Person-Centred Dementia Care

An Arts-Based Approach to Rethinking Personhood in Person-Centred Dementia Care

The intervention we developed was a 12-week interprofessional arts-informed educational program to improve person-centred dementia care. We modified an existing curriculum ¹⁹ that had successfully enhanced culture change and the promotion of person-centred care across various clinical settings and populations. An important enhancement to the original curriculum was the inclusion of the notion of embodied selfhood, ^4-6 a perspective that emphasizes the importance of bodily movements and gestures for self-expression, even when cognition is severely impaired.

To facilitate understanding of this concept, the DVD entitled Expressions of Personhood in Alzheimer’s, which is a collection of research-based vignettes about embodied selfhood16 17 was used. The production itself consisted of five separate vignettes, which were thematically connected in that all featured bodily expressions of selfhood by severely cognitively impaired residents of an Alzheimer Support Unit. These were actual observed occurrences drawn from ethnographic research on an Alzheimer Support Unit.^{4, 6} The following five instances of actual observed occurrences served as the basis for the scripts of the vignettes: 1) a female resident struggles to pull out a string of pearls from underneath her bib so that they could be seen by the other residents seated at her table without the staff ever responding to her proud display of her pearls (see Figure 1); 2) a resident who has no recollection of her talent to weave repeats “I cannot” as a program instructor demonstrates for her how to weave a canvas, but once a threaded needle is placed between her fingers she proceeds to weave with proficiency; 3) a resident who sees another resident seated at the dining table alone with her breakfast untouched gestures for her to eat as she peels for her the hard boiled egg and removes the foil lid of her juice; 4) a resident believes that her deceased husband to whom she was married for 65 years has just died, and she gestures to a nurse who tries to console her to “sit Shiv’ah” with her (the Jewish ritual of prescribed mourning following the death of a parent, spouse or child), and the nurse does; and 5) on the eighth day of Hanukkah a party is organized for the residents and following the celebratory lighting of the Menorah, when staff begin to take the residents back to the unit, one resident resists and, while staff are busy tending to other residents, she slowly makes her way across the room in her wheelchair to where the Menorah stands, and she covers her eyes and whispers a prayer to herself.

Another DVD of dramatized vignettes was used, specifically the vignette entitled “Good Morning Mrs. Vickers” from the DVD entitled Real Stories ²⁰ that contrasts two care scenarios to challenge the assumption that it takes more time to practice person-centred care. To further facilitate understanding, practitioner-resident interactions observed in qualitative research ^{4, 6} were translated by a playwright into pre-scripted role plays that were enacted by the health care practitioners. These role-plays were intended to foster problem-solving, deciphering of non-verbal communication, and more generally to simulate the experience of impairment, evoke understanding, and foster empathy. ²¹

Setting and participants

The intervention was implemented in 2 long-term care facilities located in central Canada. Twenty-four practitioners in total participated in the study (personal support workers, n=16; nurses, n=4; allied health care practitioners, n=4). You can see from the demographics table that almost all were female and were personal support workers, the majority fell in the 40-49 or above 50 age bracket, and worked in the facility for more than 4 years.

Focus groups and interviews

Of the 24 participating health care practitioners, ¹⁴ participated in focus groups (Facility A, n=7; Facility B, n=7) and 10 in interviews (Facility A, n=5; Facility B, n=5). Focus group discussion explored the effectiveness of the intervention in teaching the approach to person-centred care that emphasizes embodied selfhood, and changes in practice that resulted from its implementation; and the factors related to the intervention itself (e.g. role-play scenarios) that influenced the effectiveness of the intervention as an educational modality. In-depth interviews were subsequently conducted to specifically probe issues regarding resident agitation since agitation is a persistent challenge in dementia care.

Data analysis

Verbatim transcripts were analyzed using thematic analysis techniques.²² Presented here is post-intervention data to illustrate participants’ perceptions regarding the effectiveness of drama as an educational modality to teach the embodied selfhood approach to person-centred care, and to influence direct care. Findings are organized thematically: “Meaning beyond dementia”, and “the influence of the approach to care” with both themes capturing the effectiveness of the drama-based components of the intervention in teaching an approach to person-centred care that emphasizes embodied selfhood, and in facilitating the positive relational outcomes that resulted from its implementation.

