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Abstract

What can pleasure in the nursing home teach us about dementia and subjectivity? In this article I seek to challenge the assumption that the ‘fourth age’ involves the loss of subjectivity. In presenting dementia as a single pathway towards loss and decline, alternative pathways that provide more hopeful imaginaries become obscured. Drawing on ethnographic fieldwork in residential dementia care, I show how care professionals craft conditions that invite residents to take pleasure in, for example, dancing and bathing, and thus to become what I call ‘appreciating subjects’. Although residents do not craft these conditions themselves, they are active in accepting the invitations offered and enacting their appreciations. I argue that pleasure is a relational achievement, one that is contagious for those who let themselves be affected.
Pleasure and Dementia: On Becoming an Appreciating Subject
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Abstract

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Keywords%

Pleasure in dementia care
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 9
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;*++2/ 
Published as Annelieke Driessen ‘Pleasure and Dementia: On Becoming an Appreciating Subject’
The Cambridge Journal of Anthropology 78&,/ *7<*3 '
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!
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!!!#
 @
!&6*++=%8825 (*+,-/

 ,
!
!
$ 
 6
A
!)1&,333/ !
,#!

$&  B*++-/!

#&*+,+/
Published as Annelieke Driessen ‘Pleasure and Dementia: On Becoming an Appreciating Subject’
The Cambridge Journal of Anthropology 78&,/ *7<*3 '
*>>
 
$$ @
 
!
A
;
A
! 
The emergence of appreciating subjects
!"!
 !!#
"!!!!

 C

%!!
!
!6
!&*++=%837/>
&/
$!$& / 
9
#
&6*+,,%-,./ <

A5 @
"#
!
*
!
 (


Published as Annelieke Driessen ‘Pleasure and Dementia: On Becoming an Appreciating Subject’
The Cambridge Journal of Anthropology 78&,/ *7<*3 '
 !!
!
 7
0)1!
&,333/
!!
&/ !
!
!& %**-/ 6
>
$ D!
 
6!>!4
4!)
1!<
&,333%**=4**8/ ;& %**7/
!!
!"
!
! !
& %***/ 
 ;!!4
!!
>
& %**,/< 
;!

E'
7;& D!
*++3/
9

#FF
Published as Annelieke Driessen ‘Pleasure and Dementia: On Becoming an Appreciating Subject’
The Cambridge Journal of Anthropology 78&,/ *7<*3 '
# '!
!#
!!&*++=5  / 
;'
<
 B! '
4
4G!
H&'  / 
;#
!!
 
1)'
!!!!
!
 @!*+,.*+,=#.
I!=""!!
! 
!J&!!
!<!!
/' 8
.K#!&
G<HA
/&/
! 1
!

=
8!!
J! ;!
0B99?
C "!!
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 !&/"
!!!#"
!! L
%MM  MM! 
Published as Annelieke Driessen ‘Pleasure and Dementia: On Becoming an Appreciating Subject’
The Cambridge Journal of Anthropology 78&,/ *7<*3 '
L"!"!
<!!

 !
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4
! 
!
! !
!<
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!!
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-!!A!#"
>K( !
!
Published as Annelieke Driessen ‘Pleasure and Dementia: On Becoming an Appreciating Subject’
The Cambridge Journal of Anthropology 78&,/ *7<*3 '
Dancing: an invitation to pleasure
"!<!!!
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E 9!
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$ NDE
$
 9
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!
;!;6I
> 6?!!!
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 "
4!
$!#
4 
!$
!!
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! D!<#!
J E
$
Published as Annelieke Driessen ‘Pleasure and Dementia: On Becoming an Appreciating Subject’
The Cambridge Journal of Anthropology 78&,/ *7<*3 '
6I<EI! 
1!!<!
<#D'

 !
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GHP
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 6I!<!
,3.+,3=+!!! 
!6I
>%

1P;!!!GH
!K!G,3.=H!
0!!
!
!0! 

;!%
! 3 1
!
 ;
2;
&/ ; 


3$!
&?<@*+,./!!
!A L
!B*+,- !

