"The Red Dress or the Blue?": How Do Staff Perceive That They Support Decision Making for People With Dementia Living in Residential Aged Care Facilities?

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Journal of Applied Gerontology 2016, Vol. 35(2) 209 –226

sagepub.com/journalsPermissions.nav DOI: 10.1177/0733464814531089

jag.sagepub.com

Original Article

“The Red Dress or the Blue?” How Do Staff Perceive That They Support Decision Making for People With Dementia Living in

Residential Aged Care Facilities?

Deirdre Fetherstonhaugh

¹

, Laura Tarzia

¹

, Michael Bauer

¹

, Rhonda Nay

¹

,

and Elizabeth Beattie

²

Abstract

Respect for a person’s right to make choices and participate in decision making is generally seen as central to quality of life and well-being. When a person moves into a residential aged care facility (RACF), however, decision making becomes more complicated, particularly if the person has a diagnosis of dementia. Little is known about how staff in RACFs perceive that they support decision making for people with dementia within their everyday practice, and this article seeks to address this knowledge gap. The article reports on the findings of a qualitative study conducted in the states of Victoria and Queensland, Australia with 80 direct care staff members.

Manuscript received: August 28, 2013; final revision received: March 9, 2014;

accepted: March 16, 2014.

1La Trobe University, Bundoora, Victoria, Australia

2Queensland University of Technology, Brisbane, Queensland, Australia Corresponding Author:

Deirdre Fetherstonhaugh, Australian Centre for Evidence Based Aged Care (ACEBAC), La Trobe University, Bundoora, Victoria 3086, Australia.

Email: d.fetherstonhaugh@latrobe.edu.au

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Findings revealed that the participants utilized a number of strategies in their intention to support decision making for people with dementia, and had an overall perception that “a little effort goes a long way.”

Keywords

dementia, decision making, long-term care, staff, autonomy

Introduction

There is a growing body of research on people with dementia examining their level of capacity to make decisions (Feinberg & Witlatch, 2001), their degree of involvement in decisions (Hirschman, Xie, Feudtner, & Karlawish, 2004;

Horton-Deutsch, Twigg, & Evans, 2007), and how they feel about decision making and their participation in it (Fetherstonhaugh, Tarzia, & Nay, 2013;

Hirschman, Joyce, James, Xie, & Karlawish, 2005). From this literature, it is clear that people with dementia can and do make decisions, and wish to remain involved in decision making for as long as possible. However, these studies are predominantly conducted with older people with dementia living in the community, and there is very little understanding of decision making for people with dementia living in residential aged care facilities (RACFs). In Australia, RACFs are the equivalent of nursing homes, and they provide services and personal care to older people who can no longer live independently or with support in their own homes. Currently, over half the people living in RACFs have a diagnosis of dementia (Australian Institute of Health &

Welfare, 2011). Research has suggested that the perceived degree of involvement in everyday decisions within the institutional setting is directly linked to a person’s well-being (Shawler, Rowles, & High, 2001), and having autonomy is consistently listed as a determining factor of quality of life within the RACF environment (van Theil & van Delden, 2001). Whether this actually occurs, however, is often dependent on the care staff (Martin & Younger, 2000; Mullins, Moody, Colquitt, Mattiasson, & Andersson, 1998; Tuckett, 2005), and it is therefore vital to understand the ways that staff can support decision making for people living with dementia in RACFs.

There is a dearth of research that specifically explores strategies that are used by staff in an effort to support and facilitate decision making for people with dementia living in RACFs. One recent Norwegian study (Smebye, Kirkevole, & Engedal, 2012) involved interviews with 10 triads—a person with dementia, their family carer, and their professional caregiver—asking them about decisions concerning daily activities, medical care, and moving to sheltered housing or a RACF. Using a framework developed by Thompson

