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Knowledge Network in Rural and Remote Dementia Care
Healthcare Delivery Across the Continuum for Rural and Remote Seniors with Dementia
6th Annual Summit
October 24th & 25th, 2013
Scientific Poster Session
Summit 620132013
Thursday October 24th, 2013 Wine and Cheese Scientific Poster Program
7:00 PM – 10:00 PM at the Sheraton Hotel (South West Room)
Poster Presenter Authors & Poster Titles
Mark Barnes &Pat Kessler
Barnes M, Kessler P
Dementia Hoshin: How it started and where we are
Carrie Bourassa Understanding from Within Project/Native Women’s Association of Canada
Series of 4 Posters: Aboriginal Patient Advocate; It’s all in her head; Who is this woman?; In case of a seizure
Camille Branger Branger C, O’Connell M, Morgan D
Factor Analysis of the 12-item Zarit Burden Interview in Caregivers of Persons Diagnosed with Dementia
Allison Cammer Morgan D, Cammer A, Crossley M, Stewart N, D’Arcy C, Dal Bello-Haas V, McBain L, O’Connell M, Bracken J, Kosteniuk J
Evolution of a Community-Based Participatory Approach in a Rural and Remote Dementia Care Research Program
Allison Cammer Cammer A, O’Connell M, Morgan D, Whiting S
Functional Ability to Eat and Drink in Persons with Alzheimer versus non-Alzheimer Dementia
Tracy Danylyshen-Laycock
Danylyshen-Laycock T
Factors Leading to the Utilization of a Dementia Specific Training Program in Rural Long-Term Care Homes
Joe Enright Enright J, O’Connell M
An Evaluation of a Reminiscence Intervention for Caregivers of Persons with Dementia via Telehealth Videoconferencing
Joe Enright O’Connell M, Enright J, Crossley M, Morgan D
Differential Caregiver Distress and Burden Associated with Diagnoses of Types of Dementia
Poster Presenter Authors & Poster Titles
Drew Hager Hager D, Kirk A, Morgan D, Karunanayake C, O’Connell M
Predictors of rapid cognitive decline in rural patients with Alzheimer’s disease.
Paulette Hunter Hunter P
Human Exploratory Factor Analysis of the Personhood in Dementia Questionnaire
Julie Kosteniuk Morgan D, Kosteniuk J, Stewart N, Karunanayake C, Beever R, O’Connell M
Psychometric Evaluation of the Telehealth Satisfaction Scale (TeSS)
Xiangfei Meng Meng X, D’Arcy C
APOE gene, environmental risk factors and their interactions in dementia among seniors
Joanne Michael McAiney C, Harvey D, Hillier L, Stolee P, Schultz M, Michael J
Early Referral for Support of Dementia Caregivers: Evaluation of the First Link Demonstration Project
Darrell Mousseau Chaharyn B, Fehr K, Pennington P, Wei Z, Mousseau D
Is Alzheimer disease-related pathology different in males and females?
Norma Stewart Stewart N, Minish D, Cammer A, Morgan D
The Experience of Sons as Carers for a Parent Diagnosed withDementia at the Rural and Remote Memory Clinic (RRMC)
OU
R B
EGIN
NIN
G•
In 2
011
the
Sas
katc
hew
an M
inis
try o
f Hea
lth
star
ted
dow
n th
e pa
th o
f Stra
tegi
c D
eplo
ymen
t, ba
sed
on th
e To
yota
mod
el, k
now
n by
the
Japa
nese
wor
d H
oshi
n K
anri.
•H
oshi
n is
tran
slat
ed in
to a
“bre
akth
roug
h ac
tivity
to
be c
ompl
eted
with
in o
ne y
ear w
ith th
e go
al to
m
ove
the
syst
em c
lose
r to
an im
prov
emen
t ta
rget
”. It
also
refe
rs to
a c
ompa
ss, d
irect
ion,
or
shin
ing
need
le. (
SC
HR
web
site
)
•K
anri
mea
ns p
olic
y
•In
201
2/20
13 S
CH
R s
elec
ted
Dem
entia
car
e as
a
hosh
in
DEM
ENTI
A P
RO
JEC
T H
OSH
IN•
Has
bee
n pu
t und
er th
e B
ette
r Hea
lth a
rea
as th
e ai
m o
f thi
s ar
ea is
to “i
mpr
ove
acce
ss a
nd c
onne
ctiv
ity in
Prim
ary
Hea
lth
Car
e in
nova
tion
site
s an
d us
e ea
rly
lear
ning
sto
bui
ld fo
unda
tiona
l co
mpo
nent
s fo
r spr
ead
acro
ss th
e pr
ovin
ce”
Mag
e 61
.55,
SD
= 14
.78
How
freq
uent
ly d
oes
each
car
egiv
er s
ee th
e pe
rson
with
de
men
tia
Impo
rtant
–th
e fre
quen
cy re
porte
d he
re is
for i
n-pe
rson
co
ntac
t and
doe
s no
t cap
ture
tele
phon
e co
ntac
t, et
c.
ZBI M
scor
e= 1
4.26
, SD
= 8.
71
b
INTR
OD
UC
TIO
NIN
TRO
DU
CTI
ON
Purp
ose
Th
e pu
rpos
e of
the
curr
ent s
tudy
was
to id
entif
y th
e fa
ctor
stru
ctur
e of
the
12-it
em Z
BI i
n a
sam
ple
of 1
97
rura
l car
egiv
ers
of p
erso
ns w
ith d
emen
tia.
Bac
kgro
und
R
elat
ivel
y lit
tle d
ata
on th
e ZB
I fac
tor s
truct
ure,
de
spite
its
popu
lar u
se.
A
two
fact
or s
truct
ure
is m
ost c
omm
only
foun
d fo
r the
12
-item
ZB
I.1
E
mer
ging
dat
a in
dica
te, a
n ad
ditio
nal Z
BI t
hird
fact
or
of ‘g
uilt’
is e
mbe
dded
in th
e ite
ms
that
typi
cally
load
on
pers
onal
stra
in. 2
,3,4
The
12-
item
ZB
I inc
lude
s th
ese
sam
e ‘g
uilt’
item
s.
G
uilt
is a
n im
porta
nt p
redi
ctor
of p
sych
olog
ical
stra
in,
and
both
gui
lt an
d ps
ycho
logi
cal s
train
app
ear m
ore
acut
e in
car
egiv
ers
of p
erso
ns w
ith d
emen
tia. 5
,6
Fact
or A
naly
sis
of th
e 12
-item
Zar
it B
urde
n In
terv
iew
in
Car
egiv
ers
of P
erso
ns D
iagn
osed
with
Dem
entia
RES
ULT
SR
ESU
LTS
C. B
rang
er1 ,
M. E
. O’C
onne
ll1, &
D. M
orga
n21
Dep
artm
ent o
f Psy
chol
ogy,
Uni
vers
ity o
f Sas
katc
hew
an, 2 C
anad
ian
Cen
tre
for H
ealth
and
Saf
ety
in A
gric
ultu
re, U
nive
rsity
of S
aska
tche
wan
Th
is s
tudy
ana
lyze
d ar
chiv
al d
ata
from
197
care
give
rs o
f per
sons
dia
gnos
ed w
ith d
emen
tia a
fter
an in
terd
isci
plin
ary
asse
ssm
ent a
t the
Rur
al a
nd
Rem
ote
Mem
ory
Clin
ic in
Sas
kato
on.
DIS
CU
SSIO
ND
ISC
USS
ION
We
did
not f
ind
supp
ort f
or re
cent
dat
a su
gges
ting
the
ZBI
may
mea
sure
a 3
rdfa
ctor
of g
uilt.
‘Per
sona
l Stra
in’f
acto
r pre
dict
ed c
areg
iver
psy
chol
ogic
al
dist
ress
. ‘R
ole
stra
in’c
ompr
ised
of ‘
guilt
’ite
ms
did
not
pred
ict c
areg
iver
dis
tress
.A
lthou
gh g
uilt
and
burd
en a
ppea
r to
shar
e a
uniq
ue
rela
tions
hip,
thes
e da
ta s
ugge
st g
uilt
is n
ot a
dequ
atel
y m
easu
red
by th
e 12
-item
ZB
I in
care
give
rs o
f per
sons
di
agno
sed
with
dem
entia
.
1O
’Rou
rke,
N.,
& T
uokk
o, H
.A. (
2003
). P
sych
omet
ric p
rope
rties
of a
nab
ridge
d ve
rsio
n of
the
Zarit
Bur
den
Inte
rvie
w w
ithin
a
repr
esen
tativ
e C
anad
ian
care
give
r sam
ple.
The
Ger
onto
logi
st, 4
3,12
1-12
7.2
Flyn
n Lo
ngm
ire, C
.V.,
& K
nigh
t, B
.G. C
onfir
mat
ory
fact
or a
naly
sis
of a
brie
f ver
sion
of t
he Z
arit
Bur
den
Inte
rvie
w in
bla
ck a
ndw
hite
de
men
tia c
areg
iver
s. T
he G
eron
tolo
gist
, 51,
453-
462.
3A
nkri,
J.,
And
rieu,
S.,
Bau
fils,
B.,
Gra
nd, A
., &
Hen
rard
, J.C
.(20
05).
Bey
ond
the
glob
al s
core
of t
he Z
arit
Bur
den
Inte
rvie
w: u
sefu
l di
men
sion
s fo
r clin
icia
ns.I
nter
natio
nal J
ourn
al o
f Ger
iatri
c P
sych
iatry
, 20,
254-
260.
4K
ight
, B.G
., Fo
x, L
.S.,
& C
hou,
C. (
2000
). Fa
ctor
stru
ctur
e of
the
Bur
den
Inte
rvie
w.
Jour
nal o
f Clin
ical
Ger
opsy
chol
ogy,
6, 2
49-2
58.
5Lo
sada
, A.,
Mar
quez
-G
onza
lez,
M.,
Pen
acob
a, C
., &
Rom
ero
-Mor
eno,
R. (
2010
). D
evel
opm
ent a
nd v
alid
atio
n of
the
Car
egiv
er G
uilt
Que
stio
nnai
re.I
nter
natio
nal P
sych
oger
iatri
cs, 2
2,65
0-66
0.6
Bro
daty
, H. (
2007
). M
eani
ng a
nd m
easu
rem
ent o
f car
egiv
er o
utco
mes
.Int
erna
tiona
l Psy
chog
eria
trics
, 19,
363-
381.
Dia
gnos
isf
Alz
heim
er’s
dis
ease
108
Vas
cula
r dem
entia
9D
iffus
e L
ewy
body
dis
ease
14Pa
rkin
son’
s di
seas
e2
Hun
tingt
on’s
dis
ease
1
FTD
, fro
ntal
var
iant
13FT
D, s
eman
tic v
aria
nt10
FTD
, pro
gres
sive
non
-flue
nt a
phas
ias
5N
orm
al p
ress
ure
hydr
ocep
halu
s2
Dem
entia
due
to m
edic
al c
ondi
tion
4D
emen
tia d
ue to
mul
tiple
Etio
logi
es (m
ixed
)23
Dem
entia
not
oth
erw
ise
spec
ified
6T
otal
197
N%
Mal
e65
33
Fem
ale
132
67
Spou
se10
553
Chi
ld79
40Si
blin
g6
3
Ext
ende
d fa
mily
53
Oth
er (e
.g.,
frie
nd, n
eigh
bour
)2
1
Car
egiv
ers
Car
egiv
ers
RR
MC
Fun
ding
and
in-k
ind
supp
ort i
s ge
nero
usly
pro
vide
d by
:
N%
Eve
ryda
y13
870
A c
oupl
e of
tim
es a
wee
k20
10
Onc
e a
wee
k7
4A
cou
ple
of ti
mes
a m
onth
84
Onc
e a
mon
th5
2
Seve
ral t
imes
a y
ear
158
Mis
sing
dat
a4
Exp
lora
tory
fact
or a
naly
sis
reve
aled
2 fa
ctor
s* .
Fact
or 1
acc
ount
ed fo
r 49.
5% o
f the
var
ianc
e an
d Fa
ctor
2 a
ccou
nted
for 1
4.1%
of t
he v
aria
nce.
Fact
or lo
adin
gs a
bove
.45
are
only
dis
play
ed*f
acto
r stru
ctur
e in
varia
nt to
car
egiv
er s
ubgr
oups
.
Item
Fac
tor 1
Fac
tor 2
1. F
eel y
ou d
o no
t hav
e tim
e fo
r yo
urse
lf0.
806
2. F
eel y
ou d
o no
t hav
e tim
e fo
r ot
her
resp
onsi
bilit
ies
0.71
3
3. F
eel a
nger
aro
und
care
rec
ipie
nt0.
641
0.53
5
4. F
eel d
epen
dent
affe
cts o
ther
re
latio
nshi
ps in
a n
egat
ive
way
0.78
6
5. F
eel s
trai
ned
arou
nd y
our
care
rec
ipie
nt0.
739
6. F
eel y
our
heal
th h
as su
ffer
ed0.
803
7. F
eel
you
do n
ot h
ave
priv
acy
0.75
2
8. F
eel y
our
soci
al li
fe h
as su
ffer
ed0.
835
9. F
eel y
ou h
ave
lost
con
trol
of y
our
life
0.84
9
10. F
eel u
ncer
tain
abo
ut th
e fu
ture
0.55
30.
557
11. F
eel y
ou sh
ould
be
doin
g m
ore
0.89
0
12. F
eel y
ou c
ould
be
doin
g a
bett
er jo
b0.
