Knowledge Network in Rural and Remote Dementia Care

Healthcare Delivery Across the Continuum for Rural and Remote Seniors with Dementia

2nd Annual Summit

October 29 & 30, 2009

Scientific Poster Session

Thursday October 29, 2009 Wine and Cheese Scientific Poster Program

7:00 PM – 10:00 PM at Sheraton Hotel (South Room)

Poster Number

Poster Presenter Authors & Poster Titles

1 Leslie Holfeld Holfeld, L., Morgan, D., Crossley, M., Kirk, A., Stewart, N., D’Arcy, C., Forbes, D., Dal Bello-Haas, V., Basran, J., McBain, L., Cammer, A. & O’Connell, M.

Development and Evaluation of a Telehealth-Supported Rural and Remote Memory Clinic

2 Rob Beever Beever, R., Kosteniuk, J., Karunanayake, C., Morgan, D. & Elash, F.

Standardized Scales Used at the Rural and Remote Memory Clinic

3 Julie Kosteniuk Morgan, D., Karunanayake, C., Beever, R., Elash, F. & Kosteniuk, J.

Knowledge Transfer and Capacity Building Activities of the Rural and Remote Memory Clinic

4 Julie Kosteniuk Kosteniuk, J., Morgan, D., Innes, A., Keady, J., Goins, T., D’Arcy, C. & Stewart, N.

Dementia Diagnosis and Management Among Rural and Remote Primary Care Providers: A Research Proposal

5 Debra Morgan Morgan, D., Crossley, M., Kirk, A., Stewart, N., D’Arcy, C., Basran, J., Dal Bello-Haas, V., McBain, L., Holfeld, L.

Evaluation of Telehealth in a Rural and Remote Memory Clinic

6 Megan O’Connell O’Connell, M., Crossley, M. & Morgan, D.

Development and Evaluation of a Telehealth Facilitated Support Group for Caregivers of Individuals Diagnosed with Atypical Dementias

7 Norma Stewart & Joseph Wickenhauser

Stewart, N., Morgan, D., Forbes, D., Karuanayake, C. & Wickenhauser, J.

Gender and Generational Differences in Distress and Health of Caregivers Prior to a Family Member’s Dementia Diagnosis

8 Evangeline Patkau Alzheimer Society of Saskatchewan First Link Coordinators

First Link: Linking Individuals and Families Affected by Alzheimer’s Disease or a Related Dementia to a Community of Learning, Services and Support

9 Duane Minish Minish, D. & Morgan, D.

Strategic Response to Dementia Rates in the United Kingdom - A Country by Country Overview

10 Allison Cammer Cammer, A., Dal Bello-Haas, V., Morgan, D., Crossley, M., D’Arcy, C., Kirk, A., McBain, L., O’Connell, M. & Stewart, N.

How Can We Help You? Analysis of Referrals to a Rural and Remote Memory Clinic from Rural Family Physicians and Patients/Caregivers.

11 Dorothy Forbes Forbes, D., Clark, K., Coatsworth-Puspoky, R., Jarvie, A., McDonald, C. & Lischka, A.

Resources Needed to Provide Effective Responses to Behavioral Challenges in Long-Term Care Facilities

12 Vanina Dal Bello-Haas Dal Bello-Haas, V., O’Connell, M. & Morgan, D.

Maintaining Health and Wellness in the Face of Dementia: An Analysis of Individuals Living in Rural and Remote Areas

13 Nicole Haugrud Haugrud, N., Crossley, M., Vrbanbcic, M. & Jodouin, S.

Comparing Qualitative Verbal Fluency Scoring Procedures in Healthy Aging and Early Stage Alzheimer’s Disease

14 Cailey Strauss Strass, C., Haugrud, N., Crossley, M. & Morgan, D.

Delayed Memory, but not Executive Skills, Predicts Functional Impairment in Newly Diagnosed Alzheimer’s Disease

15 Joceyln Poock Poock, J., Dal Bello-Haas, V. & Crossley, M.

The Effects of a “Walking While Talking” Dual-Task on Ambulation in Early-Stage Alzheimer Disease and Normal Aging

16 Margaret Crossley & Shawnda Lanting

Crossley, M., Lanting, S., O’Connell, M., Morgan, D. * The Keewatin Yatthé Home Care Team

Developing Dementia Screening Tools for Northern Aboriginal Seniors: Partnering with Keewatin Yatthé RHA Home Care Services

17 Lesley McBain McBain, L. & Morgan, D.

First Nation Long-Term Care Facilities: Initial Observations

18 Drew Kirk Kirk, A., Crossley, M., Harder, S., Basran, J., Dal Bello-Haas, V., Morgan, D., Stewart, N., D’Arcy, C., Biem, J., Forbes, D. & Holfeld, L.

Design and Operation of a Multidisciplinary Memory Clinic Using Telehealth Technology to Serve a Rural and Remote Population

19 Heidi Schmaltz Heidi’s poster is not included in this booklet due to printing time constraints. For a copy of her poster please contact Debra Morgan at debra.morgan@usask.ca

The

clin

ic is

eva

luat

ed in

a n

umbe

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ays

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udin

g:•R

egul

arly

sch

edul

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linic

Tea

m m

eetin

gs to

pla

n an

d di

scus

s cl

inic

pro

cess

, exa

min

e is

sues

, and

mak

e

de

cisi

ons

•Ann

ual N

ET

retre

at w

orks

hops

•Sys

tem

atic

mon

itorin

g of

Clin

ic a

ttend

ance

and

‘dro

p-ou

ts’

•Com

paris

on o

f tra

vel t

ime

and

estim

ate

of c

osts

sav

ed:

Mea

n di

stan

ce to

Tel

ehea

lth =

78

Mea

n di

stan

ce to

Sas

kato

on =

518

Dis

tanc

e sa

ved

by T

eleh

ealth

= 4

40

•At e

ach

Tele

heal

th A

ppoi

ntm

ent:

Fam

ily/C

lient

Tel

ehea

lth S

atis

fact

ion

Que

stio

nnai

re

Tele

heal

th C

oord

inat

or E

valu

atio

n Fo

rm•A

fter f

ull-d

ay c

linic

vis

it in

Sas

kato

on:

Stru

ctur

ed s

cale

and

sem

i-stru

ctur

ed te

leph

one

inte

rvie

w w

ith in

form

al c

areg

iver

•At T

eleh

ealth

and

In-P

erso

n Fo

llow

-up

App

oint

men

ts:

Follo

w-u

p Ev

alua

tion

Form

(Pat

ient

and

Fam

ily)

•In-

dept

h in

terv

iew

with

info

rmal

car

egiv

er 1

yea

r afte

r ini

tial c

linic

con

tact

Dev

elop

men

t an

d E

valu

atio

n of

a T

eleh

ealt

h-Su

ppor

ted

Rur

al a

nd R

emot

e M

emor

y C

linic

L. H

olfe

ld1 ,

D. M

orga

n1 , M

. Cro

ssle

y2 , A

. Kirk

3 , N

. Ste

war

t4 , C

. D’A

rcy5 ,

D. F

orbe

s6 , V

. Dal

Bel

lo-H

aas7 ,

J. B

asra

n3 , L.

McB

ain8 ,

A. C

amm

er1 ,

M. O

’Con

nell2

Bac

kgro

un

dFu

ll-D

ay C

oord

inat

ed A

sses

smen

t

Ru

ral a

nd

Rem

ote

Mem

ory

Clin

ic

Inte

rvie

w A

nal

ysis

Eva

luat

ion

D

iscu

ssio

n

Ack

now

ledg

emen

ts

1) Im

prov

e th

e av

aila

bilit

y of

spe

cial

ized

per

sonn

el a

nd s

ervi

ces

prov

idin

g as

sess

men

t

and

man

agem

ent o

f dem

entia

2) Im

prov

e th

e ac

cess

ibili

tyof

pro

gram

s su

ppor

ting

form

al a

nd in

form

al c

areg

iver

s of

pe

rson

s w

ith d

emen

tia3)

Impr

ove

the

acce

ptab

ility

of s

ervi

ces

for p

erso

ns w

ith d

emen

tia a

nd th

eir c

areg

iver

s

Intr

oduc

tion:

•Rur

al a

nd N

orth

ern

Sas

katc

hew

an h

ave

a lo

w p

opul

atio

n de

nsity

resu

lting

in la

rge

trave

l bu

rden

for m

edic

al v

isits

•Rur

al S

K is

old

er, o

n av

erag

e, th

an u

rban

an

d is

hom

e to

man

y ol

der a

dults

•Ris

k fo

r dem

entia

incr

ease

s w

ith a

ge

Typi

cal P

atte

rn o

f Dia

gnos

is:

Prio

r to

Rur

al a

nd R

emot

e M

emor

y C

linic

Initi

al a

ppoi

ntm

ent

with

neu

rolo

gist

Ref

erra

ls fo

r CT,

ne

urop

sych

olog

y

Appo

intm

ent f

or C

T

Appo

intm

ent f

or

neur

opsy

chol

ogy

Rep

orts

sen

t to

neur

olog

ist

Sche

dule

nex

t ap

poin

tmen

t with

ne

urol

ogis

t

Appo

intm

ent w

ith

neur

olog

ist f

or

diag

nosi

s

Dia

gnos

is a

nd

care

pla

n se

nt to

G

P

Sche

dule

follo

w-

ups

1 ye

ar+

Ref

erra

l by

GP

to

neur

olog

ist

wai

t-tim

e

6 m

onth

+

wai

t-tim

ew

ait-t

ime

6 m

onth

+

New

Em

ergi

ng T

eam

, Dec

embe

r 200

4

The

Rur

al a

nd R

emot

e M

emor

y cl

inic

has

see

n ap

prox

imat

ely

225

patie

nts/

care

give

rs to

dat

e

The

succ

ess

of th

is c

linic

al s

ervi

ce is

due

to:

•Clin

ical

nee

d•R

esea

rch

prod

uctiv

ity•T

each

ing

valu

e, c

apac

ity b

uild

ing

•Foc

us o

n ru

ral r

esid

ents

•Foc

us o

n ne

eds

of e

lder

ly p

atie

nts

•Foc

us o

n ab

orig

inal

resi

dent

s•F

ocus

on

tech

nolo

gy, t

eleh

ealth

, sav

ing

$•I

ncre

asin

g se

rvic

e ac

cess

•Hig

h sa

tisfa

ctio

n of

pat

ient

s an

d ca

regi

vers

•Int

ervi

ew c

omm

ents

pro

ved

to b

e th

e be

st s

ourc

e of

feed

back

forf

ull-d

ay c

linic

eva

luat

ion

•Rel

ativ

ely

few

con

cern

s an

d co

mpl

aint

s bu

t, w

hen

repo

rted,

con

cern

s an

d su

gges

tions

di

scus

sed

and

addr

esse

d at

regu

lar c

linic

mee

tings

•Exa

mpl

es o

f con

cern

s: la

ck o

f sup

port

bar i

n w

ashr

oom

, poo

r whe

elch

air a

cces

sibi

lity,

le

ngth

of d

ay a

nd n

eed

for r

est b

reak

s, to

o m

any

ques

tionn

aire

s (a

ll ad

dres

sed)

•Ove

rall,

the

posi

tive

feed

back

sho

wed

acc

epta

bilit

y an

d sa

tisfa

ctio

n w

ith c

linic

•The

mat

ic a

naly

sis

of in

terv

iew

com

men

ts p

rodu

ced

3 m

ain

area

s of

satis

fact

ion:

Fund

ing

and

in-k

ind

supp

ort i

s ge

nero

usly

pro

vide

d by

:

New

Em

ergi

ng T

eam

(NET

) Gra

nt:

•NE

T gr

ant,

“Stra

tegi

es to

impr

ove

the

care

of p

erso

ns w

ith d

emen

tia in

ru

ral a

nd re

mot

e ar

eas”

, was

dev

elop

ed to

:

•Pre

-ass

essm

ent o

f pat

ient

and

car

egiv

ers

is c

ondu

cted

via

tele

heal

thto

pr

epar

e th

em fo

r the

one

-day

ass

essm

ent,

fam

iliariz

e th

em w

ith th

e cl

inic

nur

se

who

will

be th

eir c

are

liais

on, o

rder

blo

od w

ork

or o

ther

test

s,an

d ga

ther

in

form

atio

n to

ass

ist w

ith p

lann

ing

the

one-

day

asse

ssm

ent

•Coo

rdin

ated

ass

essm

entt

akes

pla

ce in

Sas

kato

on, i

s ap

prox

imat

ely

8 ho

urs,

an

d in

volv

es th

e pa

tient

and

thei

r inf

orm

al c

areg

iver

s an

d/or

fam

ily m

embe

rs

1 Can

adia

n C

entre

for H

ealth

and

Saf

ety

in A

gric

ultu

re, U

nive

rsity

of S

aska

tche

wan

; 2D

epar

tmen

t of P

sych

olog

y, U

nive

rsity

of S

aska

tche

wan

; 3C

olle

ge o

f M

edic

ine,

Uni

vers

ity o

f Sas

katc

hew

an; 4

Col

lege

of N

ursi

ng, U

nive

rsity

of S

aska

tche

wan

; 5D

epar

tmen

tof A

pplie

d R

esea

rch,

Uni

vers

ity o

f Sas

katc

hew

an;

6 Sch

ool o

f Nur

sing

, Uni

vers

ity o

f Wes

tern

Ont

ario

; 7Sc

hool

of P

hysi

cal T

hera

py, U

nive

rsity

of S

aska

tche

wan

; 8Fi

rst N

atio

ns U

nive

rsity

of C

anad

a

Red

uced

Tra

vel B

urde

n•F

or u

s it’

s qu

ite a

trip

so

it w

as

a re

lief t

o ha

ve it

all

done

in o

ne

day

–I c

an’t

imag

ine

havi

ng to

se

e al

l tho

se p

eopl

e in

thei

r ow

n of

fices

on

diffe

rent

day

s –

wou

ld

have

bee

n to

o st

ress

ful

•It w

as a

long

day

but

not

as

exha

ustin

g as

we’

d an

ticip

ated

. M

ore

trips

has

its

own

elem

ent o

f fa

tigue

and

is m

ore

cost

ly –

and

it’s

diffi

cult

to a

rran

ge, e

spec

ially

gi

ven

the

wea

ther

and

dis

tanc

e

•It w

as e

asie

r tha

n go

ing

man

y tim

es b

ecau

se a

fter t

he tr

avel

sh

e’s

alre

ady

wor

ked

up

Tim

ely

Dia

gnos

is•S

uch

a re

lief t

o ha

ve a

dia

gnos

is

and

star

t pla

nnin

g, ta

king

the

next

st

eps

and

not w

onde

ring

•A b

ig th

ing

is ju

st k

now

ing,

just

kn

owin

g w

hat t

he p

robl

em is

so

we

can

star

t dea

ling

•[M

y hu

sban

d] w

as re

lieve

d to

ha

ve e

very

thin

g fin

ishe

d th

at d

ay

and

know

the

resu

lts-n

ot h

ave

it ha

ngin

g ov

er h

is h

ead

•It w

as re

ally

gre

at to

go

in a

nd

have

the

test

s an

d ge

t the

resu

lts

and

diag

nosi

s rig

ht a

way

with

out

wai

ting

or w

orry

ing

Team

App

roac

h to

Car

e•E

very

one

wen

t out

of t

heir

way

to

mak

e us

com

forta

ble,

wer

e ve

ry

frien

dly

and

know

ledg

eabl

e

•All

the

doct

ors

can

talk

to e

ach

othe

r rig

ht th

ere

rath

er th

an h

avin

g us

as

the

go-b

etw

een

sayi

ng, ‘

wel

l th

is D

r. to

ld u

s th

is la

st m

onth

…’;

I ju

st c

an’t

imag

ine

doin

g th

is a

ny

othe

r way

–it’

s ho

w h

ealth

care

sh

ould

be

•I’v

e ne

ver b

een

to a

pla

ce w

here

ev

eryo

ne w

orke

d so

wel

l tog

ethe

r

•We

wer

e re

spec

ted

and

didn

’t ge

t tha

t ‘yo

u’re

old

; wha

t do

you

expe

ct?’

attit

ude

we

ofte

n do

Clin

ic G

oal:

•To

deve

lop

and

eval

uate

a s

trea

mlin

ed in

tegr

ated

clin

ic fo

r pat

ient

s fro

m

rura

l and

rem

ote

Sas

katc

hew

an fo

r dia

gnos

is a

nd m

anag

emen

t of d

emen

tia a

nd

to e

valu

ate

tele

heal

thas

a m

eans

of d

eliv

erin

g fo

llow

-up

care

Rur

al a

nd R

emot

e M

emor

y C

linic

Pat

tern

:

Ref

erra

l by

GP

to c

linic

vi

a ne

urol

ogis

t

Pre

-ass

essm

ent

appo

intm

ent v

ia

tele

heal

th

Follo

w-u

ps

via

tele

heal

th

6-10

mon

thw

ait-t

ime

wai

t-tim

e

6 w

k, 1

2 w

k, 6

m

onth

& y

early

1 m

onth

Follo

w-u

ps

Sam

e-da

y C

oord

inat

ed

Ass

essm

ent

End

of D

ay T

eam

C

onfe

renc

e, G

P in

vite

d to

pa

rtici

pate

via

te

leco

nfer

ence

Dia

gnos

is a

nd T

reat

men

t P

lan

com

mun

icat

ed to

fa

mily

Neu

rolo

gist

Neu

rops

ycho

logi

st

Psyc

hom

etris

t

Dia

gnos

tic Im

agin

gG

eria

tric

ian

Phys

ical

Th

erap

ist

Clin

ic N

urse

Team

Con

fere

nce,

D

iagn

osis

and

C

are

Plan

ning

Team

Mee

ts

with

Pat

ient

an

d Fa

mily

It w

as li

ke c

limbi

ng a

mou

ntai

n to

get

a d

iagn

osis

.“S

trate

gy fo

r AD

and

Rel

ated

Dem

entia

s in

Sas

katc

hew

an”

(200

4), f

ocus

gro

up c

omm

ent.

Sta

nd

ard

ize

d S

ca

les

us

ed

at

the

Ru

ral

& R

em

ote

Me

mo

ry C

lin

ic

Ro

b B

eever1

, M

.Ed

, J

ulie K

oste

niu

k1,

Ph

.D,

Ch

an

dim

a K

aru

nan

ayake

2,

Ph

.D.,

Deb

ra M

org

an

2,

Ph

.D &

Fre

da E

lash

1

Ap

plied

Researc

h/P

sych

iatr

y1

Can

ad

ian

Cen

tre f

or

Healt

h a

nd

Safe

ty in

Ag

ricu

ltu

re2

Clien

t In

tervie

w Q

uesti

on

nair

e

Th

e C

lien

t In

terv

iew

Qu

esti

on

nai

re i

s co

nd

uct

ed d

uri

ng

th

e p

atie

nt’

s

Cli

nic

Day

vis

it a

s w

ell

as a

t an

nu

al f

oll

ow

-up

s. T

he

foll

ow

ing

is

a

list

of

the

emb

edd

ed s

cale

s w

ith

in t

he

Cli

ent

Inte

rvie

w

Qu

esti

on

nai

re.

1.

Lif

e C

on

cer

ns

Sca

le -

is

a 1

4-i

tem

mea

sure

in

ten

ded

to

mea

sure

life

co

nce

rns

and

str

ess

(D’A

rcy

, 1

98

7).

All

ite

ms

are

sum

med

an

d

hav

e a

ran

ge

fro

m 0

- 5

6 w

ith

hig

her

sco

res

ind

icat

ing

gre

ater

imp

airm

ent.

2.

Inst

rum

ents

of

Da

ily

Liv

ing S

cale

- i

s a

9-i

tem

sca

le d

esig

ned

to

mea

sure

th

e ab

ilit

y t

o p

erfo

rm d

aily

tas

ks

(Law

ton

& B

rod

y,

19

69

).

Sco

res

ran

ge

fro

m 9

- 2

7 w

ith

hig

her

sco

res

ind

icat

ing

a h

igh

er l

evel

of

fun

ctio

nin

g.

3. S

elf

-ra

tin

gs

of

Mem

ory

Sca

le -

is

a 1

5-i

tem

sca

le t

hat

pat

ien

ts

use

to

rat

e th

eir

mem

ory

ab

ilit

ies

curr

entl

y a

s co

mp

ared

to

fo

ur

yea

rs

ago

(S

qu

ire

& Z

ou

zou

nis

, 1

98

8).

A h

igh

er p

osi

tiv

e sc

ore

in

dic

ates

gre

ater

mem

ory

ab

ilit

ies.

4.

