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Walking in the Neighbourhood : Performing Social Citizenship in Dementia Phinney, Alison; Kelson, Elizabeth Ellen; Baumbusch, Jennifer; O’Connor, Deborah; Purves, Barbara 2016

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Dementia:	The	International	Journal	of	Social	Research	and	Practice,	accepted	Feb	2016	 		pg	1	of	29Walking	in	the	Neighbourhood:	Performing	Social	Citizenship	in	Dementia						Alison	Phinney,	PhD,	RN	University	of	British	Columbia	School	of	Nursing		Elizabeth	Kelson,	PhD	University	of	British	Columbia	School	of	Nursing		Jennifer	Baumbusch,	PhD,	RN	University	of	British	Columbia	School	of	Nursing		Deborah	O’Connor,	PhD,	RSW	University	of	British	Columbia	School	of	Social	Work		Barbara	Purves,	PhD,	S-LP(C)	University	of	British	Columbia	School	of	Audiology	and	Speech	Sciences												Corresponding	Author		Alison	Phinney,	RN,	PhD	email:	alison.phinney@nursing.ubc.ca	tel:	1-604-822-7484	fax:	1-604-822-7466	University	of	British	Columbia	School	of	Nursing	T201-2211	Wesbrook	Mall	Vancouver,	BC	V6T	2B5	CANADA		 	Dementia:	The	International	Journal	of	Social	Research	and	Practice,	accepted	Feb	2016	 		pg	2	of	29	ABSTRACT	The	proliferation	of	community-based	activity	programs	for	people	with	dementia	suggests	an	appetite	for	new	approaches	to	support	quality	of	life	and	well	being	for	this	population.	Such	groups	also	have	potential	to	promote	social	citizenship,	although	this	remains	poorly	understood.	This	article	presents	findings	from	a	subset	of	data	from	an	ethnographic	study	of	a	community-based	program	for	people	with	young	onset	dementia;	it	focuses	on	Paul’s	Club	and	the	experiences	of	12-15	members	who	are	physically	healthy,	with	moderate	to	moderately	severe	dementia.	Analysis	suggests	how	aspects	of	social	citizenship	are	constructed	and	revealed	through	the	Club’s	everyday	practice	of	walking	in	the	neighbourhood.	Three	major	themes	emerged:	Keeping	the	focus	off	dementia;	Creating	a	place	of	belonging;	and	Claiming	a	place	in	the	community.	How	the	group	balances	consideration	of	members’	vulnerability	and	agency	is	discussed,	and	the	article	concludes	with	implications	for	future	practice	and	research	initiatives.		 	Dementia:	The	International	Journal	of	Social	Research	and	Practice,	accepted	Feb	2016	 		pg	3	of	29INTRODUCTION	Community-based	activity	groups	for	people	with	dementia	are	burgeoning	in	Canada,	the	UK,	and	beyond.	Many	are	grassroots	efforts	that	are	emerging	outside	the	institutionalized	contexts	of	health	and	social	care.	For	example,	Dementia	Adventures	in	England	arranges	outdoor	activities	and	adventure	holidays	for	people	with	dementia	and	their	families	in	order	that	they	can	“live	well	with	dementia	and	have	a	sense	of	adventure	in	their	lives”	(Mapes	&	Hine,	2011).	The	Culture	Bus	in	the	US	provides	opportunities	for	people	with	early	stage	dementia	to	visit	cultural	sites	and	community	events	with	the	aim	being	“to	challenge	the	senses,	inspire	imagination	and	expand	knowledge	about	ourselves	and	the	world”	(Partners	for	Livable	Communities,	2012).	Programs	such	as	these	are	variously	organized	under	the	broad	umbrella	of	community	services	and	comprise	a	diverse	range	of	activities.	Whether	it	be	Singing	Groups	in	Scotland	(Osman,	Tischler	&	Schneider,	2014),	Dinner	Clubs	in	Canada	(Cassolato,	Keller,	Dupuis,	Schindel-Martin,	Edward	&	Genoe,	2010)	or	Men’s	Sheds	in	Australia	(Brown,	Foley,	Harvey	&	Gleeson,	2007),	taken	together	these	kinds	of	groups	represent	a	potentially	important	shift	in	how	society	understands	and	responds	to	dementia.		To	begin,	it	is	a	move	away	from	an	emphasis	on	behavior	and	function	to	acknowledge	the	importance	of	well-being	and	quality	of	life	for	those	living	with	the	disease.	Studies	have	shown	that	physical,	creative	and	leisure	activities	can	have	significant	benefits	in	this	regard	(e.g.	Genoe	&	Dupuis,	2014;	Parisi,	Roberts,	Szanton,	Hidgson	&	Gitlin,	2015;	Phinney,	Chaudhury	&	O’Connor,	2007;	Potter,	Ellard	&	Thorogood,	2011;	Zeilig,	Killick	&	Fox,	2014),	and	there	is	emerging	evaluative	evidence	that	community-based	activity	groups	are	a	way	to	bring	pleasure	into	people’s	lives	while	helping	them	sustain	important	social	connections	and	a	Dementia:	The	International	Journal	of	Social	Research	and	Practice,	accepted	Feb	2016	 		pg	4	of	29sense	of	personal	identity	(Davies-Quarrell	et	al.,	2010;	Hampson,	2009;	Kinney,	Kart	&	Reddecliff,	2011;	Phinney	&	Moody,	2011).	Our	purpose	in	this	article	is	to	take	the	analysis	a	step	further	to	explore	how	community-based	activity	can	potentially	support	social	citizenship,	which	we	understand	as	“a	relationship,	practice	or	status	in	which	the	person	with	dementia	is	entitled	to	experience	freedom	from	discrimination,	and	to	have	opportunities	to	grow	and	participate	in	life	to	the	fullest	extent	possible”	(Bartlett	&	O’Connor,	2010,	p.37).	Various	scholars	have	identified	the	importance	of	social	citizenship	for	people	with	dementia	(Bartlett	&	O’Connor,	2007;	Baumbusch,	2008;	Behuniak,	2010;	Cantley	&	Bowes,	2004;	Gilmour	&	Brannelly,	2010;	Milne,	2010),	and	there	is	increasing	interest	in	developing	policies	and	guidelines	for	better	supporting	people	with	dementia	as	active	and	engaged	citizens	(Whitfield	&	Wismer,	2006;	Williamson,	2012).	However	there	has	been	very	little	work	done	to	examine	the	potentially	important	role	of	community-based	activity	groups	in	supporting	social	citizenship.	