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(2007), decisions were categorized into autonomous decisions, pseudo- autonomous decisions (decisions that appeared autonomous but which lacked proper consultation with the person with dementia), delegated decisions, and shared decisions, with the latter being the most common category. To facilitate autonomous decisions, family and professional caregivers stated the options in a clear manner, used aids or props to assist comprehension, and reduced the range of available choices. They also gave people with dementia time to consider the options. Sometimes, however, decisions became pseudo- autonomous when staff or carers assumed that they already knew the person with dementia’s preferences and wishes, and based a decision on this without consulting with the person beforehand. The authors defined “shared decisions” as cases where people with dementia were assisted in their decisions because they did not understand information or feel confident in their own judgment. When making shared decisions, carers reminded the person with dementia about options and shared information, so that the decision was negotiated within partnerships rather than taken by any one person individu- ally. There was a greater degree of support offered through shared decisions when compared with what the authors classified as autonomous decisions.

Several older studies (Ripich, Wykle, & Niles, 1995; Vogelpohl, Beck, Heacock, & Mercer, 1996) have also examined strategies that may help empower people with dementia in RACFs to make decisions. Vogelpohl et al.

(1996) focused on dressing as a key area for promoting independence. They recommended that staff establish a routine that “includes consistent caregivers, sufficient time to avoid rushing the person, and a consistent structure of the . . . task” (p. 41). They also suggested that carers use “simple, one-step commands” (p. 41) that can be repeated as often as needed to ensure comprehension. Ripich et al. (1995) developed a seven-step guideline for communication targeted especially at nursing assistants, which included the following:

giving time, simple choices, limited options, short and direct sentences, and the use of hand signals, pictures and facial expressions. Davies, Ellis, and Laker (2000) and Whitler (1996) discussed in a more general sense how the behavior and attitudes of staff can either enhance or curtail autonomy, although Davies et al. did not focus on RACFs and Whitler did not specifically include people with dementia. Davies et al. used an observational approach to examine strategies that nurses implemented across a variety of care settings to promote autonomy. These included being alert to cues, avoiding controlling language, recognizing individuality and personhood, informing the older person, and negotiating care. Whitler, however, used interviews with nurses in RACFs to identify strategies used to assist residents with decision making. Strategies included the following: personalizing, informing, considering, assessing capacity, persuading, and mentioning opportunities;

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however, no examples were given of how these categories might actually be implemented in practice.

The importance of staff communication style to the decision making capacity of people with dementia in residential care has also been highlighted more recently (Christenson, Buchanan, Houlihan, & Wanzek, 2011; Williams &

Herman, 2011). It is well-recognized that, in all contexts, communicating with people with dementia requires an understanding “beyond the spoken word”

(Hobson, 2012, p. 334). Being aware of body language and tone of voice, as well as a focus on emotional states and feelings, can assist staff to understand and respond to the needs and wishes of the person with dementia. Clarke and Davey (2004) have explored the ways in which different communication strategies by aged care workers can empower or disempower people with dementia in decision making. They found that staff whose communication included warmth, a personal demeanor, and encouragement to recall were more successful in enhancing decision making, whereas staff whose communication (both verbal and non-verbal) showed that they were pressed for time or impatient, or staff who depersonal- ized the person with dementia, tended to discourage them from making decisions.

Speaking to the person with dementia like a child (“elderspeak”) has also been linked to negative outcomes, with the person with dementia often exhibiting

“resistiveness to care” as a way of trying to assert their decisional autonomy in the face of disempowerment (Williams & Herman, 2011).

“Knowing” the person has also been identified within the existing literature as an important aspect of supporting and facilitating decision making for people with dementia (Agich, 1990; Rodgers, Welford, Murphy, & Frauenlob, 2012). Participants in a study by Reinardy (1999), for example, who were social workers in long-term care facilities, highlighted the importance of maintaining consistency with past values and lifestyle and finding out what the person with dementia liked and did not like to facilitate autonomy.

More recently, the concept of “supported decision making” has emerged within the fields of disability studies and mental health law as a model with the potential to empower people with cognitive or intellectual impairments to make decisions (Gooding, 2013). Supported decision making means that “a third party ‘helps’ an individual . . . make legally enforceable decisions for him- or herself” (Kohn & Blumenthal, 2014, p.S40) rather than a substitute decision maker intervening to make decisions on behalf of the person.