Per

ceiv

ed S

tress

Sca

le -

is

a 4

-ite

m s

cale

th

at m

easu

res

pat

ien

t

tho

ug

hts

an

d f

eeli

ng

s d

uri

ng

th

e la

st m

on

th (

Co

hen

& K

amar

ack,

19

83

). A

ll i

tem

s ar

e su

mm

ed a

nd

ran

ge

fro

m 0

- 1

6 w

ith

hig

her

sco

res

ind

icat

ing

hig

her

str

ess.

5.

Qu

ali

ty o

f L

ife

Alz

hei

mer

’s D

isea

se S

cale

- i

s a

13

-ite

m m

easu

re

of

qu

alit

y o

f li

fe (

Lo

gsd

on

et

al.,

19

99

). T

ota

l sc

ore

s ra

ng

e fr

om

13

to 5

2,

wit

h h

igh

er s

core

s in

dic

atin

g g

reat

er Q

OL

. T

his

mea

sure

incl

ud

es a

n a

pp

rais

al o

f th

e p

atie

nt’

s p

hy

sica

l co

nd

itio

n,

mo

od

,

inte

rper

son

al r

elat

ion

ship

s, a

bil

ity

to

par

tici

pat

e in

mea

nin

gfu

l

acti

vit

ies,

fin

anci

al s

itu

atio

n,

and

an

ov

eral

l as

sess

men

t o

f se

lf a

nd

qu

alit

y o

f li

fe.

Th

is m

easu

re o

bta

ins

a ra

tin

g o

f th

e p

atie

nt’

s q

ual

ity

of

life

fro

m b

oth

th

e p

atie

nt

and

th

e ca

reg

iver

per

spec

tiv

e.

6.

Cen

tre

for

Ep

idem

iolo

gic

Stu

die

s: D

epre

ssed

Mo

od

Sca

le -

is

a

pat

ien

t se

lf-r

epo

rted

20

-ite

m s

cale

dev

elo

ped

to

mea

sure

dep

ress

ive

sym

pto

ms

such

as

sad

mo

od

, fe

elin

gs

of

gu

ilt

and

wo

rth

less

nes

s, l

oss

of

app

etit

e, a

nd

sle

ep d

istu

rban

ce (

Rad

loff

, 1

97

7).

To

tal

sco

res

ran

ge

fro

m 0

to

60

wit

h a

hig

her

sco

re i

nd

icat

ing

mo

re s

ym

pto

ms.

7.

Ple

asa

nt

Ev

ents

Sca

le:

Alz

hei

mer

’s D

isea

se -

is

a 2

0-i

tem

sca

le

des

ign

ed t

o m

easu

re p

ast

enjo

ym

ent

of

var

iou

s ac

tiv

itie

s (L

og

sdo

n &

Ter

i, 1

99

7).

H

igh

er s

core

s in

dic

ates

a h

igh

er l

evel

of

enjo

ym

ent.

T

he

Fam

ily

Car

egiv

er Q

ues

tio

nn

aire

is

con

du

cted

du

rin

g t

he

pat

ien

t’s

Cli

nic

Day

ap

po

intm

ent

and

is

com

ple

ted

at

ann

ual

foll

ow

-up

s. T

he

foll

ow

ing

is

a li

st o

f th

e sc

ales

wit

hin

th

e F

amil

y

Car

egiv

er Q

ues

tio

nn

aire

.

1.

Fu

nct

ion

al

Ass

essm

ent

Qu

esti

on

na

ire

- is

a 1

0-i

tem

scr

een

ing

too

l fo

r as

sess

ing

in

dep

end

ence

in

dai

ly a

ctiv

itie

s an

d u

niv

ersa

l

skil

ls a

mo

ng

old

er a

du

lts

(Pfe

ffer

et

al.,

19

82

). T

ota

l sc

ore

s fr

om

the

FA

Q r

ang

e fr

om

0

- 3

0 w

ith

hig

her

sco

res

ind

icat

ing

gre

ater

dep

end

ence

of

the

pat

ien

t.

2.

Bri

sto

l A

ctiv

itie

s o

f D

ail

y L

ivin

g S

cale

- i

s a

care

giv

er-r

ated

inst

rum

ent

con

tain

ing

20

dai

ly l

ivin

g a

bil

itie

s in

fo

ur

area

s:

mo

bil

ity

, in

stru

men

tal

acti

vit

ies

of

dai

ly l

ivin

g,

self

-car

e, a

nd

ori

enta

tio

n (

Bu

cks

et a

l.,

19

96

). T

ota

l sc

ore

s ra

ng

e fr

om

0 t

o 6

0

wit

h h

igh

er s

core

s re

flec

tin

g g

reat

er d

epen

den

ce o

f th

e p

atie

nt.

3. Q

ua

lity

of

Lif

e A

lzh

eim

er’s

Dis

ease

Sca

le -

Ple

ase

see

the

des

crip

tio

n i

n t

he

Cli

ent

Inte

rvie

w Q

ues

tio

nn

aire

sec

tio

n o

n t

he

left

.

4. N

euro

psy

chia

tric

In

ven

tory

: S

ever

ity

- i

s a

pro

xy

-rat

ed s

cale

th

at

mea

sure

s 1

2 p

sych

iatr

ic s

ym

pto

ms

(Cu

mm

ing

s et

al.,

19

94

). T

he

Neu

rop

sych

iatr

ic I

nv

ento

ry-S

ever

ity

sca

le (

NP

I-S

) is

a 1

2-i

tem

scal

e. T

ota

l sc

ore

s ra

ng

e fr

om

12

to

36

wit

h h

igh

er s

core

s

ind

icat

ing

mo

re s

ever

e p

atie

nt

sym

pto

ms.

5. Z

ari

t B

urd

en S

cale

- i

s a

12

-ite

m s

cale

use

d t

o a

sses

s ca

reg

iver

bu

rden

(Z

arit

et

al.,

19

85

). T

ota

l sc

ore

s ra

ng

e fr

om

0 t

o 4

8 w

ith

hig

her

sco

res

ind

icat

ing

gre

ater

bu

rden

.

6.

Bri

ef S

ym

pto

m I

nv

ento

ry -

is

a 5

3-i

tem

sca

le t

hat

req

uir

es t

he

care

giv

er t

o r

ate

the

deg

ree

to w

hic

h p

ote

nti

al p

rob

lem

are

as h

ave

dis

tres

sed

th

em o

ver

th

e p

ast

7 d

ays

(Der

og

atis

& M

elis

arat

os,

19

83

). H

igh

er s

core

s in

dic

ate

hig

her

lev

els

of

care

giv

er d

istr

ess.

7.

Sh

ort

Fo

rm H

ealt

h S

urv

ey -

is

a 1

2-i

tem

sca

le d

esig

ned

to

mea

sure

car

egiv

er m

enta

l an

d p

hy

sica

l h

ealt

h (

War

e et

al.

, 1

99

6).

Men

tal

and

ph

ysi

cal

hea

lth

sco

res

are

calc

ula

ted

th

rou

gh

a

com

pu

ter

soft

war

e p

rog

ram

an

d r

ang

e fr

om

0-1

00

wit

h h

igh

er

sco

res

ind

icat

ing

bet

ter

men

tal

or

ph

ysi

cal

hea

lth

.

fffOhotherhealthbehaviors.

Auth

or

can b

e c

onta

cte

d a

t b

eev.9

9@

usask.c

a o

r 3

06-9

66-8

772

Ackn

ow

led

gm

en

ts

Fam

ily C

areg

iver Q

uesti

on

nair

e

Fam

ily C

areg

iver S

ati

sfa

cti

on

Qu

esti

on

nair

e

T

he

Fam

ily

Car

egiv

er S

atis

fact

ion

Qu

esti

on

nai

re i

s co

nd

uct

ed d

uri

ng

the

pat

ien

t’s

init

ial

Cli

nic

Day

. T

he

qu

esti

on

nai

re i

ncl

ud

es t

hre

e

dif

fere

nt

scal

es:

1.C

om

mu

nic

ati

on

- i

s a

8-i

tem

sca

le d

esig

ned

to

mea

sure

car

egiv

er

sati

sfac

tio

n w

ith

th

eir

com

mu

nic

atio

n w

ith

th

e M

emo

ry C

lin

ic T

eam

(McK

inle

y e

t al

., 1

97

9).

S

co

res

for

each

ite

m a

re s

um

med

wit

h

ran

gin

g f

rom

1 t

o 3

2 w

ith

hig

her

sco

res

ind

icat

ing

a h

igh

er l

evel

of

com

mu

nic

atio

n b

etw

een

th

e ca

reg

iver

an

d M

emo

ry C

lin

ic T

eam

.

2.

Att

itu

de

- is

a 4

-ite

m s

cale

des

ign

ed t

o m

easu

re c

areg

iver

sati

sfac

tio

n w

ith

th

e at

titu

de

of

the

Mem

ory

Cli

nic

Tea

m (

McK

inle

y

et a

l.,

19

79

). S

co

res

for

each

ite

m a

re s

um

med

wit

h r

ang

ing

fro

m 4

to

20

wit

h h

igh

er s

core

s in

dic

atin

g a

hig

her

po

siti

ve

atti

tud

e b

y t

he

care

giv

er t

ow

ard

s th

e M

emo

ry C

lin

ic T

eam

.

3.

Cli

ent

Sa

tisf

act

ion

Qu

esti

on

na

ire

- is

ad

min

iste

red

as

eith

er a

17

-

item

, 8

-ite

m o

r 3

-ite

m s

cale

to

mea

sure

car

egiv

er s

atis

fact

ion

wit

h

thei

r M

emo

ry C

lin

ic e

xp

erie

nce

(L

arse

n e

t al

., 1

97

9).

A h

igh

er s

core

dem

on

stra

tes

a h

igh

er l

evel

of

sati

sfac

tio

n.

Ad

dit

ion

al M

easu

res

T

he

Ru

ral

and

Rem

ote

Mem

ory

Cli

nic

co

llec

ts e

val

uat

ion

dat

a an

d

clin

ical

dat

a.

Th

e ev

alu

atio

n d

ata

is c

om

po

sed o

f fo

ur

form

s b

ased

on

info

rmat

ion

co

llec

ted

at

Tel

ehea

lth

in

clu

din

g a

Rec

ord

of

Co

nta

ct

form

, F

amil

y/C

lien

t T

eleh

ealt

h S

atis

faca

tio

n f

orm

, th

e T

eleh

ealt

h

Co

ord

inat

or

Ev

alu

atio

n F

orm

an

d t

he

Fo

llo

w-u

p E

val

uat

ion

fo

rm f

or

Pat

ien

t an

d F

amil

y.

O

ther

ev

alu

atio

n m

easu

res

use

d i

n t

he

Ru

ral

and

Rem

ote

Mem

ory

Cli

nic

are

th

e F

amil

y/C

lien

t S

atis

fact

ion

In

terv

iew

Gu

ide:

Tel

ehea

lth

Ex

per

ien

ce,

and

Sat

isfa

ctio

n w

ith t

he

On

e-S

top

Cli

nic

.

T

he

clin

ical

mea

sure

s in

th

e R

ura

l an

d R

emo

te M

emo

ry C

lin

ic c

om

e

fro

m d

iffe

ren

t p

rofe

ssio

ns

incl

ud

ing

dat

a p

oin

ts f

rom

Ph

ysi

cal

Th

erap

y,

Neu

rolo

gy

, N

euro

psy

cho

log

y,

and

Neu

rora

dio

log

y .

Kno

wle

dge

Tran

sfer

and

Cap

acity

Bui

ldin

g A

ctiv

ities

of t

he R

ural

and

Rem

ote

Mem

ory

Clin

icR

ural

and

Rem

ote

Mem

ory

Clin

ic D

ata

Team

: Deb

ra M

orga

n, C

hand

ima

Kar

unan

ayak

e, R

ob B

eeve

r, Fr

eda

Ela

sh, a

nd J

ulie

Kos

teni

uk

2009

Jou

rnal

Pub

licat

ions

[1] M

orga

n, D

. et a

l. Im

prov

ing

Acce

ss to

D

emen

tia C

are:

Dev

elop

men

t and

Eva

luat

ion

of a

R

ural

and

Rem

ote

Mem

ory

Clin

ic.

Agi

ng &

Men

tal

Hea

lth, 1

3(1)

, 17-

30.

2009

Con

fere

nce

Pres

enta

tions

[1] M

orga

n, D

. et a

l. Ev

alua

tion

of te

lehe

alth

in a

ru

ral a

nd re

mot

e m

emor

y cl

inic

. The

G

eron

tolo

gica

lSoc

iety

of A

mer

ica

52th

Ann

ual

Sci

entif

ic M

eetin

g, A

tlant

a, G

A, N

ov 1

8-22

, 200

9.[2

] Kirk

A, e

t al.

Des

ign

and

eval

uatio

n of

a

mul

tidis

cipl

inar

y m

emor

y cl

inic

usi

ng te

lehe

alth

tech

nolo

gy to

ser

ve a

rura

l and

rem

ote

popu

latio

n. H

elsi

nki F

inla

nd, J

uly

31, 2

009.

Jou

rnal

of

the

Inte

rnat

iona

l Neu

rops

ycho

logi

cal S

ocie

ty, i

n pr

ess,

200

9.

[3] M

cBai

n, L

. et a

l. Fi

rst N

atio

n lo

ng-te

rm c

are

faci

litie

s in

rura

l and

rem

ote

Sask

atch

ewan

. 8th

C

onfe

renc

e of

the

Can

adia

n R

ural

Hea

lth R

esea

rch

Soc

iety

: Rur

al L

ife, H

ealth

, Env

ironm

ent.

Kin

gsto

n,

ON

, Oct

15-

17, 2

009.

[4] F

orbe

s, D

. et a

l. Li

ght t

hera

py fo

r man

agin

g sy

mpt

oms

of d

emen

tia: A

Coc

hran

e re

view

. A

lzhe

imer

’s A

ssoc

iatio

n 20

09 In

tern

atio

nal

Con

fere

nce

on A

lzhe

imer

’s D

isea

se, V

ienn

a, A

ustri

a,

July

11-

16, 2

009.

[5

] Cam

mer

, A. e

t al.

Tran

sitio

ns fr

om “

hom

e”to

“t

he h

ome”

: Rhe

toric

and

pol

icy

in C

anad

ian

long

-term

car

e. C

ongr

ess

2009

: Con

gres

s of

the

Hum

aniti

es a

nd S

ocia

l Sci

ence

s, C

arle

ton

Uni

vers

ity,

Otta

wa,

ON

, May

23-

31, 2

009.

[6] F

orbe

s, D

et a

l.Lo

omin

g de

men

tia c

risis

: Is

rura

l hom

e ca

re re

ady?

22t

h A

nnua

l Res

earc

h C

onfe

renc

e. A

rthur

Lab

att F

amily

Sch

ool o

f Nur

sing

, U

nive

rsity

of W

este

rn O

ntar

io a

nd th

e Io

ta O

mic

ron

Cha

pter

of S

igm

a Th

eta

Tau

Inte

rnat

iona

l Hon

or

Soc

iety

of N

ursi

ng, M

ay 1

, 200

9, L

ondo

n, O

N.

2008

Jou

rnal

Pub

licat

ions

[1] C

ross

ley,

M. e

t al.

Inte

rdis

cipl

inar

y re

sear

ch a

nd in

terp

rofe

ssio

nalc

olla

bora

tive

care

in

a m

emor

y cl

inic

for r

ural

and

nor

ther

n re

side

nts

of W

este

rn C

anad

a: A

uni

que

trai

ning

gro

und

for c

linic

al p

sych

olog

y gr

adua

te s

tude

nts.

Aus

tralia

n Jo

urna

l of

Psy

chol

ogy,

43(

4), 2

31-2

38.

[2] S

teve

, T. e

t al.

Med

icat

ion

use

in p

atie

nts

pres

entin

g to

a ru

ral a

nd re

mot

e m

emor

y cl

inic

(pee

r-re

view

ed le

tter t

o th

e ed

itor)

. Can

adia

n Jo

urna

l of N

euro

logi

cal S

cien

ces,

35,

66

9-67

1.[3

] McE

ache

rn, W

. et a

l. U

tility

of t

eleh

ealth

in fo

llow

ing

cogn

ition

in m

emor

y cl

inic

pa

tient

s fr

om ru

ral a

nd re

mot

e ar

eas.

Can

adia

n Jo

urna

l of N

euro

logi

cal S

cien

ces,

35,

64

3-64

6.[4

] For

bes,

D. e

t al.

Avai

labi

lity

and

acce

ptab

ility

of C

anad

ian

hom

e an

d co

mm

unity

-ba

sed

serv

cies

: Per

spec

tives

of f

amily

car

egiv

ers

of p

erso

ns w

ith d

emen

tia.

Hom

e H

ealth

Car

e Se

rvic

es Q

uart

erly

, 27(

2), 7

5-99

. [5

] For

bes,

D. e

t al.G

ende

r diff

eren

ces

in u

se a

nd a

vaila

bilit

y of

hom

e an

d co

mm

unity

-ba

sed

heal

th s

ervi

ces

for p

eopl

e w

ith d

emen

tia.

Can

adia

n Jo

urna

l of N

ursi

ng R

esea

rch,

40

(1),

38-5

9.

2008

Con

fere

nce

Pres

enta

tions

6thIn

tern

atio

nal S

ympo

sium

: Pub

lic H

ealth

& th

e A

gric

ultu

ral R

ural

Ecos

yste

m.

Oct

19-

23, 2

008,

Sas

kato

on, S

K.

[1] M

orga

n, D

. et a

l. Th

e R

ural

and

Rem

ote

Mem

ory

Clin

ic: A

n ov

ervi

ew.

[2] D

alBe

llo-H

aas,

V. e

t al.

Rur

al a

nd r

emot

e de

men

tia c

are

chal

leng

es a

nd n

eeds

: For

mal

and

in

form

al c

are

prov

ider

per

spec

tives

.[3

] C

ross

ley,

M. e

t al.

Pre

-clin

ic te

leco

nfer

enci

ng p

repa

res

fam

ilies

and

hea

lth p

rofe

ssio

nals

for a

su

bseq

uent

Rur

al a

nd R

emot

e M

emor

y C

linic

ass

essm

ent.

[4]

Cam

mer

, A. e

t al.

Eva

luat

ion

inte

rvie

ws

of a

Rur

al a

nd R

emot

e M

emor

y C

linic

.[5

] McB

ain,

L. e

t al.

Eva

luat

ing

patie

nt, c

areg

iver

, and

tele

heal

thco

ordi

nato

r res

pons

es to

a

tele

heal

th-a

ssis

ted

Rur

al a

nd R

emot

e M

emor

y C

linic

.[6

] H

olfe

ld, L

. et a

l. Is

a n

urse

nec

essa

ry?

The

role

of a

n R

N in

an

inte

grat

ed in

terp

rofe

ssio

nalR

ural

an

d R

emot

e M

emor

y C

linic

.[7

] Kirk

, A. e

t al.

Util

ity o

f tel

ehea

lthin

follo

win

g co

gniti

on in

mem

ory

clin

ic p

atie

nts

from

rur

al a

ndre

mot

e ar

eas.

[8] A

ndre

ws,

M.E

. et a

l. A

n ex

plor

atio

n of

dem

entia

car

e in

Nor

ther

n Sa

skat

chew

an: T

he p

ersp

ectiv

es

of N

orth

ern

regi

ster

ed n

urse

s.[9

] And

rew

s, M

.E. e

t al.

Nor

th-s

outh

diff

eren

ces

in ru

ral n

ursi

ng s

ervi

ces

for d

emen

tia c

areg

ivin

gin

C

anad

a.

Can

adia

n A

ssoc

iatio

n on

Ger

onto

logy

37t

hA

nnua

l Sci

entif

ic &

Edu

catio

nal M

eetin

g, O

ct 2

3-26

, 200

8,

Lond

on, O

N.

[10]

For

bes,

D. e

t al.

Sym

posi

um:

Rol

e of

Hom

e C

are

in D

emen

tia C

are

Stud

y.[1

1] M

arkl

e-R

eid,

M. e

t al.

Test

ing

a Th

eore

tical

Mod

el to

Exp

lain

Com

mun

ity S

ervi

ce U

se b

y U

npai

d C

areg

iver

of P

erso

ns w

ith D

emen

tia.

[12]

Haw

rani

k, P

. et a

l. Th

e Pe

rspe

ctiv

es o

f Rur

al F

orm

al a

nd In

form

al C

areg

iver

s on

Com

mun

ity

Dem

entia

Ser

vice

s.[1

3] J

anse

n, L

. et a

l. En

hanc

ing

In-h

ome

Car

e of

Per

sons

with

Dem

entia

: Per

spec

tives

of F

orm

al

Com

mun

ity S

ervi

ce P

rovi

ders

.[1

4] F

orbe

s, D

. et a

l. R

ole

of h

ome

care

in d

emen

tia c

are

stud

y: L

esso

ns le

arne

d.[1

5] C

amm

er, A

., &

Mor

gan,

D.