Meaning beyond dementia

When asked to discuss the effectiveness/ineffectiveness of the drama-based components of the intervention as learning techniques, many respondents identified role-play scenarios and the videotaped vignettes as sources of new awareness that residents’ actions can be meaningful self-expressions. For example, in both study sites practitioners reflected on their new insight that behaviour is not always symptomatic of dementia, and the importance of deciphering the meaning of residents’ behaviour.

The vignettes…teach you that you don’t just assume that [residents] are being difficult…take the time to figure out what is wrong, what is it that you’re not doing that she wants you to do because she cannot express what she wants [Facility B, Interview, PSW, original emphasis].

In order to facilitate understanding of the meaning of residents’ behaviour, practitioners indicated they learned to seek information from the families about residents’ biographical history and preferences which was a key message of the role play scenarios. For many practitioners one particular role-play scenario stood out in terms of illustrating the importance of family for gaining familiarity with residents’ preferences.

The role play required study participants to portray one of two roles: either a non-verbal resident who intensely disliked the orange juice repeatedly offered her yet could only communicate this non-verbally; or the practitioner serving the juice who was confronted with seemingly nonsensical grimaces, abrupt hand motions and thrashing when serving breakfast to the resident. (T)he role play…didn’t tell us everything because we couldn’t figure out why she was pushing [the orange juice]…but it tells us there is meaning [and] why it’s important to understand it….[Facility B, Interview, PSW]

Later in the role play, practitioners realized the importance of family for seeking information in relation to the behaviour associated with the food aversion.

(B)efore [the role-play] we would…give them the orange juice and they don’t drink it, okay, they don’t drink the orange juice, maybe because of the dementia…. But speaking to family gives us, you know, turn on a little light in your head that said, “Oh! So that’s why she didn’t [drink] it!”…[Facility B, Interview, PSW, original emphasis]

In reference to the role play, some PSWs reflected on their own practice experiences involving resident preferences and the subsequent insight gained from family members:

(W)e give her coffee, and then the daughter came and said “she’s English, she likes tea! She always have tea!” You know, so… sometimes we are doing this complete opposite of what they really want or what they’re used to. [Facility A, Interview, PSW]

Influence of the approach to care

In addition to practitioners using information gained from speaking with family to contextualize residents’ behaviour, they also reflected on how their own approach to care interactions influenced the residents. For example, in reference to the vignette “Good Morning Mrs. Vickers” (which contrasts two care scenarios to challenge the assumption that it takes more time to practice person-centred care), practitioners reflected on the implications of rushing residents during care activities. A PSW indicated that the video served as a reminder to him that when interacting with residents, rushing can cause agitation:

But sometimes, especially in the morning you have to rush rush rush. Sometimes I said “Oh my god, I remember my education”, the one [from the video] that don’t…rush residents because if you rush them it will affect you, it will affect me and it’s going to be a disaster, it takes a lot more time…don’t rush the residents because it cause agitation! Oh, with Mr. Reynolds, when you rush him eating?...Oh my god, he will give you a big whack and a big kick. [Facility A, Interview]

The power of the video as a pedagogical tool is further evidenced by the following statement of a PSW who indicated that she will “catch” herself when rushing a resident:

PSW: We have a lot of residents on our floor…they’re gonna lash out they’re gonna probably spit on you, try to hit you, they’ll get aggressive…especially if you’re in a hurry. If you’re in a hurry, you all do it, ‘cuz we’re in a hurry we have to get done at this certain time…We all do it, but sometimes I catch myself.

Moderator: Sorry, catching yourself because of…?