That	is	the	purpose	of	the	research	we	are	describing	here.	Drawing	on	the	conceptual	work	of	Bartlett	and	O’Connor,	we	are	examining	the	question	of	how	these	kinds	of	community-based	activity	groups	might	create	opportunities	for	social	citizenship,	specifically	in	terms	of	the	following	aspects:	growth,	purpose,	participation,	community,	social	position,	and	freedom	from	discrimination	(2010,	p.40).		Toward	this	end,	this	article	presents	findings	from	ethnographic	research	that	we	have	conducted	with	Paul’s	Club,	an	innovative	social	activity	group	for	younger	people	with	dementia.	We	begin	by	describing	the	group’s	structure	and	operations,	and	then	go	on	to	discuss	how	this	group	demonstrates	the	potential	of	walking	in	the	neighbourhood	as	a	Dementia:	The	International	Journal	of	Social	Research	and	Practice,	accepted	Feb	2016	 		pg	5	of	29practice	that	constructs	social	citizenship	of	people	with	dementia	through	shared	engagement	in	social	activity.		Paul’s	Club	Paul’s	Club	is	an	independent	social	recreation	group	for	people	who	have	young	onset	dementia.	While	this	group	has	no	formal	connection	with	the	health	or	social	care	system,	most	of	the	members	are	referred	through	a	memory	clinic	at	a	large	teaching	hospital,	with	others	arriving	through	word	of	mouth.	The	group	is	supported	through	membership	fees,	with	additional	funding	coming	through	a	variety	of	fundraising	efforts.	Paul’s	Club	is	located	in	the	city	of	Vancouver,	Canada,	and	is	organized	as	a	social	enterprise	with	members	paying	on	a	sliding	scale	to	attend	anywhere	from	one	to	three	days	a	week	from	10	am-4	pm.	Members	come	from	Vancouver	and	its	adjoining	communities,	travelling	to	and	from	the	club	using	a	publically	funded	door-to-door	transit	service.	There	are	three	full	time	leaders,	one	of	whom	is	a	certified	recreation	therapist,	and	a	pool	of	approximately	15	volunteers	(referred	to	as	“friends”)	two	or	three	of	whom	come	each	afternoon	to	assist	with	outdoor	activities.	Each	day,	there	are	approximately	12-15	members	in	attendance,	all	of	whom	have	received	a	diagnosis	of	dementia	before	the	age	of	65.	They	are	physically	healthy	(very	few	have	other	medical	conditions),	and	are	described	as	having	moderate	to	moderately	severe	cognitive	impairment.	More	than	half	the	members	are	men,	and	there	is	some	cultural	diversity	in	the	group.	The	majority	are	from	middle	to	upper-middle	class	backgrounds,	although	the	dementia	has	led	to	considerable	financial	strain	for	some	families.	Most	members	are	living	at	home	with	their	spouse	(and	sometimes	with	other	family	members),	but	there	are	a	few	who	Dementia:	The	International	Journal	of	Social	Research	and	Practice,	accepted	Feb	2016	 		pg	6	of	29live	alone	at	home	with	the	support	of	a	care	partner,	or	in	one	case,	in	a	residential	care	facility.	Family	members	rarely	attend	the	group.	Given	that	these	are	younger	people	with	dementia,	most	spouses	are	employed	and	use	the	time	to	work	in	support	of	their	family.	Members	have	typically	stayed	with	the	club	for	a	period	of	one	to	two	years,	only	leaving	when	they	have	become	too	unwell	to	live	at	home.	Paul’s	Club	does	not	adhere	to	a	tightly	scripted	schedule,	although	there	is	a	more	or	less	typical	pattern	to	their	days.	Members	gather	each	morning	in	a	modern	downtown	hotel	that	provides	their	meeting	space,	and	the	day	begins	with	coffee	and	sweets	and	casual	conversation	around	a	table.	The	group	then	retires	to	a	seating	area	where	they	read	newspapers	and	talk	about	current	events.		For	an	hour	or	so	before	lunch	there	is	usually	some	kind	of	group	activity	such	as	yoga,	dance,	or	more	vigorous	aerobic	and	flexibility	exercises.	The	group	eats	lunch	at	a	lively	restaurant	next	door,	and	on	most	afternoons	they	go	for	an	extended	leisurely	walk	through	their	neighbourhood,	along	city	streets	and	waterfront	parkland,	ending	always	at	the	“gelato	place”	for	ice	cream.	After	ice	cream,	they	return	to	the	hotel	and	prepare	to	go	home.	It	is	these	afternoon	walks	that	are	the	focus	of	attention	in	this	article.		RESEARCH	METHODS	We	are	reporting	here	on	a	subset	of	data	derived	from	a	two-year	ethnographic	study:		Promoting	social	citizenship	for	people	with	dementia	through	community	based	programming.	The	larger	investigation	sought	to	explore	the	benefits	of	community	groups	for	people	living	with	dementia	and	had	two	key	objectives:	1)	to	explore	how	community-based	programming	Dementia:	The	International	Journal	of	Social	Research	and	Practice,	accepted	Feb	2016	 		pg	7	of	29can	promote	social	citizenship	for	people	with	dementia;	and	2)	to	evaluate	qualitative	methods	for	including	people	with	dementia	in	the	research	process.	Our	focus	here	is	on	the	first	objective,	and	specifically	our	analysis	from	the	first	phase	of	the	study	that	was	conducted	at	Paul’s	Club,	where	fieldwork	took	place	from	October	2014-November	2015.		The	primary	method	of	data	generation	was	participant	observation	(PO),	with	over	400	hours	of	PO	being	conducted	over	58	sessions.	Kelson	was	the	primary	researcher	in	the	field.	While	everyone	was	fully	informed	as	to	the	purpose	of	the	research,	her	day-to-day	role	was	a	participatory	one	where	she	was	known	primarily	as	a	“friend	of	Paul’s	Club”.		The	focus	of	the	PO	was	on	members’	actions	and	interactions	within	the	physical	and	social	environment,	as	well	as	the	verbal	and	nonverbal	exchanges	within	the	group.	