!
Published as Annelieke Driessen ‘Pleasure and Dementia: On Becoming an Appreciating Subject’
The Cambridge Journal of Anthropology 78&,/ *7<*3 '
; 9 
D 0<
 1$ @!
K!!4
!>!4
 9ED
!!
! 
I!!
!"
!%!
! ;
!
 9!5! ;
!! ;
! 
 
A
9DE
;$$!
!%!E6
: 1"D
!6? !6?
E!" 

 ;69!
! @!
!
!J 6?!
69!!!
 @ ;! 69
!!
Published as Annelieke Driessen ‘Pleasure and Dementia: On Becoming an Appreciating Subject’
The Cambridge Journal of Anthropology 78&,/ *7<*3 '
! 6?
!PGPHA
 6E
">! 9
Q! 
6E
5! 
'!$)1
!
 @
A
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;!4
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D Q!
 @GH
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M ;
!!!!G
H !!!
!

Published as Annelieke Driessen ‘Pleasure and Dementia: On Becoming an Appreciating Subject’
The Cambridge Journal of Anthropology 78&,/ *7<*3 '
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 ;$!
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J ?
<!)1
 #!
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$
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D#
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
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5
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Published as Annelieke Driessen ‘Pleasure and Dementia: On Becoming an Appreciating Subject’
The Cambridge Journal of Anthropology 78&,/ *7<*3 '
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 '#
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A
 
Bathing: surrendering to crafted conditions

# 1!$
;
'!<<
$
!!@!!
9A
Published as Annelieke Driessen ‘Pleasure and Dementia: On Becoming an Appreciating Subject’
The Cambridge Journal of Anthropology 78&,/ *7<*3 '
K,3-+
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@"#
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,+@!!!!
#$ N<<
!!A 
Published as Annelieke Driessen ‘Pleasure and Dementia: On Becoming an Appreciating Subject’
The Cambridge Journal of Anthropology 78&,/ *7<*3 '
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# ,,
N6@
6( 1
!6( 
"!! 9
! @%;
6E! @
! 6(!!
! 
N 9!
 
1!;!
! 9!
! !
 ;! ;
 P
 9 9@
!
 K!! @!
!! 9!
#! @
!44!
 ;#
 ;>
&*++.51*+,*/!!
A$ 6
(@
,,9! '!
!!&*++8%37/5(6
!!&*+,./5
@
&*+,.%,,84,78/
Published as Annelieke Driessen ‘Pleasure and Dementia: On Becoming an Appreciating Subject’
The Cambridge Journal of Anthropology 78&,/ *7<*3 '
% 1
$%!
$
$ 
@!!!%
;!
 ;!!! %
1!!!
#;!
4!>5
! 
N#@
6:%1 1! N
#P ;
@#6:
! 1
! 
!< ;
#$!
> ;!
!!6? @
!
#! 9
!! @J
!!!%
Published as Annelieke Driessen ‘Pleasure and Dementia: On Becoming an Appreciating Subject’
The Cambridge Journal of Anthropology 78&,/ *7<*3 '
O!,*O
O!!
 O9GH @!
 # 9!5
! 9G
H 9O
 @
G#H % O
R
6?!!
 L
 
! 
9
$ !!6?!
 @!!
! 6?!!
!!$ 9
!!
@ 
9 @
%! O
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Published as Annelieke Driessen ‘Pleasure and Dementia: On Becoming an Appreciating Subject’
The Cambridge Journal of Anthropology 78&,/ *7<*3 '
Pleasure in daily care
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!!& *+,-/ ;$>
!!$%
1!

 '!
Published as Annelieke Driessen ‘Pleasure and Dementia: On Becoming an Appreciating Subject’
The Cambridge Journal of Anthropology 78&,/ *7<*3 '
 D
!
GH! 6
!!!@
!!! 96
@!"#
@!"!
"! 6'
!$!
 !D
6!!>
 
!6(
 !
!

Conclusion
'!#%
 ,7;!
"%
E
4!P4
!
$
,7;
!<!
 !
!
!
!$! ?!!
 '
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Published as Annelieke Driessen ‘Pleasure and Dementia: On Becoming an Appreciating Subject’
The Cambridge Journal of Anthropology 78&,/ *7<*3 '
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 
Published as Annelieke Driessen ‘Pleasure and Dementia: On Becoming an Appreciating Subject’
The Cambridge Journal of Anthropology 78&,/ *7<*3 '
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!!!