874
Evol
utio
n of
a C
omm
unity
-Bas
ed P
artic
ipat
ory
Appr
oach
in
a R
ural
and
Rem
ote
Dem
entia
Car
e R
esea
rch
Prog
ram
D. M
organ1
A. C
ammer
1 , M
. Crossley2, N
. Stewart3, A
. Kirk4, C
. D’Arcy5, V
. dalBe
llo‐Haas6, L. M
cBain7,
M.E. O
’Con
nell2, J. B
racken
8 , J. Kosteniuk
1
1 Can
adian Ce
ntre fo
r Health an
d Safety in
Agriculture, College
ofM
edicine, University of Saskatche
wan
, 2Dep
artm
ent of Psychology, College
of A
rts an
d Science, University of
Saskatchew
an, 3Co
llege of N
ursing, U
niversity of Saskatche
wan
, 4Dep
artm
ent of Neu
rology, College
of M
edicine, University of Saskatche
wan
, 5App
lied Re
search, U
niversity
of Saskatche
wan
, 6Scho
ol of R
ehab
ilitation
Scien
ces, M
cMaster University, 7 F
irst Nations University of Can
ada, 8 A
lzhe
imer Society of Saskatche
wan
Ackno
wledgem
ents
Core Principles of Com
mun
ity‐Ba
sed
Participatory Re
search (C
BPR):
1.Re
cognizes com
mun
ity as un
it of iden
tity
2.Bu
ilds on
com
mun
ity stren
gths and
resou
rces
3.Facilitates collabo
rativ
e partne
rships in all ph
ases
4.Integrates kno
wledge and actio
n for mutual ben
efit of
all partners
5.Prom
otes co‐learning
and
empo
wermen
t6.Involves a cyclical and
iterative process
7.Add
resses health
from
positive and
ecological
perspe
ctives
8.Disseminates find
ings to
all partne
rs9.Involves a long
‐term com
mitm
ent b
y all partners
(Israel et al., 19
98, 200
1)
Implications
•Ben
efits and
challenges exist fo
r CBP
R; awaren
ess of and
atten
tion to each is useful
•Relationship bu
ilding takes tim
e bu
t creates a solid fo
undatio
n•Shared goals of all partne
rs unite th
e CB
PR process; joins partners of diverse skills to
increase
prod
uctivity
and
increase re
search uptake into system changes
•Kno
wledge translation and exchange helps to
build and
maintain mom
entum
•Lon
g‐term
com
mitm
ent a
nd con
tinuity are key com
pone
nts to successful CBP
R
Backgrou
nd on Ru
ral and
Rem
ote Dem
entia
Care Program
of R
esearch:
•Worldwide prevalen
ce of d
emen
tia estim
ated
at 3
5.6 million
and expe
cted
to dou
ble every 20
years (W
HO, 2012); Canadian
prevalen
ce fo
recasted
to dou
ble by
2038
(Rising Tide
, 2010)
•Rural and
rem
ote areas dispropo
rtionately affected du
e to
higher propo
rtion of older adu
lts and
spe
cific challenges in
inform
al and
form
al care (tim
e, travel, cost, lack of access)
•Program
of research initiated
in Saskatche
wan
in 199
7;
began du
e to shared interests of small group
of researche
rs
partne
ring
with
com
mun
ity m
embe
rs and
develop
ed into a
more relatio
nal, process‐oriented
CBP
R initiative as th
e program develop
ed over three key ph
ases
Phase 1: Lau
nching
Research
Prim
ary Fund
ing: HSU
RC (SHRF) grant
Commun
ity En
gagemen
t: m
eetin
gs with
30
health districts; full‐d
ay con
sulta
tion with
represen
tatives from
27 districts to iden
tify
research priorities
Priorities: E
xamination of challenges in
de
men
tia care across th
e continuu
m;
comparison of long
‐term care (LTC
) facilitie
s with
and
with
out spe
cial care un
its;
investigation of fron
t‐line care provide
rs’
concep
tions of acts of aggression in LTC
Outcomes
: Changes m
ade at re
gion
al level in
aggressive event re
porting and investigation;
curriculum
changes to
con
tinuing
care
assistant p
rogram
made; ado
ption of new
training
program
s to add
ress LTC
acts of
aggression
by reside
nts with
dem
entia
Lesson
s Learne
d: M
aintaining
partnerships
througho
ut re
search process m
ay have
expe
dited the up
take of findings or
stream
lined
the know
ledge translation process
Phase 2: Setting
Sail as a Team
Prim
ary Fund
ing: CIHR and SH
RF New
Em
erging
Team grant
Commun
ity En
gagemen
t: m
eetin
gs with
broad range of stakeho
lders to design projects;
relatio
nships built with
key peo
ple in 14 rural and
remote commun
ities; p
artnership with
Abo
riginal
Grand
mothe
rs group
and
northern he
althcare
providers
Priorities: d
evelop
men
t and
evaluation of
Rural
and Re
mote Mem
ory Clinic (R
RMC) with
longitu
dinal database; develop
men
t and
validation of culturally sen
sitiv
e diagno
stic te
sting
materials; evaluation of Enh
ancing
Care program
Outcomes: R
RMC mod
el validated
, con
tinue
d op
eration via fund
ing from
Ministry of Health
; cultu
rally sen
sitive testing materials in
use; u
se of
telehe
alth
for M
MSE delivery validated
; use of
telehe
alth
for con
tinuing
care appo
intm
ents
Lesson
s Learne
d: partnering im
proved
research at a
ll stages; con
tinue
d involvem
ent
enhanced
research uptake and use
Phase 3: Ancho
ring
with Pa
rtne
rsPrim
ary Fund
ing: CIHR App
lied Ch
air fund
sCo
mmun
ity En
gagemen
t: fo
rmal partnership
created with
stakeho
lders from
various levels
across spe
ctrum of care, includ
ing family and
po
licy makers (Decision Maker Advisory Co
uncil);
yearly dem
entia
care Summit he
ldPriorities: A
nalysis of RRM
C database; edu
catio
n of traine
es, and
partners; examination of pre‐
diagno
sis caregiving
need
s; investigation of
improved
sup
ports for caregivers via telehe
alth
supp
ort g
roup
interven
tion; evaluation of Sum
mit;
determ
ination of next ‘big step
s’in th
e research
Outcomes: C
apacity
building of partners in
coun
cil; adop
tion of te
lehe
alth
supp
ort g
roup
by
ASO
S after lob
bying by
caregiver partners;
know
ledge translationvide
os develop
ed by team
; research projects de
velope
d to engage in Prim
ary
Care fo
r dem
entia
; research grant a
pplication
Lesson
s Learne
d: fo
rmal buy
‐in of p
artners was
not d
ifficult to achieve; needs of p
artners must b
e balanced
; prepare fo
r com
prom
ises
Func
tiona
l Abi
lity
to E
at a
nd D
rink
in P
erso
ns w
ith
Alz
heim
er v
ersu
s no
n-A
lzhe
imer
Dem
entia
1 A. C
amm
er, 2
M.E
. O’C
onn
ell,
3 D. M
org
an, 1
S. W
hiting
1 Colle
ge o
f Ph
arm
acy
and N
utr
itio
n, U
niv
ersity
of Sa
skat
chew
an, 2 D
epar
tmen
t of Ps
ycho
logy
, Colle
ge o
f A
rts
and S
cien
ce, U
niv
ersity
of Sa
skat
chew
an, 3 C
anad
ian
Cen
tre
for
Hea
lth
and S
afet
y in
Agr
icul
ture
, Univ
ersity
of Sa
skat
chew
an
Bac
kgro
und
Met
hods
Find
ings
Implic
atio
ns
Res
earc
h Q
uest
ion
Ack
now
ledge
men
ts
Is t
ype
of d
emen
tia a
ssoc
iate
d w
ith
diff
eren
tial e
atin
g an
d dr
inki
ng f
unct
iona
l ab
ility
in e
arly
-sta
ge d
iagn
osed
cas
es o
f A
lzhe
imer
and
non
-Alz
heim
er d
emen
tia?
•D
ata
wer
e co
llect
ed f
rom
337
RR
MC
pat
ient
s an
d t
heir c
are
par
tner
s
•20
1 pat
ient
s w
ere
dia
gnose
d w
ith
dem
entia;
164
cas
es w
ith
com
ple
te d
ata
wer
e in
clud
ed in
the
ana
lysis
•C
ases
wer
e gr
oup
ed a
ccord
ing
to d
emen
tia
dia
gnosis:
Alz
heim
er D
isea
se d
emen
tia
(AD
) ve
rsus
non-
Alz
heim
er d
emen
tia
(non-
AD
)
•4
item
s fr
om
the
Brist
ol A
ctiv
itie
s of
Dai
ly L
ivin
g (B
-AD
L) 2
0 item
sca
le w
ere
used
to
mea
sure
fun
ctio
nal a
bilit
y. A
t as
sess
men
t, c
are
par
tner
s ra
ted p
atie
nts’
ave
rage
abi
lity
ove
r th
e pas
t tw
o w
eeks
to p
repar
e fo
od, e
at, p
repar
e drink
s, a
nd d
rink
•B-A
DL
rating
s w
ere
dic
hoto
miz
ed t
o ‘
neve
r did
whe
n w
ell a
nd n
o c
hang
e in
fun
ctio
nal
abili
ty’ ve
rsus
‘ch
ange
in fun
ctio
nal a
bilit
y’
•M
ultiple
logi
stic
reg
ress
ion
was
use
d t
o c
ont
rast
abi
lity
to p
repar
e fo
od, e
at, a
nd a
bilit
y to
pre
par
e drink
s fo
r A
D a
nd n
on-
AD
aft
er a
dju
stin
g fo
r se
verity
of
dem
entia
(Clin
ical
D
emen
tia
Rat
ing
Scal
e su
m o
f bo
xes)
, age
, and
sex
-Pe
rsons
with
dem
entia
are
at h
ighe
r risk
for
mal
nutr
itio
n due
to p
hysiolo
gica
l and
beh
avio
ur
chan
ges. M
alnu
tritio
n ca
n ac
cele
rate
cogn
itiv
e dec
line,
incr
ease
risk
of
nega
tive
hea
lth
out
com
es
(unw
ante
d w
eigh
t lo
ss o
r ga
in, m
uscl
e w
asting
, inf
ection,
poor
woun
d h
ealin
g), a
nd n
egat
ivel
y im
pac
t qu
ality
of lif
e.
-A
bilit
y to
eat
and
drink
is c
ritica
l to m
aint
ainin
g nu
tritio
nal h
ealth
and p
erso
nal i
ndep
enden
ce
of per
sons
with
dem
entia.
Little
is k
now
n ab
out
diffe
renc
es in
abi
lity
for
Alz
heim
er D
isea
se
dem
entia
and n
on-
Alz
heim
er D
isea
se d
emen
tia
(e.g
., V
ascu
lar, F
ront
o-t
empora
l, Su
bcort
ical
, Le
wyB
ody)
.
-A
n in
terd
isci
plin
ary
Rur
al a
nd R
emote
Mem
ory
Clin
ic (R
RM
C) in
Sas
katc
hew
an w
as
esta
blishe
d in
200
4 to
dia
gnose
ear
ly-s
tage
and
com
ple
x ca
ses
of
dem
entia.
•M
oni
toring
of
abili
ty t
o p
repar
e fo
od a
nd a
bilit
y to
eat
may
be
requ
ired
so
one
r in
the
disea
se t
raje
ctory
for
non-
AD
dem
entia.
•T
hose
with
non-
AD
dem
entia
may
ben
efit fro
m in
crea
sed n
utrition
support
an
d in
terv
ention
at a
n ea
rlie
r st
age
of
the
disea
se t
raje
ctory
.
•T
hese
fin
din
gs d
emons
trat
e th
e ne
ed for
tailo
ring
clin
ical
inte
rven
tions
ac
cord
ing
to t
he t
ype
of
dem
entia.
•Fu
ture
res
earc
h is n
eeded
on
the
long
itud
inal
eff
ect
of
AD
and
non-
AD
on
func
tiona
l abi
lity
to e
at a
nd d
rink
, and
the
impac
t of
diffe
renc
e on
care
nee
d
and c
are
burd
en o
ver
tim
e.
Freq
uenc
y (%
) or M
ean
(SD)
Mea
n Ag
e (S
D), y
ears
74.7
(8.9
)M
ean
Seve
rity
(SD)
6.8
(3.5
)Se
x
Mal
e
77
(38.
3)Fe
mal
e 1
24 (6
1.7)
Dem
entia
Typ
e
Alzh
eim
er D
iseas
e De
men
tia (A
D) 1
14 (5
6.7)
N
on-A
lzhei
mer
Dise
ase
Dem
entia
(non
AD)
8
7 (4
3.3)
Di
fficu
lty P
repa
ring
Food
N
o/no
t app
licab
le 1
23 (6
1.2)
Yes
5
4 (2
6.9)
Miss
ing
2
4 (1
1.9)
Diffi
culty
Eat
ing
N
o/no
t app
licab
le 1
67 (8
3.1)
Yes
12
(6.0
)M
issin
g
22 (1
0.9)
Diffi
culty
Pre
parin
g Dr
inks
No/
not a
pplic
able
1
37 (6
8.2)
Yes
40
(19.
9)
M
issin
g
24 (1
1.9)
Di
fficu
lty D
rinki
ng
No/
not a
pplic
able
177
(88.
1)Ye
s
2 (1
.0)
Miss
ing
22
(10.
9)
23.5
2.9
24.5
40.0
11.7
20.0
0.0
5.0
10.0
15.0
20.0
25.0
30.0
35.0
40.0
45.0
Diffi
culty
Pre
parin
g Fo
odDi
fficu
lty E
atin
gDi
fficu
lty P
repa
ring
Drin
ks
Proportion (%)
Alzh
eim
er D
iseas
e De
men
tiaN
on A
lzhei
mer
Dise
ase
Dem
entia
Cha
ract
eristics
of th
e St
udy
Popul
atio
n
Proport
ion
of
Pers
ons
with
Difficu
lty
in F
unct
iona
l Abi
lity
Crud
eAs
soci
atio
nO
dds R
atio
(95%
CI)
Adju
sted
Ass
ocia
tion
Odd
s Rat
io (9
5% C
I) De
men
tia T
ype
Alzh
eim
er D
iseas
e De
men
tia (A
D)1.
001.
00No
n-Al
zhei
mer
Dise
ase
Dem
entia
(non
AD)
2.17
(1.1
3 –
4.15
)2.
35(1
.11
–4.
98)
Sex
Mal
e1.
001.
00Fe
mal
e1.
26 (0
.65
–2.
45)
1.46
(0.6
7–
3.19
) Ag
e1.
02 (0
.98
–1.
06)
1.02
(0.9
8 –
1.06
) Se
verit
y1.
33 (1
.18
–1.
50)
1.34
(1.1
8 –
1.52
)
Crud
eAs
soci
atio
nO
dds R
atio
(95%
CI)
Adju
sted
Ass
ocia
tion
Odd
s Rat
io (9
5% C
I) De
men
tia T
ype
Alzh
eim
er D
iseas
e De
men
tia (A
D)1.
01.
0No
n-Al
zhei
mer
Dise
ase
Dem
entia
(non
AD)
4.37
(1.1
4–
16.7
2)5.
11 (1
.11
–23
.49)
Se
xM
ale
1.0
1.0
Fem
ale
0.30
(0.0
9 –
1.02
)0.
20 (0
.05
–0.
89)
Age
1.04
(0.9
7 –
1.12
)1.
08 (0
.99
–1.
19)
Seve
rity
1.27
(1.0
8 –
1.50
)1.
27 (1
.05
–1.
54)
Crud
eAs
soci
atio
nO
dds R
atio
(95%
CI)
Adju
sted
Ass
ocia
tion
Odd
s Rat
io (9
5% C
I) De
men
tia T
ype
Alzh
eim
er D
iseas
e De
men
tia (A
D)1.
01.
0No
n-Al
zhei
mer
Dise
ase
Dem
entia
(non
AD)
0.77
(0.3
7 –
1.59
)0.
76 (0
.31
–1.
83)
Sex
Mal
e1.
01.
0Fe
mal
e0.
49 (0
.24
–1.
00)
0.55
(0.2
3 –
1.31
) Ag
e1.
05 (1
.00
–1.
10)
1.04
(0.9
8 –
1.09
) Se
verit
y1.
55 (1
.32
–1.
83)
1.56
(1.3
1 –
1.84
)
Ass
oci
atio
ns w
ith
Difficu
lty
Prep
arin
g Fo
od
Ass
oci
atio
ns w
ith
Difficu
lty
Eat
ing
Ass
oci
atio
ns w
ith
Difficu
lty
Prep
arin
g D
rink
s
Fact
ors
Lead
ing
to t
he U
tili
zati
on
of
a D
em
en
tia S
peci
fic
Tra
inin
g P
rog
ram
in
Ru
ral
Lon
g-T
erm
Care
Hom
es
Tra
cy D
an
yly
shen
-Layco
ck, B
.S.P
.E.,
M.S
.W.,
R.S
.W (
SK
)D
oct
ora
l Stu
den
t, H
ealt
h S
cien
ces,
Un
ivers
ity o
f Sask
atc
hew
an
•Ind
ivid
uals
with
dem
entia
who
liv
e in
lon
g-te
rm c
are
ho
mes
may
exh
ibit
resp
onsi
ve b
ehav
iour
s (e
.g.
yelli
ng,
hitti
ng a
nd sw
earin
g) (A
lzhe
imer
Soc
iety
of B
C, 2
010)
.•N
ursi
ng a
ides
are
the
mos
t fr
eque
nt r
ecip
ient
s of
the
re
spon
sive
beh
avio
urs (
Gat
es e
t al.,
200
3).
•Sta
ff w
ho w
ork
in lo
ng–t
erm
car
e ho
mes
ofte
n fe
el a
s if
they
do
no
t ha
ve
the
skill
s to
m
anag
e re
spon
sive
be
havi
ours
. A
s a
resu
lt, m
anag
ers
and
rese
arch
ers
hav
e re
com
men
ded
that
sta
ff be
pro
vide
d w
ith t
rain
ing
in
man
agin
g re
spon
sive
beh
avio
urs.
BA
CK
GR
OU
ND
•The
ass
umpt
ion
behi
nd th
e PA
RH
IS F
ram
ewor
k is
that
th
e lik
elih
ood
of re
sear
ch e
vide
nce
bein
g tra
nsla
ted
into
pr
actic
e w
ill b
e m
ore
succ
essf
ul w
hen
evid
ence
, co
ntex
t, an
d fa
cilit
atio
n ar
e hi
gh (|
Ryc
roft-
Mal
one,
20
10).