Examples of supported decision making include helping the person understand information, helping them express or articulate a decision, providing options, or using technology (Victorian Government Department of Human Services, 2012). The goal of supported decision making is to empower the person with cognitive impairment, although as yet there is little empirical evidence to confirm whether or not it actually succeeds in achieving these

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goals in practice, and some authors are cautious about its benefits (Kohn &

Blumenthal, 2014). Furthermore, the application of a supported decision- making framework for people with dementia has not yet been recognized to the same extent that it has for people with a disability, and therefore little is known about how it can be applied within the RACF context.

Research into care staff perceptions of how they can facilitate and support decision making for people with dementia living in RACFs within their everyday practice is clearly limited. This article makes a valuable contribu- tion to the literature in addressing this gap.

Aim

To explore the ways in which direct care staff in Australian RACFs perceive that they support and facilitate decision making for people with dementia.

Method

The study received approval from La Trobe University’s Human Ethics Committee (approval number FHEC 11-148). Grounded theory methodology informed the data collection and analysis.

Recruitment

The participants in this study were direct care staff working in Australian RACFs. Direct care staff were defined as those who had a direct role in providing care to the residents, as opposed to other staff (catering, laundry, main- tenance) who provided ancillary services. Multiple methods of recruitment were used, including advertisement in industry publications and e-newslet- ters and direct recruitment through RACFs in the states of Victoria (n = 9) and Queensland (n = 5). Facility characteristics and the number of participants from each are shown in Table 1. A total of 80 staff members were recruited for the study, with participant details shown in Table 2. Each staff member recruited from the RACFs was given the option to participate either in an individual interview or a focus group.

Data Collection and Analysis

Data collection was carried out between December 2011 and May 2012.

Individual interviews (n = 41) and focus groups (n = 8) were conducted concur- rently with data analysis as per grounded theory methodology, and were contin- ued until theoretical saturation was reached. The majority of the interviews and

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Table 2. Characteristics/Roles of Participating Staff Members.

Designation Number of participants

RN 15

EN^a 14

Personal care assistant/personal carer/assistant in nursing 42

Nurse unit manager/care manager 4

Residential services manager 1

Transitional care coordinator 1

Lifestyle/diversional therapist 3

Total 80

aAn enrolled nurse in Australia has obtained either a Diploma of Nursing or a Certificate IV in nursing from a tertiary institution or other registered training provider (usually 12-18 months training). It is the equivalent of a LPN in the United States. RN = registered nurse; EN = enrolled nurse; LPN = Licensed Practical Nurse.

Table 1. Characteristics of Participating RACFs.

Facility

no. State Facility type Number of

beds Type of care No. of participants (FG/interview)

1 VIC Not-for-profit 60 High/low^a 6 (Interview)

2 VIC Not-for-profit 113 High/low 6 (Interview)

3 VIC Community 42 High/low 6 (FG)

4 VIC Not-for-profit 150 High/low/dementia 4 (FG)

5 VIC Not-for-profit 60 Low/dementia 6 (FG)

6 VIC Not-for-profit 51 Low 4 (Interview)

7 VIC Not-for-profit 90 High/low 7 (Interview)

8 VIC Not-for-profit 50 Low 6 (FG)

9 VIC Not-for-profit 134 High/low/dementia 6 (FG)

10 QLD Not-for-profit 158 High/low/dementia 5 (FG)

11 QLD Not-for-profit 185 High/low/dementia 2 (FG)

12 QLD Not-for-profit 76 Low/dementia 4 (Interview)

13 QLD Not-for-profit 140 High/low 4 (FG)

14 QLD Not-for-profit 96 High/low/dementia 10 (Interview)

aPermanent residents receiving low-level care require accommodation and personal care, and residents receiving high-level care require 24-hr nursing and accommodation in addition to their low-care needs (Australian Institute of Health & Welfare, 2011). “Dementia” under type of care refers to facilities with a secure dementia-specific unit. RACFs = residential aged care facilities; FG = focus group; VIC = Victoria;

QLD = Queensland.

focus groups were conducted on-site at the participating RACFs; the excep- tions being the interviews with the four participants who were not recruited through a RACF, which were conducted over the telephone.

