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)

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3A

nkri,

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.(20

05).

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ight

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x, L

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hou,

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2000

). Fa

ctor

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lez,

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acob

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R. (

2010

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-Bas

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Appr

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Car

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esea

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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

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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

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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

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dem

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Incident  dem

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e  10

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iod  or

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th  

Risk  factors  for  those  developed  incide

nt  

demen

)a  during  study  period    

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w  edu

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n  ¥ 

Having

 dep

ression  

¥ Ha

ving

 stok

e  ¥ 

Not

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gular  e

xercise

r  ¥ 

Having

 Apo

E  ε3

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Thos

e  with

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grea

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isk  of  inc

iden

t  dem

en+a

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mpa

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e  with

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E  ε3

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Exam

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ten+

al  env

ironm

enta

l  risk

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s  in  in

cide

nt  A

D  an

d  Va

D  

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nt  A

D  an

d  Va

D  du

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th  

Risk  factors  for  those  developed  incident  

AD  and  VaD  during  study  period    

¥ Lo

w  edu

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D  &  V

aD)  

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ving

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ression  (A

D  &  V

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e  with

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demen?a  

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ke  

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gular  d

rinke

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gular  s

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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: debra.morgan@usask.cahttp://cchsa-ccssma.usask.ca