Published as Annelieke Driessen ‘Pleasure and Dementia: On Becoming an Appreciating Subject’
The Cambridge Journal of Anthropology 78&,/ *7<*3 '
#
!
 !#A
"4
4!
!!
!!!

Acknowledgements
"!!"4
 D
 E;
A!!
B'*+,8!
 E'
::<6;0(9
EDL@10B
!! 6
"'6:;
I!!

References
9 *+,+ !"# KB%C'
@!B  '@ ' NB1 B? @ 
*++- ' B @! B&/!$
%&'' @%NC'
,-74,2-
@@ *+,. %(''
N#%@@
Published as Annelieke Driessen ‘Pleasure and Dementia: On Becoming an Appreciating Subject’
The Cambridge Journal of Anthropology 78&,/ *7<*3 '
BK *+,- 16NE66&0@/
;;:%N00' '*,6 
%MM M8.72M<<<<<<<!<
<<<<<<<<<M*+,*2*.3=3+3+<
7-8=--
B6 *++- @11L%9(A
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)*7%=248, %,+ ,+,8M A *++8 ,, ++,
( *++. ;@BL%L<I<) +
*,,+&*47/%,,,4,7. %,+ ,,--M,7=-+7.S+.+.*372
 *+,- 9<%
B E @L :&/'#%&-
!" D%'6,,,4,77
)0  1 ,333 9%6
C !,&.-&,/%**+4*.- %,+ ,,,,M ,.8-<
3=.S ,333 +7.3+ #
)E L E  1 *++7 ;0(@
B  L&/+%../ 
BB%6'*+=4**-
)A<) 0 6<D E *+,7 
D@B'!DB1
@"B%'9 ,*&=/%=*74=7= 
%,+ ,,--M,.-,7+,*,,.*3-=7
16 *++2 %' 
01"*.&*/%*+-4*,* %,+ ,++*M *,-8
1? *+,* ;$%B!
9@ 27,&8/%.=34.-8 
%,+ ,+2+M+,.=3-.+ *+,* 8-.33,
1 *++, 6D%;' !3'*
,,2&=/%,4** %,+ ,,--M+*87*-8+,**+=,3.+
Published as Annelieke Driessen ‘Pleasure and Dementia: On Becoming an Appreciating Subject’
The Cambridge Journal of Anthropology 78&,/ *7<*3 '
1 *++- ;;;1C;%;9 
',,&,/%3-4,,. %,+ ,,--M,-.33-==+-+-73*7
1 *+,- Q9O1!BB
0N?) 0'.,+&,/%,,*4,*, 
%,+ ,+2+M,-=7+7=+ *+,8 ,*8+8*3
1' B ) *+,= &4%!5
D%'6
:!; ,337 '' 0
1"2%=.,4=.= %,+ ,++*M 37++2+-+*
:!; ,33- &%!"'5 6%
NC'
:' *++. 0?J90
A ,*.&8/%2*342.3 
%,+ ,+,-M9+,..828S+.++*7-=
D!E *++3 K!;69 @ ;& /
!6+',! 66%<@!
,.,4,=2
6) 9 ' : *+,7 %L
9$:!478 0# ?
%MM   MM# MMM!LM.,M
6 *++= N@%;6
6N; ',,3&8/%
88-4-++ %,+ ,+2+M+3=+*72+=++78=8.2
6 *++2 6A6%0
'K 173%324,,+ 
%,+ ,+,8M  *++8 ,* ++-
6 *+,, DD%9
9;9'B ,3!*
#978&=/%-+.4-** %,+ ,,--M+,8**.73,+7387.3
Published as Annelieke Driessen ‘Pleasure and Dementia: On Becoming an Appreciating Subject’
The Cambridge Journal of Anthropology 78&,/ *7<*3 '
K6 ; ?' 0 ? *++* ;!6(
B'? ,&*/%,374
*,, %,+ ,,--M,.-,7+,*+*++,++*+8
'E   &1(%./9,
' C
'E *++= 0%@'' #
',7&7/%*+74**, %,+ ,++-M,+-*2<++=<8..2<8
'E *++8 BA%BBA
61B '323"7+&,/%--4,+. 
%,+ ,++-M,,+,7<++8<3++3<A 
?<@6 & / *+,.  '6 
;E *++2 N?B 2
:**&./%7,7477= ?%MM ! M,+ ,,,,M ,=.2<
,72- *++2 +++78 #
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Published as Annelieke Driessen ‘Pleasure and Dementia: On Becoming an Appreciating Subject’
The Cambridge Journal of Anthropology 78&,/ *7<*3 '
... Successful aging, a core concept defined in gerontology in the 1980s, posits that late-life should be defined by productivity, creativity, positivity, and independence (ibid.:3-4). People with dementia who fail to live up to these ideals signify an unwanted future, Sandberg and Marshall argue: ''Thus the imaginary of dementia as monstrous springs not only from dehumanizing discourses which associate dementia, embodiment, and subjectivity with the living dead, but also with unknown/unwanted futures'' (ibid.: 5-6, see also Driessen 2018;Herskovits 1995). Also dealing with ''unwanted futures,'' Natashe Lemos Dekker (2020) describes how the predicted loss of control, dignity, and autonomy motivates people with dementia in the Netherlands to request euthanasia. ...
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Building on 12 months of ethnographic fieldwork among people with Alzheimer’s disease living in Denmark, I argue that the loss of a sense of time caused by Alzheimer’s is not a subjective loss, but rather an intersubjective one. Alzheimer’s disease entails living with desynchronized rhythms, time that can be made painfully explicit, and numbers becoming increasingly tricky to manage. Drawing on Thomas Fuchs’ theory of how individuals live in “basic contemporality,” I explore moments of temporal rupture, and how people with Alzheimer’s challenge their social relations due to their different sense of time. The article contributes to ongoing discussions about belonging. Taking inspiration from Tine Gammeltoft’s description of how belonging entails fragile attempts at being part of something larger, and is thus a joint social practice, I show how one dimension of belonging’s fragility is the inability to be in synch with social time. By proposing the notion of temporal belonging, I suggest that sustaining a sense of belonging is also about being able to participate in the rhythms and tempo of social life.