Neg

otia

ting

cultu

rally

inco

ngru

ent s

yste

ms:

The

pro

cess

of a

cces

sing

de

men

tia c

are

for

Abo

rigin

al o

lder

adu

lts li

ving

in N

orth

ern

Sask

atch

ewan

.C

anad

ian

Asso

ciat

ion

on

Ger

onto

logy

37t

hAn

nual

Sci

entif

ic &

Edu

catio

nal M

eetin

g.

[16]

Kirk

A. e

t al.

Des

ign

of a

mul

tidis

cipl

inar

y m

emor

y cl

inic

usi

ng te

lehe

alth

tech

nolo

gy to

ser

ve a

ru

ral a

nd r

emot

e po

pula

tion.

XIIt

hC

ongr

ess

of th

e E

urop

ean

Fede

ratio

n of

Neu

rolo

gica

l Soc

ietie

s,

Aug

ust 2

5, 2

008,

Mad

rid, S

pain

. E

urop

ean

Jour

nal o

f Neu

rolo

gy15

: S

uppl

emen

t 3:2

23, 2

008.

[17]

For

bes,

D. e

t al.

How

gen

der i

nflu

ence

s us

e of

com

mun

ity-b

ased

ser

vice

s in

per

sons

with

de

men

tia.A

lzhe

imer

’s A

ssoc

iatio

n In

tern

atio

nal C

onfe

renc

e on

Alz

heim

er’s

Dis

ease

, Chi

cago

, Illi

nois

, Jul

y 26

-31,

200

8.

[18]

For

bes,

S. e

t al.

Effe

cts

of p

hysi

cal a

ctiv

ity p

rogr

ams

on p

erso

ns w

ith d

emen

tia: A

Coc

hran

e re

view

.Al

zhei

mer

’s A

ssoc

iatio

n In

tern

atio

nal C

onfe

renc

e, C

hica

go, J

uly

26-3

1.[1

9] F

orbe

s, D

. et a

l. W

hat i

s ne

eded

to p

reve

nt d

emen

tia fr

om c

ausi

ng a

hea

lth a

nd e

cono

mic

cri

sis:

Pe

rcep

tions

of f

amily

car

egiv

ers.

Inte

rnat

iona

l Nur

sing

Res

earc

h C

onfe

renc

e, J

erus

alem

, Isr

ael,

June

30

–Ju

ly 3

, 200

8.[2

0] K

irk A

. et a

l. D

esig

n of

a m

ultid

isci

plin

ary

rura

l and

rem

ote

mem

ory

clin

ic u

sing

tele

heal

thte

chno

logy

. Pr

esen

ted

at th

e XL

IIIrd

Con

gres

s of

the

Can

adia

n N

euro

logi

cal S

cien

ces

Fede

ratio

n, V

icto

ria,

Briti

sh C

olum

bia,

Jun

e 19

, 200

8. T

he C

anad

ian

Jour

nal o

f Neu

rolo

gica

l Sci

ence

s, 3

5:2(

S1):

S38

, 200

8.[2

1] C

amm

er, A

., &

Mor

gan,

D.

Swim

min

g th

e riv

er o

f car

e: A

par

ticip

ant-l

ed g

roup

act

ivity

as

a da

ta

colle

ctio

n st

rate

gy in

a g

roun

ded

theo

ry s

tudy

.In

nova

tions

in Q

ualit

ativ

e R

esea

rch

Con

fere

nce,

Jun

e 3-

4, 2

008,

Uni

vers

ity o

f Sas

katc

hew

an, S

aska

toon

, SK.

[22]

Cam

mer

, A.,

et a

l. Th

e pr

oces

s of

acc

essi

ng d

emen

tia c

are

for

Abo

rigin

al o

lder

adu

lts li

ving

in

Nor

ther

n Sa

skat

chew

an.

Sask

atch

ewan

Ass

ocia

tion

of H

ealth

Org

aniz

atio

ns(S

AH

O) C

onfe

renc

e, A

pril

13-1

5, 2

008,

Reg

ina,

SK.

[23]

Mor

gan,

D. e

t al.

Taki

ng th

e H

it: E

xper

ienc

es o

f phy

sica

l ass

ault

by s

peci

al c

are

aide

s in

long

-te

rm c

are.

Sask

atch

ewan

Ass

ocia

tion

of H

ealth

Org

aniz

atio

ns(S

AH

O) C

onfe

renc

e, A

pril

13-1

5, 2

008,

R

egin

a, S

K.[2

4] M

orga

n, D

. et a

l. Th

e de

velo

pmen

t and

eva

luat

ion

of a

tele

heal

th-s

uppo

rted

Rur

al a

nd R

emot

e M

emor

y C

linic

.S

aska

tche

wan

Ass

ocia

tion

of H

ealth

Org

aniz

atio

ns(S

AHO

) Con

fere

nce,

Apr

il 13

-15,

200

8,

Reg

ina,

SK.

[30=

=25]

For

bes,

D. e

t al.

Ava

ilabi

lity

and

acce

ptab

ility

of C

anad

ian

hom

e-an

d co

mm

unity

-bas

ed s

ervi

ces:

Pe

rspe

ctiv

es o

f fam

ily c

areg

iver

s of

per

sons

with

dem

entia

. Brid

ging

Par

tner

ship

s in

Agi

ng &

Reh

abilit

atio

n R

esea

rch,

Lon

don,

ON

, Feb

rura

ry8,

200

8.

Inte

rnat

iona

l Neu

rops

ycho

lgic

alSo

ciet

y A

nnua

l Mee

ting,

Feb

6-9

, 200

8, W

aiko

loa,

Haw

aii:

[26]

D’A

rcy,

C. e

t al.

Esta

blis

hing

and

eva

luat

ing

an in

terp

rofe

ssio

nalR

ural

and

Rem

ote

Mem

ory

Clin

ic: M

akin

g tr

ansd

isci

plin

ary

colla

bora

tion

wor

k.[2

7] C

ross

ley,

M. e

t al.

Inte

rpro

fess

iona

ldia

gnos

is in

a m

emor

y cl

inic

for r

ural

and

rem

ote

resi

dent

s:

The

cont

ribut

ions

of c

linic

al n

euro

psyc

holo

gy a

re e

nhan

ced

with

in th

e co

ntex

t of a

div

erse

and

in

nova

tive

heal

th-c

are

team

.[2

8] P

oock

, J. e

t al.

Inte

rpro

fess

iona

lres

earc

h in

a ru

ral a

nd re

mot

e m

emor

y cl

inic

: The

rol

e of

ne

urop

sych

olog

y in

col

labo

rativ

e re

sear

ch o

n di

ffere

ntia

l dia

gnos

is in

ear

ly s

tage

dem

entia

.[2

9] L

antin

g, S

. et a

l. M

odify

ing

neur

opsy

chol

ogic

al a

sses

smen

t pro

toco

ls fo

r ind

ivid

uals

ref

erre

d to

a

rura

l and

rem

ote

mem

ory

clin

ic: I

ncor

pora

ting

insi

ghts

and

rese

arch

met

hods

from

hum

an

geog

raph

y an

d cu

ltura

l ant

hrop

olog

y[3

0] L

antin

g, S

. et a

l. Th

e cl

inic

al u

tility

of t

wo

mod

ified

scr

eeni

ng m

easu

res

in th

e de

tect

ion

of

cogn

itive

impa

irmen

t and

dem

entia

in C

anad

ian

Abo

rigi

nal s

enio

rsre

ferr

ed to

a ru

ral a

nd re

mot

e m

emor

y cl

inic

: A c

ase

stud

y ap

proa

ch.

2007

Jou

rnal

Pub

licat

ions

[1] M

orga

n, D

. et a

l. Th

e po

tent

ial o

f gai

t ana

lysi

s to

con

trib

ute

to d

iffer

entia

l dia

gnos

is o

f ear

ly

stag

e de

men

tia: C

urre

nt re

sear

ch a

nd fu

ture

dir

ectio

ns.

Can

adia

n Jo

urna

l on

Agi

ng,2

6(1)

, 19-

32. 2007

Con

fere

nce

Pres

enta

tions

Ger

onto

logi

calS

ocie

ty o

f Am

eric

a 60

thA

nnua

l Sci

entif

ic M

eetin

g, S

an F

ranc

isco

, CA

, Nov

16-

20, 2

007:

[1] C

amm

er, A

., et

al.

Neg

otia

ting

cultu

rally

inco

ngru

ent s

yste

ms:

The

pro

cess

of a

cces

sing

de

men

tia c

are

for a

borig

inal

old

er a

dults

livi

ng in

nor

ther

n Sa

skat

chew

an.

[2] M

uelle

r C. N

ursi

ng le

ader

ship

and

nur

sing

hom

e cu

lture

cha

nge

[3] M

orga

n, D

. et a

l. Th

e ro

le o

f nur

sing

man

ager

s in

man

agin

g ch

ange

in ru

ral n

ursi

ngho

mes

: C

reat

ing

and

sust

aini

ng s

peci

al c

are

units

[4] M

cKen

zie-

Gre

en, B

. The

rela

tions

hip

betw

een

wor

k co

mpl

exity

and

nur

se tu

rnov

er in

long

-te

rm c

are

[5] M

cGilt

on, K

. Aga

inst

all

odds

: How

do

nurs

e su

perv

isor

s in

long

-term

car

e en

viro

nmen

ts

man

age

to g

et th

roug

h th

eir d

ay?

[6] F

orbe

s, D

., et

al.

Ava

ilabi

lity,

acc

essi

bilit

y, a

nd a

ccep

tabi

lity

of h

ome

and

com

mun

ity-b

ased

se

rvic

es: P

ersp

ectiv

es o

f unp

aid

care

give

rs o

f per

sons

with

dem

entia

.C

anad

ian

Ass

ocia

tion

on G

eron

tolo

gy 3

6th

Ann

ual S

cien

tific

and

Edu

catio

nal M

eetin

g,C

alga

ry, A

B, N

ov 1

-3, 2

007:

[7] F

orbe

s, D

., et

al.

How

are

we

doin

g in

mee

ting

the

need

s of

per

sons

with

dem

entia

and

thei

r un

paid

car

egiv

ers?

[8] B

erge

n, A

., M

orga

n, D

., G

reen

, K.,

Stew

art,

N.,

Nor

man

d, S

. D

emen

tia c

are

for r

esid

ents

in ru

ral

nurs

ing

hom

es: A

n ev

alua

tion

of th

e en

hanc

ing

care

pro

gram

. [9

] Mor

gan,

D. e

t al.

How

can

we

help

you

?: A

n an

alys

is o

f ref

errin

g pr

oble

ms

to a

rura

l m

emor

y cl

inic

from

the

pers

pect

ives

of t

he p

hysi

cian

and

the

patie

nt/c

areg

iver

.[1

0] M

arkl

e-R

eid,

M. e

t al.

Test

ing

a th

eore

tical

mod

el to

exp

lain

com

mun

ity s

ervi

ce u

se b

y un

paid

car

egiv

ers

of p

erso

ns w

ith d

emen

tia.

McM

aste

r Sch

ool o

f Nur

sing

Ann

ual R

esea

rch

Day

, M

cMas

ter U

nive

rsity

, Ham

ilton

, ON

.O

ctob

er 4

, 200

7 [1

1] C

amm

er, A

. et a

l. Im

prov

ing

Acc

ess

to E

arly

Ass

essm

ent a

nd T

reat

men

t of D

emen

tia:

Eval

uatio

n of

a T

eleh

ealth

Sup

port

ed M

ultid

isci

plin

ary

Mem

ory

Clin

ic fo

r R

ural

and

Rem

ote

Seni

ors.

Can

adia

n C

oalit

ion

for S

enio

rs’M

enta

l Hea

lth, M

issi

ssau

ga, S

ept 2

4-25

th, 2

007.

[12]

Cam

mer

, A.,

et a

l. Sw

imm

ing

the

river

of c

are:

The

use

of a

par

ticip

ant-d

irect

ed g

roup

ac

tivity

as

a da

ta c

olle

ctio

n to

ol fo

r a g

roun

ded

theo

ry p

roje

ct.8

thA

dvan

ces

in Q

ualit

ativ

e M

etho

ds C

onfe

renc

e, In

tern

atio

nal I

nstit

ute

for Q

ualit

ativ

e M

etho

dolo

gy, B

anff,

AB,

Sep

tem

ber 2

1-24

, 200

7.

[13]

For

bes,

Det

al.

Sym

posi

um: S

uppo

rtin

g C

areg

iver

s in

Dem

entia

Car

e (4

pap

ers)

. Fe

stiv

al o

f In

tern

atio

nal C

onfe

renc

es o

n C

areg

ivin

g, D

isab

ility

, Agi

ng, a

nd T

echn

olog

y.To

ront

o, O

N,

June

16-

19, 2

007.

[14]

Tho

rnhi

ll, T

. et a

l. T

he U

se a

nd U

tility

of t

he T

imed

Up-

and-

Go

(TU

G) i

n C

omm

unity

-dw

ellin

g O

lder

Adu

lts w

ith C

ogni

tive

Impa

irm

ents

.W

orld

Con

gres

s of

Phy

sica

l The

rapy

,Va

ncou

ver,

B.C

., Ju

ne 2

-6, 2

007

[15]

For

bes,

D. e

t al.

Can

adia

ns w

ith D

emen

tia: U

se o

f Hea

lth C

are

Serv

ices

.C

eleb

ratin

g R

esea

rch

and

Inno

vatio

n in

Ach

ievi

ng N

ursi

ng E

xcel

lenc

e (2

0th

Ann

ual R

esea

rch

Con

fere

nce)

, U

nive

rsity

of W

este

rn O

ntar

io, L

ondo

n, O

N, A

pril

13, 2

007.

[16]

Lan

ting,

S.,

et a

l. T

he G

rass

hopp

ers

and

Gee

se T

est:

A m

odifi

ed n

euro

psyc

holo

gica

l m

easu

re fo

r ass

essi

ng s

eman

tic m

emor

y in

a R

ural

and

Rem

ote

Mem

ory

Clin

ic.

Inte

rnat

iona

l N

euro

psyc

holo

gica

l Soc

iety

35t

hAn

nual

Mee

ting,

Por

tland

, Ore

gon,

Feb

7 –

10, 2

007.

2006

Jou

rnal

Pub

licat

ions

[1] F

orbe

s, e

t al.

Rur

al a

nd u

rban

Can

adia

ns w

ith d

emen

tia: U

se o

f hea

lth c

are

serv

ices

.Can

adia

n Jo

urna

l on

Agi

ng, 2

5(3)

, 321

-330

.[2

] McB

ain,

L.e

tal.

Tele

heal

th, g

eogr

aphy

, and

juri

sdic

tion:

Issu

es o

f hea

lth c

are

deliv

ery

in n

orth

ern

Sask

atch

ewan

.Can

adia

n W

oman

Stu

dies

, 24(

4), 1

23-1

29.

2006

Con

fere

nce

Pres

enta

tions

Alz

heim

er S

ocie

ty o

f Can

ada

28th

Nat

iona

l Con

fere

nce.

Tor

onto

, ON

. Nov

6-7

, 20

06:

[1] M

orga

n, D

. et a

l. Te

lehe

alth

vid

eoco

nfer

enci

ng in

a R

ural

and

Rem

ote

Mem

ory

Clin

ic: F

amily

and

Site

Coo

rdin

ator

eva

luat

ion

[2] M

orga

n, D

etal

. Bar

rier

s to

nur

sing

aid

e pa

rtic

ipat

ion

in a

stu

dy o

f res

iden

t ag

gres

sion

in lo

ng-te

rm c

are.

[3] B

erge

n, A

. et a

l. O

rgan

izat

iona

l cha

nge

in ru

ral l

ong-

term

car

e fa

cilit

ies:

An

impl

emen

tatio

n ev

alua

tion

of a

pro

gram

des

igne

d to

add

ress

the

need

s of

re

side

nts

with

dem

entia

.C

anad

ian

Soci

ety

of T

eleh

ealth

, Edm

onto

n, A

B. O

ctob

er 1

5-17

, 200

6[4

] Mor

gan,

D. e

t al.

Satis

fact

ion

and

conv

enie

nce

of te

lehe

alth

vers

us in

-per

son

follo

w-u

p ap

poin

tmen

ts in

pat

ient

s an

d ca

regi

vers

refe

rred

to a

rura

l and

rem

ote

mem

ory

clin

ic.*

Rec

eive

d C

oncu

rren

t Ses

sion

Pod

ium

Aw

ard

[5] M

cBai

n, L

. et a

l. O

verc

omin

g th

e ch

alle

nges

of d

ista

nce:

The

rol

e of

tele

heal

thco

ordi

nato

rs in

a ru

ral a

nd re

mot

e m

emor

y cl

inic

. 59

thA

nnua

l Sci

entif

ic M

eetin

g: E

duca

tion

and

the

Ger

onto

logi

calI

mag

inat

ion.

Th

e G

eron

tolo

gica

lSoc

iety

of A

mer

ica,

Dal

las,

Tex

as.N

ov 1

6-20

, 200

6.

[6] M

orga

n, D

., et

al.

Phy

sica

l agg

ress

ion

tow

ard

nurs

ing

aide

s: F

ocus

sing

on

care

give

r “er

ror”

mas

ks s

yste

mic

and

org

aniz

atio

nal f

acto

rs.

[7] F

orbe

s, D

.A. e

t al.

Can

adia

ns w

ith d

emen

tia: U

se o

f hea

lth c

are

serv

ices

[8] F

orbe

s, D

. et a

l. A

vaila

bilit

y an

d qu

ality

of h

ealth

car

e re

ceiv

ed b

y pe

rson

s w

ith d

emen

tia.

Alzh

eim

er S

ocie

ty o

f Can

ada

28th

Nat

iona

l Con

fere

nce:

Alz

heim

er

Res

earc

h an

d In

nova

tion,

Yes

terd

ay, T

oday

, and

Tom

orro

w, T

oron

to, O

N. N

ovem

ber

6-7,

200

6.[9

] Cam

mer

, A. e

t al.

Pers

onal

stig

ma

vers

us c

ultu

ral a

nd h

isto

rical

con

text

: B

arri

ers

to d

emen

tia c

are

in N

orth

ern

vers

us ru

ral S

aska

tche

wan

com

mun

ities

.Se

vent

h N

atio

nal C

onfe

renc

e of

the

Can

adia

n R

ural

Hea

lth R

esea

rch

Soc

iety

, Pr

ince

G

eorg

e, B

C.

Oct

ober

19-

21, 2

006.

[1

0] K

irk, A

. et a

l. M

ini-M

enta

l Sta

te E

xam

inat

ion

scor

es d

iffer

whe

n ad

min

iste

red

via

tele

heal

thco

mpa

red

with

adm

inis

trat

ion

in p

erso

n to

pat

ient

s w

ith e

arly

de

men

tia.

XLI

stC

anad

ian

Con

gres

s of

Neu

rolo

gica

l Sci

ence

s, J

une

16, 2

006,

M

ontre

al, Q

uebe

c. T

he C

anad

ian

Jour

nal o

f Neu

rolo

gica

l Sci

ence

s.

2005

Jou

rnal

Pub

licat

ions

[1] M

orga

n, D

. et a

l. D

emen

tia c

are

in ru

ral a

nd re

mot

e ar

eas:

The

firs

t yea

r of a

CIH

R N

ew

Emer

ging

Tea

m.

Can

adia

n Jo

urna

l of N

ursi

ng R

esea

rch,

37(

1), 1

77-1

82

2003

-200

5 C

onfe

renc

e Pr

esen

tatio

nsTh

e 58

thA

nnua

l Sci

entif

ic M

eetin

g of

the

Ger

onto

logi

calS

ocie

ty o

f Am

eric

a, O

rland

o, N

ov. 1

8-22

, 200

5.[1

] Mor

gan,

D. e

t al.

Dev

elop

men

t and

eva

luat

ion

of a

mul

tidis

cipl

inar

y ru

ral a

nd r

emot

e m

emor

y cl

inic

with

pre

-and

pos

t-ass

essm

ent v

ia te

lehe

alth

.[2

] Mor

gan,

D. e

t al.

Dem

entia

car

e pr

actic

es a

nd in

form

atio

n ne

eds

of ru

ral p

hysi

cian

and

non

-ph

ysic

ian

com

mun

ity-b

ased

car

e pr

ovid

ers.

[3] F

orbe

s, D

. et a

l. N

on-p

harm

acol

ogic

al s

trat

egie

s fo

r m

anag

ing

agita

ted

beha

vior

sas

soci

ated

with

dem

entia

: A s

yste

mat

ic r

evie

w.

Can

adia

n A

ssoc

iatio

n on

Ger

onto

logy

34t

hA

nnua

l Sci

entif

ic &

Edu

catio

n M

eetin

g, H

alifa

x, N

S,

Oct

20-

23, 2

005.

