et al., Reference Aminzadeh, Molnar, Dalziel and Garcia2013).
Participants with dementia and complex support needs used the scarves and blankets to make micro transitions more manageable, meaningful and comprehensible (Phillipson et al., Reference Phillipson, Smith, Caiels, Towers and Jenkins2019). The scarves and blankets provided participants with something that they were capable of doing within reach. Organising, sorting, folding, playing with or talking about the scarf and blanket gave people with dementia something they could manage during lots of kinds of transition: literally something to hold on to when everything around them seemed to be unmanageable. Because the scarves and blankets were personalised they were particularly meaningful to participants during transition, and became precious possessions that they enjoyed sharing and which helped orient them at times of distress.
This personalisation also meant that scarves and blankets were something that participants understood in their immediate environment. When staff, families or other residents asked them about their scarves or blankets they could tell stories about them and could show them how to play the game. This sense of control over their immediate environment – what was right on or near their bodies – supported micro transitions, particularly when others connected with them around their scarves and blankets.
It is a leap to call the scarves and blankets transitional objects in Winnicott's (Reference Winnicott1953) sense. They were not found by the people with dementia themselves nor did they form the same degree of attachment to them deemed necessary for a transitional object. However, with scarves and blankets making transitions more manageable, meaningful and comprehensible, they do have something in common with transitional objects (Kenning and Treadaway, Reference Kenning and Treadaway2018). They allow more independence – more choice and control – rather than more dependence. This is perhaps because in the context of residential aged care, where passivity is often accepted as the main occupation, introducing an object that supports transitions allows for participants who were dependent to have more control.
Implications for care and research with people with dementia and complex support needs
There is a need to understand how, for people with dementia, significant transitions are not just major physical ones but everyday micro transitions that others may take for granted. These insights push the agenda for transitional care research away from the traditional domains of processes of intake and care planning towards a focus on understand how multi-sensory and relational supports can buttress the small transitions and moments that constitute their daily lives. In many ways our research reflects that of Keady et al. Reference Keady, Campbell, Clark, Dowlen, Elvish, Jones, Kindell, Swarbrick and Williams(in press), with our observations reinforcing the importance of care and environments that support ongoing creation, being, ending and re-living of moments that are important in the daily lives of people with dementia.
This study also has significant implications for the research methods used with people with dementia and complex support needs, who are often excluded from qualitative research in general, but research on transition in particular (Young et al., Reference Young, Lind and Orange2021). While we observed people with late-stage dementia and talked to their family and support staff, it was not until we involved people with dementia themselves in the co-creation of objects, using fabrics and images to interact with, that we really started learning about who they were and what they enjoyed in the present moment. With resignation to a certain passivity in residential aged care, it was not until we saw how people with dementia lit up with the range of objects we presented them that we could create a scarf or blanket that was particularly meaningful to them. Similarly, it was not until we observed how participants used these personalised scarves and blankets that we recognised micro transitions at all. While we know that innovative methodologies are more effective when working with people with dementia (Phillipson and Hammond, Reference Phillipson and Hammond2018), in this study it was the combination of co-creation and observation which allowed us to understand better people with dementia in time and space.
Finally, the relationships that we developed as researchers with people with dementia and complex support needs were real, meaningful and enduring. People with dementia who participated in this study enjoyed us coming, asked us for comfort and sought our company; we felt similarly about our visits. For the most part, this is because we had the time to sit, walk, talk, play and to be ‘in the moment’ in residential aged care. This has implications for both research and practice around transitional care and with people with dementia in general. It takes time, it is relational. It is not just about people moving; it is, and arguably needs to be, moving.
Conclusion
This study fills a gap by providing evidence for the usefulness of personalised objects to support people with moderate to severe dementia involved in care transitions. Co-created objects were found to be useful in supporting the large planned geographical transition made by residents with dementia from one residential aged care facility to a new purpose-built facility. However, the objects also transformed our view of care transitions – highlighting the importance of the micro physical, social, activity and time transitions that residents were present in negotiating in their everyday lives. Reimagining transitions from the perspective of people with dementia and complex support needs critically involves the recognition of the need for tangible and personalised supports for the micro transitions and moments that can promote a more manageable, meaningful and comprehensible life.
Acknowledgements
We would sincerely like to thank the participants of this study who so warmly welcomed us into their home and opened our hearts to their worlds.
Author contributions
LS conceptualised the study, conducted the data collection and analysis, and wrote the first draft of this paper. LP also contributed to the study design, data analysis, and made significant revisions and refinement to various drafts of the paper. PK was involved in data collection and analysis, and contributed to early planning and final review of this paper.
Financial support
This work was supported by the University of Wollongong's Global Challenges Keystone Program.
Conflict of interest
The authors declare no conflicts of interest.
Ethical standards
This study has ethics approval from the University of Wollongong, Human Research Ethics Committee.