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Both semi-structured interviews and focus groups are effective methods for the systematic and comprehensive exploration of participants’ views on a topic, and both can provide rich data that impart insights into topics that are not well understood. Focus groups, in particular, are an effective method of obtaining a wide range of views as all levels of staff are able to participate at once. Although the focus groups generated some lively discussions, the method of participation (interview or focus group) did not appear to influence the comments made by staff members.

All interviews and focus groups at the RACFs were conducted during paid work time and were scheduled by the researchers at a time that was conve- nient to both the individual participants and the RACFs. Both the focus groups and the interviews comprised participants from across the spectrum of direct care staff roles, that is, nurses, personal care attendants, and others (see Table 2). In general, the personal care workers/assistants in nursing appeared to focus more on decision making in the context of activities of daily living (ADLs), whereas the nurses’ focus tended to be more broadly in terms of the facility as a whole. However, there was little difference in terms of the types of strategies that were suggested by participants, and thus, this aspect of the data has not been reported.

The individual interviews lasted between 15 and 45 min, and each focus group (with between 2 and 11 participants) lasted between 35 min and 1.5 hr.

With the participants’ permission, the interviews and focus groups were audio-recorded and later transcribed verbatim. The data used in this article concentrate on the perceptions by staff regarding the ways in which they facilitate and support decision making for residents with dementia.

Participants were asked to reflect on, and discuss, what they perceive they do to facilitate (or not facilitate) decision making with people with dementia;

dementia was not defined for the participants and no delineation of the severity or types of dementia was made. The philosophy of “ageing in place” in Australian aged care homes means that “residents of an aged care home are able to remain in the same environment as their care needs increase” (Commonwealth Department of Health, 2002, p.3); therefore, it is not uncommon for carers to have a diversity of care experiences and provide care to residents who are in different stages of dementia at the same time. Furthermore, we wanted the participants themselves to make a distinction between different types/severities of dementia if indeed it was relevant to the strategies that they used.

Parallel to data collection, interview transcripts were analyzed by the researchers using the software package NVivo 9. Members of the research team (LT, DF, MB) read through the transcripts, consulted with each other, and cross-checked until consensus was reached on emerging themes and categories within the data. Once there were no more new themes being identified by

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the research team, data collection ceased as it was determined that theoretical saturation had been reached. A central theory was identified with three sub- themes that highlight the ways in which staff perceived that they can facilitate and support decision making for people with dementia in RACFs.

Findings

The ways in which staff in this study felt that they could support and facilitate decision making for people with dementia can be summarized by the core category, “A little effort goes a long way.” Three sub-categories: “Keeping it simple,” “Knowing the person,” and “Negotiating a compromise,” provide more details.

Keeping It Simple

Participating staff members highlighted various ways in which they felt they could support and facilitate decision making for people with dementia in their everyday practice. For the most part, these strategies had the aim of simplify- ing the process of decision making for the person with dementia. For example, when staff members helped a person with dementia to get dressed, they commented that reducing the number of options encouraged the person to make a decision, and avoided them becoming confused or upset:

Not . . . give her the whole wardrobe and say, “What do you want to wear?”

because we might sit there for hours, but grab two outfits.

You go and say, “Do you want to wear the red dress or the blue?” And they feel that they’ve made the decision, you know.

Several staff members emphasized that showing the person with dementia different choices, as opposed to asking them verbally, could be an effective way of supporting decision making. As one participant described it, “Putting it in front of them so they can choose what they want.” Using a visual repre- sentation such as a picture in a menu was also beneficial. Both strategies, according to staff, assisted the person’s comprehension and understanding of the available options.