[4] M

cBai

n, L

. et a

l. A

cces

sing

tele

heal

thse

rvic

es: R

ecog

nizi

ng th

e ch

alle

nges

faci

ng o

lder

ad

ults

in n

orth

ern

and

rem

ote

com

mun

ities

. Cam

mer

, A.,

& M

orga

n, D

. Fo

rmat

ive

and

proc

ess

eval

uatio

n in

terv

iew

s fo

r a m

ultid

isci

plin

ary

rura

l and

rem

ote

mem

ory

clin

ic.

[5] L

antin

g, S

. et a

l. Pa

rtne

ring

with

an

Abo

rigin

al G

rand

mot

her’s

gro

up to

dev

elop

cul

tura

lly

rele

vant

ass

essm

ent p

roto

cols

for a

Rur

al a

nd R

emot

e M

emor

y C

linic

.B

ridgi

ng th

e D

ista

nce:

6th

Con

fere

nce

of th

e C

anad

ian

Rur

al H

ealth

Res

earc

h So

ciet

y,Q

uebe

c C

ity, O

ctob

er 2

7-29

, 200

5.[6

] Cam

mer

, A. e

t al.

Met

hodo

logi

cal c

halle

nges

and

dec

isio

ns in

exa

min

ing

dem

entia

car

e ac

cess

issu

es fo

r sen

iors

in N

orth

ern

Sask

atch

ewan

.[7

] Lan

ting,

S. e

t al.

Par

tner

ing

with

Abo

rigi

nal G

rand

mot

hers

to in

form

the

deve

lopm

ent o

f a

cultu

rally

rele

vant

dem

entia

clin

ic p

roto

col.

[8] A

ndre

ws,

M. e

t al.

Exam

inin

g st

ress

leav

e in

rura

l and

rem

ote

Can

adia

n R

Ns.

And

rew

s, M

., D

’Arc

y, C

., P

enz,

K.,

Mor

gan,

D.,

& St

ewar

t, N

. M

ale

nurs

es in

rura

l and

rem

ote

Can

ada.

Can

adia

n A

ssoc

iatio

n on

Ger

onto

logy

Ann

ual S

cien

tific

Mee

ting:

Spe

cial

Joi

nt C

AG

/CIH

R

Sym

posi

um, H

alifa

x, O

ctob

er 2

0-23

, 200

5.

[9] M

orga

n, D

. et a

l. F

rom

con

cept

ion

to b

irth:

Dev

elop

men

t of t

he te

am a

nd N

ET re

sear

ch p

roje

cts

[10]

Bie

m, J

. et a

l. Ev

alua

tion

of a

tele

heal

th-s

uppo

rted

mul

tidis

cipl

inar

y m

emor

y cl

inic

: Tr

adin

g of

f val

idity

, gen

eral

izeb

ility

and

feas

ibili

ty in

hea

lth s

ervi

ces

rese

arch

[11]

Mor

gan,

D. e

t al.

Des

ign

of a

rura

l and

rem

ote

mem

ory

clin

ic.

[12]

Cro

ssle

y, M

. et a

l. N

ET r

efle

ctio

ns: W

hat h

ave

we

lear

ned

and

whe

re w

ill it

take

us?

[13]

Har

der,

S. e

t al.

NET

effe

cts:

An

expl

osio

n of

suc

cess

ful c

olla

bora

tion

Alz

heim

er S

ocie

ty o

f Can

ada

27th

Nat

iona

l Con

fere

nce,

Reg

ina,

SK

(Apr

il 7-

9, 2

005)

.[1

4] M

orga

n, D

. et a

l. C

are

of ru

ral s

enio

rs w

ith d

emen

tia: C

ontin

uing

edu

catio

n ne

eds

of

phys

icia

n an

d no

n-ph

ysic

ian

com

mun

ity-b

ased

hea

lth c

are

prov

ider

s.[1

5] M

orga

n, D

. et a

l. “S

trat

egie

s to

Impr

ove

the

Car

e of

Per

sons

with

Dem

entia

in R

ural

and

Rem

ote

Are

as”:

CIH

R N

ew E

mer

ging

Tea

m R

esea

rch

Prog

ram

.[1

6] F

orbe

s, D

. et a

l. O

lder

Can

adia

ns w

ith D

emen

tia: U

se o

f Hea

lth S

ervi

ces.

[17]

Lan

ting,

S. e

t al.

Par

tner

ing

with

abo

rigin

al s

enio

rs to

dev

elop

a c

ultu

rally

app

ropr

iate

as

sess

men

t pro

toco

l for

cog

nitiv

e im

pair

men

t and

dem

entia

in a

rura

l and

rem

ote

mem

ory

clin

ic.

[18]

Poo

ck, J

. et a

l. A

sses

sing

gai

t and

dua

l-tas

k pe

rfor

man

ce in

pat

ient

s re

ferr

ed to

a m

emor

y cl

inic

. [1

9] L

ejba

k, L

. et a

l. R

evie

w o

f the

mos

t rec

ent c

linic

al g

uide

lines

for d

iagn

osin

g th

em

ajor

de

men

tias.

G

eron

tolo

gica

lSoc

iety

of A

mer

ica,

Was

hing

ton,

DC

. (N

ovem

ber

21-2

5, 2

004)

. [2

0] M

orga

n, D

. et a

l. Ph

ysic

ally

agg

ress

ive

beha

viou

r tow

ard

nurs

ing

aide

s in

rura

l nur

sing

ho

mes

with

and

with

out S

peci

al C

are

Uni

ts.

[21]

Mor

gan,

D. e

t al.

Can

adia

ns w

ith A

lzhe

imer

Dis

ease

: Pre

vale

nce

and

utili

zatio

n of

hea

lth

care

ser

vice

s.

Can

adia

n A

ssoc

iatio

n on

Ger

onto

logy

, Vic

tori

a, B

C. (

Oct

21-

23, 2

004)

. [2

2] M

orga

n, D

. et a

l. D

evel

opm

ent a

nd e

valu

atio

n of

a m

ultid

isci

plin

ary

one-

stop

mem

ory

clin

ic fo

r rur

al a

nd re

mot

e se

nior

s ut

ilizi

ng te

lehe

alth

for p

re-a

nd p

ost-c

linic

ass

essm

ent.

[2

3] C

ross

ley,

M. e

t al.

Part

neri

ng w

ith a

borig

inal

sen

iors

and

rura

l and

rem

ote

care

give

rs to

de

velo

p a

cultu

rally

sen

sitiv

e as

sess

men

t pro

toco

l for

cog

nitiv

eim

pair

men

t and

dem

entia

.Fi

fth C

anad

ian

Rur

al H

ealth

Res

earc

h So

ciet

y C

onfe

renc

e, S

udbu

ry, O

N. (

Oct

ober

21-

25,

2004

).

[2

4] L

antin

g, S

. et a

l. D

evel

opin

g an

d ev

alua

ting

a cu

ltura

lly s

ensi

tive

prot

ocol

for

the

dete

ctio

n of

cog

nitiv

e im

pairm

ent a

nd d

emen

tia th

roug

h a

part

ners

hip

with

abo

rigi

nal s

enio

rs.

[25]

Cam

mer

, A. e

t al.

Impa

ct o

f com

mun

ity in

volv

emen

t on

stud

y de

sign

: Dev

elop

men

t and

eval

uatio

n of

a r

ural

and

rem

ote

mem

ory

clin

ic.

Nat

iona

l Nur

sing

Res

earc

h C

onfe

renc

e“T

rans

form

ing

Hea

lth C

are

thro

ugh

Nur

sing

Res

earc

h:

Mak

ing

it H

appe

n,”

Lond

on, O

N. (

May

, 200

4).

[2

6] S

tew

art,

N. e

t al.

Wor

kpla

ce s

afet

y in

rura

l dem

entia

car

e se

tting

s.

[27]

And

rew

s, M

.E. e

t al.

The

sole

RN

: Wor

king

alo

ne in

rura

l and

rem

ote

Can

ada.

Fifth

Inte

rnat

iona

l Sym

posi

um: F

utur

e of

Rur

al P

eopl

es, S

aska

toon

. (O

ctob

er, 2

003)

. [2

8] C

amm

er, A

. et a

l. C

reat

ing

and

sust

aini

ng d

emen

tia s

peci

al c

are

units

in r

ural

nur

sing

ho

mes

: Cha

ract

eris

tics

of s

ucce

ssfu

l uni

ts.

[29]

D’A

rcy,

C. e

t al.

Job

satis

fact

ion

amon

g nu

rses

in ru

ral a

nd re

mot

e ar

eas

of C

anad

a.[3

0] B

iem

, J. e

t al.

Bre

aks

in c

ontin

uity

of c

are:

The

rura

l sen

ior t

rans

ferr

ed fo

r med

ical

car

e un

der r

egio

naliz

atio

n.

[31]

Kirk

, D. e

t al.

Min

i-Men

tal S

tate

Exa

min

atio

n sc

ores

are

sig

nific

antly

low

er w

hen

adm

inis

tere

d vi

a te

lehe

alth

(vid

eoco

nfer

enci

ng) t

han

whe

n ad

min

iste

red

in p

erso

n to

pat

ient

s w

ith e

arly

dem

entia

. W

orld

Con

gres

s of

Neu

rolo

gy, S

ydne

y, A

ustra

lia, N

ov 5

–11

, 200

5. J

ourn

al

of th

e N

euro

logi

cal S

cien

ces,

238

, S29

1-S

292,

200

5.

[32]

Cam

mer

, A. a

l. Is

sues

sur

roun

ding

util

izat

ion

of d

emen

tia c

are

serv

ices

in N

orth

ern

Sask

atch

ewan

. The

Voi

ces

Con

tinue

to S

peak

: CIH

R-IA

PH

Con

fere

nce,

Reg

ina,

Aug

200

5.[3

3] F

orbe

s, D

. et a

l. N

on-p

harm

acol

ogic

al s

trat

egie

s fo

r man

agin

g ag

itate

d be

havi

ours

as

soci

ated

with

dem

entia

: A s

yste

mat

ic r

evie

w.

18th

Ann

ual R

esea

rch

Con

fere

nce,

Uni

t in

Nur

sing

, Div

ersi

ty in

Res

earc

h, U

nive

rsity

of W

este

rn O

ntar

io, L

ondo

n, O

N.

May

6, 2

005.

[34]

Mor

gan,

D. e

t al.

Rur

al n

ursi

ng h

omes

with

and

with

out S

peci

al C

are

Uni

ts:

Fam

ilies

’Pe

rcep

tions

of Q

ualit

y of

Car

e .G

eron

otol

ogic

alS

oc. o

f Am

eric

a, S

an D

iego

.[3

5] F

orbe

s, D

. et a

l. Tw

o di

stin

ct s

ubgr

oups

of h

ome

care

: The

inte

rfac

e of

med

ical

and

soc

ial

polic

y.G

loba

l Nur

sing

Sch

olar

ship

Con

fere

nce,

Rom

e (J

une,

200

3).

[36]

Bie

m, H

. J. e

t al.

Cha

rtin

g th

e se

ven

C’s

of c

ontin

uity

of c

are:

The

rur

al s

enio

r tra

nsfe

rred

fo

r med

ical

car

e un

der r

egio

naliz

atio

n.In

tern

atio

nal C

onfe

renc

e on

New

Res

earc

h an

d D

evel

opm

ents

in In

tegr

ated

Car

e. B

arce

lona

, Spa

in, F

ebru

ary

21-2

2, 2

003.K

now

ledg

e Tr

ansf

er –

Jour

nal p

ublic

atio

ns a

nd c

onfe

renc

e pr

esen

tatio

ns

Dat

a C

olle

ctio

n 20

06

Dat

a R

elea

se 1

2007

Dat

a R

elea

se 2

20

08

Dat

a R

elea

se 3

20

09 (P

lann

ed)

Dat

a C

olle

ctio

n 20

03-2

005

Cap

acity

Bui

ldin

g (T

rain

ee re

sear

ch p

roje

cts)

Trai

nee

Res

earc

h Pr

ojec

tsLe

sley

McB

ain

(Hum

an G

eogr

aphy

, Pos

tdoc

tora

te) U

se o

f Geo

grap

hic

Info

rmat

ion

Syst

ems

(GIS

) to

map

hea

lth d

ata

and

to e

xam

ine

impl

icat

ions

of t

eleh

ealth

on ru

ral a

nd re

mot

e he

alth

care

ser

vice

Mar

y E

llen

And

rew

s (N

ursi

ng, P

hD) D

emen

tia c

are

in n

orth

ern

nurs

ing

prac

tice

Sha

wnd

aLa

ntin

g(P

sych

olog

y, P

hD) D

evel

opm

ent o

f a c

ultu

rally

app

ropr

iate

ass

essm

ent p

roto

col t

o de

tect

cog

nitiv

e im

pairm

ent a

nd d

emen

tia in

old

er

Abor

igin

al a

dults

Pat

rick

Cor

ney

(Psy

chol

ogy,

PhD

)Atte

ntio

nalm

echa

nism

s in

nor

mal

agi

ng a

nd e

arly

-sta

ge d

emen

tiaJo

cely

n P

oock

(Psy

chol

ogy,

PhD

) The

effe

cts

of ‘w

alki

ng w

hile

talk

ing’

dual

-task

on

ambu

latio

n in

pat

ient

s w

ith A

lzhe

imer

’s d

isea

se a

nd h

ealth

y ol

der a

dults

Nic

ole

Hau

grud

(Psy

chol

ogy,

PhD

) Str

ateg

y us

e du

ring

spee

ded

verb

al fl

uenc

y ta

sks

in n

orm

al a

ging

and

dem

entia

Allis

on C

amm

er(C

omm

unity

Hea

lth a

nd E

pide

mio

logy

, MS

c) N

egot

iatin

g cu

ltura

lly in

cong

ruen

t hea

lthca

re s

yste

ms:

The

pro

cess

of a

cces

sing

dem

entia

car

e in

nor

ther

n Sa

skat

chew

anA

nita

Ber

gen

(Com

mun

ity H

ealth

and

Epi

dem

iolo

gy, M

Sc)

Dem

entia

car

e fo

r res

iden

ts in

rura

l nur

sing

hom

es: A

pro

cess

eva

luat

ion

of th

e En

hanc

ing

Car

e pr

ogra

mM

arci

e H

eggi

e(M

edic

ine,

Und

ergr

ad) Q

ualit

y of

life

in e

arly

-sta

ge d

emen

tia: L

ongi

tudi

nal a

naly

sis

of p

atie

nt a

nd fa

mily

car

egiv

er ra

tings

Pat

rick

Won

g (M

edic

ine,

Und

ergr

ad) P

redi

ctor

s of

pat

ient

and

car

egiv

er-r

ated

qua

lity

of li

fe in

ear

ly d

emen

tia: C

ogni

tive

func

tion

vs. s

elf-r

ated

mem

ory

And

rew

Was

sef(

Med

icin

e, U

nder

grad

) Com

paris

on o

f rur

al v

sur

ban

refe

rral

s to

a te

rtia

ry c

are

cent

re fo

r neu

rolo

gica

l ass

essm

ent o

f pos

sibl

e de

men

tia: a

fiv

e ye

ar re

tros

pect

ive

revi

ewM

elan

ie F

unk

(Phy

sica

l The

rapy

, Und

ergr

ad) D

evel

opm

ent o

f a p

roto

col f

or lo

ngitu

dina

l ass

essm

ent o

f phy

sica

l fitn

ess

and

gait

in s

enio

rs re

ferr

ed to

a ru

ral

and

rem

ote

mem

ory

clin

icW

enda

line

Van

Bur

en(M

edic

ine,

Und

ergr

ad) U

tility

of t

eleh

ealth

in fo

llow

ing

cogn

ition

in m

emor

y cl

inic

pat

ient

s fr

om ru

ral a

ndre

mot

e ar

eas

Trev

or S

teev

es(M

edic

ine,

Und

ergr

ad) M

edic

atio

n us

e in

pat

ient

s pr

esen

ting

to a

rura

l and

rem

ote

mem

ory

clin

ic

Info

rmat

ion

abou

t pub

licat

ions

and

con

fere

nce

pres

enta

tions

is a

vaila

ble

in th

e S

umm

it bi

nder

s.

Dem

entia

dia

gnos

is a

nd m

anag

emen

t am

ong

rura

l and

rem

ote

prim

ary

care

pro

vide

rs: A

rese

arch

pro

posa

lJu

lie K

oste

niuk

, Deb

ra M

orga

n, A

nthe

aIn

nes,

Joh

n K

eady

, Tur

ner G

oins

, Car

l D’A

rcy,

and

Nor

ma

Stew

art

Obj

ectiv

es•

To Id

entif

y th

e ne

eds

of p

rimar

y ca

re p

rovi

ders

to p

rovi

de a

sses

smen

t and

man

agem

ent o

f dem

entia

w

ithin

thei

r pra

ctic

e se

tting

s, w

ith a

focu

s on

the

parti

cula

r nee

ds o

f rur

al a

nd re

mot

e pr

imar

y ca

re

prov

ider

s.•

To d

evel

op fe

asib

le s

trate

gies

that

add

ress

gap

s in

prim

ary

care

prov

ider

s’de

men

tia c

are.

Res

earc

h Q

uest

ions

1.D

o pr

imar

y ca

re p

rovi

ders

repo

rt pr

actic

ing

dem

entia

car

e (d

etec

tion,

dia

gnos

is, t

reat

men

t, sp

ecia

list

refe

rral,

and

follo

w-u

p) b

ased

on

guid

elin

es fr

om th

e Th

ird C

anad

ian

Con

sens

us c

onfe

renc

e on

the

Dia

gnos

is a

nd T

reat

men

t of D

emen

tia?

2.D

o pr

imar

y ca

re p

rovi

ders

’dem

entia

car

e pr

actic

es,k

now

ledg

e,at

titud

es,c

onfid

ence

, and

sup

port

need

sva

ry b

y:

•ge

ogra

phic

set

ting

(rur

al, r

emot

e, u

rban

)?•

care

pro

visi

on m

odel

(non

prim

ary-

heal

th-c

are-

team

fam

ily p

hysi

cian

, non

prim

ary-

heal

th-c

are-

team

nu

rse

prac

titio

ner,

prim

ary

heal

th-c

are-

team

mem

ber)?

The

prob

lem

of d

emen

tia c

are

in C

anad

a•

Eac

h ye

ar, 6

0,15

0 ne

w c

ases

of d

emen

tia d

evel

op (C

anad

ian

Stu

dy o

f Hea

lth a

nd A

ging

Wor

king

Gro

up, 2

000)

.•

An

estim

ated

64%

of s

enio

rs li

ving

out

side

of l

ong-

term

car

e fa

cilit

ies

have

und

etec

ted

dem

entia

(Ste

rnbe

rg e

t al.

2000

).•

One

Can

adia

n st

udy

foun

d th

at fe

wer

than

50%

of f

amily

phy

sici

ans

wer

e aw

are

of th

e 19

99 C

anad

ian

Con

sens

us C

onfe

renc

e on

Dem

entia

(CC

CD

) gui

delin

es, a

nd p

hysi

cian

s in

dica

ted

that

the

guid

elin

es d

id n

ot

refle

ct th

e re

aliti

es o

f dem

entia

car

e in

thei

r pra

ctic

e ( P

imlo

ttet

al.

2009

).•

Man

y fa

mily

phy

sici

ans

are

not e

ntire

ly c

onfid

ent w

ith p

rovi

ding

dem

entia

car

e, a

nd s

peci

alis

t ref

erra

l rat

es

amon

g de

men

tia p

atie

nts

are

high

(Pim

lott

et a

l. 20

06 &

200

9).

•A

ccor

ding

to th

e Th

ird C

anad

ian

Con

sens

us C

onfe

renc

e on

the

Dia

gnos

is a

nd T

reat

men

t of D

emen

tia

(CC

CD

TD3)

, mos

t pat

ient

s w

ith d

emen

tia c

an b

e as

sess

ed a

nd m

anag

ed a

dequ

atel

y by

fam

ily p

hysi

cian

s.

Rur

al p

rimar

y ca

re•

Who

are

prim

ary

care

pro

vide

rs?

Fam

ily p

hysi

cian

s, n

urse

pra

ctiti

oner

s, a

nd p

rimar

y he

alth

car

e te

am m

embe

rs.

•O

nly

16%

of f

amily

phy

sici

ans

and

2% o

f spe

cial

ists

pro

vide

ser

vice

s in

rura

l Can

ada,

whi

ch c

ompr

ises

21%

of

the

natio

n’s

popu

latio

n(T

he S

ocie

ty o

f Rur

al P

hysi

cian

s of

Can

ada,

200

5).