Jottings	were	written	during	each	session	(often	using	the	text	function	on	a	smartphone)	to	capture	details	of	the	activities	being	observed	and	especially	to	document	verbatim	comments	from	the	members.	These	jottings	were	developed	into	more	detailed	ethnographic,	reflexive	field	notes	immediately	afterwards.	Because	walking	was	such	a	prominent	activity	for	Paul’s	Club,	many	PO	sessions	took	place	while	out	walking	with	the	group.	Walking	alongside	participants	during	PO	allowed	for	spontaneous	conversations	to	occur	in	an	unstructured	form,	a	go-along	interview	(Carpiano,	2009).	Members	live	with	varying	degrees	of	aphasia,	which	made	it	difficult	to	engage	individuals	in	a	traditional	interview	that	relies	primarily	on	verbal	communication.	Instead,	while	outdoors,	researchers	and	members	engaged	in	wide-ranging,	spontaneous	conversations	that	were	prompted	by	the	physical	and	social	environments	encountered	while	walking.	In	addition	to	field	notes,	conversations	were	captured	in	short	narratives	we	refer	to	as	walking	vignettes.	Building	on	Spalding	and	Phillips’	(2007)	discussion	of	the	use	of	vignettes	Dementia:	The	International	Journal	of	Social	Research	and	Practice,	accepted	Feb	2016	 		pg	8	of	29in	qualitative	inquiry	and	methods	developed	in	Kelson’s	(2013)	critical	ethnography	of	long	term	care,	our	walking	vignettes	are	composed	of	researchers’	descriptions	of,	and	reflections	on,	members’	bodily	engagement	with	the	physical	and	social	environment,	relational	aspects	of	the	encounter,	and	recollected	excerpts	of	conversation,	for	example,	a	member’s	reflection	on	the	weather,	how	they	felt	at	the	time,	or	his	or	her	opinion	of	the	experience.		To	further	facilitate	the	involvement	of	persons	with	dementia	in	this	research,	we	invited	members	and	leaders	to	participate	in	an	hour-long	focus	group.	Photographs	taken	by	the	leaders	while	out	walking	were	used	as	prompts	to	foster	conversation	and	reflection	on	club	activities.	As	a	visual	research	method,	photo-elicitation	is	valued	as	a	technique	capable	of	addressing	power	imbalances	found	in	the	conventional	research-based	respondent-interviewer	relationship	(Harrison,	2002).	Moreover,	Harper	(2002)	maintains	that	images	“evoke	deeper	elements	of	human	consciousness	than	do	words,”	suggesting	that	photo-elicitation	has	the	capacity	to	not	only	generate	more	information	within	interviews,	but	that	this	use	of	photography	“evokes	a	different	[emphasis	added]	kind	of	information”	(p.	13)	within	interviews.	In	order	to	elicit	these	kinds	of	reflections	on	members’	experiences,	we	organized	a	slide	show	where	club	members	were	encouraged	to	comment	on	the	photographs,	which	included	images	of	members,	group	activities,	and	the	places	frequented	by	the	group	on	their	afternoon	walks.	We	did	this	on	two	different	days	in	the	early	summer	of	2015	to	ensure	that	everyone	had	the	opportunity	to	participate	(n=9;	n=11).	Both	focus	groups	were	audio-recorded	and	transcribed	verbatim,	and	field	notes	were	taken	to	describe	details	missed	by	the	recordings.	Data	have	been	analysed	interpretively	using	the	general	inductive	approach	described	Dementia:	The	International	Journal	of	Social	Research	and	Practice,	accepted	Feb	2016	 		pg	9	of	29by	Thomas	for	“deriving	findings	in	the	context	of	focused	questions”	(Thomas,	2006,	p.237)	–	in	this	case,	how	aspects	of	social	citizenship	were	constructed	and	revealed	through	the	group’s	practice	of	walking	in	the	city.		Most	of	the	data	for	this	analysis	has	come	from	the	field	notes	(FN)	and	walking	vignettes	(WV).	In	addition,	we	have	drawn	from	the	focus	groups	(FG)	described	above,	a	two	hour	in-depth	interview	with	a	family	member	(FM),	as	well	as	document	analysis	of	existing	materials	that	were	shared	with	the	team.	This	included:	the	group’s	website	and	a	promotional	flyer;	a	“guidelines	for	volunteers”	document	that	was	developed	by	the	leaders;	results	from	an	anonymous	satisfaction	survey	that	was	completed	by	30	family	care	partners	in	the	summer	of	2014;	and	a	report	describing	the	program	that	was	prepared	by	the	leaders	in	the	spring	of	2015	as	part	of	their	effort	to	obtain	funding.		Approval	for	this	study	was	obtained	through	the	University	of	British	Columbia’s	Behavioural	Research	Ethics	Board	in	2014.	Those	who	were	interviewed	(either	through	go-along,	focus	group,	or	in-depth	interviews	as	described	above)	provided	informed	consent,	either	directly	or	in	the	case	of	some	members,	through	a	proxy.	A	process	consent	method	(Dewing,	2007)	was	followed	when	participants	were	interviewed	more	than	once,	or	when	they	had	forgotten	the	details	of	the	research.	This	allowed	us	to	revisit	and	reestablish	their	agreement	to	participate	at	each	encounter.		FINDINGS	When	we	first	started	this	research,	one	of	the	leaders	told	us	that	in	their	first	year	of	operation,	there	had	been	only	three	days	when	the	group	had	not	gone	out	for	a	walk	in	the	neighbourhood.	Rain	or	shine,	she	explained,	they	were	out	for	an	hour	or	two	each	day	walking	the	downtown	streets	and	the	paths	along	the	waterfront	park.	Through	the	course	of	Dementia:	The	International	Journal	of	Social	Research	and	Practice,	accepted	Feb	2016	 		pg	10	of	29our	subsequent	fieldwork,	we	did	note	occasions	when	poor	weather	kept	the	group	inside,	but	for	the	most	part	these	afternoon	excursions	remain	a	regular	part	of	the	routine,	and	through	analysis	of	the	vignettes,	field	notes,	documents	and	interview	transcripts,	we	have	come	to	an	understanding	of	how	for	this	group,	walking	is	an	act	of	social	citizenship.	