Sometimes visual works with residents with dementia. If verbally they’re not understanding what you’re explaining to them, usually pictures or actually showing them a choice of which meal they’d like—so being visual—allows decision making too.

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The importance of using simple, unambiguous language, and showing consistency of expression, was also identified by the participating staff members as a key part of facilitating decision making for people with dementia.

Sometimes they’ll say, “No,” because they don’t understand the words . . . When you say, “Do you wanna come on a scenic drive?” [They] haven’t got a clue what that is. But, if you say, “We’re going to take our little bus out and we’re going to go down to the beach, and have an ice cream . . . Would you like to come along?” then, “Yes, I’d love to!” So I think it’s taking the time for effective communication.

When you ask a question, don’t ask it 10 different ways. Stick to that one way of asking so it gradually sort of sinks in what you’re after. But if you keep darting all over the place and using different words, it’s just like, “What are you trying to say to me?”

You have to be clear with them . . . When you tell them something you have to be in front of them and be clear and direct. Sometimes they have . . . some of them can’t understand you. You have to speak with sign language.

Allowing the person time to decide, and avoiding an environment that was distracting or noisy, were very important:

If you’re having problems in that situation, just take them out of that environment and maybe put them in, in a new environment where it’s quieter or in their room where there’s not a lot of people around.

I think if you take time and just talk to them, they may not show it, but I think deep down inside they know what they want.

Knowing the Person

Taking the time to get to know the person with dementia was perceived by the participants as being an important precursor to being able to assist with decision-making, particularly when the person was unable to communicate verbally or had other difficulties with communication:

We had a resident here . . . His answer to everything we said was, “Boom!

Boom!” But we would know that sometimes “Boom! Boom!” meant something and other times “Boom! Boom!” meant something else. But that’s because we got to know him and we got to know his likes and dislikes.

I remember not long ago I had to go over and help someone out of their nightie [night dress] into their morning clothes, and it did take me longer, yes, because

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I didn’t know this lady particularly likes purple. So I could have narrowed it down if I’d known if she liked purple.

In addition to learning about individual expressions of choice and prefer- ence, staff also believed that getting to know the person with dementia helped to build their trust, which, in turn, meant that the person was more likely to relax and feel comfortable making decisions rather than becoming agitated.

They’re very used to our faces too, you know. I think it’s a comfort, really, when they see regular faces each day coming in and, you know, it’s a security factor as well.

That can be a trigger for them to refuse and resist, if they don’t know you at all.

Speaking with the person’s family and using the information documented in their care plans were key ways in which the staff felt that they could find out important details about the person with dementia, including their moods, habits, and preferences for a particular color, food, or type of activity.

Sometimes you can talk to the family and just find out, you know, what their habits used to be because, in the old days there wasn’t always enough water to have a shower and they wouldn’t have been used to showers. They would have bathed rather.

Staff also felt that the knowledge acquired from families or care plans avoided them having to unnecessarily upset the person with dementia by trying to get them to do something which they had no interest in. Having the knowledge also enabled them to narrow down the number of options for the person with dementia. As one staff member described,

We’ve got one [resident], he’s not a morning person and we’ve been dragging him out of bed. And everyone says he’s an angry person but he’s not—he’s just not a morning person. Lucky man: [now] he’s allowed to stay in bed!

Knowing the person with dementia could also alert staff to the fact that their decision-making capacity may be starting to decline.

If they become agitated, when in the past they would’ve been able to give you a relatively coherent answer, that shows that they’re losing the capacity to think through the complexity of the question and answer it.

If my mother started to undress and sleep naked, I’d know that something had gone wrong with her processes because she has never done that in her life, you

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know. So where you start to intervene is when someone who you’ve got a history, the family history, that they’ve said they’ve always been a person who’s looked after themselves, say immaculately or something. Now they don’t even want to get dressed or they’re not wearing the proper clothing.