•Th

e So

ciet

y of

Rur

al F

amily

Phy

sici

ans

of C

anad

a (2

003)

not

ed th

at ru

ral p

rimar

y ca

re p

rovi

ders

“hav

e hi

gher

w

orkl

oads

, wor

k lo

nger

hou

rs, p

rovi

de a

gre

ater

rang

e of

ser

vice

s, in

a g

reat

er v

arie

ty o

f set

tings

, ref

er le

ss, a

nd

adm

it to

hos

pita

l and

car

e fo

r inp

atie

nts

mor

e”th

an u

rban

pro

vide

rs.

The

prob

lem

of r

ural

and

rem

ote

dem

entia

car

e•

Fam

iliar

ity w

ith p

atie

nts

and

stig

ma

of d

emen

tia m

ay h

inde

r det

ectio

n an

d di

agno

sis

(Cah

ill et

al.

2008

).•

Lim

ited

avai

labi

lity

of s

peci

alis

t ser

vice

s lo

cally

and

diff

icul

t for

pat

ient

s to

trav

el to

urb

an c

entre

s(T

eel 2

004)

.•

Lim

ited

acce

ss to

sup

port

prog

ram

s an

d se

rvic

es s

uch

as h

ome

patie

nt c

are,

nur

sing

, day

-car

e, a

nd re

spite

car

e (B

radf

ord

Dem

entia

Gro

up a

nd C

omm

issi

on fo

r Rur

al C

omm

uniti

es 2

008,

Ale

xand

er &

Fra

ser 2

008)

.

Prel

imin

ary

Find

ings

2004

bas

elin

e su

rvey

of 3

1 Sa

skat

chew

an fa

mily

phy

sici

ans

•P

hysi

cian

s sa

w a

med

ian

of 6

pat

ient

s pe

r mon

th w

ith A

lzhe

imer

’s D

isea

se o

r dem

entia

, dia

gnos

ed d

emen

tia in

a

med

ian

of 3

pat

ient

s (r

ange

0-4

0) p

er y

ear,

and

refe

rred

a m

edia

n of

3 p

atie

nts

(ran

ge 0

-20)

per

yea

r to

spec

ialis

ts.

•83

% o

f phy

sici

ans

affir

med

that

they

requ

ired

mor

e co

ntin

uing

med

ical

edu

catio

n on

dem

entia

, par

ticul

arly

co

ncer

ning

dia

gnos

is a

nd in

itiat

ing

treat

men

t. •

50%

of p

hysi

cian

s id

entif

ied

a ne

ed fo

r inc

reas

ed p

atie

nt a

nd c

areg

iver

sup

port

serv

ices

in th

eir c

omm

unity

, with

lo

ng-te

rm c

are

beds

, res

pite

bed

s, a

nd s

uppo

rt gr

oups

topp

ing

thei

r lis

t of s

uppo

rt ne

eds.

•

62%

wer

e co

mfo

rtabl

e w

ith d

iagn

osin

g an

d m

anag

ing

dem

entia

pat

ient

s, 5

1% w

ere

com

forta

ble

with

driv

er’s

lic

ense

issu

es, a

nd 4

3% w

ere

com

forta

ble

with

com

pete

ncy

asse

ssm

ent.

Uni

vers

ity o

f Sas

katc

hew

an

•D

ebra

Mor

gan

(Can

adia

n C

entre

for H

ealth

and

Saf

ety

in

Agric

ultu

re)

•Ju

lie K

oste

niuk

(Can

adia

n C

entre

for H

ealth

and

Saf

ety

in

Agric

ultu

re)

•C

arl D

’Arc

y (A

pplie

d R

esea

rch,

Dep

artm

ent o

f Psy

chia

try)

•N

orm

a St

ewar

t (C

olle

ge o

f Nur

sing

)

Uni

vers

ity o

f Stir

ling

(Sco

tland

)•

Anth

eaIn

nes

(Dem

entia

Ser

vice

s D

evel

opm

ent C

entre

)

Uni

vers

ity o

f Man

ches

ter (

Engl

and)

•Jo

hn K

eady

(Sch

ool o

f Nur

sing

, Mid

wife

ry a

nd S

ocia

l Wor

k)

Uni

vers

ity o

f Wes

t Virg

inia

(Uni

ted

Stat

es)

•R

. Tur

ner G

oins

(Dep

artm

ent o

f Com

mun

ity M

edic

ine

and

Cen

tre o

n Ag

ing

This

rese

arch

is s

uppo

rted

by:

•Ap

plie

d C

hair

in H

ealth

Ser

vice

s an

d Po

licy

Res

earc

h (2

009-

2014

), fu

nded

by

CIH

R a

nd th

e Sa

skat

chew

an

Hea

lth R

esea

rch

Foun

datio

n fo

r the

rese

arch

pro

gram

Hea

lthca

re D

eliv

ery

Acro

ss th

e C

ontin

uum

for R

ural

and

R

emot

e S

enio

rs w

ith D

emen

tia.

•A

CIH

R S

trate

gic

Trai

ning

Pos

tdoc

tora

l Fel

low

ship

in P

ublic

Hea

lthan

d th

e Ag

ricul

tura

l Rur

al E

cosy

stem

(P

HAR

E).

•W

e w

ill h

ave

a be

tter u

nder

stan

ding

of t

he s

uppo

rt ne

eds

of p

rimar

y ca

re p

rovi

ders

to d

iagn

ose

and

man

age

rura

l and

rem

ote

patie

nts

with

dem

entia

with

in th

eir c

omm

uniti

es.

Co-

Inve

stig

ator

s

Met

hods

Pote

ntia

l for

Hea

lth Im

prov

emen

ts

Ack

now

ledg

emen

ts

Obj

ectiv

es a

nd R

esea

rch

Que

stio

ns

Bac

kgro

und

Phas

e 1

Phas

e 2

Dat

aco

llect

ion

Focu

s gr

oups

(9 g

roup

s)M

ail s

urve

y

Sam

ple

Sas

katc

hew

an p

rimar

y ca

re p

rovi

ders

(N=5

4):

•Fa

mily

phy

sici

ans

(6 ru

ral,

6 re

mot

e, 6

urb

an –

18 to

tal)

•N

urse

pra

ctiti

oner

s (s

ame

as a

bove

)•

Prim

ary

heal

th c

are

team

mem

bers

(s

ame

as a

bove

)

Sas

katc

hew

an p

rimar

y ca

re

prov

ider

s (N

=100

)

Purp

ose

•E

xplo

re p

rimar

y ca

re p

rovi

ders

’dem

entia

car

e pr

actic

es, k

now

ledg

e, a

ttitu

des,

and

sup

port

need

s.

•C

onst

ruct

them

es to

dev

elop

con

tent

for p

ilot s

urve

y

Com

pare

acr

oss

geog

raph

ic

setti

ngs

and

acro

ss c

are

mod

els.

Test

sur

vey

proc

edur

esLi

mita

tions

•Fe

w fa

mily

phy

sici

ans

prac

tice

rura

l and

rem

ote:

27%

of p

rovi

nce’

s ph

ysic

ians

pra

ctic

e ru

ral v

s. 7

3% p

ract

ice

urba

n (C

anad

ian

Med

ical

Ass

ocia

tion,

200

6).

•Fe

w p

rimar

y he

alth

car

e te

ams

prac

tice

rem

ote:

14%

pra

ctic

e re

mot

e, v

s. 6

3% ru

ral,

and

23%

urb

an (A

chille

s, 2

008)

.•

Cha

lleng

es to

recr

uitin

g pa

rtici

pant

s

•This project con

sists of tw

o ph

ases: focus group

s in Phase 1, followed

 by a mail survey in Phase 2. 

•The fin

dings from

 this project will be used

 to develop

 a larger survey of prim

ary care provide

rs’

demen

tia care in Canada’s prairie

 provinces (i.e. A

lberta, Saskatche

wan, and

 Manito

ba). 

Eva

luat

ion

of T

eleh

ealt

h in

a R

ural

and

Rem

ote

Mem

ory

Clin

ic

D. M

orga

n1 , M

. Cro

ssle

y2 , A

. Kirk

3 , N

. Ste

war

t4 , C

. D’A

rcy5 ,

J. B

asra

n3 ,V

. Dal

Bel

lo-H

aas6 ,

L. M

cBai

n7 , L.

Hol

feld

1

Ru

ral a

nd

Rem

ote

Mem

ory

Clin

ic

Eva

luat

ion

Res

ult

s

Tele

heal

th E

valu

atio

n M

etho

dsC

oncl

usi

ons

The

prov

ince

of S

aska

tche

wan

, Can

ada

has

a po

pula

tion

of 1

milli

on

disp

erse

d ov

er 6

52,0

00km

2(2

52,0

00 m

i2 .)

Rur

al c

omm

uniti

es h

ave

mor

e se

nior

s (2

2%) c

ompa

red

to c

ities

(15%

) thu

s m

ore

peop

le a

t ris

k fo

r de

men

tia, y

et d

eliv

ery

of s

peci

aliz

ed s

ervi

ces

is d

iffic

ult.

Stu

dies

eva

luat

ing

the

use

of te

lehe

alth

with

rura

l dem

entia

pat

ient

s su

ffer f

rom

sm

all s

ampl

es,

expe

rimen

tal s

ettin

gs, d

escr

iptiv

e de

sign

s, n

on-s

tand

ardi

zed

inst

rum

ents

.

•Tel

ehea

lth a

ppoi

ntm

ents

sav

e co

nsid

erab

le tr

avel

(tim

e, c

ost,

stre

ss) f

or p

atie

nts

and

fam

ily.

•Tel

ehea

lth s

atis

fact

ion

ratin

gs w

ere

high

for t

echn

ical

and

team

asp

ects

of th

e ap

poin

tmen

t.

•Low

sat

isfa

ctio

n w

ith te

lehe

alth

was

a p

redi

ctor

of d

isco

ntin

uing

follo

w-u

p, b

ut th

e ris

k of

di

scon

tinui

ng w

as o

ver 8

tim

es h

ighe

r for

pat

ient

s w

ho h

ad to

trav

el >

100

kms

(60

mi)

to

tele

heal

th a

nd 5

tim

es h

ighe

r for

pat

ient

s ≥a

ge 8

0.Lo

wer

car

egiv

er b

urde

n w

as a

lso

a pr

edic

tor.

•The

se fi

ndin

gs s

ugge

st th

e di

min

ishi

ng b

enef

it of

tele

heal

th w

hen

it is

not

eas

ily a

cces

sibl

e. O

lder

pa

tient

s m

ay h

ave

mor

e ph

ysic

al li

mita

tions

that

mak

e tra

vel d

iffic

ult.

Ther

e is

a tr

end

tow

ard

high

er

risk

of d

isco

ntin

uing

for p

atie

nts

with

mod

erat

e/se

vere

dem

entia

. M

ultiv

aria

te a

naly

sis

will

be

cond

ucte

d w

hen

we

have

a la

rger

sam

ple

size

.

•Tel

ehea

lth is

a fe

asib

le a

nd a

ccep

tabl

e de

liver

y st

rate

gy in

a m

emor

y cl

inic

ser

vice

.

Fund

ing

and

in-k

ind

supp

ort i

s ge

nero

usly

pro

vide

d by

:

1 Can

adia

n C

entre

for H

ealth

and

Saf

ety

in A

gric

ultu

re, U

nive

rsity

of S

aska

tche

wan

; 2D

epar

tmen

t of P

sych

olog

y, U

nive

rsity

of S

aska

tche

wan

; 3C

olle

ge o

f M

edic

ine,

Uni

vers

ity o

f Sas

katc

hew

an; 4

Col

lege

of N

ursi

ng, U

nive

rsity

of S

aska

tche

wan

; 5D

epar

tmen

tof A

pplie

d R

esea

rch,

Uni

vers

ity o

f Sas

katc

hew

an;

6 Sch

ool o

f Phy

sica

l The

rapy

, Uni

vers

ity o

f Sas

katc

hew

an; 7

Firs

t Nat

ions

Uni

vers

ity o

f Can

ada

Goa

l: T

o de

velo

p an

d ev

alua

te a

str

eam

lined

inte

grat

edcl

inic

for d

iagn

osis

an

d m

anag

emen

t of d

emen

tia a

nd to

eva

luat

e te

lehe

alth

as a

mea

ns o

f de

liver

ing

follo

w-u

p ca

re to

pat

ient

s an

d th

eir f

amilie

s in

rura

l and

rem

ote

area

s.

“It w

as li

ke c

limbi

ng a

mou

ntai

n to

get

a d

iagn

osis

”S

trate

gy fo

r AD

and

Rel

ated

Dem

entia

s in

Sas

katc

hew

an (2

004)

, foc

us g

roup

Clin

ic M

odel

:

•1-s

top

inte

rpro

fess

iona

lclin

icin

a te

rtiar

y ca

re c

entre

: neu

rolo

gist

, ne

urop

sych

olog

y te

am, p

hysi

cal

ther

apis

t, nu

rse,

ger

iatri

cian

, CT

•tel

ehea

lth v

ideo

conf

eren

cing

for p

re-c

linic

ass

essm

ent a

nd

follo

w-u

p. T

eleh

ealth

refe

rs to

use

of

ele

ctro

nic

tele

com

mun

icat

ion

tech

nolo

gy to

pro

vide

hea

lth c

are

serv

ices

ove

r dis

tanc

es

Flow

of P

atie

nts

thro

ugh

the

Clin

ic:

1.Te

lehe

alth

Coo

rdin

ator

Eva

luat

ion

Form

: R

ural

tele

heal

th s

taff

rate

pa

tient

& c

areg

iver

com

fort

on 5

-poi

nt L

iker

tSca

les

2.Pa

tient

/Car

egiv

er T

eleh

ealth

Sat

isfa

ctio

n Q

uest

ionn

aire

(Lin

assi

& Sh

an,

2005

; Mille

r & L

eves

que,

200

2):

12 a

spec

ts o

f the

app

oint

men

t are

rate

d on

4-p

oint

Li

kert

Scal

e; s

umm

ed to

cre

ate

satis

fact

ion

scor

e. I

nter

nal c

onsi

sten

cy

relia

bilit

y fro

m p

re-c

linic

ass

essm

ents

& f

ollo

w-u

ps:

.88,

.91,

.92,

.89

3.Pa

tient

/Car

egiv

er F

ollo

w-U

p Ev

alua

tion

Que

stio

nnai

re:

Rat

e ov

eral

l sa

tisfa

ctio

nan

d co

nven

ienc

eof

the

appo

intm

ent o

n 5-

poin

t Lik

ertS

cale

s.

Com

plet

ed a

t tel

ehea

lth &

in-p

erso

n fo

llow

-up

4.Te

leph

one

Inte

rvie

ws

at 1

yea

r(cu

rren

tly b

eing

con

duct

ed)

5.O

pen-

ende

d “c

omm

ents

”qu

estio

ns o

n al

l que

stio

nnai

res

(59.

3)86

(40.

7)59

(0.4

9)3.

59O

vera

ll tre

atm

ent e

xper

ienc

e w

ith

tele

heal

th

(66.

0)95

(33.

3)48

(0.4

9)3.

65H

ow w

ell s

taff

answ

ered

que

stio

ns

re: e

quip

men

t

(66.

9)95

(33.

1)47

(0.4

7)3.

67H

ow w

ell p

rivac

y re

spec

ted

(74.

1)10

9(2

5.2)

37(0

.46)

3.73

Cou

rtesy

, res

pect

, sen

sitiv

ity

(59.

3)86

(40.

0)58

(0.5

1)3.

59Th

orou

ghne

ss, s

killf

ulne

ss

(49.

0)71

(49.

7)72

(0.5

3)3.

48Ex

plan

atio

n of

you

r tre

atm

ent b

y th

e te

am

(42.

8)62

(55.

2)80

(0.5

3)3.

41Le

ngth

of t

ime

with

Mem

ory

Clin

ic

team

(49.

2)61

(46.

0)57

(0.6

2)3.

44Ea

se o

f get

ting

to te

lehe

alth

(3

4.8)

49(4

4.0)

62(0

.91)

3.05

Wai

t tim

e fo

r app

oint

men

t

(46.

9)68

(48.

3)70

(0.6

1)3.

41Pe

rson

al c

omfo

rt

(57.

5)84

(41.

8)61

(0.5

1)3.

57Vi

sual

qua

lity

(52.

1)76

(42.

5)62

(0.6

4)3.

45Vo

ice

qual

ity

(%)

Freq

.(%

)Fr

eq.

(SD

)Ite

m M

ean

Exc

elle

ntG

oodFr

eque

ncie

saIn

divi

dual

Sca

le It

ems

Sca

le It

ems

(1 =

poo

r, 4

= ex

celle

nt)

0.96

(0.9

2, 1

.01)

0.14

361

Clin

ic d

ay c

areg

iver

Psy

chol

ogic

al d

istre

ssg

0.87

(0.8

0, 0

.95)

0.00

361

Clin

ic D

ay c

areg

iver

bur

denf

0.46

(0.0

9, 2

.41)

1.87

(0.5

1, 6

.83)

0.35

90.

346

60C

areg

iver

age

gro

upe

50-5

9 ye

ars

≥60

yea

rs

1.78

(0.3

8, 8

.27)

5.12

(1.1

5, 2

2.73

0.45

90.

032

64Pa

tient

age

gro

upd

70-7

9 ye

ars

≥80

yea

rs

3.49

(0.9

4, 1

2.99

)1.

09 (0

.25,

4.6

2)0.

062

0.91

1

56St

age

of D

emen

tiac

Mild

dem

entia

Mod

erat

e/ se

vere

dem

entia

1.05

(0.9

8, 1

.13)

0.14

060

Clin

ic d

ay S

F-12

Men

tal C

ompo

nent

scor

e0.

97 (0

.92,

1.0

2)0.

213

60C

linic

day

SF-

12 P

hysi

cal C

ompo

nent

scor

e0.

88 (0

.78,

0.9

8)0.

024

64T

eleh

ealth

Sat

isfa

ctio

n Sc

ore

3.65

(0.8

4, 1

5.84

)8.

75 (1

.55,

49.

33)

0.08

40.

014

64D

ista

nce

to te

lehe

alth

b

50-5

9 K

M≥

100

KM

1.54

(0.5

5, 4

.30)

0.41

064

Gen

der (

patie

nt)a

(Mal

e)

Odd

s rat

io (9

5%

Con

f Int

erva

l)P

valu

eN

umbe

r of

ob

serv

atio

ns

Var

iabl

e

Part

icip

ants

:O

f the

firs

t 169

pat

ient

sre

ferr

ed, 4

0% w

ere

mal

e, th

e m

ean

age

was

73

year

s (S

D =

11)

, 70%

wer

e of

Eur

opea

n an

cest

ry.

Alzh

eim

er D

isea

se (3

5%) a

nd M

ild C

ogni

tive

Impa

irmen

t (16

%) w

ere

the

mos

t co

mm

on d

iagn

oses

.

Dis

tanc

e sa

ved

by te

lehe

alth

app

oint

men

ts (1

-way

):M

ean

dist

ance

from

pat

ient

’s h

ome

to T

eleh

ealth

: 37.

4 km

s(2

3 m

iles)

Mea

n di

stan

ce fr

om p

atie

nt’s

hom

e to

Sas

kato

on: 2

51 k

ms

(156

mile

s)M

ean

dist

ance

sav

ed b

y us

ing

Tele

heal

th: 2

13 k

ms

(133

mile

s)

Tele

heal

th C

oord

inat

or E

valu

atio

n: T

he ru

ral t

eleh

ealth

sta

ff pr

esen

t at t

he s

essi

ons

repo

rted

that

mos

t pat

ient

s w

ere

com

forta

ble

(56%

) or

very

com

forta

ble

(30%

); at

tend

ing

fam

ily m

embe

rs w

ere

rate

d as

com

forta

ble

(50%

) or v

ery

com

forta

ble

(42%

).

Patie

nt/C

areg

iver

Tel

ehea

lth E

valu

atio

n Q

uest

ionn

aire

a Poo

r& F

air n

ot re

porte

d du

e to

low

freq

uenc

ies

Tele

heal

th S

atis

fact

ion

Sum

mar

y Sc

ores

: Th

e m

ean

sum

mar

y sc

ore

at

Pre

-Clin

ic A

sses

smen

t was

42.

1(p

ossi

ble

rang

e 12

–48

). F

or p

atie

nts

with

da

ta a

t pre

-clin

ic a

nd 6

-mon

th fo

llow

-up,

mea

n te

lehe

alth

sat

isfa

ctio

n sc

ores

di

d no

t cha

nge

(42.

3 vs

. 43.

6), p

= 0.

15.