... In this article, I explore this co-existence of efforts to maintain meaningful relations and experiences of what has been referred to in the literature as pre-death, or anticipatory grief in dementia (Blandin and Pepin 2015;Large and Slinger 2015;Lindauer and Harvath 2014;Moore, et al., 2020;Peacock, et al., 2018). While public discourses tend to address dementia in terms of loss, using metaphors of absence and disappearance, there is also an increasing number of studies that address the possibilities of a good life with dementia (Driessen 2018;Grøn and Mattingly 2018), the relational, as opposed to biomedical, practices through which the person with dementia is held in relations (Moser 2011), and arts-focused moral experiments to engage the person with dementia (Jeong 2020;Taylor 2017). My contribution to this growing body of literature is to demonstrate the ways in which loss and connection interweave and sometimes come apart. ...
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In this article, I address the experiences of family members of people with dementia, as they expressed the sensation of gradually losing the person with dementia. Based on ethnographic fieldwork in nursing homes in the Netherlands, and contributing to the anthropology of grief, I explore the co-existence of experiences of anticipatory grief and manifestations of care to maintain meaningful relations. I show how my interlocutors adapted to changing circumstances as the disease progressed, and in so doing found new ways to relate, as well as prepared for future losses and the expected end of life. I argue that anticipatory grief is temporal and relational, encompassing both present and future losses, and involving a continuous negotiation between the loss and the continuing relationship. I underscore the entanglement of loss and connection, showing how both exist parallel to, and may emerge from one another, and demonstrating how an anthropological approach to anticipatory grief can reveal the nuanced and equivocal character of experiences of illness and at the end of life.
... Needless to say, this way of framing dementia as a kind of living death shapes how those affected by dementia-the people diagnosed with the disease and their families and friends-can approach and respond to their predicament. This framing threatens to eclipse other-in a very literal sense-life-affirming aspects of living with dementia and, therefore, calls for a critical investigation of potentiality and the dynamics of potentiation in life with dementia along the following dimensions (Basting, 2006;Driessen, 2018;Taylor, 2008;Taylor, 2017): ...
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In this article, we outline a critical phenomenology of potentiality as it emerges in life with dementia. Foregrounding the sources of everyday creativity that are part of life with dementia, we propose a critical counter-argument to that of dementia as a form of living death. Our ethnographic vantage point is an episode we encountered during fieldwork at a dementia unit in Denmark. Here, one of the residents of the unit, Ellen, is interrupted in her ways of inhabiting the world by an intimate encounter with a polymorphous creature she calls ‘the Little One’. We argue that this interruption is an ontological event that ushers in new meaningful possibilities for Ellen and the Little One—and for Ellen’s relatives, caregivers, and several other residents—to co-inhabit the world. In critical dialogue with recent theoretical developments in the anthropology of cognitive disability and the ontological turn, we develop a differential social ontology capable of tracing how such interruptions characterize everyday life at the unit—and how various ways of responding to the potentiality of interruptions form responsive communities of care that cross often profound differences between people and between humans and non-humans, such as Ellen and the Little One. We conclude by briefly sketching some implications of these arguments for the care ethics that underlie institutional practices of dementia care.