•The
Gen
tle P
ersu
asiv
e A
ppro
ache
s Pro
gram
(GPA
) is a
de
men
tia sp
ecifi
c tra
inin
g pr
ogra
m d
esig
ned
for s
taff
in
long
-term
car
e ho
mes
iden
tify,
man
age
and
de-e
scal
ate
resp
onsi
ve b
ehav
iour
s. F
our
mod
ules
are
del
iver
edov
er 7
.5 h
ours
.
PA
RIH
S F
RA
MEW
OR
K
•The
pur
pose
of t
his r
esea
rch
is to
exa
min
e th
e re
latio
nshi
p be
twee
n th
e el
emen
t of
Faci
litat
ion
in th
e PA
RIH
S fr
amew
ork
and
the
sust
aina
bilit
y of
bes
t pra
ctic
e gu
idel
ines
in c
are
hom
es, i
n pa
rticu
lar t
he G
PA P
rogr
am.
The
gene
ral p
ropo
sitio
n gu
idin
g th
is re
sear
ch w
as th
at fa
cilit
atio
n pl
ays a
n im
porta
nt ro
le in
the
sust
aina
bilit
y of
bes
t pra
ctic
e in
terv
entio
ns su
ch a
s the
GPA
Pro
gram
.•D
ata
anal
ysis
for t
he fu
ll st
udy
are
in p
rogr
ess.
Thi
s pos
ter r
epor
ts o
n th
ree
spec
ific
ques
tions
rela
ted
to th
e im
plem
enta
tion
and
sust
aina
bilit
y of
the
GPA
pro
gram
, fr
om th
e pe
rspe
ctiv
e of
staf
f, G
PA C
oach
es, a
nd lo
ng-te
rm c
are
hom
e le
ader
s.
•Man
y of
the
GPA
skill
s are
bei
ng u
tiliz
ed b
y st
aff i
n lo
ng-te
rm
care
hom
es to
var
ying
deg
rees
. Th
e m
ost c
onsi
sten
tly id
entif
ied
skill
s tha
t sta
ff u
se a
re re
dire
ctio
n, re
mai
ning
cal
m, a
nd u
sing
the
Stop
and
Go
tech
niqu
e.•L
eade
rs p
lay
an im
porta
nt ro
le in
the
impl
emen
tatio
n an
d su
stai
nabi
lity
of a
dem
entia
spec
ific
train
ing
prog
ram
. Whe
n le
ader
s pro
mot
ed th
e pr
ogra
m a
nd m
odel
ed th
e be
havi
ours
, sta
ff w
ere
mor
e lik
ely
to re
port
usin
g th
e G
PA sk
ills.
•Alth
ough
the
GPA
Coa
ches
pla
yed
a ro
le in
the
sust
aina
bilit
y of
th
e G
PA p
rogr
am, t
hey
defin
ed th
eir r
ole
as “
assis
ting
staf
f be
hind
the
scen
es.”
•GPA
Coa
ches
did
not
pro
vide
dire
ct fe
edba
ck to
staf
f who
st
rugg
led
with
man
agin
g be
havi
ours
. Rat
her t
han
conf
ront
ing
or
dire
ctly
app
roac
hing
thei
r co-
wor
kers
, the
y m
odel
ed th
e G
PA
beha
vior
s or c
oach
ed st
aff i
n us
ing
the
GPA
skill
s.
Que
stio
n 2
(from
inte
rvie
ws w
ith G
PA c
oach
es)
Wha
t ski
lls d
id y
ou, a
s the
GPA
Coa
ch, u
se to
hel
p th
e st
aff u
tiliz
e th
e sk
ills a
nd in
terv
entio
ns ta
ught
in th
e G
PA p
rogr
am?
•mod
eled
GPA
beh
avio
urs(
e.g.
pat
ienc
e, c
alm
ness
, pac
ing
care
, le
arni
ng a
bout
the
resi
dent
)•in
dire
ctly
pro
vide
d st
aff w
ith fe
edba
ck w
hen
they
did
not
util
ize
G
PA sk
ills
•rel
ieve
staf
f whe
n th
ey w
ere
stru
gglin
g w
ith a
resi
dent
•taug
ht st
aff
to re
dire
ct a
nd d
e-es
cala
te re
spon
sive
beh
avio
urs.
Que
stio
n 3
(from
inte
rvie
ws w
ith D
OC
sand
Adm
inis
trat
ors)
Wha
t did
you
as a
lead
er to
sust
ain
the
GPA
Pro
gram
in y
our h
ome?
•fre
ed u
p re
sour
ces (
e.g.
fina
ncia
l and
staf
fing)
to im
plem
ent t
he
prog
ram
•mod
eled
GPA
beh
avio
urs(
e.g.
pat
ienc
e, c
alm
ness
, and
kno
win
g th
e re
side
nts)
•pro
mot
ed p
robl
em so
lvin
g su
rrou
ndin
g re
spon
sive
beh
avio
urs
•ens
ured
they
wer
e al
way
s ava
ilabl
e fo
r sta
ff to
con
sult
with
abo
ut
beha
viou
rs.
RESU
LT
S
CO
NC
LU
SIO
NS
PU
RPO
SE
•A
cros
s-se
ctio
nal r
etro
spec
tive
qual
itativ
e re
sear
ch d
esig
ned
was
use
d fo
r thi
s st
udy.
•S
ite s
elec
tion:
pur
pose
ful s
ampl
ing
was
use
d to
sele
ct fi
ve ru
ral l
ong-
term
car
e ho
mes
in S
aska
toon
Hea
lth R
egio
n.
•P
artic
ipan
ts:t
his s
tudy
focu
sed
on th
e ex
perie
nces
of t
he A
dmin
istra
tors
, D
irect
ors o
f Car
e (D
OC
’s),
GPA
Coa
ches
, reg
iste
red
nurs
es, l
icen
sed
prac
tical
nu
rses
and
nur
sing
aide
s dur
ing
and
afte
r im
plem
enta
tion
of th
e G
PA p
rogr
am in
th
eir c
are
hom
es.
•Dat
a co
llect
ion:
14
sem
i-stru
ctur
ed in
terv
iew
s and
4 fo
cus g
roup
s wer
e co
nduc
ted
betw
een
Febr
uary
1, 2
012
and
Janu
ary
21,
201
3.•D
ata
Ana
lysi
s: d
ata
wer
e an
alyz
ed u
sing
a q
ualit
ativ
e, in
duct
ive
appr
oach
usi
ngth
e co
nsta
nt c
ompa
rativ
e m
etho
d (G
lase
r & S
traus
s, 19
67; C
harm
az, 2
006)
.
Que
stio
n 1
(from
inte
rvie
w w
ith D
OC
’s,
nurs
es, a
nd G
PA C
oach
es a
nd fr
om
focu
s gro
ups w
ith n
ursi
ng a
ides
)“H
ow w
as th
e G
PA p
rogr
am u
sed
by st
aff i
n yo
ur lo
ng-te
rm c
are
hom
e?”
Staf
f rep
orte
d th
at th
ey u
sed
the
follo
win
g sk
ills f
rom
GPA
: •r
emai
ning
cal
m a
nd p
atie
nt•
usin
g th
e St
op a
nd G
o te
chni
que
•ass
essi
ng re
side
nt m
oods
•pac
ing
care
,•r
edire
ctin
g re
side
nts
•kno
win
g th
e re
side
nt•e
xpla
inin
g th
e ta
sk•c
omm
unic
atin
g w
ith st
aff a
bout
trig
gers
& in
terv
entio
ns•u
nder
stan
ding
the
dise
ase
proc
ess.
RESU
LT
S C
ON
’T
MET
HO
DS
TH
E G
EN
TLE P
ER
SU
ASIV
E
APPR
OA
CH
ES P
RO
GR
AM
An
Eval
uatio
n of
a R
emin
isce
nce
Inte
rven
tion
for C
areg
iver
s of
Per
sons
w
ith D
emen
tia v
ia T
eleh
ealth
Vid
eoco
nfer
enci
ng
Joe
Enr
ight
& M
egan
E. O
’Con
nell
-Departm
ent o
f Psycholog
y, University
of Saskatchewan
•Inform
al caregivers of persons with
de
men
tia experience significant difficultie
s or “caregiver b
urden”, w
hich has been
linked to th
e qu
ality
of the
caregiver and
care‐recipient relationship1.
•Re
miniscence Therapy (RT) is th
e facilitated
recall of shared po
sitiv
e mem
ories, and
may im
prove the qu
ality
of the
relationship
and mitigate caregiver difficultie
s2,3.
•In rural and
rem
ote commun
ities th
ere is a
high
propo
rtion of older‐adu
lts, and
limite
d access to
health
services4. This makes
efficient delivery of dem
entia
‐care a
challenge.
•Vide
ocon
ferencing over th
e Telehe
alth
Saskatchew
an network offers a secure
med
ium fo
r the de
livery of service to
rural
and remote areas, aim
ed at improving
access to
services hind
ered
by geograph
y5.
Thou
gh promising, th
e po
tential of this
med
ium fo
r the de
livery of psychosocial
interven
tions fo
r caregivers is relatively
untested
6 .
BA
CK
GR
OU
ND
Ack
now
ledg
emen
ts
Objective
:•The
first o
bjective is to
investigate the
bene
fits of a RT activ
ity fo
r caregivers of
person
s with
dem
entia
Metho
d:•Sixty‐fou
r caregiver/pe
rson
with
dem
entia
dyads will be recruited from
the University
of Saskatche
wan
Rural and
Rem
ote Mem
ory
Clinic and
rando
mly assigne
d to eith
er an in‐
person
RT interven
tion grou
p or to
a wait‐list
control group
receiving
treatm
ent a
s usual.
•The
RT interven
tion will be based on
an
empirically sup
ported
autob
iographical
mem
ory activ
ity.
•Relationship qu
ality
, caregiver burde
n, and
othe
r ou
tcom
e measures will be
administered at pre, post, and
follow‐up.
Objective
:•A secon
d ob
jective is to
assess the efficacy of
the RT
interven
tion de
livered
via
vide
ocon
ferencing.
Metho
d:•Dyads in
the wait‐list con
trol group
will
receive the same RT
interven
tion an
d measures, but th
e interven
tion will be
delivered
via video
conferen
cing
over
Telehe
alth Saskatche
wan.
Project R
elev
ance:
•This project w
ill poten
tially provide
evide
nce
of RT efficacy for im
proving caregiver/care‐
recipien
t relationships and
red
ucing pe
rceived
burden
of caring for pe
rson
s with
dem
entia
. Furthe
r, it will inform
the use of
vide
ocon
ferencing techno
logy in
the
developm
ent o
f accessible services fo
r those
with
limite
d access, especially in
rural and
remote areas.
PHA
SE 1
: In-
Pers
on T
rial
PHA
SE 2
: Tel
ehea
lth
Del
iver
y
References
1.Alzhe
imer Society of C
anada. (2
010). R
ising Tide: The
Impa
ct of D
ementia
on Ca
nadian
Society. Toron
to: A
utho
r 2. W
oods, B
., et al. (200
5).
Reminiscence therapy for pe
ople with
dem
entia
(review).C
ochran
e Datab
aseSystem
atic Review,2005, (2
); 3. W
oods, R
.T., et al. (200
9). R
eminiscence
grou
ps fo
r pe
ople with
dem
entia
and
the
ir family carers: pragm
atic eight‐cen
tre rand
omised
trial of joint rem
iniscence an
d mainten
ance versus usual
treatm
ent: a protocol. Trials20
09, (10),6
4 4. M
organ, D.,e
t al. (200
2). R
ural fa
milies caring for a relativ
e with
dem
entia
:Barrie
rs to
use of formal services.
Social Science & M
edicine, 55(7), 51‐64
5.M
organ, D. G
., Crossley, M
., Kirk, A
., McBain, L., Stew
art, N. J., D’Arcy, C., ... & Basran, J. (2
011). Evaluation of
telehe
alth fo
r preclinic assessm
ent a
nd fo
llow‐up in an interprofessional rural and
rem
ote mem
ory clinic. Jou
rnal of A
pplied Geron
tology, 30(3), 304
‐331
. 6.O’Con
nell, M
. E., Crossley, M
., Ca
mmer, A
., Morgan, D., Allingham,W
., Ch
eavins, B
., Dalziel, D
., Lemire, M
., Mitche
ll, S., & M
organ, E. (in press).
Develop
men
t and
evaluation of a te
lehe
alth video
conferen
ced supp
ort g
roup
for rural spo
uses of ind
ividuals diagnosed
with
atypical early‐o
nset
demen
tias. Dem
entia
: TheInternationa
l Jou
rnal of Social Research an
d Practice.
Patie
nts
*Het
erog
eneo
us c
ateg
ory,
Diff
use
Lew
y Bo
dy D
isea
se, D
emen
tia
due
to P
arki
nson
’s d
isea
se o
r Hun
tingt
on’s
Car
egiv
ers
Age
18-9
3 ye
ars
old
(M=
60.2
9; S
D=
14.6
9)R
elat
ions
hip
to p
atie
nt -
51%
spo
uses
; 40%
ch
ildre
nFr
eque
ncy
of in
-per
son
cont
act w
ith p
atie
nt -
64%
repo
rt ev
eryd
ay; 1
5% re
port
wee
kly
INTR
OD
UC
TIO
NIN
TRO
DU
CTI
ON
Purp
ose
Th
e pu
rpos
e of
the
curr
ent s
tudy
was
to id
entif
y th
e as
soci
atio
n be
twee
n di
agno
sis
and
care
give
rs’r
epor
t of
burd
en a
nd d
istre
ss
Bac
kgro
und
D
emen
tia d
ue to
Alz
heim
er d
isea
se (A
D) i
s m
ost
com
mon
ly d
iagn
osed
, but
is o
nly
one
type
of d
emen
tia
E
ach
type
of d
emen
tia is
ass
ocia
ted
with
uni
que
beha
viou
ral,
cogn
itive
, and
func
tiona
l im
pairm
ents
1
E
arly
sta
ge im
pairm
ents
diff
er fo
r the
dem
entia
type
s,
whi
ch m
ay h
ave
impl
icat
ions
for c
are
need
s
Dem
entia
due
to A
D –
early
mem
ory
loss
2,3,
4,5
B
ehav
iour
al v
aria
nt F
TD –
loss
of s
ocia
l pro
prie
ty a
nd
exec
utiv
e fu
nctio
n6,7,
8
S
eman
tic v
aria
nt F
TD –
loss
of l
angu
age
com
preh
ensi
on a
nd
obje
ct k
now
lege
7,9,
10
P
rogr
essi
ve n
on-fl
uent
FTD
–lo
ss o
f lan
guag
e flu
ency
6,7,
8,11
D
iffus
e Le
wy
Bod
y D
emen
tia –
aler
tnes
s an
d vi
suos
patia
l12
V
ascu
lar/m
ixed
dem
entia
–va
ried13
, but
com
mon
ly
proc
essi
ng s
peed
/atte
ntio
n, e
xecu
tive
func
tion
C
arin
g fo
r per
sons
dia
gnos
ed w
ith d
emen
tia d
ue to
fro
ntot
empo
ral d
egen
erat
ion
(FTD
) has
bee
n sh
own
to
be re
late
d to
gre
ater
car
egiv
er d
istre
ss a
nd b
urde
n w
hen
com
pare
d w
ith c
areg
iver
s of
per
sons
with
de
men
tia d
ue to
AD
14,1
5
Diff
eren
tial C
areg
iver
Dis
tres
s an
d B
urde
n A
ssoc
iate
d w
ith
Dia
gnos
es o
f Typ
es o
f Dem
entia
RES
ULT
SR
ESU
LTS
M. E
. O’C
onne
ll1, J
. Enr
ight
1 , M
. Cro
ssle
y,1
& D
. Mor
gan2
1D
epar
tmen
t of P
sych
olog
y, U
nive
rsity
of S
aska
tche
wan
, 2 Can
adia
n C
entr
e fo
r Hea
lth a
nd S
afet
y in
Agr
icul
ture
, Uni
vers
ityof
Sas
katc
hew
anP
rese
ntat
ion
at
the
74TH
An
nu
al C
anad
ian
Psy
chol
ogic
al A
ssoc
iati
on C
onfe
ren
ce, Q
ueb
ec C
ity,
QB
R
ural
and
Rem
ote
Mem
ory
Clin
ic –
neur
opsy
chol
ogy,
neu
rolo
gy (i
nclu
ding
rece
nt b
lood
w
ork
and
CT
head
sca
n), n
ursi
ng, a
nd p
hysi
cal
ther
apy
asse
ssm
ent
Te
am in
terv
iew
of p
atie
nt a
nd fa
mily
D
isci
plin
e sp
ecifi
c as
sess
men
ts
Sta
ndar
dize
d qu
estio
nnai
res
D
iagn
oses
afte
r int
erpr
ofes
sion
al te
am m
eetin
g
1 Rob
illard
, A. (
2007
). C
linic
al d
iagn
osis
of d
emen
tia. A
lzhe
imer
's &
Dem
entia
, 3,2
92-2
98.