Beca

use

this

ana

lysi

s in

clud

ed o

nly

thos

e w

ho w

ere

cont

inui

ng w

ith fo

llow

-up,

w

e th

en c

ompa

red

satis

fact

ion

scor

es a

t pre

-clin

ic a

sses

smen

t for

thos

e w

ho

cont

inue

d vs

. dis

cont

inue

d by

6-m

onth

follo

w-u

p. T

eleh

ealth

sat

isfa

ctio

n sc

ores

wer

e si

gnifi

cant

ly h

ighe

r for

pat

ient

s w

ho c

ontin

ued,

com

pare

d to

thos

e w

ho d

id n

ot (m

edia

n sc

ores

43

vs. 3

7, p

= 0.

013)

.

•Uni

varia

telo

gist

ic re

gres

sion

ana

lysi

s w

as u

sed

to fu

rther

exp

lore

pre

dict

ors

of d

isco

ntin

uing

, inc

ludi

ng te

lehe

alth

sat

isfa

ctio

n sc

ores

and

oth

er p

resu

med

in

fluen

tial v

aria

bles

.

Uni

varia

teLo

gist

ic R

egre

ssio

n R

esul

ts fo

r Pat

ient

s w

ho

Dis

cont

inue

d Fo

llow

-up

by 6

mon

ths

Tele

heal

th v

sIn

-Per

son

App

oint

men

ts:

•Sat

isfa

ctio

n:N

o si

gnifi

cant

diff

eren

ce b

etw

een

appo

intm

ents

con

duct

ed

via

tele

heal

th (M

= 4

.7, S

D =

0.1

1) a

nd in

-per

son

(M =

4.4

8, S

D =

0.0

9),

F(1,

56) =

2.0

5, p

= 0.

158.

•C

onve

nien

ce: r

atin

gs w

ere

sign

ifica

ntly

hig

her (

bette

r) fo

r tel

ehea

lth

(M

= 4

.78,

SD

= 0

.08)

com

pare

d to

in-p

erso

n ap

poin

tmen

ts

(M

= 3

.76,

SD

= 0

.15)

, F(1

,56)

= 3

7.78

, p<

0.00

01.

Them

es in

Ope

n-En

ded

Com

men

ts S

ectio

n: R

educ

ed

trave

l and

stre

ss, c

onve

nien

ce, q

ualit

y of

car

e. P

atie

nts

with

hea

ring

prob

lem

s re

porte

d so

me

chal

leng

es.

•Gre

at s

ervi

ce–

we

wou

ld h

ave

had

to d

rive

300

kms

one

way

•E

xcel

lent

idea

. Brin

gs e

ase

of m

edic

al a

ttent

ion

to p

erso

ns in

rura

l are

as

Bac

kgro

un

d &

Rat

ion

ale

Dev

elop

men

t and

Eva

luat

ion

of a

Tel

ehea

lth F

acili

tate

d Su

ppor

t Gro

up fo

r Car

egiv

ers

of In

divi

dual

s D

iagn

osed

w

ith A

typi

cal D

emen

tias

M. E

. O’C

onne

ll1 , M

. Cro

ssle

y1 , &

D. M

orga

n2

Abs

trac

tR

atio

nale

We

are

deve

lopi

ng a

tele

heal

th fa

cilit

ated

sup

port

grou

p w

ith

seve

n of

our

Rur

al a

nd R

emot

e M

emor

y C

linic

car

egiv

er

colla

bora

tors

. Thi

s gr

oup

inte

rven

tion

focu

ses

on n

eeds

spe

cific

to c

areg

iver

s of

indi

vidu

als

diag

nose

d w

ith a

typi

cal d

emen

tias.

Aty

pica

l dem

entia

s, s

uch

as th

e fro

ntot

empo

ral v

aria

nts

and

Hun

tingt

on’s

dis

ease

, are

usu

ally

dia

gnos

ed in

mid

life.

The

ear

ly

age

of o

nset

com

bine

d w

ith s

peci

fic b

ehav

iour

al c

hang

es th

at

char

acte

rize

thes

e at

ypic

al d

emen

tias

are

fact

ors

unde

rlyin

g hi

gh

leve

ls o

f car

egiv

er b

urde

n.

Muc

h of

the

care

give

r lite

ratu

re a

nd a

vaila

ble

com

mun

ity-

base

d su

ppor

ts a

re ta

ilore

d fo

r car

egiv

ers

of in

divi

dual

s di

agno

sed

with

Alz

heim

er d

isea

se. L

ittle

has

bee

n de

velo

ped

spec

ifica

lly fo

r car

egiv

ers

of p

atie

nts

diag

nose

d w

ith a

typi

cal

dem

entia

s an

d, c

onse

quen

tly, t

hese

car

egiv

ers

repo

rt fe

elin

g un

ders

ervi

ced.

Mor

eove

r, ou

r car

egiv

er c

olla

bora

tors

live

acr

oss

rura

l Sas

katc

hew

an a

nd m

onth

ly tr

avel

to th

e R

ural

and

Rem

ote

Mem

ory

Clin

ic w

ould

be

an a

dditi

onal

bur

den.

To

redu

ce tr

avel

bur

den

for o

ur ru

ral c

areg

iver

s w

e ar

e us

ing

tele

heal

th te

chno

logy

. Tel

ehea

lth c

ombi

nes

real

-tim

e au

dio

and

vide

o, a

nd th

is te

chno

logy

has

allo

wed

us

to fo

rm o

ne c

ohes

ive

grou

p co

mpr

ised

of s

even

mem

bers

and

two

faci

litat

ors

conn

ectin

g fro

m s

ix d

iffer

ent g

eogr

aphi

c re

gion

s of

S

aska

tche

wan

.To

eva

luat

e th

is g

roup

’s e

ffect

iven

ess,

we

will

adm

inis

ter

stan

dard

ized

mea

sure

s of

car

egiv

er b

urde

n, p

sych

olog

ical

di

stre

ss, a

nd th

e ut

ility

and

qua

lity

of th

e te

lehe

alth

tech

nolo

gy

(adm

inis

tere

d in

the

early

sta

ges

of th

e su

ppor

t gro

up, a

t six

m

onth

s, a

nd a

fter t

he fi

rst y

ear)

. In

addi

tion,

qua

litat

ive

data

rela

ted

to th

e gr

oup

mem

bers

’exp

erie

nces

will

be

sum

mar

ized

in

a on

e-da

y fo

cus

grou

p sc

hedu

led

at th

e en

d of

the

first

yea

r.

Thes

e qu

antit

ativ

e an

d qu

alita

tive

data

will

be

anal

yzed

to

dete

rmin

e th

e ef

fect

iven

ess

of th

is n

ovel

trea

tmen

t and

will

be

used

in c

olla

bora

tion

with

our

car

egiv

ers

to d

evel

op a

tem

plat

e fo

r fut

ure

tele

heal

th fa

cilit

ated

fam

ily s

uppo

rt gr

oup

inte

rven

tions

.

RR

MC

Fun

ding

and

in-k

ind

supp

ort i

s ge

nero

usly

pro

vide

d by

:

1 Dep

artm

ent o

f Psy

chol

ogy,

Uni

vers

ity o

f Sas

katc

hew

an; 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

an

Obj

ecti

ves

Part

icip

ants

Met

hod:

Ser

vice

Del

iver

y

Met

hod:

Eva

luat

ion

•• Col

labo

rate

with

car

egiv

er p

artn

ers

to d

evel

opC

olla

bora

te w

ith c

areg

iver

par

tner

s to

dev

elop

nove

l gro

up b

ased

inte

rven

tion

faci

litat

ed b

yno

vel g

roup

bas

ed in

terv

entio

n fa

cilit

ated

by

tele

heal

thte

lehe

alth

•• Qua

litat

ivel

y an

d qu

antit

ativ

ely

eval

uate

Qua

litat

ivel

y an

d qu

antit

ativ

ely

eval

uate

effe

ctiv

enes

sef

fect

iven

ess

•• Dis

sem

inat

e in

terv

entio

n te

mpl

ate

Dis

sem

inat

e in

terv

entio

n te

mpl

ate

•• Foc

us o

n at

ypic

al d

emen

tias

with

a p

redo

min

ance

of

Focu

s on

aty

pica

l dem

entia

s w

ith a

pre

dom

inan

ce o

fbe

havi

oral

cha

nges

that

bec

ome

evid

ent i

n m

idbe

havi

oral

cha

nges

that

bec

ome

evid

ent i

n m

id-- li

felife

so

cial

ly in

appr

opria

te;

soci

ally

inap

prop

riate

; dis

inhi

bite

ddi

sinh

ibite

d ; im

puls

ive;

apa

thet

ic; o

ccas

iona

lly; i

mpu

lsiv

e; a

path

etic

; occ

asio

nally

aggr

essi

ve b

ehav

iour

s th

at c

ause

sig

nific

ant d

iffic

ultie

s fo

rag

gres

sive

beh

avio

urs

that

cau

se s

igni

fican

t diff

icul

ties

for f

amily

car

egiv

ers,

wor

k

fam

ily c

areg

iver

s, w

ork

re

late

d co

lleag

ues

and

frien

ds (

rela

ted

colle

ague

s an

d fri

ends

(e.

g.,K

umam

oto

e.g.

,Kum

amot

oet

al.,

200

4;

et a

l., 2

004;

Mou

rikM

ourik

et a

l., 2

004)

et a

l., 2

004)

hi

gh n

eed

care

give

r gro

up w

ho is

und

erse

rvic

ed

high

nee

d ca

regi

ver g

roup

who

is u

nder

serv

iced

•• Few

inte

rven

tions

in ru

ral S

KFe

w in

terv

entio

ns in

rura

l SK

•• Use

of t

eleh

ealth

for t

he g

roup

inte

rven

tion

Use

of t

eleh

ealth

for t

he g

roup

inte

rven

tion

•7 s

pous

al c

areg

iver

s

Fem

ale

M

iddl

e-ag

ed, m

ost i

n th

eir 4

0’s

to 5

0’s

S

ome

sim

ulta

neou

sly

carin

g fo

r you

ng c

hild

ren

Li

ving

in 5

regi

ons

of th

e pr

ovin

ce -

rura

l or s

mal

ler u

rban

set

tings

•Car

egiv

ers

for s

pous

es d

iagn

osed

with

fron

tote

mpo

ral

varia

nt d

emen

tias,

Hun

tingt

on’s

dis

ease

, or v

ascu

lar

dem

entia

s w

ith b

ehav

iora

l fea

ture

s

•Col

labo

rativ

e In

terv

entio

n D

evel

opm

ent

G

roup

inte

rven

tion

form

at

Em

otio

n pr

oces

sing

focu

s

C

o-th

erap

ists

as

faci

litat

ors

•Tel

ehea

lth-b

ased

gro

up m

eetin

gs

6 si

tes

acro

ss S

aska

tche

wan

con

nect

ing

3

mem

bers

at o

ne s

ite

6

scre

ens

cont

inuo

usly

vis

ible

M

eet o

nce

mon

thly

for 1

½ho

urs

•Que

stio

nnai

re d

ata:

car

egiv

er b

urde

n an

ddi

stre

ss

Neu

rops

ychi

atric

Inve

ntor

y (C

umm

ings

et a

l., 1

994)

;

Zarit

Burd

en (1

2-ite

m; e

.g.,

O’R

ourk

e &

Tuok

ko, 2

003)

;

Brie

f Sym

ptom

Inve

ntor

y (D

erog

atis

, 197

5)

Hav

e th

ese

ques

tionn

aire

dat

a pr

e-in

terv

entio

n

•Mod

ifica

tion

of F

ront

al B

ehav

iour

al In

vent

ory

(Ker

tesz

et a

l., 1

997)

to in

clud

e fr

eque

ncy

& d

istr

ess

•Cop

ing

ques

tionn

aire

(Jal

owei

cet

al.,

198

4)

•Tel

ehea

lth e

valu

atio

n fo

rm

Que

stio

nnai

res

Adm

inis

tere

d

Ear

ly in

In

terv

entio

nA

t 6

mon

ths

At 1

2 m

onth

sA

t 18

mon

ths

Nea

r the

12

mon

th m

ark

of th

e in

terv

entio

n•O

ne-d

ay fo

cus

grou

p in

Sas

kato

on w

ill p

rovi

de a

desc

riptio

n of

exp

erie

nces

for t

hem

atic

ana

lysi

s

Ack

now

ledg

men

ts

We

than

k ou

r car

egiv

er c

olla

bora

tors

& T

eleh

ealth

Sas

katc

hew

an

Prel

imin

ary

Find

ings

Tele

heal

th fa

cilit

ated

sup

port

grou

ps a

ppea

r to

offe

r ben

efits

that

are

si

mila

r to

tradi

tiona

l gro

ups,

with

the

adde

d be

nefit

of i

ncre

ased

ac

cess

ibilit

y, c

onve

nien

ce, a

nd re

duce

d tra

vel c

osts

for r

ural

resi

dent

s

Gen

der

an

d G

ener

atio

nal

Dif

fere

nce

s in

Dis

tres

s an

d H

ealt

h o

f G

end

er a

nd

Gen

erat

ion

al D

iffe

ren

ces

in D

istr

ess

and

Hea

lth

of

Car

egiv

ers

pri

or

to a

Fam

ily

Mem

ber

Car

egiv

ers

pri

or

to a

Fam

ily

Mem

ber

’’ s D

emen

tia

Dia

gn

osi

ss

Dem

enti

a D

iag

no

sis

Nor

ma

Stew

art1

, D

ebra

Mor

gan1

, D

orot

hy F

orbe

s2, Ch

andi

ma

Karu

nana

yake

1 , J

osep

h W

icke

nhau

ser1

1 Uni

vers

ity o

f Sa

skat

chew

an 2

Uni

vers

ity o

f W

este

rn O

ntar

io

Tab

le 1

:Cl

inic

Day

Mea

ns a

nd S

tand

ard

Dev

iatio

ns.

46.8

(13

.6)

50.7

(9

.6)

51.5

(9

.0)

16.8

(7.

7)D

aug

hte

r49

.5 (

11.7

)54

.2

(7.4

)43

.5

(9.7

)10

.8 (

6.9)

So

n44

.8 (

11.8

)49

.8 (

10.1

)57

.7 (

11.1

)15

.3 (

9.6)

Wif

e42

.5 (

11.0

)55

.3

(9.3

)46

.8

(8.4

)8.

8 (9

.1)

Hu

sban

d

Hea

lth

-P

hys

ical

(n=

13

7)

Hea

lth

-M

enta

l(n

=1

37

)

Sev

erit

y o

f D

istr

ess

(n=

13

7)

Car

egiv

er

Bu

rden

(n =

13

8)

Rel

atio

nsh

ip

Co

ncl

usi

on

Thes

e re

sults

are

con

sist

ent

with

ear

lier

rese

arch

tha

t ha

s fo

und

diff

eren

ces

in

care

give

r bu

rden

an

d di

stre

ss in

rel

atio

n to

gen

der

of c

areg

iver

and

typ

e of

re

latio

nshi

p w

ith

the

pers

on

diag

nose

d w

ith

dem

entia

.

Ob

ject

ive

In t

his

anal

ysis

, w

e co

mpa

red

fam

ily c

areg

iver

s ac

cord

ing

to t

heir

gend

er (

mal

e vs

. fe

mal

e) a

nd r

elat

ions

hip

(spo

use

vs.

child

) on

mea

sure

s of

bu

rden

, se

verit

y of

di

stre

ss

and

heal

th (

men

tal an

d ph

ysic

al)

at t

he

initi

al i

n-pe

rson

vis

it to

a r

ural

and

re

mot

e m

emor

y cl

inic

(RRM

C) f

or

diag

nosi

s of

ear

ly d

emen

tia.

Ack

no

wle

dg

emen

ts

Res

ult

sW

e fo

und

that

wom

en (

wiv

es +

dau

ghte

rs)

repo

rted

sig

nific

antly

m

ore

care

give

r bu

rden

(p

<.0

001)

, gr

eate

r se

verit

y of

dis

tres

s (p

<

.000

1),

and

low

er

men

tal

heal

th

(p

<.0

5)

than

m

en

(hus

band

s +

son

s).

In

the

rela

tions

hip

anal

ysis

, sp

ouse

s (w

ives

+

hu

sban

ds)

repo

rted

gr

eate

r se

verit

y of

dis

tres

s (p

<.0

5) a

nd l

ower

ph

ysic

al

heal

th

(p

<.0

5)

than

ch

ildre

n (d

augh

ters

+ s

ons)

.

Ther

e w

as

no

inte

ract

ion

betw

een

the

gend

er a

nd r

elat

ions

hip

fact

ors.

Skew

ed t

o le

ftSk

ewed

to

left

Nor

mal

Nor

mal

Ske

wn

ess*

0.28

60.

670

0.50

40.

816

G x

R0

.04

80.

963

0.0

12

0.24

4R

elat

ion

ship

(R

)

0.89

70

.01

8<

0.0

00

1<

0.0

00

1G

end

er (

G)

Hea

lth

-P

hys

ical

(n=

13

7)

Hea

lth

-M

enta

l (n

=1

37

)

Sev

erit

y o

f D

istr

ess

(n=

13

7)

Car

egiv

er

Bu

rden

(n=

13

8)

Tab

le 2

:Cl

inic

Day

Ana

lysi

s of

Var

ianc

e Res

ults

.

Not

e: R

esul

ts (

p va

lues

) in

bo

ldar

e st

atis

tical

ly s

igni

fican

t*K

olm

ogor

ov-S

mirn

ov t

est

for

norm

ality

Met

ho

ds

A fa

mily

mem

ber,

who

acc

ompa

nied

the

per

son

refe

rred

to

th

e RRM

C in

terp

rofe

ssio

nal

team

fo

r as

sess

men

t,

com

plet

ed

thre

e qu

estio

nnai

res

abou

t th

eir

care

givi

ngex

perie

nces

and

the

ir ge

nera

l hea

lth.

Ethi

cs

appr

oval

w

as

obta

ined

an

d fa

mily

mem

bers

sig

ned

an

info

rmed

con

sent

for

m.

Of

141

care

give

r pa

rtic

ipan

ts,

ther

e w

ere

58 w

ives

, 34

da

ught

ers,

32

husb

ands

, an

d 17

son

s.

The

care

give

r se

lf-re

port

dat

a w

ere

colle

cted

prio

r to

the

en

d-of

-day

m

eetin

g in

w

hich

te

am

mem

bers

pr

ovid

e fe

edba

ck t

o th

e pa

tient

and

fam

ily a

bout

the

ass

essm

ent

and

diag

nosi

s.

Anal

ysis

of

Varia

nce

was

use

d in

a

fact

oria

l de

sign

to

co

mpa

re

thes

e fo

ur ca

regi

ver

grou

ps as

tw

o fa

ctor

s (g

ende

r x

rela

tions

hip)

on

ea

ch

of

four

in

dica

tors

of

dist

ress

and

hea

lth.

Diff

eren

ces

in

phy

sica

l he

alth

be

twee

n sp

ouse

s an

d c

hild

ren

may

ref

lect

ag

e-re

late

d d

eter

iora

tion

for

spou

ses

and

sugg

ests

th

at

diff

erin

g n

eeds

fo

r su

ppor

t e

xist

ba

sed

on

type

of

care

give

r.

The

next

st

age

of

the

pres

ent

anal

ysis

w

ill

be

to

exam

ine

chan

ges

over

tim

e as

ca

regi

vers

co

ntin

ue

to

supp

ort

thei

r fa

mily

m

embe

r w

ith d

emen

tia

at h

ome.

Link

ing

indi

vidu

als

and

fam

ilies

affe

cted

by

Alz

heim

er’s

dis

ease

or a

rela

ted

dem

entia

to

a c

omm

unity

of l

earn

ing,

ser

vice

s an

d su

ppor

t

Wha

t is

Firs

t Lin

k® ?