PSW: Of the video. It makes us more aware. Like when we first we probably go in and [rush the resident] and then after watching the video, it’s like…[observation note: PSW begins to jostle the PSW beside her to demonstrate how she rushes a resident and then stops abruptly to illustrate how she catches herself in the course of doing so]. [Facility B, Focus Group, original emphasis]

In this same focus group, further reflection on the vignette “Good Morning Mrs. Vickers” yielded a seeming paradox: slowing down actually saves time. A PSW first described the behavioural consequences of rushing care:

If you approach a resident rushed…you know they’re not gonna cooperate, they’re gonna fight back, they’re gonna resist. And you’re gonna have to leave them, go do something else, and then come back. [Facility B, Focus Group, PSW]

Patience specifically was identified as a significant outcome of the realization that rushing signals an uncaring attitude, and can cause agitation and resistance to care. The following comment illustrates the impact of having played the role of a resident:

Being in their position makes me as a caregiver…more cautious about the fact that one second that I couldn’t wait before, now I give…one more minute. For example, I’m feeding a resident…if the resident would tell me “wait a minute”, I would understand better now that wait a minute means “just wait for me, do not rush me”. [Facility B, Interview, RN, original emphasis]

The purpose of the role-play scenarios was to simulate for practitioners some of the discomforts and impairments that are common to the residents. For example practitioners were asked to switch their shoes so the right shoe was on the left foot and vice versa, to keep their fingers stiff, hunch over, and to wear glaucoma glasses. Practitioners gained from the simulation technique a heightened awareness of the importance of independence which for all of the residents was compromised by their impairments. In the following example, a PSW described how role-playing a resident being fed gave her insight into why residents often resist being fed, and as a result she now allows them to feed themselves.

PSW: She come in with spoon to put in my mouth. Geez god help me, don’t feed me [observation note: putting her hands up in front of her mouth], I can feed myself. So then it opened my eyes. When I come to feed the residents and they always say “no no no no”…That’s the same thing, they put their hands up in front of you like this [observation note: she motions how the residents raise their hands in front of their mouths to resist being fed].

Interviewer: What you did [in the role-play].

PSW: Same thing that I did.

Interviewer: What changed…after that?

PSW: So here you are trying to tell them you have to eat. And they don’t want it. And here you bringing the spoon…and then [they] get angry. So now when I come, and [they] put their hand, I leave them. If [they] want it, [they] will eat it. [Some] don’t want you to feed. [Facility B, Interview, original emphasis]

Conclusion

Our study found that when practitioners embraced person-centred care that emphasizes embodied selfhood it facilitated understanding that behaviour can be indicative of self-expression. This prompted them to speak to family in order to help decipher the meaning and significance of behaviour that was previously unrecognized or deemed symptomatic of dementia. In attributing to residents’ behaviour a greater range of meaning, practitioners further understood how their own approaches to care interactions often provoked residents’ aggressiveness and resistance to care. Patience, slowing down during care activities, and supporting residents’ independence were notable outcomes of this new understanding that reduced residents’ agitation and resistance to care, which in turn improved the time efficiency of practice in the absence of pharmacotherapies and other restraints.

The incorporation of the notion of embodied selfhood,4-6 and drama as a novel pedagogical tool into educational initiatives17 23 24 has enormous potential to facilitate a shift from viewing behaviour as a problem to be controlled, to understanding the breadth of meaning underpinning self-expression in dementia. It is this shift that is required to create a new ethic of dementia care that respects individuals with Alzheimer’s disease as embodied beings deserving of dignity and worth.

Acknowledgements

This work was supported by a Canadian Institutes of Health Research (grant number MOP – 82889 to Pia Kontos, Principal Investigator). Pia Kontos gratefully acknowledges salary support from the Canadian Institutes of Health Research, New Investigator Award (award number MSH – 87726), and from the Ontario Ministry of Health and Long Term Care, Career Scientist Award (award number 06388). Toronto Rehabilitation Institute receives funding under the Provincial Rehabilitation Research Program from the Ministry of Health and Long-Term Care in Ontario. The views expressed here do not necessarily reflect those of our supporters or funders.

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co-authors

• Pia C. Kontos, PhD (Corresponding author), Research Scientist, Toronto Rehabilitation Institute, Assistant Professor Dalla Lana School of Public Health, University of Toronto
• Gail J. Mitchell, PhD, Professor School of Nursing, York University, Director/Chair York-UHN Nursing Academy
• Bhavnita Mistry, MA, Research Associate, Toronto Rehabilitation Institute
• Bruce Ballon, B.Sc. MD ESP(C), Director Psychiatry Simulation Innovation Centre, Mount Sinai Hospital, Assistant Professor, Faculty of Medicine University of Toronto

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