2 Gal
asko
, D.,
Sch
mitt
, F.,
Thom
as, R
., Ji
n, S
., Be
nnet
t, Fe
rris,
S. f
or th
e A
lzhe
imer
Dis
ease
Coo
pera
tive
Stu
dy (2
005)
. Det
aile
d as
sess
men
t of a
ctiv
ities
of d
aily
livi
ng in
mod
erat
e to
sev
ere
Alz
heim
er’s
dis
ease
. Jou
rnal
of t
he In
tern
atio
nal N
euro
psyc
holo
gica
l Soc
iety
, 11,
446
-453
.3 H
onig
, L. S
. & M
ayeu
x, R
. (20
01).
Nat
ural
his
tory
of A
lzhe
imer
'sdi
seas
e. A
ging
-Clin
ical
& E
xper
imen
tal R
esea
rch,
13,
171-
182.
4 Hsi
ung,
G. Y
., A
lipou
r, S
., Ja
cova
, C.,
Gra
nd, J
., G
auth
ier,
S.,B
lack
, S. E
., Bo
ucha
rd, R
. W.,
Kerte
sz, A
., Lo
y-E
nglis
h, I.
, Hog
an, D
. B.,
Roc
kwoo
d, K
., &
Fel
dman
, H. H
. 200
8. T
rans
ition
fro
m c
ogni
tivel
y im
paire
d no
t dem
ente
d to
Alz
heim
er's
dis
ease
: an
anal
ysis
of c
hang
es in
func
tiona
l abi
litie
s in
a d
emen
tia c
linic
coh
ort.
Dem
entia
& G
eria
tric
Cog
nitiv
e D
isor
ders
, 25,
483
-49
0.
5 Sto
rand
t, M
., G
rant
, E. A
., M
iller,
J. P
. & M
orris
, J. C
. (20
06).
Long
itudi
nal c
ours
e an
d ne
urop
atho
logi
c ou
tcom
es in
orig
inal
vs.
revi
sed
MC
I and
in p
re-M
CI.
Neu
rolo
gy, 6
7,46
7-73
.6 K
erte
sz, A
., M
cMon
agle
, P.,
Bla
ir, M
., D
avis
on, W
. & M
unoz
, D. G
. (20
05).
The
evol
utio
n an
d pa
thol
ogy
of fr
onto
tem
pora
l dem
entia
.Bra
in, 1
28,1
996-
2005
.7 K
erte
sz, A
., B
lair,
M.,
McM
onag
le, P
., &
Mun
oz, D
. G. (
2007
). Th
e di
agno
sis
and
cour
se o
f fro
ntot
empo
ral d
emen
tia. A
lzhe
imer
’s D
isea
se &
Ass
ocia
ted
Dis
orde
rs, 2
1,15
5-16
3.8 M
arcz
insk
i, C
. A, D
avid
son,
W.,
& K
erte
sz, A
. (20
04).
A lo
ngitu
dina
l stu
dy o
f beh
avio
r in
front
otem
pora
l dem
entia
and
prim
ary
prog
ress
ive
apha
sia.
Cog
nitiv
e an
d B
ehav
iora
l Neu
rolo
gy, 1
7,
185-
190.
9 Jef
ferie
s, E
, Pat
ters
on, K
., &
Lam
bon,
R. M
. A. (
2006
). Th
e na
tura
l his
tory
of l
ate-
stag
e "p
ure"
sem
antic
dem
entia
. Neu
roca
se, 1
2,1-
14.
10S
eele
y, W
. W.,
Bau
er, A
. M.,
Mille
r, B
. L.,
Gor
no-T
empi
ni, M
. L.,
Kra
mer
, J. H
., W
eine
r, M
., &
Ros
en, H
. J. (
2005
). Th
e na
tura
l his
tory
of t
empo
ral v
aria
nt fr
onto
tem
pora
l dem
entia
. N
euro
logy
, 64,
1384
-139
0.11
Le R
hun,
E.,
Ric
hard
, F.,
& P
asqu
ier,
F. (2
005)
. Nat
ural
his
tory
of p
rimar
y pr
ogre
ssiv
e ap
hasi
a. N
euro
logy
, 65,
887-
891.
12B
alla
rd, C
. G.,
O'B
rien,
J.T
., S
wan
n, A
. G.,
Thom
pson
, P.,
Nei
ll, D
., &
McK
eith
, I. G
. (20
01a)
. The
nat
ural
his
tory
of p
sych
osis
and
depr
essi
on in
dem
entia
with
Lew
y bo
dies
and
Alz
heim
er's
di
seas
e: P
ersi
sten
ce a
nd n
ew c
ases
ove
r 1 y
ear o
f fol
low
-up.
Jou
rnal
of C
linic
al P
sych
iatry
, 62,
46-4
9.13
Ben
nett,
H. P
., C
orbe
tt, A
. J.,
Gad
en, S
., G
rays
on, D
. A.,
Kril
,J. J
., &
Bro
e, G
. A. (
2002
). Su
bcor
tical
vas
cula
r dis
ease
and
func
tiona
l dec
line:
A 6
-yea
r pre
dict
or s
tudy
. Jou
rnal
of t
he
Am
eric
an G
eria
tric
Soci
ety,
50,
196
9-19
77.
14de
Vug
t, M
., R
iedi
jk, S
. R.,
Aal
ten,
P.,
Tibb
en, A
., va
n S
wie
ten,
J. C
., &
Ver
hey,
F. R
. J. (
2006
). Im
pact
of b
ehav
iour
al p
robl
ems
on s
pous
al c
areg
iver
: A c
ompa
rison
bet
wee
n A
lzhe
imer
’s
dise
ase
and
front
otem
pora
l dem
entia
. Dem
entia
and
Ger
iatri
c C
ogni
tive
Dis
orde
rs, 2
2, 3
5-41
.15
Rie
dijk
, S. R
., de
Vug
t, M
. E.,
Dui
venv
oord
en, H
. J.,
Nei
rmei
jer,
M. F
., va
n S
wie
ten,
J. C
., Ve
rhey
, F. R
. J.,
& T
ibbe
n, A
. (20
06).
Car
egiv
er b
urde
n, h
ealth
-rela
ted
qual
ity o
f life
and
cop
ing
in
dem
entia
car
egiv
ers:
A c
ompa
rison
of f
ront
otem
pora
l dem
entia
and
Alz
heim
er’s
dis
ease
. Dem
entia
and
Ger
iatri
c C
ogni
tive
Dis
orde
rs, 2
2, 4
05-4
12.
16O
’Rou
rke,
N. &
Tuo
kko,
H.A
. (20
03).
Psy
chom
etric
pro
perti
es o
f an
abrid
ged
vers
ion
of th
e Za
rit B
urde
n In
terv
iew
with
in a
repr
esen
tativ
e C
anad
ian
care
give
r sam
ple.
The
Ger
onto
logi
st,
43,1
21-1
27.
17D
erog
atis
, L.,
& M
elis
arat
os, N
. (19
83).
The
Brie
f Sym
ptom
Inve
ntor
y: A
n in
trodu
ctor
y re
port.
Psy
chol
ogic
al M
edic
ine,
13,
595-
605.
18
Hug
hes,
C. P
., Be
rg, L
., D
anzi
nger
, W. L
., C
oben
, L. A
., &
Mar
tin, R
. L. (
1982
). A
new
clin
ical
sca
le fo
r sta
ging
of d
emen
tia. B
ritis
h Jo
urna
l of P
sych
iatry
, 140
, 566
-72.
19O
’Bry
ant,
S. E
., W
arin
g, S
.C.,
Cul
lum
, C. M
., H
all,
J., L
acrit
z, L
., M
assm
an, P
. J.,
Lupo
, P. J
., R
eisc
h, J
. S.,
Doo
dy, R
. & T
exax
Alz
heim
er’s
Res
earc
h C
onso
rtium
. (20
08).
Sta
ging
dem
entia
us
ing
Clin
ical
Dem
entia
Rat
ing
Scal
e Su
m o
f Box
es s
core
s: a
Tex
as A
lzhe
imer
’s re
sear
ch c
onso
rtium
stu
dy.
Arc
hive
s of
Neu
rolo
gy, 6
5,10
91-5
.
Dia
gnos
isf
Age
Mild
Cog
nitiv
e Im
pair
men
t (am
nest
ic
non-
amne
stic
, sin
gle
dom
ain,
etc
)46
69.6
3 (1
1.81
)
Dem
entia
due
to A
lzhe
imer
’s d
isea
se
(AD
)10
075
.56
(7.4
4)
Vas
cula
r de
men
tia o
r m
ixed
vas
cula
r de
men
tia30
74.2
7 (9
.37)
Subc
ortic
al d
emen
tias*
1775
.12
(10.
61)
FTD
var
iant
s26
70.2
7 (1
1.50
)
Dem
entia
NO
S or
due
to m
edic
al
cond
ition
1072
.90
(10.
94)
Tot
al22
973
.44
(9.8
2)
SETT
ING
SETT
ING
Rur
al a
nd R
emot
e M
emor
y C
linic
fund
ing
and
in-k
ind
supp
ort i
s ge
nero
usly
pro
vide
d by
:
Des
crip
tive
Stat
istic
s M
(SD
)
* CD
R-S
OB
sco
res
rang
e fro
m 0
-18,
with
hig
her s
core
s de
mon
stra
ting
mor
e co
gniti
ve a
nd fu
nctio
nal
impa
irmen
t**ZB
I sco
res
rang
e fro
m 0
-36
with
hig
her s
core
s de
mon
stra
ting
mor
e ca
regi
ver b
urde
n**
* BS
I sco
res
rang
e fro
m 0
-212
with
hig
her s
core
s de
mon
stra
ting
mor
e ps
ycho
logi
cal d
istre
ss
Afte
r con
trolli
ng fo
r sev
erity
(CD
R-S
OB
), no
sta
tistic
ally
sig
nific
ant
diffe
renc
es in
bur
den
(ZB
I; F 5
,213
= 1.
62; p
> 0.
05; p
artia
l η2
= 0.
04)
or d
istre
ss (B
SI;
F 5,2
13=
1.00
; p>
0.05
; par
tial η
2=
0.02
)
App
aren
t sim
ilarit
y in
bur
den
and
dist
ress
for M
CI a
nd
subt
ypes
of d
emen
tia, b
ut e
ffect
siz
e es
timat
es a
re
smal
l sug
gest
ing
caut
ion
rega
rdin
g as
sum
ptio
n of
eq
uiva
lenc
e. T
hese
dia
gnos
tic g
roup
ings
may
be
too
gros
s to
dem
onst
rate
diff
eren
tial d
istre
ss/b
urde
n, o
r th
ese
mea
sure
s m
ay n
ot b
e su
ffici
ently
sen
sitiv
e.
MEA
SUR
ESM
EASU
RES
Car
egiv
er S
elf-R
epor
t
Zarit
Bur
den
Inte
rvie
w16
–ca
regi
ver s
elf-r
epor
t of
burd
en
B
rief S
ympt
om In
vent
ory1
7–
care
give
r sel
f-rep
ort o
f ge
nera
l psy
chol
ogic
al d
istre
ss
Patie
nt V
aria
bles
S
ever
ity o
f im
pairm
ent w
ith th
e C
linic
al D
emen
tia
Rat
ing
Scal
e18
–su
m o
f box
sco
re –
less
spe
cific
to
mem
ory
chan
ges1
9
D
iagn
osis
–ba
sed
on in
terp
rofe
ssio
nal
asse
ssm
ent
Dia
gnos
isC
DR
-SO
B*
ZBI**
BSI
***
MC
I2.
45 (1
.70)
13.6
5 (1
0.80
)16
.52
(14.
31)
AD
dem
entia
6.96
(3.5
0)13
.63
(9.2
7)15
.76
(19.
32)
Mix
ed o
r V
aD7.
29 (3
.68)
13.3
3 (5
.71)
14.5
3 (1
4.38
)
Subc
ortic
al d
emen
tias
6.41
(3.1
5)16
.13
(8.8
6)14
.53
(12.
44)
FTD
var
iant
s5.
70 (3
.20)
13.8
8 (8
.89)
16.6
5 (1
5.08
)
Dem
entia
oth
er4.
39 (3
.13)
12.8
0 (1
0.23
)25
.80
(21.
53)
Tot
al5.
77 (3
.61)
13.7
7 (9
.14)
16.2
0 (1
6.96
)
Pred
icto
rs o
f rap
id c
ogni
tive
decl
ine
in ru
ral p
atie
nts
with
Alz
heim
er’s
dis
ease
.D
rew
Hag
er, A
ndre
w K
irk,
Deb
ra M
orga
n, C
hand
ima
Kar
unan
ayak
e, M
egan
O’C
onne
ll
•There is con
side
rable variation in th
e rate of cognitiv
e de
clinein patients
diagno
sed with
Mild
Cognitiv
e Im
pairmen
t (MCI) o
r Dem
entia.
1
•Ra
pidly de
teriorating scores on the Mini M
ental State Examination in
patie
nts with
dem
entia
have be
en sho
wn to predict a poo
r progno
sis.2
•Pred
ictors of rapid cognitiv
e de
cline wou
ld have great clinical utility
. •
Previous predictors have been suggested, includ
ing youn
ger age, highe
r ed
ucation, less cognitiv
e and functio
nal abilities at baseline, fa
mily history
of dem
entia
, less anxiety, dep
ression, falls, and
highe
r caregiver bu
rden
. •
Pred
ictors of d
ecline may vary be
tween differen
t pop
ulations/settin
gs.
•This study
aim
s to determine pred
ictors of d
ecline by
assessing
clinical
data from
a rural pop
ulation in th
e mid‐w
estern Canadian province of
Saskatchew
an.
•Clear pred
ictors of rapid decline could he
lp physicians navigate
approp
riate treatm
ent scenarios and
allow fo
r tim
e‐sensitive discussions
with
patients and their families.
•Data Co
llection be
gan in M
arch 200
4 at th
e Ru
ral and
Rem
ote Mem
ory
Clinic (R
RMC) in
Saskatoon
, Saskatche
wan.
•Non
‐institu
tiona
lized
patients were referred
to th
e clinic by their family
physicians whe
re th
ey were assessed
by a ne
urologist, neu
ropsycho
logy
team
and
a physical the
rapist.
•Sociod
emograph
ic and
clinical inform
ation, as well as functio
naland
lifestyle status, were the inde
pend
ent v
ariables in
this study. The
se were
assessed
on clinic day by administering
patient and
caregiver
questio
nnaires.
•The MMSE score at the
one
year follow up visit sub
tracted from
the
MMSE score at the
initial clinic day rep
resented
cognitiv
e change and
was
the de
pend
ant v
ariable.
•The participants includ
ed in
this study
were the first 72 patie
nts who
were
diagno
sed with
AD on clinic day and
who
were followed
up with
anMMSE
one year later.
•All variables that were significantly correlated with
a decline in M
MSE
over one
year (p<0.05), as well as im
portant ind
ividua
l factors (a
ge and
gend
er), were retained
in th
e fin
al m
ultiv
ariable mod
el.
•The
coe
fficient of d
etermination, or total variance explaine
d by
the
regression
(R2value) was 27.2%
.
Intr
oduc
tion
Tabl
e 1:
Biv
aria
te re
gres
sion
ana
lysi
s
Met
hods
Ana
lysi
s
Popu
lation
: (mean
±SD
)
Bivariate an
d multivariate an
alyses:
•Gen
der, history of h
ypertension, and
BADL score remaine
d significant
(p<0.05) in
the fin
al m
ultiv
ariate m
odel.