In	what	follows,	we	explore	how	the	members,	leaders,	and	friends	of	Paul’s	Club,	by	walking	together	through	the	neighbourhood,	are	actively	constructing	social	citizenship	through:	Keeping	the	focus	off	dementia;	Creating	a	place	of	belonging;	and	Claiming	a	place	in	the	community.	In	the	findings	below,	examples	from	the	data	(either	in	italics	or	in	quotes)	have	come	from	field	notes,	unless	otherwise	indicated.	Keeping	the	focus	off	dementia	While	the	website	identifies	Paul’s	Club	as	a	group	for	people	with	dementia,	from	the	beginning	the	leaders	have	taken	it	as	an	imperative	that	the	club	provide	an	explicitly	“non-medicalized	atmosphere”	with	an	emphasis	on	“normal	everyday	activities”.	Walking	is	not	framed	as	a	program,	but	rather	as	the	enjoyable	pastime	of	a	group	of	friends.	With	everyone	able	to	take	part,	it	effectively	keeps	the	focus	off	the	dementia.		The	leaders	view	this	as	an	important	way	by	which	they	strive	to	create	an	environment	that	is	“emotionally	safe	”	(website).	At	one	level,	this	is	about	taking	care	to	not	confront	members	with	experiences	that	might	cause	them	to	feel	distressed.	The	leaders	explain	for	example	how	valuable	it	is	that	everyone	has	the	opportunity	to	be	out	in	the	community	where	they	can	engage	with	restaurant	and	hotel	workers	whose	role	is	to	make	people	feel	comfortable	and	welcome.	They	contrast	this	to	dementia	groups	that	focus	on	indoor	activities	with	health	care	workers	who	would,	they	feel,	bring	more	attention	to	Dementia:	The	International	Journal	of	Social	Research	and	Practice,	accepted	Feb	2016	 		pg	11	of	29members’	impairment	and	disability,	which	would	be	inherently	upsetting.	The	leaders	of	Paul’s	Club	refuse	to	position	people	in	this	way,	being	adamant	that	the	dementia	not	be	the	focus	of	attention.	Rather,	they	view	their	members	as	“seeking	the	same	things	we	all	do:	to	have	a	role,	to	feel	valued	and	respected,	and	to	have	connection	with	others”	(FN	03-02-15).	This	effort	to	keep	the	focus	off	dementia	is	reflected	in	the	volunteer	guidelines	that	provide	direction	to	“change	the	topic”	or	“use	distraction”	if	the	subject	of	dementia	or	memory	loss	comes	up	in	conversation,	and	friends	and	visitors	are	often	reminded	by	the	leaders	to	not	ask	open-ended	questions	of	the	members	to	avoid	exposing	their	inability	to	answer.	In	practice	of	course,	these	guidelines	are	not	always	followed.	Members	have	on	occasion	been	overheard	talking	together	about	their	dementia	(although	this	happens	very	rarely)	and	open-ended	questions	seem	to	be	a	natural	part	of	the	everyday	conversations	that	happen	in	the	club.	The	leaders	and	friends	are	well	aware	that	the	guidelines	are	often	hard	to	adhere	to,	although	they	are	helpful	to	the	extent	that	they	serve	as	a	reminder	that	Paul’s	Club	is	a	place	where	“the	diagnosis	is	left	at	the	door”	(promotional	flyer).	In	explaining	their	approach,	the	leaders	emphasize	“we	are	not	a	support	group”.	The	family	survey	revealed	that	this	was	an	aspect	of	Paul’s	Club	that	was	generally	appreciated.	In	a	subsequent	interview,	one	spouse	spoke	specifically	of	how	talking	about	the	dementia	“wouldn’t	fix	anything”.	Rather,	when	trying	to	locate	a	group	to	meet	her	partner’s	needs,	she	was	happy	to	find	in	Paul’s	Club	“a	place	that	said,	‘we’re	living,	we’re	living,	we	are	here	because	we	are	alive,	and	we’re	going	to	have	fun,	and	that’s	going	to	be	the	rest	of	my	life,	just	to	enjoy	every	minute…”.	(FM	11-05-15)	Dementia:	The	International	Journal	of	Social	Research	and	Practice,	accepted	Feb	2016	 		pg	12	of	29This	emphasis	was	evident	amongst	the	members	as	well.	As	noted	above,	they	only	rarely	spoke	of	dementia	and	even	then,	it	was	usually	in	a	passing	comment	such	as	“I	hear	they	are	getting	very	close	to	getting	a	cure	for	Alzheimers”	(FN	11-13-14).	In	these	situations,	the	conversation	between	members	tended	to	shift	quite	naturally	in	some	other	direction.	The	subject	of	dementia	and	memory	loss	simply	did	not	seem	to	be	a	topic	that	aroused	much	interest.	More	typical,	especially	on	the	walks	through	the	neighbourhood,	were	conversations	that	showed	members	having	fun,	engaging	with	what	was	happening	in	their	environment.		As	we	walked,	C.	was	very	talkative,	looking	about	at	his	surroundings	and	responding	to	what	he	saw.	At	one	point	we	watched	a	small	passenger	boat	go	by	and	it	precipitated	an	extended	narrative	on	its	use.	He	explained	how	"it	ferries	people	back	and	forth,"	his	arms	making	a	sweeping	gesture	across	the	water.	He	also	talked	about	the	nearby	condos	and	the	people	living	there.	While	it	was	hard	to	understand	much	of	what	he	said,	he	was	clearly	enjoying	the	day,	laughing,	talking	and	walking.	(WV	from	FN	05-20-15)	Good	humour	plays	an	important	role	in	“keeping	things	light”.	It	is	evident	not	only	in	how	members	are	often	laughing	and	joking	(as	in	the	above	example),	but	humour	also	plays	a	role	in	how	the	leaders	and	friends	of	Paul’s	Club	handle	the	mistakes	and	misunderstandings	that	inevitably	occur.	Where	this	often	reveals	itself	is	in	the	time	spent	getting	ready	to	go	out	for	the	walk.	It	is	difficult	for	many	of	the	members	who	need	assistance	in	getting	dressed	for	the	weather,	but	the	group	manages	this	through	intricate	interactions	that	normalize	these	difficulties	and	maintain	a	positive	mood.		