Negotiating a Compromise

When the wishes of staff and the person with dementia diverged, staff members often tried to find ways to compromise with the person with the intention of respecting their choices, while also achieving the desired outcome for staff. For example, a person with dementia who did not want to adhere to the usual routines around showering could be approached with some flexibility.

I’ve got one [resident] this morning who didn’t want to have a shower so we got him up, persuaded him to go to the bathroom. He went to the bathroom. We said, “We’ll give you a sponge in bed.” He was happy, went back to bed.

Rewards could also be used to encourage the person with dementia:

Like, if somebody doesn’t want to have a shower, you can say, “I can get you a cup of tea afterwards.” It’s just little things like that that you know that can . . . that they’ll say, “Okay.”

People who did not wish to eat at scheduled mealtimes could be offered snacks or sandwiches when they were hungry. As one staff member explained,

“We’ve always got sandwiches for night time and during the day biscuits and things. And, if they want something [like] fruit, they can have it.” For people with particular dietary or nutritional requirements, staff found ways in which they could satisfy those requirements, while still trying to give the person with dementia some level of choice.

Well we have people that just . . . nibble at their meal and . . . then they’ll hoe into their dessert because they love it, you know. But you have to put supplements in.

Offer them something—yoghurt or a piece of fruit, or ice cream and say, you know, “This one’s especially just for you,” and you’ve already taken that [negative]

thought away because, “It looks pretty good. You’re getting that instead.”

Discussion

The staff members who participated in this study felt that they could facilitate and support decision making for people with dementia within their everyday

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practice in a variety of ways. Although the examples given by staff of decisions that people with dementia could make were primarily small things such as clothing and food, the acknowledgment that “a little bit of effort goes a long way” is encouraging.

Staff participants tried to simplify the decision making process for people with dementia by reducing the number of options, for example, in the case of clothing or food selection. This strategy is similar to that used by carers in Smebye et al.’s study (2012), where it was suggested that narrowing the range of choices “reduced confusion and promoted autonomous decision making” (p. 5). Similarly, in other research on everyday decision making and dementia (Fetherstonhaugh et al. 2013), we reported that people with dementia in the community found it helpful when family carers gave them a list of limited options to choose from, and viewed this as a way to remain involved in decision-making without the risk of making a “bad” decision. Although it could be questioned how “autonomous” a decision by a person with dementia really is when the options have already been pre-selected, research—primarily conducted within a marketing context—has shown that having too many options can be mentally taxing and stressful even for those without cognitive impairment (Iyengar & Lepper, 2000; Reutskaja & Hogarth, 2009). As Schwartz (2000) has argued, the “tyranny of freedom” where seemingly lim- itless options are available can be overwhelming. Add to this the effects of dementia on cognition and memory retention and it is evident that opening up a wardrobe which provides a vast range of options, as one participant described, and asking the person with dementia what they would like to wear may not always be the best strategy. From an ethical point of view, limiting choices for people with dementia in RACFs is also supported by the argument that all of us are constrained in our choices to some extent. Schwartz (2000) argues that “cultural institutions go a long way toward telling people where they can choose and where they cannot, and within the domains where choice is allowed, these institutions determine what the possibilities are”

(p. 82). Another consideration is that in the busy and time-poor environment of a RACF, there are practical limitations on how much time staff can dedi- cate to facilitating autonomous choices for people with dementia. As one participant mentioned, a motivating factor for reducing the number of options was to avoid staff having to “sit there for hours,” which they felt would compromise the care they provide to other residents. Speeding up the decision- making process by limiting the choices on offer was seen by staff to still preserve the decisional autonomy of the person with dementia, while allowing the staff member to perform their tasks more quickly.