Dis
cuss
ion
•Re
duced capacity to
com
plete activ
ities of d
aily living
as a pred
ictor of
greater cognitiv
e de
cline is both expe
cted
and
con
sisten
t with
other
results in
the literature. For every one
point decrease in BADL score
(range= 0‐60
), there is a predicted
average greater decline of 0.281
points
on th
e MMSE over on
e year.
•Self‐ratin
g of inde
pend
ence in
activities of daily living
(IADL1) w
asno
t foun
d to be significant. This suggests th
e im
portance of a
caregiver’s
presen
ce on the initial clinic day.
•Females lost a m
ean of 1.97 more MMSE points with
in a year than
their
male coun
terparts. Re
sults con
cerning gend
er as a pred
ictor vary. This
suggests th
e ne
ed fo
r continue
d research in
many po
pulatio
ns and
settings.
•Patie
nts with
a history of h
ypertension lost an average of 2.50 po
ints m
ore
on th
e MMSE with
in a year compared to th
ose with
out.
•It is kno
wn that hypertension increases the risk of d
evelop
ing de
men
tia
and, in
this study, the
presence of hypertension accelerates de
cline.
3
•Va
riables such as youn
g age, years of e
ducatio
n, and
family history of
demen
tia were no
t fou
nd to
be pred
ictiv
e. The
se have be
en cite
das
significant in
other papers througho
ut th
e literature.
•Alth
ough
find
ings from
this study will poten
tially im
prove clinicians’
abilitie
s to navigate their patie
nts’disease, th
is study also suggests th
at
pred
ictors m
ay vary be
tween po
pulatio
ns. A
dditional research is req
uired
in th
is field in order to
iden
tify pred
ictors of d
ecline and thepo
ssible
interactions between them
.
1) Carcaillon
L, Pérès K, PéréJ, Helmer C, O
rgogozo J, Dartig
ues J. Fast C
ognitiv
e Decline at
the Time of Dem
entia
Diagnosis:
A M
ajor Prognostic
Factor for Survival in
the Co
mmun
ity. D
emen
t Geriatr Cogn Disord 20
07;23:43
92) Soto M, A
ndrieu
S, C
antet C
, et a
l. Pred
ictiv
e Va
lue of Rap
idDecline in M
ini M
ental State Examination in Clinical Practice
for P
rognosis in
Alzhe
imer’s Disease. D
emen
t Geriatr Cogn Disord 20
08;26:10
9–11
6.3) Chaves M, Cam
ozzato A, K
ohler C
, Kaye J. Dem
entia
Outpa
tient Predictors of th
e Progression of Dem
entia
Severity
in
Brazilian
Patients with
Alzhe
imer’s Disease and
Vascular Dem
entia
. Internatio
nal Jou
rnal of A
lzhe
imer’s Disease
2010
;10
Refe
renc
es
Tabl
e 2:
Mul
tiple
regr
essi
on a
naly
sis
a. G
ende
r (patient): reference is fe
male. b. Marita
l status: referen
ce is single/divorced
/widow
edc.Family history of d
emen
tia: referen
ce is non
e d. Ethn
icity: referen
ce is Other
e. Chron
ic con
ditio
ns: referen
ce is 0‐4 chron
ic con
ditio
ns f. Falls per year: referen
ce is non
eg. W
orry of Falls: referen
ce is no worry of falls
Notes: p
< 0.2
Ana
lysi
s Variable
Estimate
±SE
95% CI for
Estimate
p value
Age
0.08
±0.07
(‐0.59
, 0.22)
0.25
Gen
der: M
ale
2.00
±0.99
(‐0.10
, 3.95)
0.05
Hypertension
‐2.50
±0.93
(‐4.36
, ‐0.63
)0.01
BADL
‐0.28
±0.08
(‐0.42
, ‐0.12
)0.00
Popu
lation
Total
Age
Female
Gen
der
Marital
status
Europe
anEthn
icity
MMSE‐
clinic day
MMSE‐
one year
Days b/w
MMSE’s
7275.3
±7.44
4848
5722.1
±3.69
20.2
±5.41
396
±44.8
Variables
Estimate
±SE
p value
Age (years)
‐0.03
±0.06
0.61
Gen
dera
‐male patie
nt1.10
±1.00
0.28
Marita
l statusb
Married
or Co
mmon
Law
1.27
±1.00
0.28
Form
al Edu
catio
n (years)
0.06
±0.19
0.76
Family history of d
emen
tiac
‐1.37
±0.98
0.17
Ethn
icity
d ‐Eu
rope
an0.39
±1.26
0.76
Alcoh
olic Beverages/w
eek
0.02
±0.19
0.92
5
Diabe
tes
0.70
±1.45
0.63
Heart Disease/Attack
‐0.33
±1.21
0.79
Hypertension
‐2.48
±0.98
0.01
Psychiatric Disorde
r0.06
±1.26
0.96
Chronic cond
ition
se‐5
+ ‐3.09
±0.88
0.00
Num
ber of fa
lls in
the past yearf
1 20.80
±1.15
2.63
±1.73
0.49
0.13
Worry of Fallsg
‐0.29
±1.26
0.82
FAQ
‐0.12
±0.06
0.06
2BA
DL
‐0.22
±0.08
0.00
5
QOL‐CG
0.04
±0.09
0.64
QOL‐PT
0.13
7 ±0.099
0.16
8
IADL1
0.16
±0.11
0.13
4
MEM
0.04
7 ±0.075
0.53
CES‐D
‐0.07
±0.04
0.14
Resu
lts
•A bivariate line
ar regression analysis was carried
out in
order to
exam
ine the association be
tween each poten
tial inde
pend
ent v
ariable and
the de
pend
ant v
ariable of change in M
MSE over on
e year.
•Ba
sed on
bi‐variable analysis, ind
epen
dent variables associated with
the de
pend
ent v
ariable with
a p<0.20 be
came cand
idates fo
r a
multiv
ariate line
ar regression mod
el.
¥ The Kaiser-‐Maier-‐Olkin measure was used to confirm sampling
adequacy; KMO = .73 (good; Hutcheson & Sofroniou, 1999).
¥ Item intercorrelaKons were sufficiently large for PAF using BartleQ’s
test of sphericity, χ2 (190) = 716.36, p < .001.
¥ Therefore, an iniKal PAF was run to obtain eigenvalues for each
component of the data. Seven com
ponents had eigenvalues over
Kaiser’s criterion of 1.
¥ However, a scree plot suggested a three-‐factor soluKon (F
igur
e 1).
¥ Parallel analysis confirmed that three factors should be retained for
PAF (Osborne, Costello, & Kello, 2008).
¥ A three-‐factor soluKon explained 44.81% of the variance in scores.
¥ Ta
ble
1 show
s the factor loadings a_er oblique (direct oblimin)
rotaKon. Factors represented
Basic
Res
pect
, Pos
i.ve
A1
tude
s, a
nd
Abse
nce
of N
ega.
ve A
1tu
des.
¥ Reverse-‐scored item
s were the only ones to load onto the
Abse
nce
of N
ega.
ve A
1tu
des factor. Item 1 did did not have a high loading
on any factor, and item
6 loaded on two factors.
Cont
act:
Depa
rtm
ent o
f Psy
chol
ogy,
St.
Thom
as M
ore
Colle
ge, U
nive
rsity
of S
aska
tche
wan
, S7N
0W
6, p
hunt
er@
stm
colle
ge.ca,
Tel
: (30
6) 9
66-‐2
175,
Fax
: (30
6) 9
66-‐8
904
EXPL
ORA
TORY
FAC
TOR
ANAL
YSIS
OF TH
E PE
RSONHO
OD
IN
DEM
ENTI
A QUES
TIONNAI
RE
PauleQe Hunter, Ph.D., St. Thom
as More College, University of Saskatchewan
¥ A sample of 109 long-‐term care staff com
pleted the 20-‐item
PDQ
as part of a larger baQery of measures.
¥ NegaKvely-‐phrased item
s were reverse-‐scored.
¥ Principal Axis Factoring (PAF) of the PDQ
was then com
pleted.
¥ PAF of the PDQ resulted in a three-‐factor soluKon.
¥ One factor was com
prised enKrely of reverse-‐scored item
s,
suggesKng that a method effect is contribuKng to the differenKal
funcKoning of posiKvely and negaKvely worded items.
¥ Although it may be helpful to rephrase the reverse-‐scored item
s,
it is also possible that these factors are theoreKcally meaningful.
¥ Method effects (DiStefano & Motl, 2006) can be beQer evaluated
with confirmatory factor analysis of com
peKng factor models, but
this requires a larger sample size.
¥ Given the small size of the current sample, these findings should
be considered prelim
inary.
MET
HOD
CONCL
USI
ONS
INTR
ODU
CTIO
N
RESU
LTS
KEY
REFE
RENCE
¥ The Personhood in Dem
enKa QuesKonnaire (PDQ
; Hunter et al.,
2013) assesses beliefs about the personhood of long-‐term care
residents with advanced demenKa.
¥ During the design of the PDQ, hom
ogeneity of item content was
emphasized in order to permit the calculaKon of a single “beliefs
about personhood” score.
¥ Nonetheless, beliefs about personhood are very likely mulK-‐
dimensional. For example, there are biological, psychological, and
social aspects of personhood (e.g., life, capaciKes, and rights,
respecKvely).
¥ Given that this is a new area of measurement, exploratory factor
analysis was employed to beQer understand the dimensionality of
the PDQ.
FIGURE
1: S
CREE
PLO
T
Hunt
er, P
.V., Hadjistavropoulos, T., Sm
ythe, W
., Malloy, D., Kaasalainen, S.,
& Williams, J. (2013). The Personhood in Dem
enKa QuesKonnaire (PDQ
): Establishing an associaKon between beliefs about personhood and health
providers’ approaches to person-‐centred care. Jo
urna
l of A
ging
Stu
dies
, 27
(3), 276–287.
TABL
E 1:
FAC
TOR
LOAD
INGS
Fund
ing
supp
ort f
or th
is re
sear
ch w
as p
rovide
d by
the
Sask
atch
ewan
He
alth
Res
earc
h Fo
unda
.on.
!
Factor
1 2
3 11. Residents with dem
enKa can conKnue to play an
important role in their fam
ilies
.629
10. Residents with dem
enKa want to socialize with the
people around them
.622
20. M
ost residents with dem
enKa feel the same range of
emoKons as I do
.537
19. Residents with dem
enKa have feelings about their
experiences
.518
13. Providing sKmulaKon such as m
usic is very helpful for a
resident w
ith end-‐stage dem
enKa
.492
12. Som
e residents with dem
enKa have had an im
portant
role in my life
.457
9. It is possible for residents with dem
enKa to connect with
each other in meaningful ways
.435
15. Residents with end-‐stage dem
enKa have some
awareness of w
hat is happening around them
.429
1. Residents with dem
enKa have a sense of purpose
18. (R) Residents with advanced demenKa are no longer
persons like you and me, because they do not think and
reason logically
.918
8. (R) Residents with advanced demenKa are no longer
true parKcipants in life; instead, they watch from
the
sidelines
.542
17. (R) The needs of residents who sKll have awareness of
their environm
ent should take priority over the needs of
those who have less awareness
.526
5. (R) Residents with end-‐stage dem
enKa can no longer
contribute to the world in any meaningful way
.514
14. (R) As dem
enKa advances, residents with dem
enKa no
longer experience basic feelings such as pleasure
.443
4. (R) Residents with very advanced dem
enKa are so low-‐
funcKoning that they are no longer persons
.410
16. (R) Residents with dem
enKa who whine a lot should be
isolated
.363
6. Residents with dem
enKa contribute to a sense of
community within our long-‐term care facility
.409
.562
7. All residents with dem
enKa should be treated with
respect
.555
2. Most residents with dem
enKa are sKll capable of making
some informed choices about their lives
.477
3. Residents with dem
enKa have a basic right to make any
choices they can about their care
.411
Psy
chom
etric
Eva
luat
ion
of th
e Te
lehe
alth
Sat
isfa
ctio
n S
cale
(TeS
S)
Deb
ra M
orga
n, J
ulie
Kos
teni
uk, N
orm
a S
tew
art,
Cha
ndim
a K
arun
anay
ake,
Rob
Bee
ver,
and
Meg
an O
’Con
nell
T
his
rese
arch
is p
art o
f a la
rger
on-
goin
g re
sear
ch p
rogr
am in
volv
ing
the
deve
lopm
ent
and
eval
uatio
n of
a R
ural
and
Rem
ote
Clin
ic
(RR
MC
) tha
t inc
orpo
rate
s te
lehe
alth
vid
eo-
conf
eren
cing
with
a o
ne-s
top
inte
rdis
cipl
inar
y as
sess
men
t in
a te
rtiar
y ca
re c
entre
.
The
aim
of t
he c
urre
nt s
tudy
is to
eva
luat
e th
e ps
ycho
met
ric p
rope
rties
of t
he T
eleh
ealth
S
atis
fact
ion
Sca
le (T
eSS
), ad
opte
d fo
r use
in
a m
emor
y cl
inic
ser
ving
a ru
ral a
nd re
mot
e po
pula
tion.
Met
hods
Obj
ectiv
es
Bac
kgro
und
Rur
al a
reas
are
dis
prop
ortio
nate
ly a
ffect
ed b
y th
e in
crea
sing
pre
vale
nce
of d
emen
tia
glob
ally
bec
ause
of t
he h
ighe
r pro
porti
on o
f ol
der a
dults
and
the
geog
raph
ic c
halle
nges
in
acce
ssin
g ne
cess
ary
serv
ices
. Rur
al-s
peci
fic
barr
iers
to d
emen
tia c
are
acce
ss in
clud
e tim
e, tr
avel
, cos
t, an
d la
ck o
f acc
ess
to
serv
ices
and
edu
catio
nal o
ppor
tuni
ties.
Tele
heal
th T
echn
olog
y ¥
Sat
isfa
ctio
n w
ith te
lem
edic
ine
is a
n im
porta
nt re
sear
ch fo
cus
beca
use
it is
a
criti
cal a
spec
t of q
ualit
y of
car
e an
d he
alth
ou
tcom
es.1
¥ Th
e m
ost f
requ
ently
mea
sure
d di
men
sion
s of
tele
heal
th s
atis
fact
ion
are
prof
essi
onal
-pa
tient
inte
ract
ion,
pat
ient
exp
erie
nce,
ov
eral
l sat
isfa
ctio
n, a
nd te
chni
cal a
spec
ts.2
¥ R
evie
ws
of p
atie
nt s
atis
fact
ion
stud
ies
have
iden
tifie
d si
gnifi
cant
met
hodo
logi
cal
wea
knes
ses
in m
uch
of th
e re
sear
ch:
smal
l sam
ple
size
s, c
onve
nien
ce s
ampl
es,
abse
nce
of a
def
initi
on o
f sat
isfa
ctio
n, a
nd
lack
of r
elia
ble
and
valid
tool
s.1-
3
¥ O
f the
few
stu
dies
that
hav
e re
porte
d on
pa
tient
sat
isfa
ctio
n w
ith te
lehe
alth
in
prog
ram
s ai
med
at i
ndiv
idua
ls w
ith m
emor
y pr
oble
ms,
non
e ha
ve re
porte
d on
the
psyc
hom
etric
pro
perti
es o
f the
use
r sa
tisfa
ctio
n sc
ales
em
ploy
ed.
Ref
eren
ces
1. W
hitte
n P,
Lov
e B
. Pat
ient
and
pro
vide
r sat
isfa
ctio
n w
ith th
e us
e of
tele
med
icin
e: o
verv
iew
and
ratio
nale
for c
autio
us e
nthu
sias
m. J
ourn
al o
f Pos
tgra
duat
e M
edic
ine
2005
; 51:
294
-300
.
2. W
illia
ms
T, M
ay C
, Esm
ail A
. Tel
emed
icin
e Jo
urna
l and
e-H
ealth
. Dec
embe
r 200
1, 7
(4):
293-
316.
3. M
air F
, Whi
tten
P. L
imita
tions
of p
atie
nt s
atis
fact
ion
stud
ies
in te
lehe
alth
care
: a s
yste
mat
ic re
view
of t
he li
tera
ture
. Brit
ish
Med
ical
Jou
rnal
200
0; 3
20:1
517.