For	example,	applying	sunscreen	to	someone’s	face	is	accompanied	by	teasing	and	gentle	laughter,	while	someone	struggling	with	a	heavy	coat	is	Dementia:	The	International	Journal	of	Social	Research	and	Practice,	accepted	Feb	2016	 		pg	13	of	29approached	with	a	casual	“my	zipper	is	always	getting	stuck	too	–	can	I	help	you	with	that?”	(FN	11-13-14).	Keeping	the	focus	on	the	task	at	hand	while	maintaining	positive	relationships	between	friends,	leaders,	and	members	is	paramount,	rather	than	drawing	attention	to	the	problems	people	are	encountering.		Similarly,	in	the	volunteer	guidelines,	the	leaders	describe	the	“subtle	vigilance”	that	is	required	to	ensure	that	everyone	stays	safe	while	they	are	out	walking.	Ever	aware	of	the	possibility	that	someone	may	become	lost,	leaders	and	friends	are	quietly	counting	heads,	or	walking	side	by	side	with	members,	engaging	them	in	friendly	conversation	or	linking	arms	as	they	stroll.	These	are	ways	they	have	found	to	keep	the	group	safely	together	but	without	seeming	to	do	so.	The	focus	remains	on	the	walk	itself,	and	their	enjoyment	of	each	other’s	company.	Creating	a	place	of	belonging	There	is	a	big	emphasis	in	Paul’s	Club	on	the	importance	of	participating	together.	The	leaders,	members,	friends,	and	families	too,	are	all	very	clear	that	it	is	a	primary	aim	of	the	club	that	everyone	shares	in	activity	that	is	meaningful	and	enjoyable.	The	fact	that	so	much	of	this	participation	is	centred	around	walking	points	to	the	significance	of	physical	activity	and	movement	in	their	daily	routine,	with	several	family	members	noting	how	important	the	“exercise”	is,	especially	for	those	members	who	they	describe	as	“still	in	good	shape”.	The	energy	of	the	group	is	sometimes	hard	to	accommodate	in	the	confines	of	the	group’s	indoor	spaces.	On	those	days	when	the	weather	is	simply	too	miserable	to	be	outside,	some	members	become	fidgety,	often	getting	up	to	head	to	the	door,	wanting	to	go	home.	They	have	a	need	to	move,	and	an	exercise	class	or	a	game	of	ping	pong	or	foosball	in	the	hotel	gymnasium	is	not	Dementia:	The	International	Journal	of	Social	Research	and	Practice,	accepted	Feb	2016	 		pg	14	of	29always	enough.	Such	activities,	which	are	more	structured	and	contained,	do	not	provide	the	kind	of	natural	freedom	to	connect	with	each	other	that	is	afforded	by	walking	in	the	neighbourhood.		When	the	group	goes	out	each	afternoon,	it	is	not	as	a	tight	cohort,	but	rather	as	a	coming	and	going	of	walking	partners	and	shifting	conversational	groups.	There	is	a	lot	of	flux	and	movement,	forwards	and	sometimes	back,	to	and	fro,	with	people	coming	together	and	parting,	and	then	meeting	again.	This	opportunity	to	walk	and	move	and	go	along	together,	seemingly	able	to	choose	where	to	go	and	with	whom	is	about	having	the	freedom	to	participate	in	a	way	that	is	responsive	to	the	shifting	needs	and	desires	of	the	group	and	its	members.	It	positions	the	importance	of	this	activity	as	being	so	much	more	than	simply	exercise.		Walking	in	the	neighbourhood	every	day	together	as	a	group	promotes	a	strong	sense	of	emotional	connection	and	social	belonging	amongst	the	members,	leaders	and	friends	of	Paul’s	Club.	The	conversations	and	physical	connections	between	friends	happen	quite	spontaneously	with	no	pressure	to	conform	to	a	particular	routine	or	pattern.		D.	is	fun	to	be	around	and	great	company	to	walk	with.	As	we	set	out	today	he	came	up	to	check	in	and	ask	how	I	was	doing.	…	As	we	walk,	he	moves	up	and	down,	interacting	with	others	who	walk	at	different	paces.	He	walks	a	lot	with	W.	I	even	saw	him	interact	with	B.	today.	As	he	walks,	he	offers	his	opinions	on	the	weather,	the	lovely	day,	how	lucky	we	are	to	be	out	and	about.	D.	now	regularly	uses	my	name	and	is	more	physically	affectionate,	laughing	and	talking	as	he	gives	me	a	quick	hug	while	we	walk	together.	(WV	from	FN	03-18-15)	Dementia:	The	International	Journal	of	Social	Research	and	Practice,	accepted	Feb	2016	 		pg	15	of	29One	family	member	described	Paul’s	Club	as	“a	place	of	belonging”,	and	several	others	have	referenced	the	importance	of	people	walking	together	every	afternoon,	recognizing	that	the	social	connections	that	are	formed	and	nurtured	on	these	walks	really	matter.	Some	described	how	their	spouse	had	previously	withdrawn	from	the	social	world,	and	belonging	to	Paul’s	Club	had	the	effect	of	bringing	them	back	in.	We	saw	evidence	of	this	too	in	the	focus	groups;	it	was	the	pictures	of	the	group	members	out	walking	that	generated	the	most	comments.	With	these,	people	spoke	less	often	about	the	activities	and	places	in	the	photographs,	and	much	more	about	the	people.	Members	said	things	like:	“Who	is	that	good	lookin’	guy?	That’s	you	buddy!”	or	“There’s	P.	And	I.	That’s	a	long	time	ago,	and	we’re	still	here!”	(group	laughter)	(FG,	05-07-15)	Claiming	a	place	in	the	community	By	walking	in	the	neighbourhood,	people	are	afforded	opportunity	to	engage	with	and	contribute	to	their	community.	When	they	are	out,	it	is	not	as	single	large	group	who	move	together	en	masse.	As	described	earlier,	there	is	a	lot	of	freedom	in	their	movement,	as	members	engage	spontaneously	with	their	environment,	exploring	together.		Much	of	their	time	is	spent	on	the	various	walking	paths	along	the	waterfront	where	they	encounter	their	neighbours	who	live	and	work	in	the	vicinity.	Those	neighbours	who	are	walking	their	dogs	are	a	big	attraction.	Group	members	often	stop	to	engage	and	play	with	the	dogs,	tossing	balls,	giving	them	treats,	and	chatting	with	the	owners.		