According to the participants, the use of clear, unambiguous language, and the incorporation of visual prompts if the person was unable to communicate

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verbally could also encourage and assist people with dementia to make decisions about various aspects of their care. The importance of ensuring that the person with dementia has understood the staff member when they make a request or ask a question has also been identified by other researchers, with Clarke and Davey (2004) noting that “aged care workers with more positive or enabling characteristics in their communication with residents not only enhance residents’ autonomy, self-worth and dignity but protect their human right to make personal care decisions for themselves” (p. 17). Furthermore, the participants in this study appeared to be paying attention to the “underly- ing affective or implicit messages in their communication” (Williams &

Herman, 2011, p. 5) in addition to their words and tone. Several staff members mentioned the importance of allowing the person with dementia time to make choices, thereby not giving the impression that they were rushed or busy.

Asking the person with dementia to make a decision in a quiet and calm environment was also viewed as helpful, which is a strategy consistent with much of the literature around informed consent for people with dementia to participate in research (Mayo & Wallhagen, 2009).

The participating staff members felt that knowing the person with dementia was important, both because it helped them to interpret the person’s wishes and to learn their individual likes and dislikes, and because it allowed trust to build.

While knowing the person is one of the fundamental goals of person-centered care, and therefore should permeate all aspects of staff practice, it has specifically been identified as central to promoting autonomy (Rodgers et al., 2012).

As Agich (1990) has noted, it is not enough to ensure that the person with dementia has the opportunity to make decisions; the decisions must be mean- ingful to that person, and staff need to get to know the person to determine what decisions they might be. This was perceived to be particularly relevant as the person with dementia declined, and as staff interactions shifted from a supportive role in decision-making to substitute decision making. Over-confidence that one “knows” the person with dementia, however, can be problematic, as Smebye et al. (2012) have noted. Many staff in this study mentioned that they relied on care plans or on families to provide information about the person with dementia without mentioning an ongoing dialogue with the person themselves.

The risk, according to Smebye et al. (2012), is that decision making can move from autonomous to pseudo-autonomous if assumptions are made about values and preferences without clarification through speaking with, or observing the person with dementia. After all, just because the care plan says that a person likes the color green does not necessarily mean that they want to wear green every day. The following example of “Jo,” an 80-year-old man living in a RACF whose wife has recently died, illustrates this argument. Although Jo does not have dementia, the scenario is easily translatable:

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[After his wife’s death] “The senior staff at the facility consulted Jo’s care and lifestyle plan and determined from it that Jo needed constant activity and people-contact to get him through the first difficult weeks. A week after [his wife’s] funeral, a RN who had been on leave returned to the facility to find Jo depressed and exhausted . . . Jo finally revealed that all he had wanted to do in the days after [his wife’s] death was to quietly visit their ‘special’ places and to reflect . . . he just needed some space and time to himself.” (Rodgers et al., 2012, p. 73)

Similarly, while families can provide valuable information about the preferences of the person with dementia in their previous life before they came into the facility, they may not necessarily know if or how their values, wishes, likes, and dislikes may have changed. As dementia progresses, a person may forget their previously held beliefs and values, and may develop new ones (Nuffield Council on Bioethics, 2009). In response to this, the Nuffield Council on Bioethics (2009) report on dementia highlights the importance of balancing the “past self” of the person with dementia and the “present self.”

Relying on family reports of a resident’s likes and dislikes can be seen as prioritizing the “past self,” which negates the right of the person with dementia to change their mind and “holds them to ransom” to their past beliefs (Nuffield Council on Bioethics, 2009).

When the wishes of the person with dementia presented a challenge to participating staff members, they stated that they tried to negotiate a compromise. Compromise is essential within an institutional environment such as a RACF, as it allows the person with dementia to make a choice about aspects of their daily lives without challenging the staff’s duty of care. However, there are a number of factors to consider. Although several of the participants did indicate that there was a degree of flexibility within their facility routines, this was not the case for all, and in some cases a compromise with regard to mealtimes and shower times was not possible. Furthermore, “Whose compromise?” is a question that should be asked, as in most cases it was residents, rather than staff, who were being asked to modify their wishes or requests. Finally, as Harris (2003) has noted, when presented with options where neither alternative is desirable, “the person is unlikely to experience choice” (p. 5). It is unclear, then, whether the person with dementia is agree- ing to compromise simply because this option is the least unpleasant of those on offer.