4. M
orga
n D
, Cro
ssle
y M
, Kirk
A.,
McB
ain
L, S
tew
art N
, D’A
rcy
C, F
orbe
s D
, Har
der S
, Dal
Bel
lo-H
aas
V, B
asra
nJ. E
valu
atio
n of
tele
heal
th fo
r pre
-clin
ic a
sses
smen
t and
follo
w-u
p in
an
inte
rpro
fess
iona
l Rur
al a
nd R
emot
e M
emor
y C
linic
. Jou
rnal
of A
pplie
d G
eron
tolo
gy 2
011;
30(
3): 3
04-3
31.
5. F
irst N
atio
ns &
Inui
t Hea
lth B
ranc
h. N
atio
nal F
irst N
atio
ns T
eleh
ealth
Res
earc
h P
roje
ct –
Fin
al R
esul
ts R
epor
t. 20
01; O
ttaw
a.
6. M
iller
G, L
eves
que
K. T
eleh
ealth
pro
vide
s ef
fect
ive
pedi
atric
sur
gery
car
e to
rem
ote
loca
tions
. Jou
rnal
of P
edia
tric
Sur
gery
200
2; 3
7:75
2-4
7. L
inas
si G
, Sha
n R
. Use
r sat
isfa
ctio
n w
ith a
tele
med
icin
e am
pute
e cl
inic
in S
aska
tche
wan
. Jou
rnal
of T
elem
edic
ine
and
Tele
care
200
5;11
:414
-18
¥ A
sing
le c
ase
desi
gn w
as u
sed
to e
valu
ate
tele
heal
th (T
H):
¥ pa
tient
s ra
ndom
ly a
ssig
ned
to e
ither
TH
or i
n-pe
rson
(IP
) ap
poin
tmen
t for
thei
r firs
t fol
low
-up
asse
ssm
ent
¥ al
tern
ated
bet
wee
n TH
and
IP fo
r 6-w
eek,
12-
wee
k, a
nd 6
-m
onth
follo
w-u
ps4
¥ Im
med
iate
ly fo
llow
ing
pre-
clin
ic a
sses
smen
t and
eac
h fo
llow
-up
TH a
ppoi
ntm
ent,
patie
nts
and
care
give
rs c
ompl
eted
the
TeS
S.
¥ Th
e ps
ycho
met
ric e
valu
atio
n re
porte
d he
re u
sed
data
from
the
pre-
clin
ic a
sses
smen
t to
cont
rol f
or p
oten
tial d
iffer
ence
s in
sa
tisfa
ctio
n du
e to
fam
iliar
ity w
ith te
lehe
alth
ove
r tim
e.
¥ W
ith d
ata
from
223
pat
ient
s, fa
ctor
ana
lysi
s w
as c
ondu
cted
us
ing
prin
cipa
l com
pone
nts
anal
ysis
(PC
A) e
xtra
ctio
n m
etho
d w
ith v
arim
ax ro
tatio
n on
the
10-it
em T
eSS
, 5-it
em te
lehe
alth
sy
stem
sat
isfa
ctio
n su
bsca
le, 5
-item
team
sat
isfa
ctio
n su
bsca
le.
Tele
heal
th S
atis
fact
ion
Scal
e (T
eSS)
Sat
isfa
ctio
n w
ith te
lehe
alth
was
ass
esse
d w
ith a
12-
item
sca
le u
sed
in
prev
ious
TH
stu
dies
in S
aska
tche
wan
, inc
ludi
ng F
irst N
atio
ns c
omm
uniti
es,5
pedi
atric
sur
gery
clin
ic,6
and
ampu
tee
clin
ic.7
“Spe
cial
ist”
was
repl
aced
with
“M
emor
y C
linic
Tea
m.”
T
heTe
SS
was
des
igne
d to
ass
ess
patie
nts’
sat
isfa
ctio
n an
d co
mfo
rt w
ith
aspe
cts
of th
e te
lehe
alth
sys
tem
, eas
e of
acc
essi
ng th
e te
lehe
alth
site
, and
sa
tisfa
ctio
n w
ith th
e M
emor
y C
linic
team
and
tele
heal
th s
taff.
The
12
item
s w
ere
rate
d on
a 4
-poi
nt L
iker
t sca
le (1
= p
oor,
2 =
fair,
3 =
goo
d, 4
= e
xcel
lent
) with
hi
gher
sco
res
indi
catin
g hi
gher
sat
isfa
ctio
n. T
wo
item
s w
ere
excl
uded
from
fact
or
anal
ysis
: sat
isfa
ctio
n w
ith le
ngth
of t
ime
to g
et a
ppoi
ntm
ent a
nd o
vera
ll tre
atm
ent
expe
rienc
e at
usi
ng T
eleh
ealth
. Exa
min
atio
n of
the
scal
e ite
ms
sugg
este
d th
at
two
dim
ensi
ons
of s
atis
fact
ion
wer
e be
ing
eval
uate
d:
¥ sy
stem
fact
ors,
e.g
., vo
ice
and
visu
al q
ualit
y ¥
team
fact
ors,
e.g
., sk
illfu
lnes
s an
d re
spec
t of p
rivac
y
Res
ults
and
Dis
cuss
ion
Tabl
e 1
Tabl
e 2
Tabl
e 4
Tabl
e 3
Char
acte
ristic
s of R
ural
and
Rem
ote
Mem
ory
Clin
ic p
atie
nts (
n=22
3)
N
%
G
ende
r
Mal
e 12
8 57
.4
Fe
mal
e 95
42
.6
Age
a (Mea
n, ra
nge,
SD
) 71
.5 (4
1-91
, 11.
0)
<
65
52
23.3
65
-74
46
20.6
75
-84
81
36.3
>
85
21
9.4
M
issin
g 23
10
.3
Dia
gnos
is
Alz
heim
er’s
dise
ase
85
38.1
Mild
cog
nitiv
e im
pairm
ent
25
11.2
Rel
ated
Dem
entia
b 49
22
.0
D
emen
tia n
ot d
iagn
osed
40
17
.9
M
issin
g 24
10
.8
Dist
ance
(km
) to
tele
heal
th si
te (M
ean,
rang
e, S
D)
33.0
(1-1
50, 4
2.1)
Dist
ance
(km
) to
Mem
ory
Clin
ic si
te (M
ean,
rang
e, S
D)
260.
9 (1
03-5
95, 1
02.3
)
Dist
ance
one
-way
(km
) sav
ed b
y te
lehe
alth
(Mea
n, ra
nge,
SD
) 22
7.9
(34-
594,
106
.5)
a At C
linic
Day
b V
ascu
lar d
emen
tia, D
emen
tia w
ith le
wy
bodi
es, F
ront
otem
pora
l dem
entia
, Dem
entia
mul
tiple
etio
logi
es,
Vas
cula
r cog
nitiv
e im
pairm
ent,
Park
inso
n’s D
iseas
e, H
D, N
PH, D
MC,
cog
nitiv
e im
pairm
ent n
ot o
ther
wise
sp
ecifi
ed
Tele
heal
th S
atis
fact
ion
P
atie
nts
and
care
give
rs e
xpre
ssed
a h
igh
degr
ee
of s
atis
fact
ion
with
thei
r tel
ehea
lth p
recl
inic
as
sess
men
t (re
sults
not
sho
wn)
. The
maj
ority
of
scor
es o
n th
e sc
ale
item
s av
erag
ed h
ighe
r tha
n 3.
5,
indi
catin
g a
ratin
g of
‘goo
d’ to
‘exc
elle
nt’ s
atis
fact
ion.
Fa
ctor
Ana
lysi
s
As
dem
onst
rate
d in
Tab
les
2 th
roug
h 4,
fact
or
load
ings
for a
ll ite
ms
in e
ach
of th
e th
ree
scal
es
wer
e gr
eate
r tha
n 0.
40 (r
ange
0.5
4 –
0.84
), in
dica
ting
that
the
item
s w
ithin
eac
h of
the
thre
e sc
ales
load
ed o
nto
only
one
fact
or p
er s
cale
and
fa
ctor
stru
ctur
es w
ere
stro
ng fo
r eac
h sc
ale.
The
item
s w
ithin
eac
h of
the
thre
e sc
ales
de
mon
stra
ted
high
inte
rnal
con
sist
ency
relia
bilit
y, a
s in
dica
ted
by th
e C
ronb
ach’
s al
pha
scor
es fo
r the
10-
item
TeS
S (0
.90)
, 5-it
em te
lehe
alth
sys
tem
sa
tisfa
ctio
n su
bsca
le (0
.78)
, and
5-it
em te
am
satis
fact
ion
subs
cale
(0.8
6).
T
he to
tal v
aria
nce
expl
aine
d by
the
5-ite
m te
am
satis
fact
ion
fact
or (6
3.9%
) is
high
er th
an th
e to
tal
varia
nce
expl
aine
d by
the
5-ite
m te
lehe
alth
sys
tem
fa
ctor
(54.
1%) a
nd th
e 10
-item
tele
heal
th s
atis
fact
ion
fact
or (5
2.1%
).
DIS
CU
SSIO
N
T
he c
onst
ruct
val
idity
and
relia
bilit
y of
the
10-it
em
TeS
S a
nd th
e tw
o su
bsca
les
are
supp
orte
d by
the
stud
y fin
ding
s. F
acto
r ana
lysi
s an
d C
ronb
ach’
s al
pha
conf
irmed
that
the
com
posi
te “
syst
em” a
nd “t
eam
” su
bsca
les
mea
sure
d pa
rticu
lar d
imen
sion
s of
sa
tisfa
ctio
n w
ith te
lehe
alth
.
The
resu
lts o
f the
cur
rent
stu
dy s
uppo
rt th
e us
e of
all t
hree
sca
les
in fu
ture
stu
dies
, dep
endi
ng o
n th
e co
ntex
t of t
he s
tudy
or i
nter
vent
ion.
!"!
Facto
r ana
lysis
of re
duce
d 10-
item
Teleh
ealth
Satis
factio
n Sca
le (TeS
S) [n
=223
] Ite
m no
. St
ateme
nt Fa
ctor 1
10
Ho
w we
ll you
r priv
acy w
as re
spec
ted
0.79
9 Th
e cou
rtesy
, res
pect,
sens
itivit
y, an
d frie
ndlin
ess o
f the
Mem
ory C
linic
team
0.78
8 Th
e tho
roug
hnes
s, ca
refuln
ess a
nd sk
illfu
lness
of th
e Mem
ory C
linic
team
0.77
7 Th
e exp
lanati
on of
your
trea
tmen
t by t
he M
emor
y Clin
ic tea
m 0.7
6 11
Ho
w we
ll the
staff
answ
ered y
our q
uesti
ons a
bout
the eq
uipme
nt 0.7
5 2
The v
isual
quali
ty of
the e
quipm
ent
0.72
6 Th
e len
gth of
time w
ith th
e Mem
ory C
linic
team
0.71
1 Th
e voic
e qua
lity o
f the
equip
ment
0.70
3 Yo
ur pe
rsona
l com
fort
in us
ing th
e Tele
healt
h sys
tem
0.68
5 Th
e eas
e of g
etting
to th
e tele
healt
h dep
artme
nt 0.5
4 %
Vari
ance
Ei
genv
alue
Cron
bach
’s !
Sum
Mea
n (ran
ge, S
D)
54.09
2.7
0.9
0 35
.5 (2
8-40
, 3.75
)
!
Factor
analy
sis of
5-item
Teleh
ealth
System
Satisf
action
Subsc
ale of
10-ite
m Te
leheal
th Sat
isfactio
n Scal
e (n=
223)
Item
no. S
tateme
nt Fac
tor 1
2 Th
e visu
al qual
ity of
the e
quipm
ent
0.82
1 Th
e voic
e qual
ity of
the e
quipm
ent
0.79
11 Ho
w well
the sta
ff answ
ered y
our qu
estion
s abou
t the e
quipm
ent
0.74
3 Yo
ur per
sonal c
omfor
t in us
ing th
e Tele
health
syste
m 0.7
2 5
The e
ase of
gettin
g to t
he tele
health
depar
tment
0.5
9 %
Varia
nce
Eigenv
alue
Cronba
ch’s !
Su
m Me
an (ra
nge, S
D)
54.1
2.70
0.78
17.6 (
13-20,
2.0)
!
!"!
Factor
analy
sis of
5-item
Team
Satisf
action
Subsc
ale of
10-ite
m Te
leheal
th Sat
isfactio
n Scal
e (n=2
23)
Item
no. S
tateme
nt Fac
tor 1
8 Th
e thoro
ughnes
s, care
fulnes
s and
skillfu
lness
of the
Mem
ory Cl
inic te
am
0.84
9 Th
e cour
tesy, r
espect
, sensi
tivity
, and f
riendl
iness
of the
Mem
ory Cl
inic te
am
0.83
7 Th
e expl
anatio
n of y
our tre
atment
by th
e Mem
ory Cl
inic te
am
0.80
10 Ho
w well
your p
rivacy
was re
specte
d 0.7
9 6
The le
ngth o
f time
with
the M
emory
Clini
c team
0.7
4 %
Varia
nce
Eigenv
alue
Cronba
ch’s !
Su
m Me
an (ra
nge, S
D)
63.9
3.19
0.86
17.9 (
12-20,
2.0)
!
UN
IV
ER
SI
TY
OF
SA
SKA
TC
HE
WA
N
AP
OE
gen
e, e
nvir
onm
enta
l ris
k fa
ctor
s an
d th
eir
inte
ract
ions
in d
emen
tia
amon
g se
nior
s X
iang
fei M
eng
& C
arl D
’Arc
y
2 B
ackg
roun
d D
emen
tia
-Wor
ldw
ide
² P
reva
lenc
e. 2
4.2
mill
ion
peop
le s
uffe
ring
from
dem
enti
a
² I
ncid
ence
. 4.6
mill
ion
new
dem
enti
a ca
ses
are
diag
nose
d ev
ery
year
.
² E
tiol
ogy
of d
emen
tia
² H
ypot
hesi
s -
A c
ombi
nati
on o
f in
tera
ctin
g ge
neti
c, s
ocia
l en
viro
nmen
tal,
and
biol
ogic
al e
lem
ents
, and
ther
e is
an
emer
ging
em
phas
is o
n jo
int e
ffec
t of
thes
e fa
ctor
s.
² R
isk
fact
ors
- D
iabe
tes,
apo
lipop
rote
in E
gen
e (A
poE
) ε4
alle
le,
smok
ing,
and
dep
ress
io
² P
rote
ctiv
e fa
ctor
s -
Cog
nitiv
e en
gage
men
t and
phy
sica
l act
ivit
y.
Com
orbi
dity
² D
epre
ssio
n. D
emen
tia
pati
ents
are
like
ly to
hav
e de
pres
sive
be
havi
ors,
and
thos
e w
ith
depr
essi
on w
ill h
ave
an in
crea
sed
risk
of
dem
enti
a an
d a
high
er p
roba
bilit
y of
ear
lier
deat
h.
² D
iabe
tes.
Dep
ress
ion
is a
ssoc
iate
d w
ith
a 60
% in
crea
sed
risk
of
type
2 d
iabe
tes,
whe
reas
type
2 d
iabe
tes
is o
nly
mod
estl
y as
soci
ated
w
ith
the
onse
t of
depr
essi
on.
² C
ogni
tivel
y im
pair
ed n
ot d
emen
ted.
Peo
ple
who
are
cog
nitiv
ely
impa
ired
not
dem
ente
d (C
IND
) ar
e at
a g
reat
ris
k of
hav
ing
dem
enti
a.
Res
earc
h si
tuat
ion
² T
rend
. A g
row
ing
inte
rest
in c
omor
bidi
ty b
etw
een
depr
essi
on a
nd
dem
enti
a ha
s be
en fo
und.
² G
ap. T
here
is s
till
a gr
eat n
eed
for
rese
arch
that
incl
udes
a li
fe
cour
se a
ppro
ach
to th
e co
mor
bidi
ty b
etw
een
depr
essi
on a
nd
dem
enti
a.