R.	lit	up	when	we	walked	by	the	dog	park	today	-	there	was	a	lot	of	action	on	this	beautiful	fall	day.	"Look	at	them	all"	she	said,	highly	animated.	She	spent	the	next	15	minutes	or	so	handing	out	dog	cookies,	patting	the	odd	dog,	clearly	loving	it.	Later,	on	Dementia:	The	International	Journal	of	Social	Research	and	Practice,	accepted	Feb	2016	 		pg	16	of	29the	way	back,	walking	along	a	city	street	she	said	"They...you	know…”	She	paused.	“…respond	to	me."	I	guessed	that	she	was	talking	about	dogs,	so	I	replied	"Because	they're	smart,	they	know…".	She	responded	without	hesitation.	"They	are,	more	than	people."	(WV	from	FN	11-18-15)	When	we	looked	at	pictures	of	these	activities	during	the	focus	groups,	these	dogs	were	identified	by	name,	and	even	members	who	were	not	speaking	sat	up	with	excitement,	smiling	and	pointing	to	the	photographs.	Time	spent	with	the	dogs	was	a	way	for	people	to	form	social	and	emotional	connections	outside	the	group	through	enacting	their	role	as	a	friendly	neighbour.	In	this	way,	walking	in	the	neighbourhood	is	not	only	a	leisure	activity,	but	it	also	positions	Paul’s	Club	members	as	citizens	who	have	something	to	contribute	to	their	community,	whether	it	is	providing	a	treat	for	a	dog,	or	as	several	of	the	men	do,	stopping	to	talk	to	the	babies	who	are	out	with	their	mothers	strolling	along	the	walking	path.	With	advanced	dementia,	people	are	typically	viewed	as	vulnerable	and	in	need	of	help,	but	on	these	walks	they	have	the	freedom	to	engage	with	others	and	even	give	back	when	called	upon.		When	we	left	the	gelato	place	I	walked	with	T.	for	a	bit;	she	was	still	eating	her	ice	cream	in	a	sugar	cone	and	as	we	walked	past	the	bus	terminal	there	were	several	people	(sitting	or	standing)	asking	for	change	as	we	walked	past.	T.	was	right	beside	me	when	a	youngish	looking	disheveled	man	approached	her,	asking	for	money	I	thought.	This	was	also	T.'s	interpretation	because	she	handed	him	what	she	had,	the	remaining	part	of	her	ice	cream	cone.	The	man	gratefully	received	it.	She	looked	at	me	and	I	said	how	nice	it	was	of	her	and	she	smiled	and	we	walked	on.	(WV	from	FN,	10-07-14)	Dementia:	The	International	Journal	of	Social	Research	and	Practice,	accepted	Feb	2016	 		pg	17	of	29This	vignette	shows	walking	as	an	inclusive	practice	that	allows	group	members	the	opportunity	to	contribute	more	fully	to	the	life	of	the	city.	In	so	doing,	Paul’s	Club	is	bringing	the	message	into	the	broader	community	that	it	is	possible	to	live	well	with	dementia.	Being	out	in	the	open,	encountering	and	engaging	with	local	businesses,	neighbours	and	people	on	the	street	is	a	subtle	yet	potentially	powerful	way	of	confronting	prevailing	assumptions	about	this	condition.		They	do	this	not	by	advertising	themselves	or	loudly	advocating	for	recognition,	but	rather	through	their	regular	presence	in	the	urban	landscape,	and	when	needed,	through	quiet	education	and	awareness	raising	activities.	For	example,	there	are	times	when	the	leaders	will	share	with	members	of	the	public	a	small	business	card	with	the	following	text:	Hello.		We	are	part	of	a	social	and	recreational	day	program	for	people	who	are	living	with	Early	Onset	Dementia.	Paul’s	Club	is	located	in	downtown	Vancouver	and	caters	to	the	interests	and	needs	people	diagnosed	before	the	age	of	65.		Thank	you	for	your	understanding.	Staff	of	Paul’s	Club			The	leaders	describe	how	this	has	been	helpful	when	there	is	an	interaction	involving	a	member	that	could	be	easily	misunderstood	without	this	information	as	important	background.	They	have	found	this	to	be	one	way	of	increasing	public	awareness	without	embarrassing	anyone.	This	makes	sense	in	light	of	the	fact	that	these	members	who	have	significant	impairment	and	trouble	with	verbal	communication	would	have	difficulty	explaining	such	a	situation.	This	card	offers	a	call	for	understanding	and	acceptance,	not	sympathy,	and	notably,	no	one	individual	is	Dementia:	The	International	Journal	of	Social	Research	and	Practice,	accepted	Feb	2016	 		pg	18	of	29singled	out	as	a	person	with	dementia.	In	fact,	given	the	younger	age	range	in	this	group,	it	would	often	be	difficult	to	tell	just	who	holds	the	diagnosis;	their	disability	is	not	really	visible.	That	said,	over	the	past	year,	there	has	been	less	call	to	use	the	card,	perhaps	because	of	the	group’s	regular	presence	in	the	neighbourhood.	They	are	more	often	recognized	and	greeted	when	they	are	out	(especially	by	the	dog	walkers),	and	members	of	the	community	have	over	time	developed	more	understanding	and	ability	to	engage	with	group	members.	The	restaurant	staff	have	learned	how	to	better	communicate	with	members,	for	example,	by	offering	choices	(“Tea	or	coffee?”)	rather	than	vague	open-ended	questions	(“What	about	dessert?”).	Similarly,	the	gelato	shop,	while	at	first	taken	aback	by	the	presence	of	Paul’s	Club	in	their	small	café,	has	learned	how	to	make	the	members	feel	comfortable	and	welcome	each	day.			DISCUSSION	This	research	has	demonstrated	how	through	the	practice	of	walking	in	the	neighbourhood,	a	community-based	activity	group	is	constructing	important	aspects	of	social	citizenship	for	people	with	dementia.	In	seeking	to	understand	this	further,	it	appears	these	findings	offer	a	real-life	example	of	the	argument	put	forth	by	Spinney,	Aldred	&	Brown	(in	press)	that	citizenship	is	not	a	fixed	status,	but	is	performed	through	everyday	experiences	of	movement	and	mobility.	