... Well-trained staff members play a pivotal leadership role in IPs. Additionally, individuals from different generations are encouraged and guided to establish an interactive relationship with residents with dementia (Bethany et al., 2015;Driessen, 2018;Low et al., 2015;Perugia et al., 2018). ...
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Aim: This meta-analysis evaluated the effectiveness of intergenerational program participation for long-term care institution residents with dementia. Design: A systematic review and meta-analysis. Methods: Ten electronic databases were systematically searched until August 2020: CINAHL, the Cochrane Library, EBSCO, EMBASE, Ovid Medline, ProQuest, Psychology and Behavioral Sciences Collection, PubMed, Scopus, and Web of Science. The Joanna Briggs Institute tool (JBI tool) was used for the quality appraisal of the included publications, and Review Manager 5.3 was used for the meta-analysis. Results: Thirteen articles were identified (1993-2015). Intergenerational program participation could improve the pleasure level and significantly reduce disengagement behaviours of residents with dementia. The intergenerational program intervention caused no apparent improvement in their quality of life, depression levels, and engagement levels.
... Duong et al., 2017;McKhann et al., 2011;Perry & Hodges, 1999). Within this understanding, persons with dementia divested from their cognitive abilities are portrayed through charged metaphors, such as "vegetables," "empty shells," "living dead" and "sea[s] of forgetfulness" (Driessen, 2018;Gubrium, 1986;Hashmi, 2009;Moser, 2008). The losses and constraints associated with dementia have unsurprisingly led to the assumption that people living with dementia are not able to exercise agency, being no longer endowed with free will, autonomy, or the ability to make informed decisions (Aquilina & Hughes, 2005;O'Connor et al., 2018). ...
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Background: Arts-based programs can counter the dominant narrative of loss associated with dementia, in part through fostering expressions of agency. This study uses social science theories of interaction between structure and agency to examine how an arts-based movement program, entitled Mouvement de passage, supports agency among individuals with dementia. Methods: Ethnographic methods were used to trace how participants enact agency within the structure of the movement program. The program's sessions were video recorded and iteratively analyzed. Results: Participants expressed their agency in three ways: 1) transforming the exercise's structure according to individual interests and desires; 2) resisting the exercise's structure; and 3) improvising movements collectively. Conclusions: The movements of individuals with dementia were shaped by both program structure and individual/collective expressions of agency. The design of Mouvement de passage, based on open-ended structures and voluntary participation, provides a template for developing interventions that foster agency among these persons.
... 5. Tina and her partner Karl shared many of the activities in the hospital quite closely, as seen in her use of "we" during the interview. 6. Cf. Driessen (2018) for how care is done in bathing people with dementia in Dutch nursing homes. 7. Using the case of hypoglycemia, Mol and Law (2004) argue that bodies are done in practice. ...
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