1 K
ey P
oint
s/C
oncl
usio
ns
ü S
enio
rs w
ith
Apo
E ε
4 al
lele
s or
ε3/ε4
gen
otyp
es w
ere
at r
isk
of
dem
enti
a.
ü T
hose
wit
h m
ore
educ
atio
n ha
d a
redu
ced
risk
of
dem
enti
a an
d co
gnit
ivel
y im
pair
ed n
ot d
emen
ted
(CIN
D).
Pre
viou
s he
alth
co
ndit
ions
(e.
g. s
trok
e, d
epre
ssio
n, e
tc.)
incr
ease
d th
e ri
sk o
f de
men
tia
and
CIN
D. R
egul
ar e
xerc
ise
decr
ease
d th
e ri
sk o
f C
IND
. ü S
enio
rs w
ith
Apo
E ε
3/ε4
gen
otyp
e an
d pr
e-ex
isti
ng d
epre
ssio
n ha
d a
7.97
-fol
d gr
eate
r ri
sk o
f in
cide
nt d
emen
tia
afte
r ad
just
ing
for
othe
r si
gnif
ican
t ris
k fa
ctor
s.
ü F
utur
e st
udie
s sh
ould
be
enco
urag
ed to
rep
licat
e th
ese
find
ings
in
oth
er p
opul
atio
n se
ttin
gs. S
enio
rs w
ith
depr
essi
on a
nd A
poE
ε3
/ε4
geno
type
are
at i
ncre
ased
ris
k of
dem
enti
a an
d w
arra
nted
m
ore
atte
ntio
n.
5 R
esul
ts
Fig
ure
1 S
umm
ary
of a
naly
ses
and
find
ings
3 O
bjec
tives
Usi
ng a
long
itud
inal
dat
aset
we
aim
ed to
: ² 1
) ex
amin
e ro
les
of A
poE
gen
e al
lele
s an
d ge
noty
pes
in d
emen
tia
and
CIN
D;
² 2
) ex
plor
e ro
les
of e
nvir
onm
enta
l ris
k fa
ctor
s in
dem
enti
a an
d C
IND
in
clud
ing
pre-
exis
ting
hea
lth c
ondi
tion
s (i
.e. d
epre
ssio
n, d
iabe
tes,
etc
.),
fam
ily h
isto
ry o
f di
seas
es, a
nd li
fest
yle
fact
ors;
and
, ² 3
) ex
plor
e in
tera
ctio
ns b
etw
een
gene
tic
and
envi
ronm
enta
l fac
tors
in
dem
enti
a an
d C
IND
.
4 M
etho
ds
Dat
a
² S
ourc
e. C
anad
ian
Stud
y of
Hea
lth a
nd A
ging
(C
SHA
).
² C
hara
cter
isti
cs.
o
A n
atio
nal l
ongi
tudi
nal s
tudy
o
N=
10,2
63 p
eopl
e ag
ed 6
5+
o
Ass
esse
d at
5-y
ear
inte
rval
s: b
egin
ning
at 1
991
(Wav
e I)
, 199
6 (W
ave
II),
an
d a
fina
l tim
e at
200
1 (W
ave
III)
. o
Use
d a
two-
stag
e sc
reen
ing-
clin
ical
dia
gnos
tic
asse
ssm
ent p
roce
dure
. St
udy
coho
rt
² P
arti
cipa
nts
had
to:
² 1
) ha
ve A
poE
info
rmat
ion
avai
labl
e;
² 2
) be
of
Cau
casi
an o
rigi
n (9
7% o
f th
ose
wit
h A
poE
info
rmat
ion
self-
iden
tifi
ed th
emse
lves
as
Cau
casi
ans)
; ² 3
) ha
ve a
dia
gnos
is o
f co
gnit
ive
stat
us a
t all
wav
es o
f C
SHA
or
befo
re d
eath
.
Ack
now
ledg
emen
ts
² C
IHR
-Pub
lic H
ealth
and
the
Agr
icul
tura
l Rur
al E
cosy
stem
(PH
AR
E)
prog
ram
² S
aska
tche
wan
Hea
lth R
esea
rch
Foun
datio
n (S
HR
F)
² C
FI L
eade
rs O
ppor
tuni
ty F
ound
atio
n A
war
d
Mea
sure
s ²
Gen
etic
fact
ors
- A
poE
alle
les
and
geno
type
s.
²
Dia
gnos
is o
f de
men
tia
- N
euro
psyc
holo
gica
l tes
ting
and
clin
ical
wor
kup
follo
win
g th
e D
iagn
osti
c an
d St
atis
tica
l Man
ual o
f M
enta
l Dis
orde
rs, T
hird
E
diti
on, R
evis
ed (
DSM
-III
-R)
crit
eria
.
²
Env
iron
men
tal r
isk
fact
ors
o
Soci
o-de
mog
raph
ic fa
ctor
s o
Self-
repo
rted
pre
viou
s he
alth
sta
tus
o
Fam
ily h
isto
ry o
f di
seas
es
o
Lif
esty
le fa
ctor
s
Ana
lyse
s ²
Com
pari
son
test
s
²
Gen
etic
ass
ocia
tion
test
s ²
Mul
tivar
iate
ana
lyse
s
Iden
+fy po
ten+
al env
ironm
enta
l risk
factor
s bo
th fo
r dem
en+a
and
cog
ni+v
ely im
paire
d no
t dem
ente
d (C
IND)
Iden
+fy po
ten+
al gen
e+c ris
k fa
ctor
s (Ap
oE
alleles a
nd gen
otyp
es)
Cogn
i+ve
stat
us dur
ing th
e 10
-‐ye
ar st
udy pe
riod
Mul+v
ariate
ana
lyse
s tak
ing ge
ne+c
, en
viro
nmen
tal r
isk fa
ctor
s, and
their
inte
rac+
ons i
nto ac
coun
t
Risk factors for those with CIND at any
point during the study period
¥ Lo
w edu
ca+o
n ¥
Having
dep
ression
¥ Not
being
a re
gular e
xercise
r
Exam
ine ro
les o
f ApoE ε3/ε4 genotype and
po
ten+
al env
ironm
enta
l risk
factor
s in
dem
en+a
Risk factors for those with demen?a at any point during the
study period
¥ Lo
w edu
ca+o
n ¥
Having
stro
ke
¥ Ha
ving
oth
er psy
chiatric dise
ases
¥
Having
Apo
E ε4
alle
les
Risk factors for those with demen?a at any
point during the study period
¥ Lo
w edu
ca+o
n ¥
Having
dep
ression
¥ Ha
ving
stok
e ¥
Not
being
a re
gular e
xercise
r ¥
Having
Apo
E ε3
/ε4 ge
noty
pe
Exam
ine ro
les o
f ApoE ε3/ε4 genotype and
po
ten+
al env
ironm
enta
l risk
factor
s in incide
nt
dem
en+a
Incident dem
en*a
dur
ing th
e 10
-‐yea
r stu
dy per
iod or
be
fore
dea
th
Risk factors for those developed incide
nt
demen
)a during study period
¥ Lo
w edu
ca+o
n ¥
Having
dep
ression
¥ Ha
ving
stok
e ¥
Not
being
a re
gular e
xercise
r ¥
Having
Apo
E ε3
/ε4 ge
noty
pe
Thos
e with
ApoE ε3/ε4 genotype
and de
pres
sion ha
d a 7.97
-‐fold
grea
ter r
isk of inc
iden
t dem
en+a
co
mpa
red to
thos
e with
Apo
E ε3
/ε3
gen
otyp
e an
d no
dep
ression.
Exam
ine ro
les o
f ApoE ε3/ε4 genotype
and po
ten+
al env
ironm
enta
l risk
factor
s in in
cide
nt A
D an
d Va
D
Incide
nt A
D an
d Va
D du
ring
the 10
-‐yea
r stu
dy per
iod or
be
fore
dea
th
Risk factors for those developed incident
AD and VaD during study period
¥ Lo
w edu
ca+o
n (A
D & V
aD)
¥ Ha
ving
dep
ression (A
D & V
aD)
¥ Not
being
a re
gular e
xercise
r (AD
) ¥
Having
stro
ke (V
aD)
Thos
e with
ApoE ε3/ε4 genotype
and de
pres
sion ha
d a 5.50
-‐fold
grea
ter r
isk of inc
iden
t AD
com
pare
d to
thos
e with
Apo
E ε3
/ε3
gen
otyp
e an
d no
dep
ression.
Environmental risk factors for
demen?a
¥ Lo
w edu
ca+o
n ¥
Having
stro
ke
¥ Ha
ving
Par
kins
on’s dise
ase
¥ Ha
ving
diabe
tes
¥ Ha
ving
dep
ression
¥ Ha
ving
oth
er psy
chiatric dise
ases
¥
Having
a fa
mily
hist
ory of
men
tal
reta
rda+
on
¥ Not
being
a re
gular e
xercise
r ¥
Not
being
a re
gular d
rinke
r ¥
Not
being
a re
gular s
hellfi
sh eat
er
Gene?c risk factors for demen?a
¥ Ap
oE ε4 alleles
¥ Ap
oE ε3/ε4
gen
otyp
e
¥ Ap
oE ε4 ca
rriers
Univa
riate
ana
lyse
s
Environmental risk factors for CIND
¥ Lo
w edu
ca+o
n ¥
Having
stro
ke
¥ Ha
ving
Par
kins
on’s dise
ase
¥ Ha
ving
diabe
tes
¥ Ha
ving
hyp
erte
nsion
¥ Ha
ving
dep
ression
¥ Ha
ving
oth
er psy
chiatric dise
ases
¥
Not
being
a re
gular d
rinke
r ¥
Not
being
a re
gular e
xercise
r ¥
Not
being
a re
gular s
hellfi
sh eat
er
Cogn
i+ve
stat
us dur
ing th
e 10
-‐ye
ar st
udy pe
riod
Early
refe
rral
for s
uppo
rt o
f dem
entia
car
egiv
ers:
Ea
rly re
ferr
al fo
r sup
port
of d
emen
tia c
areg
iver
s:
Eval
uatio
n of
the
Firs
t Lin
k de
mon
stra
tion
proj
ect
Eval
uatio
n of
the
Firs
t Lin
k de
mon
stra
tion
proj
ect
Car
rie M
cAin
ey1 ,
Dav
id H
arve
y2 , Lo
retta
M. H
illier
3 , Pa
ul S
tole
e4 , M
ary
Sch
ultz
5 , Jo
anne
Mic
hael
6
1 Dep
artm
ent o
f Psy
chia
try a
nd B
ehav
iour
al N
euro
scie
nces
, McM
aste
rUni
vers
ity &
St J
osep
h’s
Hea
lthca
re H
amilt
on; 2 A
lzhe
imer
Soc
iety
of O
ntar
io;
3 Law
son
Hea
lth In
stitu
te, S
t Jos
eph’
s H
ealth
Cen
tre L
ondo
n; 4 H
ealth
Stu
dies
& G
eron
tolo
gy, U
nive
rsity
of W
ater
loo;
5 Alz
heim
er S
ocie
ty o
f Can
ada;
6 A
lzhe
imer
Soc
iety
of S
aska
tche
wan
Bac
kgro
und
•Sig
nific
ant c
are
gaps
for p
erso
ns w
ith d
emen
tia li
ving
in th
e co
mm
unity
and
thei
r car
egiv
ers.
•Des
pite
the
avai
labi
lity
of e
duca
tion
and
supp
ort s
ervi
ces,
few
indi
vidu
als
with
dem
entia
or t
heir
care
give
rs
acce
ss h
elp
early
in th
e co
urse
of t
he d
isea
se.
Firs
t Lin
k•I
nnov
ativ
e re
ferr
al p
rogr
am d
evel
oped
and
impl
emen
ted
by A
lzhe
imer
Soc
iety
of O
ntar
io.
•Lin
ks in
divi
dual
s di
agno
sed
with
Alz
heim
er’s
or a
rela
ted
dem
entia
and
thei
r fam
ilies
to a
com
mun
ity o
f le
arni
ng, s
ervi
ces
and
supp
ort.
•Util
izes
the
loca
l Alz
heim
er S
ocie
ty a
nd o
ther
com
mun
ity p
artn
ers.
•Goa
l: to
link
indi
vidu
als
and
thei
r fam
ily m
embe
rs a
s ea
rly a
s po
ssib
lein
the
dise
ase
proc
ess.
Stud
y O
bjec
tive
•To
mea
sure
the
impa
ct o
f Firs
t Lin
k®in
Ont
ario
(4 s
ites)
and
Sas
katc
hew
an (2
site
s) o
n:~
Con
nect
ing
fam
ily c
areg
iver
s to
the
Alz
heim
er S
ocie
ty a
nd o
ther
ser
vice
s ea
rlier
in th
e di
seas
e pr
oces
s~
Kno
wle
dge
& a
war
enes
s am
ong
prof
essi
onal
s~
Kno
wle
dge
& a
war
enes
s am
ong
fam
ily c
areg
iver
s~
Car
egiv
er c
opin
g an
d bu
rnou
t
Ref
erra
ls to
Firs
t Lin
k:K
now
ledg
e &
aw
aren
ess
amon
g fa
mily
car
egiv
ers:
~
A s
igni
fican
tly h
ighe
r num
ber o
f ind
ivid
uals
wer
e se
lf-re
ferr
ed (6
5%)
vs.
~ M
ore
know
ledg
eabl
e ab
out A
DR
D a
nd th
e co
mm
unity
reso
urce
s av
aila
ble
to
refe
rred
via
Firs
t Lin
k (2
4%),
p=.0
01.
them
.~T
hose
refe
rred
via
Firs
t Lin
k w
ere
refe
rred
soo
ner a
fter d
iagn
osis
of A
DR
D th
an
~ M
ore
conf
iden
t in
taki
ng o
n th
e ca
regi
ver r
ole.
thos
e w
ho w
ere
self-
refe
rred
(6 v
s. 1
7 m
onth
s, re
spec
tivel
y).
~ In
crea
sed
acce
ss to
info
rmat
ion
and
supp
ort f
or c
areg
iver
s ,e
spec
ially
in
~Tho
se re
ferr
ed v
ia F
irst L
ink
wer
e on
ave
rage
old
er (6
7yrs
) tha
n th
ose
self-
refe
rred
rura
l and
rem
ote
area
s of
the
prov
ince
.(5
9 yr
s), p
= .0
01.
~ In
crea
sed
acce
ss to
sys
tem
nav
igat
ion
supp
ort.
Kno
wle
dge
& a
war
enes
s ra
isin
g w
ith H
ealth
Pro
fess
iona
ls:
Car
egiv
er c
opin
g an
d bu
rnou
t:~F
irst L
ink
Coo
rdin
ator
s pr
ovid
ed/ c
oord
inat
ed 4
44 h
ours
of d
emen
tia-r
elat
ed e
duca
tion
~
Alz
heim
er S
ocie
ty s
ervi
ces
and
supp
orts
impr
oved
car
egiv
er’s
abi
lity
to c
ope
with
a to
tal o
f 1,2
50 p
eopl
e in
atte
ndan
ce, i
n ad
ditio
n to
102
vol
unte
ers
hour
s to
this
end
.
a
nd m
anag
e as
the
dise
ase
prog
ress
ed.
~H
ealth
Pro
fess
iona
ls w
ere
mor
e aw
are
of A
lzhe
imer
Soc
iety
ser
vice
s an
d su
ppor
ts
~ F
irst L
ink
prov
ided
mor
ale
supp
ort,
prac
tical
stra
tegi
es, a
ssis
tanc
e w
ithdu
e to
Firs
t Lin
k pr
omot
iona
l act
iviti
es.
de
cisi
on-m
akin
g, a
nd re
duce
d ca
regi
ver s
tress
.