D

irect

Ref

erra

l P

hysi

cian

s an

d ot

her h

ealth

car

e pr

ofes

sion

als

dire

ctly

re

fer p

atie

nts

to th

e A

lzhe

imer

Soc

iety

Early

Inte

rven

tion

and

Ong

oing

Sup

port

In

divi

dual

s an

d fa

mili

es b

uild

rela

tions

hips

with

su

ppor

t age

ncie

s fo

r ong

oing

acc

ess

to s

ervi

ces,

su

ppor

t and

lear

ning

opp

ortu

nitie

s C

omm

unity

Col

labo

ratio

n W

orki

ng to

geth

er to

pro

vide

acc

ess

to e

ffect

ive,

co

nsis

tent

and

tim

ely

serv

ices

Prog

ress

ive

Lear

ning

Ser

ies

Pro

vide

s a

com

preh

ensi

ve o

verv

iew

of d

emen

tia,

copi

ng s

trate

gies

, res

ourc

es a

nd s

uppo

rt sy

stem

s

For p

eopl

e w

ith e

arly

mem

ory

loss

and

thei

r car

e pa

rtner

N

ext S

teps

For

fam

ily a

nd fr

iend

s of

a p

erso

n w

ith d

emen

tia

Nex

t Ste

ps fo

r Fam

ilies

C

are

Ess

entia

ls

Opt

ions

for C

are

Car

e in

the

Late

r Sta

ges

Ben

efits

to P

hysi

cian

s an

d ot

her H

ealth

Car

e Pr

ofes

sion

als

Hea

lth p

rofe

ssio

nals

can

focu

s on

the

med

ical

asp

ects

of

dem

entia

car

e, w

hile

the

Alz

heim

er S

ocie

ty p

rovi

des

on

goin

g su

ppor

t, ed

ucat

ion

and

help

in n

avig

atin

g th

e he

alth

car

e sy

stem

H

olis

tic a

ppro

ach

to c

are

resu

lts in

few

er u

npla

nned

vi

sits

to p

hysi

cian

s an

d m

edic

al fa

cilit

ies

B

enef

its to

Pat

ient

s an

d Fa

mili

es

Early

and

ong

oing

acc

ess

to in

form

atio

n, s

ervic

es a

nd

supp

ort

Ear

ly in

terv

entio

n gi

ves

peop

le w

ith d

emen

tia a

n

oppo

rtuni

ty to

hel

p pl

an fo

r the

ir ow

n ca

re

Car

egiv

ers

are

mor

e kn

owle

dgea

ble

abou

t the

pro

gres

sion

of

the

dise

ase

and

mor

e co

nfid

ent i

n th

eir c

areg

ivin

g ro

le

Rem

oves

bar

riers

for f

amili

es th

at a

re to

o ov

erw

helm

ed

to li

nk to

ser

vice

s th

emse

lves

R

educ

es in

cide

nce

and

inte

nsity

of c

areg

ivin

g cr

isis

si

tuat

ions

B

enef

its to

the

Hea

lth S

yste

m

Con

nect

s pe

ople

to lo

cal s

ervi

ces

for a

com

mun

ity-

base

d, in

tegr

ated

car

e co

ntin

uum

E

arly

inte

rven

tion

thro

ugh

educ

atio

n an

d su

ppor

t del

ays

plac

emen

t in

long

term

car

e, re

sulti

ng in

sig

nific

ant

savi

ngs

for t

he h

ealth

car

e sy

stem

Ag

encie

s w

ork

toge

ther

to p

rovid

e ap

prop

riate

ser

vices

at t

he

right

tim

e, id

entif

y ga

ps a

nd re

duce

dup

licat

ion

of s

ervic

es

For m

ore

info

rmat

ion

abou

t Fi

rst L

ink®

or t

o ob

tain

refe

rral

fo

rms,

ple

ase

cont

act a

Fi

rst L

ink®

Coo

rdin

ator

:

Reg

ina

& S

outh

ern

Sask

atch

ewan

P

hone

: 30

6-94

9-41

41

Fax:

306

-949

-306

9 E

mai

l: fir

stlin

ksou

th@

alzh

eim

er.s

k.ca

Sask

atoo

n &

Nor

ther

n Sa

skat

chew

an

Pho

ne:

306-

683-

0141

Fa

x: 3

06-6

83-6

391

Em

ail:

first

linkn

orth

@al

zhei

mer

.sk.

ca

or

1-80

0-26

3-33

67

Stra

tegi

c re

spon

se to

dem

enti

a ra

tes

in th

e U

nite

d K

ingd

om

–a

coun

ty b

y co

untr

y ov

ervi

ew

Bac

kgro

und

Res

pons

e B

y C

ount

ry

In F

ocus

–E

ngla

nd

The

stra

tegy

has

thre

e ke

ys a

reas

in w

hich

to im

prov

e th

e qu

ality

of l

ife fo

r pe

ople

with

dem

entia

and

thei

r ca

rers

:•R

epor

ts a

nd r

esea

rch

in th

e U

nite

d K

ingd

om h

ighl

ight

the

shor

tcom

ings

of t

he c

urre

nt p

rovi

sion

of d

emen

tia s

ervi

ces.

•The

leve

l of d

iagn

osis

and

trea

tmen

t for

thos

e af

fect

ed b

y de

men

tia in

the

UK

is g

ener

ally

low

com

pare

d to

oth

er

Eur

opea

n co

untr

ies.

•Onl

y on

e th

ird

of p

eopl

e w

ith d

emen

tia r

ecei

ve fo

rmal

di

agno

sis

or h

ave

cont

act w

ith s

peci

alis

t ser

vice

s at

any

tim

e in

th

eir

illne

ss.

•With

the

fore

know

ledg

e th

at th

e nu

mbe

r of

peo

ple

affe

cted

by

dem

entia

will

con

tinue

to g

row

, the

cou

ntri

es o

f the

UK

are

ac

ting

now

to r

espo

nd to

the

impa

ct o

f dem

entia

on

thei

r ci

tizen

s.0

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6000

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1000

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Num

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entia

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n by

202

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D. M

inis

h, D

. Mor

gan

Can

adia

n C

entr

e fo

r H

ealth

and

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ety

in A

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of S

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00

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land

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ther

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esU

nite

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om

Num

ber o

f peo

ple

in th

e U

K w

ith D

emen

tia (2

005)

1

Peo

ple

by c

ount

ry

Number of people

Pro

vidi

nga

high

er q

ualit

y of

care

to

ensu

re th

at p

eopl

e liv

e w

ell w

ith

dem

entia

.

Ens

urin

gea

rly

diag

nosi

s an

d su

ppor

t fo

r pe

ople

with

dem

entia

, the

ir fa

mily

an

d ca

rers

.

Rai

sing

awar

enes

s an

d un

ders

tand

ing

of d

emen

tia a

nd le

ssen

the

stig

ma

of th

e di

seas

e.Th

ere

are

17 o

bjec

tive

sto

be

impl

emen

ted:

3.G

ood

qual

ity

info

rmat

ion

for

thos

e di

agno

sed

with

de

men

tia a

nd th

eir

care

rs.

-bot

h at

dia

gnos

is a

nd

thro

ugho

ut c

ours

e of

car

e,

qual

ity in

form

atio

n w

ill b

e pr

ovid

ed

2.G

ood

qual

ity e

arly

di

agno

sis

and

inte

rven

tion

for a

ll.-a

ll pe

ople

with

dem

entia

ha

ve a

cces

s to

a “p

athw

ay

of c

are”

that

del

iver

s ra

pid

spec

ialis

t ass

essm

ent

and

sens

itive

ly c

omm

unic

ated

su

ppor

t

1.Im

prov

ing

publ

ic

and

prof

essi

onal

aw

aren

ess

of

dem

entia

.-a

ddre

ss s

tigm

a, re

duce

di

scri

min

atio

n, a

nd

enco

urag

e he

lp s

eeki

ng

beha

viou

rs

4.Ea

sy a

cces

s to

car

e,

supp

ort a

nd a

dvic

e af

ter d

iagn

osis

.-a

n as

sign

ed “d

emen

tia

advi

ser”

will

faci

litat

e ea

sy a

cces

s to

care

, su

ppor

t & a

dvic

e fo

r pe

ople

with

dem

entia

and

th

eir

care

rs.

5.D

evel

opm

ent o

f st

ruct

ured

pee

r su

ppor

t and

lear

ning

ne

twor

ks.

-pro

vide

dir

ect l

ocal

su

ppor

t, an

d en

able

peo

ple

with

dem

entia

to ta

ke a

n ac

tive

role

in d

evel

opm

ent

of lo

cal s

ervi

ces.

•The

gov

ernm

ent o

f Eng

land

has

mad

e de

men

tia a

na

tiona

l pri

ority

. •P

ublis

hed

in F

ebru

ary

2009

, Eng

land

’s N

atio

nal

Dem

entia

Str

ateg

y is

the

resu

lt of

cons

ulta

tions

and

pl

anni

ng b

egun

in A

ugus

t of 2

007.

•Thi

s st

rate

gy a

ims

to e

nsur

e th

at s

igni

fican

t im

prov

emen

ts a

re m

ade

acro

ss

thre

e ar

eas:

impr

oved

aw

aren

ess,

ear

lier

dia

gnos

is a

nd in

terv

enti

on,

and

a hi

gher

qua

lity

of c

are.

•With

a fo

cus

on lo

cal-l

evel

cha

nges

to h

ealth

care

del

iver

y, 1

7 ke

y ob

ject

ives

ar

e id

entif

ied

whi

ch –

whe

n im

plem

ente

d –

shou

ld im

prov

e th

e le

vel o

f car

e re

ceiv

ed b

y th

ose

affe

cted

by

dem

entia

. •I

nteg

ral t

o th

e st

rate

gy is

an

impl

emen

tatio

n pl

an w

ith £

150

mill

ion

over

the

next

two

year

s of

new

inve

stm

ent i

n he

alth

and

soc

ial c

are

to im

plem

ent a

ll of

th

e ob

ject

ives

.

8.Im

prov

ed q

ualit

y of

car

e fo

r peo

ple

with

de

men

tia in

gen

eral

ho

spita

ls.

-lead

ersh

ip a

nd p

athw

ays

for

dem

entia

care

in

gene

ral h

ospi

tals

with

sp

ecia

list o

lder

per

sons

m

enta

l hea

lth te

ams

7.Im

plem

entin

g th

e Ca

rers

Stra

tegy

.-C

arer

sha

ve a

n as

sess

men

t of t

heir

nee

ds,

get b

ette

r sup

port

, and

ca

n ha

ve g

ood-

qual

ity

shor

t bre

aks

from

car

ing.

6.Im

prov

ed

Com

mun

ity p

erso

nal

supp

ort s

ervi

ces.

-app

ropr

iate

ran

ge o

f se

rvic

es to

sup

port

the

need

s of

thos

e liv

ing

at

hom

e w

ith d

emen

tia a

nd

thei

r ca

rers

.

9.Im

prov

ed

imm

edia

te c

are

for

peop

le w

ith d

emen

tia.

-mor

e ca

re fo

r pe

ople

with

de

men

tia w

ho n

eed

help

to

sta

y at

hom

e.

10.C

onsi

deri

ng

hous

ing

supp

ort,

hous

ing

rela

ted

serv

ices

, and

tele

care

to s

uppo

rt p

eopl

e -n

eeds

sho

uld

be c

onsi

der-

edin

the

deve

lopm

ent o

f ho

usin

g op

tions

, ass

istiv

e te

chno

logy

, and

tele

care

.

13.A

n in

form

ed a

nd

effe

ctiv

e w

orkf

orce

for

peop

le w

ith d

emen

tia.

-hea

lth a

nd s

ocia

l car

e st

aff h

ave

the

righ

t ski

lls

to p

rovi

de b

est c

are,

and

ge

t the

righ

t tra

inin

g sp

ecifi

c to

thei

r w

ork.

12.I

mpr

oved

end

of

life

care

for p

eopl

e w

ith d

emen

tia.

-invo

lvin

g pe

ople

with

de

men

tia in

end

of l

ife

care

pla

nnin

g.

11.I

mpr

ove

the

qual

ity o

f car

e fo

r pe

ople

with

dem

entia

in

car

e ho

mes

. -d

evel

opm

ent o

f exp

licit

lead

ersh

ip fo

r de

men

tia

care

with

in c

are

hom

es.

14.A

join

t co

mm

issi

onin

g st

rate

gy fo

r de

men

tia.

-hea

lth a

nd s

ocia

l car

e se

rvic

es w

ill w

ork

toge

ther

to id

entif

y an

d be

st m

eet t

he n

eeds

of

peop

le w

ith d

emen

tia a

nd

thei

r ca

rers

15.I

mpr

ove

asse

ss-

men

tand

reg

ulat

ion

of h

ealth

and

car

e se

rvic

es a

nd o

f how

sy

stem

s ar

e w

orki

ng.

-the

re w

ill b

e be

tter

in

spec

tion

regi

mes

for

care

hom

es.

16.A

cle

ar p

ictu

re o

f re

sear

ch e

vide

nce

and

need

s.-e

vide

nce

from

the

exis

ting

rese

arch

bas

e on

de

men

tia in

the

UK

will

be

pro

vide

d, a

nd m

ore

focu

s w

ill b

e on

gap

s in

th

e cu

rren

t res

earc

h.

17.E

ffect

ive

natio

nal

and

regi

onal

sup

port

fo

r im

plem

enta

tion

of

the

stra

tegy

.-a

ppro

pria

te s

uppo

rt w

ill

be g

iven

to lo

cal s

ervi

ces

to h

elp

them

car

ry o

ut th

e st

rate

gy.

4

Ref

eren

ces

Can

adia

n C

ompa

riso

nO

ut o

f a p

opul

atio

n of

33

.5 m

illio

n, a

n es

timat

ed

500

000

Can

adia

ns li

ve

with

dem

entia

. Can

ada

is w

ithou

t a n

atio

nal

dem

entia

str

ateg

y.

Fund

s to

sup

port

mor

e an

d be

tter

rese

arch

are

be

ing

dire

cted

thro

ugh

CIH

R, b

ut n

o di

rect

su

ppor

t to

thos

e af

fect

ed b

y de

men

tia.

The

Dem

entia

Man

ifest

o (A

lzhe

imer

Sco

tland

)ht

tp://

ww

w.s

cotla

nd.g

ov.u

k/N

ews/

Rele

ases

/200

9/05

/271

5202

9 w

ww

.rob

ertb

row

nmsp

.org

.uk

Offi

ce fo

r N

atio

nal S

tatis

tics:

htt

p://w

ww

.sta

tistic

s.go

v.uk

Pers

onal

corr

espo

nden

ce w

ith M

inis

ter

of P

arlia

men

t, M

auri

ce V

ella

cott

–Se

ptem

ber

16, 2

009

http

://w

ww

.new

slet

ter.c

o.uk

/new

s/Pr

ovin

ce-n

eeds

-dem

entia

-str

ateg

y.49

4302

1.jp

1 Dem

entia

UK

–Th

e Fu

ll Re

port

(200

7) {i

mag

e ad

apte

d fr

om r

epor

t}2 N

atio

nal D

emen

tia A

ctio

n Pl

an fo

r W

ales

(200

9)3 R

emem

ber,

I’m s

till m

e (2

009)

4 Liv

ing

wel

l with

dem

entia

: A N

atio

nal D

emen

tia S

trat

egy

(200

9)N

atio

nal D

emen

tia P

lan

for

Wal

es –

1stTa

sk a

nd F

inis

h G

roup

Mee

ting

–31

stO

ctob

er 2

008

(mee

ting

min

utes

)w

ww

.alz

heim

ers.

org.

ukw

ww

.alz

scot

.org

Eng

land

•Onl

y 24

% o

f peo

ple

livin

g in

a c

are

hom

e ha

d an

ade

quat

e re

cord

of t

heir

life

his

tory

•Abo

ut h

alf o

f the

peo

ple

livin

g in

car

e ho

mes

nev

er w

ent o

utsi

deof

the

hom

e•O

nly

a th

ird

of c

are

hom

e m

anag

ers

had

unde

rgon

e a

reco

gniz

ed

trai

ning

cou

rse

abou

t car

ing

for p

eopl

e w

ith d

emen

tiaTh

e re

port

has

ten

key

mes

sage

sfo

r car

e ho

mes

and

dem

entia

ca

re.

•The

Sco

ttis

h go

vern

men

t is

addr

essi

ng th

e sh

ortc

omin

gs o

utlin

ed in

the

repo

rt, a

nd w

ill b

uild

upo

n th

ese

mea

sure

s to

dev

elop

a n

atio

nald

emen

tia

stra

tegy

for

Scot

land

. •O

ver t

he s

umm

er o

f 200

9 a

wid

e ra

ngin

g co

nsul

tatio

n is

gat

heri

ngre

com

men

datio

ns fo

r the

str

ateg

y in

clud

ing

from

a s

peci

alis

t dem

entia

foru

m

incl

udin

g th

e M

enta

l Hea

lth C

omm

issi

on, A

lzhe

imer

Sco

tland

, the

Car

e C

omm

issi

on, A

ge C

once

rn &

Hel

p th

e A

ged.

The

str

ateg

y is

exp

ecte

d to

be

publ

ishe

d by

the

end

of th

e ye

ar.

•Alz

heim

er S

ocie

ty o

f Sco

tland

figu

res

plac

e th

e co

st o

f de

men

tia in

Sco

tland

bet

wee

n £1

.5 b

illio

n an

d £1

.7 b

illio

n –

£25

472

per

pers

on p

er y

ear.

•T

he S

ocie

ty’s

dem

entia

man

ifest

o Le

t’s m

ake

dem

entia

a

prio

rity

urg

es th

e Sc

ottis

h pa

rlia

men

t to

mak

e de

men

tia a

na

tiona

l pri

ority

allo

catin

g a

tota

l of £

15 m

illio

n to

sev

en

activ

ities

to a

ddre

ss th

e im

pact

of d

emen

tia.

•The

Men

tal W

elfa

re C

omm

issi

on a

nd th

e Ca

re C

omm

issi

on c

o-pr

oduc

e R

emem

ber,

I’m

sti

ll m

e.Th

e re

port

is a

n in

-dep

th lo

ok a

t 30

care

hom

es in

Sc

otla

nd a

nd th

e in

divi

dual

s w

ith d

emen

tia in

thos

e ho

mes

. •T

he tw

o ag

enci

es fo

und

that

som

e ca

re h

omes

in S

cotla

nd h

ave

falle

n se

riou

sly

shor

t of b

est p

ract

ices

. Of t

he 3

0 ca

re h

omes

vis

ited:

3

Scot

land

•The

gov

ernm

ent o

f Wal

es h

as a

dra

ft pl

an fo

r a

natio

nal

dem

entia

str

ateg

y fo

r Wal

es.

•It e

choe

s m

any

of th

e re

com

men

datio

ns m

ade

in th

e N

atio

nal D

emen

tia S

trat

egy

for E

ngla

nd, a

nd fo

cuse

s on

so

lutio

ns b

ased

on

the

Wel

sh h

ealth

sys

tem

. •C

urre

ntly

in a

con

sulta

tion

proc

ess,

the

Wel

sh g

over

nmen

t has

acc

epte

d fe

edba

ck o

n th

e do

cum

ent u

ntil

Sept

embe

r 11,

200

9.

•The

vis

ion

is to

tran

sfor

m W

ales

into

a d

emen

tia s

uppo

rtiv

e co

mm

unity

on

a lo

cal a

nd n

atio

nal l

evel

. The

pla

n fo

cuse

s on

four

maj

or a

reas

for

conc

entr

atin

g ch

ange

s: (1

)str

engt

heni

ng in

divi

dual

s, (2

)ste

ngth

enin

g co

mm

uniti

es,

(3) i

mpr

ovin

g in

fras

truc

ture

and

acc

ess

to s

ervi

ces

for a

ll, (4

)mak

ing

stru

ctur

al

chan

ges

to e

cono

mic

, cul

tura

l and

en

viro

nmen

tal c

ondi

tions

. •T

here

are

20

obje

ctiv

esin

the

stra

tegy

that

aim

to a

ddre

ss th

ese

four

ar

eas.

43

21

2

•The

Nor

ther

n Ir

elan

d As

sem

bly

Exec

utiv

e ha

s co

mm

itted

to

the

deve

lopm

ent o

f a D

emen

tia S

trat

egy

for

Nor

ther

n Ir

elan

d.

•The

Alz

heim

er’s

Soci

ety

in N

orth

ern

Irel

and

calls

for t

he

stra

tegy

to b

e si

mila

r to

the

stra

tegy

dev

elop

ed in

Eng

land

.

•In

Nor

ther

n Ir

elan

d th

e Al

zhei

mer

Soc

iety

is c

once

rned

that

with

in 1

0 ye

ars,

m

ore

than

20

000

peop

le in

the

coun

try

will

be

livin

g w

ith d

emen

tia.

Nor

ther

n Ir

elan

d

Wal

es

The

2005

pop

ulat

ion

estim

ate

of th

e U

K w

as 6

0.2

mill

ion.

An

inte

rdis

cipl

inar

y, s

tream

lined

Rur

al a

nd R

emot

e M

emor

y C

linic

was

es

tabl

ishe

d in

Sas

katc

hew

an in

200

4 to

incr

ease

the

avai

labi

lity

of a

nd

acce

ss to

spe

cial

ized

car

e se

rvic

e fo

r rur

al a

nd re

mot

e pe

rson

s w

ith

mem

ory

prob

lem

s (d

emen

tia).

Ther

e ar

e m

any

chal

leng

es a

nd b

arrie

rs to

ear

ly d

iagn

osis

of d

emen

tia

expe

rienc

ed b

y pr

imar

y ca

re p

hysi

cian

s:

•Ava

ilabi

lity

of a

sses

smen

t ser

vice

s

•Var

iabi

lity

or s

ubtle

ty o

f sym

ptom

s

•Lac

k of

dia

gnos

tic c

onfid

ence

•Stig

ma

and

soci

al c

onse

quen

ces

of d

emen

tia d

iagn

osis

How

Can

We

Hel

p Yo

u?H

ow C

an W

e H

elp

You?