In	what	follows,	we	explore	this	idea	further	by	building	on	the	findings	to	show	how	issues	of	positioning	are	fundamental	to	the	work	of	the	group:	keeping	the	focus	off	dementia	opens	possibilities	for	participation	and	community,	but	at	the	same	time,	creates	inevitable	challenges	for	Paul’s	Club	in	their	effort	to	ensure	the	safety	of	their	Dementia:	The	International	Journal	of	Social	Research	and	Practice,	accepted	Feb	2016	 		pg	19	of	29members.		The	group’s	commitment	to	walking	every	afternoon	is	guided	by	a	philosophy	that	foregrounds	the	importance	of	continued	participation	in	activities	they	consider	to	be	“normal”.	Walking	in	this	context	is	meaningful	precisely	because	it	is	so	commonplace,	an	“(almost)	universal	activity”	(Pink,	2007,	p.	244).	Everyone	in	the	neighbourhood	walks,	and	ensuring	that	people	with	dementia	are	out	walking	too	is	a	way	of	upholding	their	position	as	social	citizens.	In	discussing	the	distinctly	social	nature	of	walking,	Ingold	&	Vergunst	(2008)	note	that	“not	only	do	we	walk	because	we	are	social	beings,	we	are	also	social	beings	because	we	walk”	(p.	2).	In	this	vein,	we	might	say	that	members	of	Paul’s	Club	not	only	walk,	but	are	walkers,	their	movement	through	the	neighbourhood	serving	to	enact	this	shared	social	identity.		The	group’s	emphasis	on	“normal”	is	evident	also	in	the	care	taken	in	every	interaction	to	keep	the	focus	off	dementia.	This	may	be	best	understood	as	a	kind	of	positioning	work	through	which	Paul’s	Club	is	resisting	the	power	of	the	dementia	label	in	a	constant	effort	to	centre	the	person	rather	than	the	disease.	It	is	evident	from	these	interactions	that	the	people	of	Paul’s	Club	know	each	other	very	well.	Their	concern	for	the	social	positioning	of	the	members	is	shown	in	a	profoundly	relational	approach	that	allows	each	person	to	be	treated	with	respect	and	dignity	as	a	unique	individual.		In	purposefully	identifying	each	individual	as	a	member	of	a	club	(and	explicitly	not	a	client	of	a	formalized	day	program),	Paul’s	Club	is	seen	to	be	building	a	community	of	people	brought	together	by	a	strong	sense	of	belonging.	This	is	due	in	part	to	the	relationships	within	the	group	where	people	come	to	know	and	care	for	each	other.	But	Paul’s	Club	as	a	place	of	Dementia:	The	International	Journal	of	Social	Research	and	Practice,	accepted	Feb	2016	 		pg	20	of	29belonging	also	comes	from	the	way	that	members,	as	walkers,	are	themselves	contributing	to	the	life	of	the	group	through	their	participation	together	in	this	everyday	activity.	Theirs	is	not	a	passive	involvement,	but	an	active	co-construction	of	social	belonging	and	community.		Walking	every	afternoon	is	a	way	of	extending	this	into	the	neighbourhoood,	where	Paul’s	Club	is	contributing	to	the	creation	of	a	more	inclusive	urban	space,	allowing	people	with	dementia	to	claim	their	rightful	place	in	the	broader	community.	When	they	are	filling	the	tables	in	a	small	gelato	shop	at	the	end	of	their	walk,	they	offer	no	apologies.	As	a	group,	theirs	is	a	complete	and	fulsome	engagement	that	demands	they	be	socially	regarded	(Brannelly,	2011),	and	aims	toward	creating	public	spaces	that	are	actively	inclusive	of	people	with	dementia.	To	some	degree	then,	the	group	might	be	seen	as	helping	shift	the	discourse	around	memory	loss	by	raising	awareness	that	it	is	possible	to	live	well	with	dementia,	thus	building	social	capital	and	contributing	to	the	growth	of	dementia	friendly	communities	(Keady	et	al.,	2012).	Through	creating	opportunity	to	be	involved	in	activities	that	anyone	would	enjoy	–	not	just	people	with	dementia	(Menne,	Johnson,	Whitlatch,	&	Schwartz,	2012),	Paul’s	Club	is	effectively	standing	up	to	the	stigma	of	this	condition	(Genoe,	2010).	The	group	does	not	take	this	as	their	primary	aim	however.	While	remaining	firm	in	their	commitment	to	be	out	in	the	community,	doing	so	as	people	with	dementia	creates	certain	tensions	within	the	group.	Where	this	becomes	particularly	evident	is	in	relation	to	issues	of	safety.		Walking	through	an	urban	neighbourhood	carries	a	degree	of	risk	for	anyone,	but	especially	so	for	people	with	dementia.	Crossing	busy	intersections,	avoiding	unpredictable	Dementia:	The	International	Journal	of	Social	Research	and	Practice,	accepted	Feb	2016	 		pg	21	of	29bicycle	traffic,	and	simply	staying	together	are	persistent	concerns	for	the	leaders	and	friends	who	take	responsibility	for	ensuring	the	group’s	physical	safety.	The	members	embody	a	particular	confidence	when	they	are	out,	and	given	the	freedom	they	have	on	these	daily	walks	it	is	not	unusual	for	them	to	make	their	own	way,	sometimes	taking	their	leave	from	the	rest	of	the	group.	The	leaders	and	friends	are	ever	aware	of	this	possibility	and	are	constantly	keeping	watch.	The	surveillance	practices	of	the	group	are	carefully	enacted	though,	with	the	intent	that	they	not	draw	attention	or	seem	out	of	the	ordinary.	This	comes	from	the	group’s	concern	that	they	do	everything	possible	to	maintain	members’	social	dignity,	especially	when	they	are	out	in	public	where	people	with	dementia	are	far	more	likely	to	experience	such	affronts	(van	Gennip,	Pasman,	Oosserveld-Vlug	&	Philipsen,	2014).	However,	keeping	the	focus	off	dementia	while	still	having	to	acknowledge	the	group’s	very	real	vulnerability	and	need	for	protection	is	where	things	get	difficult.	