Obj
ectiv
es a
nd S
tudy
Proj
ect F
indi
ngs
Met
hods
Fund
ing
to s
uppo
rt F
irst
Lin
k ev
alua
tion
rec
eive
d fr
om: A
lzhe
imer
Soc
iety
of
Ont
ario
/ O
ntar
io M
inis
try
of H
ealt
h an
d Lo
ng-t
erm
Car
e an
d A
lzhe
imer
Soc
iety
of
Can
ada
Res
earc
h Pr
ogra
m
Con
clus
ions
Ref
eren
ces
Des
ign
~ M
ixed
met
hod,
pro
spec
tive
coho
rt de
sign
Dat
a tr
acki
ng~
Ref
erra
ls~
Act
iviti
es u
nder
take
n by
Firs
t Lin
k®C
oord
inat
ors
Surv
eys
~ C
areg
iver
s~
Prim
ary
care
pro
vide
rs
Inte
rvie
ws
& fo
cus
grou
ps~
Pro
ject
lead
ers
~ P
erso
ns w
ith d
emen
tia &
fam
ily c
areg
iver
s~
Key
sta
keho
lder
s (e
.g.,
Alz
heim
er C
hapt
ers,
phy
sici
ans,
co
mm
unity
pro
vide
rs, F
irst L
ink®
Coo
rdin
ator
s
Th
e ev
alua
tion
has
dem
onst
rate
d th
at th
e ob
ject
ives
of F
irst L
ink
have
larg
ely
been
ach
ieve
d.
Th
e ne
w m
odel
of s
ervi
ce a
cces
s as
faci
litat
ed b
y Fi
rst L
ink
repr
esen
ts a
maj
or m
ove
tow
ards
filli
ng d
emen
tia c
are
ga
ps th
at a
re w
ell d
ocum
ente
d w
ithin
the
liter
atur
e (P
ratt
et a
l., 2
006)
.
Furth
er d
evel
opm
ent,
impl
emen
tatio
n an
d ex
pans
ion
of F
irst L
ink
have
the
pote
ntia
l to
sign
ifica
ntly
impa
ct e
arly
de
tect
ion
and
qual
ity o
f dem
entia
car
e.
McA
iney
, C.A
., H
arve
y, D
. & S
chul
z, M
. (20
08).
Firs
t Lin
k: S
treng
then
ing
Prim
ary
Car
e P
artn
ersh
ips
for D
emen
tia S
uppo
rt. C
anad
ian
Jour
nal o
f Com
mun
ity M
enta
l Hea
lth,
27(2
), 11
7-12
7.P
ratt,
R.,
Cla
re, L
., &
Kirc
hner
, V. (
2006
). ‘It
’s li
ke a
revo
lvin
g do
or s
yndr
ome’
: P
rofe
ssio
nal p
ersp
ectiv
es o
n m
odel
s of
acc
ess
to s
ervi
ces
for p
eopl
e w
ith e
arly
-sta
ge
dem
entia
.Agi
ng a
nd M
enta
l Hea
lth, 1
0, 5
5-62
.
Is A
lzhe
imer
dis
ease
-rel
ated
pat
holo
gy d
iffer
ent i
n m
ales
and
fem
ales
?B
radl
ey M
. Cha
hary
n, K
else
y Fe
hr, P
aul R
. Pen
ning
ton,
Zel
anW
ei a
nd D
arre
ll D
. Mou
ssea
uC
ell S
igna
lling
Lab
orat
ory,
Dep
artm
ent o
f Psy
chia
try,
Uni
vers
ity o
f Sas
katc
hew
an.
Intr
oduc
tion
A h
isto
ry o
f de
pres
sion
incr
ease
s th
e ch
ance
of
deve
lopi
ng A
lzhe
imer
dis
ease
(A
D)
in la
ter
life,
yet
it is
stil
l un
clea
r how
the
one
lead
s to
the
othe
r. W
e us
ed h
uman
aut
opsi
ed c
ontro
l and
AD
cor
tical
sam
ples
to e
xam
ine
MA
O-A
act
ivity
and
exp
ress
ion.
We
obse
rved
that
MA
O-A
act
ivity
and
exp
ress
ion
corr
elat
e in
mal
es, b
ut n
ot
in fe
mal
es. W
e al
so n
oted
sim
ilar p
atte
rns o
f exp
ress
ion
of so
me
of th
e m
ajor
secr
etas
esin
bra
in. T
hese
cha
nges
w
ere
not
mai
ntai
ned
in t
he A
D s
ampl
es.
This
sug
gest
s bo
th s
ex-d
epen
dent
and
AD
-dep
ende
nt p
atte
rns
of
expr
essi
on. A
clo
ser l
ook
at s
ome
of th
e fr
agm
ents
of t
he s
ecre
tase
-sub
stra
te A
myl
oid
Prec
urso
r Pro
tein
(APP
) re
veal
s un
expe
cted
pat
tern
s of
N-te
rmin
al f
ragm
ents
, th
at,
agai
n, d
iffer
bet
wee
n m
ales
and
fem
ales
. A
n ex
amin
atio
n of
APP
fra
gmen
tatio
n pa
ttern
s in
mal
e A
PP tr
ansg
enic
mic
e re
veal
s ag
e-de
pend
ent a
nd r
egio
n-sp
ecifi
c ch
ange
s in
APP
pro
cess
ing
that
coi
ncid
e w
ith c
hang
es in
the
leve
l of
‘dep
ress
ion’
(bas
ed o
n th
e ta
il-su
spen
sion
tes
t) in
the
se m
ice.
We
cont
inue
to
exam
ine
the
chan
ges
in A
PP p
roce
ssin
g us
ing
auto
psie
d hi
ppoc
ampa
lsa
mpl
es f
rom
the
sam
e do
nors
as
used
in
our
corti
cal
stud
ies
inth
e ho
pes
of a
cle
arer
un
ders
tand
ing
of t
wo
men
tal
heal
th i
ssue
s w
ith g
loba
l im
pact
, na
mel
y de
pres
sion
and
AD
. Pe
rhap
s ou
r ob
serv
atio
ns c
ould
pro
vide
for a
mea
ns o
f ide
ntify
ing
depr
esse
d in
divi
dual
s w
ho m
ight
be
at h
ighe
st ri
sk o
f AD
in
late
r life
.
Gen
eral
con
clus
ions
:•M
AO
A-A
exp
ress
ion
is d
iffer
ent i
n m
ales
and
fem
ales
.
•Sec
reta
sesa
nd th
e se
cret
ase
subs
trate
APP
are
diff
eren
t in
mal
es a
nd fe
mal
es.
•APP
cou
ld b
e an
end
ogen
ous r
egul
ator
of M
AO
-A fu
nctio
n.
•Cou
ld th
e re
gion
al d
iffer
ence
s see
n in
our
mou
se st
udie
s als
o ap
ply
to th
e hu
man
bra
in?
•Cou
ld t
hese
obs
erva
tions
pro
vide
for
a m
echa
nism
to
dete
rmin
e in
divi
dual
s w
ith
depr
essi
on w
ho m
ight
be
at h
igh
risk
for A
D?
Ack
now
ledg
men
ts:D
DM
is a
Sas
katc
hew
an R
esea
rch
Cha
ir in
Alz
heim
er’s
dise
ase
and
rela
ted
dem
entia
sth
at is
co-
fund
ed b
y th
e A
lzhe
imer
So
ciet
y of
Sas
katc
hew
an a
nd th
e Sa
skat
chew
an H
ealth
Res
earc
h Fo
unda
tion.
Res
ults
(A)
MA
O-A
act
ivity
was
not
sig
nific
antly
di
ffer
ent
in a
utop
sied
cor
tical
sam
ples
fro
m
cont
rols
an
d fr
om
patie
nts
with
Ea
rly-
Ons
et/F
amili
al A
D (
FAD
) or
Lat
e-O
nset
AD
(L
OA
D).
(B)
Subt
le
diff
eren
ces
coul
d be
de
tect
ed
if th
e sa
mpl
es
wer
e se
para
ted
acco
rdin
g to
the
sex
of th
e do
nour
. (C
) M
ale
and
fem
ale
sam
ples
wer
e se
lect
ed b
ased
on
thos
e w
ith t
he l
owes
t M
AO
-A a
ctiv
ity a
nd
thos
e w
ith t
he h
ighe
st.
In t
hese
sam
ples
, M
AO
-A a
ctiv
ity a
ppea
rs t
o co
rrel
ate
with
M
AO
-A p
rote
in e
xpre
ssio
n in
con
trol m
ales
, bu
t not
in c
ontro
l fem
ales
. Thi
s di
ffer
ence
is
lost
in
the
AD
tis
sues
. The
se r
esul
ts s
ugge
st
the
pote
ntia
l for
pos
t-tra
nsla
tion
regu
latio
n of
M
AO
-A fu
nctio
n.
1. M
AO
-A a
ctiv
ity c
orre
spon
ds w
ith M
AO
-A p
rote
in e
xpre
ssio
n in
mal
es, b
ut n
ot in
fem
ales
.
3. A
PP i
s a su
bstr
ate
for
-,-
and -
secr
etas
es.
A4
0A
ICD
(40)
p3A
ICD
A4
2A
ICD
(42)
C99
C83
sAPP
sA
PP
APP
‘nor
mal
’→
AD→
= m
embr
ane
amyl
oido
geni
cno
n-am
yloi
doge
nic
2. T
he le
vels
of s
ecre
tase
expr
essio
n di
ffer
s in
a se
x-de
pend
ent a
nd A
D-d
epen
dent
man
ner.
6. Y
oung
mic
e th
at e
xpre
ss a
n A
D-r
elat
ed A
PP a
re le
ssde
pres
sed
than
ol
der
mic
e ex
pres
sing
the
sam
e ge
ne.
Usi
ng th
e ta
il su
spen
sion
(TS
T) te
st f
or b
ehav
iour
al d
espa
ir, e
.g. ‘
depr
essi
on’,
we
obse
rved
that
(lef
t) y
oung
(3 m
onth
-old
) mic
e ex
pres
sing
the
AD
-rel
ated
APP
alle
le
(J20
) w
ere
less
dep
ress
ed t
han
(rig
ht)
olde
r (6
mon
th-o
ld)
mic
e ex
pres
sing
APP
. W
T: w
ildty
pe(li
tterm
ates
)
7. Im
mun
opre
cipi
tatio
nst
rate
gies
rev
eal d
iffer
ence
s in
youn
g an
d ol
d m
ale
J20
mou
se c
orte
x an
d hi
ppoc
ampu
s.
Cor
tical
an
d hi
ppoc
ampa
lex
tract
s fr
om
youn
g (3
mo)
and
old
(6
mo)
J20
mic
e w
ere
used
to
ex
amin
e fo
r le
vels
of
ex
pres
sion
of
th
e fu
ll le
ngth
A
PP
and
sAPP
an
d sA
PP
frag
men
ts.
The
sam
e ex
tract
s w
ere
used
to
dete
rmin
e th
e le
vels
of e
xpre
ssio
n of
the
-s
ecre
tase
-med
iate
d(C
99)
and
-sec
reta
se-m
edia
ted
(C83
) C
-te
rmin
al fr
agm
ents
.
We
rece
ntly
dem
onst
rate
d th
at p
rese
nilin
-1
(PS-
1)/
-sec
reta
se
can
dire
ctly
re
gula
te
MA
O-A
act
ivity
. The
sam
e sa
mpl
es a
s ab
ove
wer
e an
alyz
ed
for
leve
ls of
th
e pr
imar
y se
cret
ases
invo
lved
in A
D. T
he le
vels
of P
S-1
(-s
ecre
tase
) and
-s
ecre
tase
para
llel M
AO
-A
activ
ity in
mal
es, b
ut n
ot in
fem
ales
. Lev
els o
f -
secr
etas
eon
ly i
ncre
ase
in L
OA
D s
ampl
es,
sugg
estin
g a
shift
to
war
ds
amyl
oido
geni
cA
PP p
roce
ssin
g in
thes
e in
divi
dual
s.
su
ffic
ient
for
clin
ical
dep
ress
ion
5. T
he d
iffer
ent A
PP fr
agm
ents
exe
rt d
iffer
ent i
nflu
ence
s on
MA
O-A
ac
tivity
in h
uman
neu
rona
l cel
ls.
The
over
expr
essi
onof
the
maj
or
secr
etas
e-m
edia
ted
APP
fra
gmen
ts
influ
ence
M
AO
-A
activ
ity
in
hum
an S
H-S
y5y
cell
cultu
res.
-s
APP
6E10
-A
ICD
-s
APP
6E10
sAPP
sAPP
4. T
he p
atte
rn o
f APP
frag
men
ts d
iffer
s bet
wee
n m
ales
and
fem
ales
.
Sequ
entia
l im
mun
opre
cipi
tatio
nst
rate
gies
reve
al th
at th
e ex
pres
sion
pat
tern
of A
PP
and
its m
ajor
sec
reta
se-m
edia
ted
frag
men
ts d
iffer
in
mal
es a
nd f
emal
es.
Fem
ales
cl
early
hav
e fa
r mor
e de
tect
able
APP
frag
men
ts in
AD
and
the
sAPP
is
neg
ativ
ely
corr
elat
ed w
ith M
AO
-A a
ctiv
ity i
n m
ale
LOA
D s
ampl
es a
nd p
ositi
vely
cor
rela
ted
with
MA
O-A
act
ivity
in fe
mal
e A
D sa
mpl
es.
The Experience of Sons as Carers for a Parent Diagnosed with Dementia at the Rural and Remote Memory Clinic (RRMC)
N. Stewart1, D. Minish2, A. Cammer2, D. Morgan2 1College of Nursing, University of Saskatchewan, 2Canadian Centre for Health and Safety in Agriculture, College of Medicine, University of Saskatchewan
AimTo explore the experiences of sons as carers for a
parent with dementia and to understand their contributions and challenges in rural settings
Method•Interpretive Description (Thorne, 2008) approach
•Retrospective interviews conducted in-person and via telephone
Participants•Study participants were primary carers of parents treated at RRMC
•At the time of interview, 3 parents were deceased, 1 in long-term care, and 1 living independently
•4 sons lived in same community as parent, 1 lived 24km and 1 lived 227km from parent
•All sons were employed; 1 semi-retired
Total RRMC primary caregivers 210 (100%) Son primary caregivers 19 (9.0%) Sons who, upon contact, functionedin primary caregiving role for parent
6 (2.9%)
Age range of Sons in primary carerrole
32 – 57yr (M=50.7yr)
Parent diagnoses 3 Alzheimer Disease, 1 Vascular Dementia,
1 Mixed Dementia, 1 Frontotemporal
Dementia Parent 5 Mothers, 1 Father
• Semi-structured interview guide adapted from Harris and Bichler’s Men Giving Care: Reflections of Sons and Husbands (1997)
• Interviews focused on roles, stress and coping, family relations, motivation, and meaning of experience
• Constant comparison analysis
Conclusions•Though relatively few sons have taken on role of primary carer, the 6 in this study were committed
•Support, when needed, was sourced by partners and siblings rather than through formal services (exception: dangerous behaviour associated with frontotemporaldementia; help sought but turned down by family physician and hospital)
• More education for families and healthcare workers is needed, and formal support when behaviour is unsafe
FindingsInterpretation of the experiences of sons as carers included:
Emotional Engagement: All sons actively engaged in process of caring. Strong emotional reactions to the carer role (anxiety about safety, frustration with health system, anguish over symptoms of decline).
Resilience: Sense of duty permeated role; most were oldest sons. Described as a full-time job but were able to “get the job done and move on.” None used language of burden except to negate the idea; “She’ll never be a burden no matter what.” Managed to find positives in caring.
Gender and Geography: No expression of concern about what might be considered ‘women’s work’; embraced carer role. None did personal care; one expressed concern that his parent would be embarrassed. Geography appeared to be a key factor in determining who provided care; proximity was mentioned often. Rural context elicited mixed reactions; positive in some cases but disadvantage of “falling through the cracks”.
Care for the Caregiver: Little use of formal services; term ‘caregiver’ rejected as this was family. When support was not found during crisis son felt “hung out to dry”.
Meaning of Care Roles: Carer role a source of pride; rewarding in spite of challenges, “a role you grow into”and an opportunity to “give back”.
For additional information contact:
Debra Morgan, PhD, RNProfessorCIHR-SHRF Applied Chair in Health Services and Policy ResearchCollege of Medicine Chair, Rural Health DeliveryCanadian Centre for Health & Safety in Agriculture (CCHSA)University of Saskatchewan104 Clinic Pl, PO Box 23Saskatoon, SK S7N 5E5
Telephone: (306) 966-7905Facsimilie: (306) 966-8799Email: [email protected]://cchsa-ccssma.usask.ca