Conclusion

The staff who participated in this study were aware of the ways in which their language, behaviors, and attitudes could positively or negatively affect

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decision-making for people with dementia. They had developed a range of strategies which they felt supported and facilitated people with dementia in making decisions, including compromising when a particular decision was not possible, getting to know the person, and ensuring that information was understood. Some of the strategies, however, although the participants perceived them as facilitating resident autonomy, may run the risk of becoming pseudo-autonomous and may indeed be inconsistent with person-centered care and supported decision-making. While getting to know the person should be an invaluable part of facilitating decision-making for people with dementia, care should be taken to ensure that this knowledge is not used to manipulate people with dementia “into making decisions according to the ideas of other people, confusing them [or] otherwise interfering in their decision making in ways that reduce autonomy” (Munthe, Sandman, & Cutas, 2012, p.237).

It must also be noted that what has been reported here is the study participants’ perceptions of the effect of their strategies, not the actual effect on residents. Staff perceptions can to a degree be self-serving, in that they can determine behaviors and interactions with residents. Further research, including observational studies of staff working with residents with dementia, is recommended to understand exactly what staff do and what they say they do, how the perceptions of staff and care strategies function in practice, and the actual effect on residents and their decision-making.

Limitations

Although this study was not small in terms of the volume of qualitative data, it cannot be seen as representative of the views of staff in all aged care facilities in Australia. It is likely that the participating RACFs were already fairly focused on person-centered care, and acknowledged residents’ rights to make decisions. Unfortunately, it may be that facilities that are not supportive of decision-making are unlikely to volunteer to be a part of research such as this.

Furthermore, the individual staff members who chose to participate are likely to have been more engaged and aware of issues around decision-making. In addition, as dementia severity or type was not discussed with the participants it could not be determined if the strategies the staff perceived that they had developed to support and facilitate decision-making differed based on the severity or type of the disease.

Authors’ Note

The views expressed in this work are the views of the authors and not necessarily those of the Australian Government.

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Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This project was funded by the Dementia Collaborative Research Centre—Carers and Consumers as part of the Australian Government’s Dementia Initiative.

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Author Biographies

Deirdre Fetherstonhaugh is the Director of the Australian Centre for Evidence Based Aged Care (ACEBAC) at La Trobe University. Her research focuses on: the translation and implementation of research evidence into practice; the ethical implications of clinical practice and research; the promotion of participation in decision- making for older people with dementia; and sexuality and older people.

Laura Tarzia is a sociologist and a Research Fellow at the Australian Centre for Evidence Based Aged Care (ACEBAC), a research centre of the Australian Institute for Primary Care and Ageing at La Trobe University. Her work has focussed on: sexuality and older people, decision making for people with dementia in residential aged care and in the community, and staff-family relationships in residential care.

Michael Bauer is a Senior Research Fellow at the Australian Centre for Evidence Based Aged Care (ACEBAC), a research centre of the Australian Institute for Primary Care and Ageing at La Trobe University. He holds a doctorate in health sciences and a Masters in Gerontology and has a long standing interest in residential aged care.

Current work focuses on the views of residents, including those with dementia, about sexuality; supporting residents’ expression of sexuality; dementia and decision-making; and assessing and improving staff–family relationships.

Rhonda Nay is an Emeritus Professor at La Trobe University. Her research priority is getting evidence based, interdisciplinary, person-centred aged care into practice.

Specifically her research focuses on: staff-family relationships; sexual expression and sexuality; person-centred care and pain assessment and management for people with dementia. She has published and presented extensively on aged care and dementia.

Elizabeth Beattie is the Professor of Aged and Dementia Care and Director of the Dementia Collaborative Research Centre: Carers and Consumers at the Queensland University of Technology. She has worked with people with dementia and their caregivers for over 25 years. Her specific research interests are in intervention develop- ment to ameliorate behavioural and psychological symptoms of dementia, decisional capacity issues for people living with dementia and dementia-related perceived stigma.