Working	as	they	are	in	the		“grey	area	of	diminished	capacity”	(Behuniak,	2010),	the	primary	issue	the	group	confronts	is	“how	to	achieve	a	balance	between	rights	and	protections”	(p.	238)	-	how	and	where	are	they	to	walk	so	people	can	safely	enact	their	right	to	participate	in	the	life	of	the	community?	Focusing	on	the	person	rather	than	the	dementia	may	not	be	the	most	helpful	framing	for	considering	this	question,	given	the	inference	that	the	dementia	should	not	matter	when	clearly	it	does.	Instead,	what	this	research	has	shown	is	how	Paul’s	Club	is	negotiating	the	complexities	of	walking	in	the	neighbourhood	as	a	practice	of	social	citizenship	that	centers	the	person	with	dementia	(Barlett	&	O’Connor,	2007,	p.	114).		Resisting	the	power	of	the	dementia	label	is	an	appealing	notion,	but	in	the	practical	Dementia:	The	International	Journal	of	Social	Research	and	Practice,	accepted	Feb	2016	 		pg	22	of	29exigencies	of	their	daily	walk,	this	resistance	can	never	be	complete.	It	exists	alongside	the	group’s	very	real	need	to	acknowledge	the	dementia	in	their	midst.	Centering	the	person	with	dementia	is	a	difficult	balancing	act	to	be	sure,	but	at	the	same	time	it	represents	a	potentially	important	shift	in	perspective	that	recognizes	members	as	both	vulnerable	and	agentic,	and	the	practices	of	the	group	as	resting	on	principles	of	compassion	and	empowerment	(Behuniak,	2010).		CONCLUSIONS	In	drawing	conclusions,	we	begin	by	commenting	on	how	this	work	brings	to	light	the	innovation	of	a	group	like	Paul’s	Club.	Being	situated	on	the	margins	of	the	health	and	social	care	system,	they	have	a	certain	freedom	to	do	what	seems	most	fitting	for	a	group	of	younger	people	with	dementia	who	otherwise	have	very	few	services	available	to	support	them.	Explaining	how	the	group’s	practice	of	walking	through	the	neighbourhood	constructs	social	citizenship	in	terms	of	positioning,	participation	and	community	may	contribute	to	further	theorizing,	but	hopefully	has	practical	implications	as	well.	By	providing	a	way	of	framing	and	articulating	the	complexity	inherent	in	this	everyday	activity,	the	research	may	have	potential	to	contribute	to	the	development	of	community-based	initiatives	that	build	on	the	important	work	being	done	in	Paul’s	Club.	For	example,	this	evidence	could	help	shape	policy	and	practices	aimed	toward	the	creation	of	dementia-friendly	communities,	and	more	specifically,	influence	the	further	development	of	services	around	the	idea	of	leisure	and	citizenship,	especially	for	people	with	young	onset	dementia.		Of	course,	there	are	limitations	in	what	we	have	presented	here.	Enacting	citizenship	through	everyday	practices	of	movement	and	mobility	is	not	entirely	unproblematic,	and	there	Dementia:	The	International	Journal	of	Social	Research	and	Practice,	accepted	Feb	2016	 		pg	23	of	29are	certain	points	that	have	not	been	considered	in	this	analysis.	For	example,	we	have	not	addressed	in	this	paper	the	fact	of	the	group’s	privilege,	particularly	in	light	of	their	physical	wellness.	While	there	is	a	broad	age	range	amongst	the	members	of	Paul’s	Club,	overall	they	are	more	physically	robust	than	more	traditional	dementia	groups.	There	are	usually	one	or	two	members	who	are	less	mobile	(being	slow,	or	having	poor	balance	or	diminished	step	height),	but	the	group	is	able	to	accommodate	this	within	the	practices	described	earlier		(e.g.	walking	side-by-side	or	linking	arms).	But	that	said,	the	analysis	presented	here	should	not	be	taken	as	an	argument	that	social	citizenship	requires	such	mobility.	Rather	our	aim	has	been	to	show	how	this	particular	group	enacts	citizenship	in	this	particular	way,	and	the	complexities	they	negotiate	in	the	process.	Enacting	citizenship	would	be	quite	different	if	the	circumstances	were	otherwise,	e.g.	if	the	group	was	older	and	more	physically	frail,	or	they	were	in	a	neighbourhood	that	was	less	conducive	to	walking.	With	the	current	research,	we	have	begun	to	develop	an	evidence	base	for	understanding	how	community-based	activity	can	contribute	to	social	citizenship	for	people	with	dementia.		However,	recognizing	the	importance	of	structural	influences	on	this	process,	as	we	move	ahead	with	the	next	study	site	we	anticipate	taking	the	analysis	in	that	direction	to	explore	more	explicitly	issues	of	age,	place,	and	related	sociocultural	factors.		 	Dementia:	The	International	Journal	of	Social	Research	and	Practice,	accepted	Feb	2016	 		pg	24	of	29Declaration	of	Conflicting	Interests	The	authors	declare	that	there	are	no	conflicts	of	interest.		Acknowledgements	This	work	was	funded	by	the	Alzheimer	Society	of	Canada	Research	Program	Regular	Grant	#15-25.		 	Dementia:	The	International	Journal	of	Social	Research	and	Practice,	accepted	Feb	2016	 		pg	25	of	29REFERENCES	Bartlett,	R.	&	O’Connor,	D.	(2007).	From	personhood	to	citizenship:	Broadening	the	lens	of	dementia	care.	Journal	of	Aging	Studies,	21,	107-118.	Bartlett,	R.,	&	O'Connor,	D.	(2010).	Broadening	the	dementia	debate:	Towards	social	citizenship.	Bristol,	UK:	Policy	Press.	Baumbusch,	J.	(2008).	Decommissioning	citizenship:	the	organization	of	long	term	residential	care.	Doctoral	Dissertation,	University	of	British	Columbia,	Vancouver.	Behuniak,	S.M.	(2010).	Toward	a	political	model	of	dementia:	power	as	compassionate	care.	Journal	of	Aging	Studies,	24,	231–240.	Brannelly,	T.	(2011).	Sustaining	citizenship:	people	with	dementia	and	the	phenomenon	of	social	death.	Nursing	Ethics,	18,	662-671.	Brown,	M.,	Foley,	A.,	Harvey,	J.,	&	Gleeson,	L.	(2007).	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