Ana

lysi

s of

Ref

erra

ls t

o a

Rur

al a

nd R

emot

e M

emor

y C

linic

fro

m

Ana

lysi

s of

Ref

erra

ls t

o a

Rur

al a

nd R

emot

e M

emor

y C

linic

fro

m

Rur

al F

amily

Phy

sici

ans

and

Pati

ents

/Car

egiv

ers

Rur

al F

amily

Phy

sici

ans

and

Pati

ents

/Car

egiv

ers

A.C

amm

er1 ,

V. D

alB

ello

-Haa

s2 , D

. Mor

gan1 ,

M. C

ross

ley3 ,

C. D

’Arc

y4 , A

. Kirk

5 , L.

McB

ain6 ,

M. O

’Con

nell3 ,

N. S

tew

art7

1 Can

adia

n C

entre

for H

ealth

and

Saf

ety

in A

gric

ultu

re, U

nive

rsity

of S

aska

tche

wan

; 2S

choo

l of P

hysi

cal T

hera

py, U

nive

rsity

of S

aska

tche

wan

; 3C

olle

ge o

f Arts

and

Sci

ence

, Uni

vers

ity o

f Sas

katc

hew

an; 4

App

lied

Res

earc

h/P

sych

iatry

, Uni

vers

ity o

f Sas

katc

hew

an; 5

Col

lege

of M

edic

ine,

Uni

vers

ity o

f Sas

katc

hew

an; 6

Firs

t Nat

ions

Uni

vers

ity o

f Can

ada;

7 Col

lege

of N

ursi

ng, U

nive

rsity

of S

aska

tche

wan

Bac

kgro

und

Bac

kgro

und

Met

hods

Met

hods

Why

Ref

erra

l Inf

orm

atio

n?W

hy R

efer

ral I

nfor

mat

ion?

The

mat

ic A

naly

sis F

indi

ngs

The

mat

ic A

naly

sis F

indi

ngs

Con

clus

ions

Con

clus

ions

Ack

now

ledg

emen

tsA

ckno

wle

dgem

ents

•Rea

dily

ava

ilabl

e so

urce

of i

nfor

mat

ion

•Can

indi

cate

why

spe

cial

ized

ser

vice

is s

ough

t (fro

m p

hysi

cian

and

pat

ient

/fam

ily p

ersp

ectiv

es)

•Use

ful f

or e

xam

inin

g ru

ral G

P n

eed

(act

ual s

ervi

ce u

se ra

ther

than

exp

ress

ed o

r per

ceiv

ed)

Them

atic

Ana

lysi

s:

Lette

rs o

f ref

erra

l fro

m ru

ral f

amily

phy

sici

an to

the

Rur

al a

nd R

emot

e M

emor

y C

linic

(via

neu

rolo

gist

, Dr.

Kirk

) fro

m M

arch

200

4 to

Aug

ust 2

009:

•Pa

rticu

lar a

ttent

ion

paid

to fa

ctor

s th

at tr

igge

red

the

refe

rral

Fam

ily c

areg

iver

resp

onse

s to

ope

n-en

ded

ques

tions

: •

Wha

t is

the

natu

re o

f the

pro

blem

that

cau

sed

the

mos

t co

ncer

n? &

Hav

e yo

u be

en s

atis

fied

up to

now

with

the

care

yo

u re

ceiv

ed fo

r thi

s pr

oble

m?

(and

if n

ot, s

peci

fy w

hy)

Patie

nt o

r Fam

ily R

eque

st•M

MSE is 14/30

.  I started

 Rem

inyl4m

g BID and

 increased to 8mg alread

y.  D

augh

ter w

ants assessm

ent.

•…the family is still ada

man

t tha

t there is significan

t cha

nge in his cog

nitive functio

n.

Con

sulta

tion

Reg

ardi

ng C

halle

ngin

g C

ases

•She

 presented

 with

 prim

ary prog

ressive ap

hasia an

d no

w has develop

ed cog

nitive prob

lems.

•I was una

ble to do a prop

er M

MSE due

 to th

e lang

uage

 barrie

r.  Iwas able to ascertain th

at th

ere 

seem

ed to

 be glob

al m

emory im

pairm

ent.  I do believe X wou

ld benefit from

 an assessment b

y your te

am.

Furt

her T

reat

men

t or M

anag

emen

t Sug

gest

ions

•She

 was tried on

 Aricept a

nd Exelon with

 poo

r respo

nse . . . MMSE has been declining over th

e last few 

mon

ths.  I wou

ld app

reciate your evaluation of th

is patient in th

is re

gard.

•Is there an

ything

 further tha

t can

 be do

ne fo

r him?

•Is there an

ything

 else she shou

ld be taking

?  Any recom

menda

tionwou

ld be ap

preciated.

Con

firm

atio

n of

Dia

gnos

is

•I won

der if she

 has eith

er Alzheim

er’s or frontal te

mpo

ral dem

entia

?

•I am not sure of th

e diag

nosis an

d wou

ld be grateful fo

r your involvem

ent.

Des

crip

tive

Ana

lysi

s:C

lass

ifica

tion

of a

tent

ativ

e di

agno

sis

of d

emen

tia a

s in

dica

ted

in th

e re

ferra

l let

ter a

ccor

ding

to c

riter

ia:

•Sta

ted

diag

nosi

s•P

atie

nt p

resc

ribed

med

icat

ion

for t

reat

men

t of d

emen

tia

(Aric

ept,

Exe

lon,

Mem

antin

e, R

emin

yl)

•Min

i-Men

tal S

tatu

s E

xam

sco

re <

24

•Fun

ctio

nal A

sses

smen

t Que

stio

nnai

re s

core

<10

Them

atic

ana

lysi

s of

phy

sici

an re

ferra

l let

ters

yie

lded

4 m

ain

cate

gorie

s of

ser

vice

nee

d:

Them

atic

ana

lysi

s of

fam

ily c

areg

iver

ope

n-en

ded

resp

onse

s yi

elde

d ca

tego

ries:

•228

refe

rral

lette

rs a

naly

zed

from

a to

tal o

f 133

phy

sici

ans

•Of t

hese

, 79

lette

rs (3

4.6%

) had

no

indi

catio

n of

a d

emen

tia

diag

nosi

s an

d 14

9 le

tters

(65.

4%) i

ndic

ated

tent

ativ

e de

men

tia d

iagn

osis

Ref

erra

l ini

tiate

d by

fam

ily p

hysi

cian

Pre-

asse

ssm

ent v

ia te

lehe

alth

vide

ocon

fere

ncin

g

One

-sto

p in

-per

son

asse

ssm

ent a

nd

diag

nosi

s w

ith in

terd

isci

plin

ary

care

team

Follo

w-u

p vi

a te

lehe

alth

vide

ocon

fere

ncin

g

Rur

al a

nd R

emot

e M

emor

y C

linic

Pro

cess

:

Wha

t is

the

natu

re o

f the

pro

blem

that

ca

used

the

mos

t con

cern

?

•Mem

ory Prob

lems/Fo

rgetting

•Con

fusion

/Lack of com

preh

ension

•Beh

aviour

chan

ges/Lack of m

otivation

Hav

e yo

u be

en s

atis

fied

up to

now

with

car

e yo

u re

ceiv

ed fo

r thi

s pr

oble

m (w

hy)?

•Wait‐time to assessm

ent a

nd diagn

osis

•Difficulty con

vincing Drs of severity of issue

•Una

ware of service ava

ilability or options

•Ana

lysi

s of

phy

sici

an re

ferra

l let

ters

and

pat

ient

/fam

ily c

areg

iver

sta

ted

reas

on

for r

efer

ral i

s us

eful

for u

nder

stan

ding

rura

l and

rem

ote

dem

entia

car

e ne

ed

•Spe

cial

ized

ser

vice

, kno

wle

dge

trans

latio

n ac

tiviti

es, a

nd re

sour

ce a

lloca

tion

can

be b

ette

r pre

dict

ed a

nd p

lann

ed w

hen

refe

rral p

atte

rn is

bet

ter u

nder

stoo

d

Des

crip

tives

Des

crip

tives

Mea

n pa

tient

age

(at c

linic

vis

it) w

as 7

2 (S

D 1

0, ra

nge

42 –

91)

Mea

n ca

regi

ver a

ge (a

t clin

ic v

isit)

was

60

(SD

15,

ra

nge

18 –

90)

Dia

gnos

is v

arie

d:

39%

Alz

heim

er’s

Dis

ease

13%

Nor

mal

12%

Mild

Cog

nitiv

e Im

pairm

ent

11%

pat

ient

not

see

n7%

Fro

ntot

empo

ralD

emen

tia

5% D

emen

tia L

ewy

Body

3% V

ascu

lar C

ogni

tive

Impa

irmen

t3%

Vas

cula

r Dem

entia

3% D

emen

tia m

ultip

le e

tiolo

gy4%

Oth

er D

emen

tia

Findings:

D.A. Forbes1, K. Clark2, R. Coatsworth-Puspoky3, A. Jarvie4, C. McDonald4, A. Lischka1

1The University of Western Ontario, London; 2Conestoga College, Waterloo; 3Lampton College, Sarnia; 4St. Joseph’s Health Care, London, Canada.

Purpose & Method:

Background:

Conclusions:

Conceptual Schema & Excerpts:

The purpose of this study was to gain a deeper understanding of healthcare providers’ needs for appropriately responding to residents’ challenging behaviours in LTC facilities in South West Ontario, Canada.The research design used a Qualitative Interpretive Descriptive approach (Thorne et al., 2004). Data were collected during 18 audio-taped focus groups with LTC front-line health care providers (personal support workers (n=64), registered practical nurses (n=11), nurses (n=12), recreational therapists (n=6), physiotherapists (n=3), & others (n=10). Most participants were female (95%) over the age of 40 (58%). Field notes were also recorded following each focus group. Analysis focused on coding key phrases & themes that emerged from the data. Patterns within & between the transcripts were located, using a constant comparison approach.

In Ontario, Canada, the most common concern reported by long-term care (LTC) healthcare providers in dealing with residents’ challenging behaviours was the accessibility & availability of resources, especially during crisis situations (MOHLTC, 2007). Moreover, lack of knowledge of appropriate responses, existing resources, & poor linkages between health care sectors were also noted as barriers to optimal care for LTC residents.

Resources Needed to Provide Effective Responses to Resources Needed to Provide Effective Responses to Behavioral Challenges in LongBehavioral Challenges in Long--Term Care FacilitiesTerm Care Facilities

Feeling vulnerable, not valued, & unsure of how to respond to behavioral challenges became apparent through the stories of the front-line participants. The knowledge gained from this study is being shared with the participants & senior LTC administrators with the aim to change the Context within which care is provided. That is, to facilitate evidence-based person-centered care that includes effective responses to behavioral challenges & the inclusion of front-line staff in the planning of care & responsive decision-making.

The overarching Context included themes identified as Place, Organizational Structure & Resources. These themes described the context within which the front-line practitioners conducted their daily dementia care. Placeincluded rural/urban & the structural lay-out of the ward. Organizational Structure included concepts such as hierarchy, consistency of care, boundaries, rules, & knowing how to work the system. Resources included time, experiential knowledge, other team members, & support system. At the centre of Context, two overlapping themes were identified: Relationships (e.g., power, roles, boundaries, recognition) & Information Communication Technology (e.g., standardized assessment tools, access to the internet). Lastly, Consequences (e.g., helplessness, fear, desensitization, the need to be heard, empathy, & thirst for knowledge) were revealed by the participants.

Place: If one resident gets agitated & they’re wandering up & down the hall screaming then they get 10 more people wandering aroundscreaming because there is no room to take that one resident to get them to calm down.

Organizational Structure: We’re being treated like the rest of the facility, we’re expected to do the same care, in the same amount of time with residents who don’t follow the same time frame.

Resources: Acquired Brain Injury persons have been given more funding, more projects & now they are moving into LTC facilitieswhere there is a lack of funding, a lack of resources.

Relationships: Sometimes I think we need a little more distance between the residents & staff. I see people kissing residents. Now come on girls, we have to be nice to them but we don’t have to overdo it. They start expecting it from everyone but I’m not kissing.

Information Communication Technology: We can’t use the computers as Personal Support Workers. Maybe that should change too, there should be computer access to all staff.

Consequences: There is a lot of hitting & punching, knock around, & we just have to take it. Nothing is done for us, we just have to take it…I can’t do it anymore.

ResponsiveBehaviours

Information CommunicationTechnology

RelationshipsConsequences

Acknowledgements: We would like to thank the members of the Behaviour & Resource Research Group: Dr. Lisa VanBussel, Leslie Post, Donna Scott, Kelly Simpson, Ila Weston-Davies, Dr. Iris Gutmanis, & most importantly, the study participants.

Mai

ntai

ning

Hea

lth a

nd W

elln

ess

in th

e Fa

ce o

f Dem

entia

:M

aint

aini

ng H

ealth

and

Wel

lnes

s in

the

Face

of D

emen

tia:

An

Ana

lysi

s of

Indi

vidu

als

Livi

ng in

Rur

al a

nd R

emot

e A

reas

An

Ana

lysi

s of

Indi

vidu

als

Livi

ng in

Rur

al a

nd R

emot

e A

reas

Vani

na D

al B

ello

Vani

na D

al B

ello

-- Haa

s, P

h.D

., P.

T.,

Haa

s, P

h.D

., P.

T.,11

Meg

an E

. OM

egan

E. O

’’ Con

nell,

Ph.

D.,

Con

nell,

Ph.

D.,22

Deb

ra M

orga

n, P

h.D

., R

.N.

Deb

ra M

orga

n, P

h.D

., R

.N.33

11 Sch

ool o

f Phy

sica

l The

rapy

; Sc

hool

of P

hysi

cal T

hera

py; 22

Dep

artm

ent o

f Psy

chol

ogy;

D

epar

tmen

t of P

sych

olog

y; 33 C

anad

ian

Cen

tre

for H

ealth

and

Saf

ety

in A

gric

ultu

re; U

nive

rsity

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

an, S

aska

toon

, SK

of S

aska

tche

wan

, Sas

kato

on, S

K

M

aint

aini

ng h

ealth

with

phy

sica

l and

men

tal a

ctiv

ities

, goo

d nu

triti

on, s

tres

s m

anag

emen

t, an

d so

cial

sup

port

are

impo

rtan

t for

in

divi

dual

s w

ith e

arly

dem

entia

(Bur

gene

r et a

l., 2

007)

th

ese

type

s of

inte

rven

tions

pla

y a

criti

cal r

ole

bec

ause

they

ca

n im

pact

ove

rall

func

tion

and

com

mun

ity li

fe (Z

arit

et a

l., 2

004)

Ea

rlier

inte

rven

tions

are

con

side

red

esse

ntia

l for

indi

vidu

als

with

de

men

tia (M

ittel

man

et a

l., 1

996)

H

ealth

and

wel

lnes

s in

form

atio

n pr

ovid

ed s

oon

afte

r de

men

tia

diag

nosi

s, a

long

with

enh

ance

d co

ping

ski

lls, m

ay le

ad to

hea

lthbe

havi

or c

hang

es th

at p

reve

nt e

xces

s di

sabi

lity

or p

rem

atur

e lo

ss o

f fu

nctio

n an

d in

stitu

tiona

lizat

ion

Pa

tient

s an

d fa

mily

car

egiv

ers

refe

rred

to th

e R

ural

and

R

emot

e M

emor

y C

linic

com

plet

ed q

uest

ionn

aire

s as

sess

ing

mem

ory

and

othe

r sym

ptom

s, h

ealth

and

wel

lnes

s pr

actic

es,

func

tion,

dep

ress

ion,

qua

lity

of li

fe, a

nd c

areg

iver

bur

den

and

dist

ress

D

ata

from

119

indi

vidu

als

who

rece

ived

a d

iagn

osis

of

dem

entia

wer

e an

alyz

ed u

sing

:

desc

riptiv

e st

atis

tics

co

rrel

atio

ns

them

atic

ana

lysi

s

To e

xplo

re: (

1) th

e ty

pes

of h

ealth

and

wel

lnes

s be

havi

ours

in

divi

dual

s di

agno

sed

with

dem

entia

repo

rt e

ngag

ing

in; a

nd,

(2) t

he re

latio

nshi

p be

twee

n he

alth

beh

avio

urs

and

func

tion,

de

pres

sion

, qua

lity

of li

fe, a

nd c

areg

iver

bur

den

and

dist

ress

.

R

ural

and

rem

ote

dwel

ling

indi

vidu

als

with

dem

entia

pa

rtic

ipat

e in

a v

arie

ty o

f ple

asur

able

act

iviti

es a

nd re

port

go

od n

utrit

ion

habi

ts

M

any

indi

vidu

als

did

not e

xerc

ise

at th

e re

com

men

ded

leve

ls

Po

sitiv

e be

nefit

s of

exe

rcis

e w

ere

foun

d in

thos

e w

ith

AD

Pa

rtic

ipan

ts ra

nged

in a

ge b

etw

een

44 a

nd 8

7 ye

ars

A

bout

hal

f (50

.6%

) ind

icat

ed th

ey e

xerc

ised

for 2

0 m

inut

es tw

o, o

ne o

r no

times

per

wee

k

th

e va

st m

ajor

ity o

f tho

se w

ho e

xerc

ised

two

or

few

er ti

mes

per

wee

k di

d no

t exe

rcis

e at

all

(82.

2%)

A

bout

thre

e-qu

arte

rs (7

6%) o

f ind

ivid

uals

repo

rted

they

m

et m

ost o

r all

of th

e C

anad

a Fo

od G

uide

die

t req

uire

men

ts

M

ore

than

two-

third

s (6

8.1%

) ind

icat

ed th

ey w

ere

enga

ged

in o

ne o

f the

follo

win

g ac

tiviti

es to

mai

ntai

n th

eir

psyc

holo

gica

l hea

lth:

Ack

now

ledg

emen

tsA

ckno

wle

dgem

ents

Fund

ing

and

in-k

ind

supp

ort i

s ge

nero

usly

pro

vide

d by

:

Purp

ose

Purp

ose

Met

hods

and

Ana

lysi

sM

etho

ds a

nd A

naly

sis

Res

ults

Res

ults

Bac

kgro

und

and

Rel

evan

ceB

ackg

roun

d an

d R

elev

ance

Con

clus

ions

Con

clus

ions

H

ealth

pro

mot

ing

beha

viou

rs m

ay h

elp

peop

le w

ith

dem

entia

rem

ain

activ

e an

d m

ay p

ositi

vely

influ

ence

fu

nctio

n an

d qu

ality

of l

ife

H

ealth

pro

mot

ing

beha

viou

rs s

houl

d be

en

cour

aged

as

part

of a

n ov

eral

l man

agem

ent p

lan

for

peop

le w

ith d

emen

tia

So

me

peop

le w

ith d

emen

tia a

nd th

eir c

areg

iver

s m

ay re

quire

add

ition

al e

duca

tion

and

info

rmat

ion

rega

rdin

g ty

pes

of b

enef

icia

l hea

lth p

rom

otin

g be

havi

ours

Impl

icat

ions

Impl

icat

ions

B

ecau

se A

lzhe

imer

Bec

ause

Alz

heim

er’’ s

dis

ease

(AD

) was

mos

t fre

quen

tly

s di

seas

e (A

D) w

as m

ost f

requ

ently

di

agno

sed

(47.

9%),

we

furt

her a

naly

zed

this

gro

updi

agno

sed

(47.

9%),

we

furt

her a

naly

zed

this

gro

up

Twen

ty-fo

ur p

eopl

e w

ith A

D re

port

ed e

xerc

isin

g th

ree

or m

ore

times

per

wee

k

In

crea

sed

freq

uenc

y of

exe

rcis

e w

as a

ssoc

iate

d w

ith m

any

posi

tive

fact

ors:

de

crea

sed

alco

hol u

se (r

= -0

.505

, p=

0.01

)

de

crea

sed

sym

ptom

s of

dep

ress

ion

(r=

-0.4

05, p

= 0.

05)

de

crea

sed

care

give

r bur

den

and

dist

ress

(r=

-0.4

79, p

= 0.

02)

05

101

52

02

530

Rel

igio

usA

ctiv

itie

s

Men

talA

ctiv

itie

sW

alki

ng

Rea

din

g

Soc

ializ

ing

(Fam

ily/F

rien

ds)

Lei

sure

Act

ivit

ies

and

Hob

bie

sG

ard

enin

gB

akin

g/C

ooki

ng

Typ

ical

Dai

lyA

ctiv

itie

s

Ste

ssM

anag

emen

t

Fis

hin

g/H

unt

ing

Exe

rcis

eT

V

Figu

re:

Activ

ities

Peo

ple

with

Dem

entia

are

Eng

aged

(Fre

quen

cy o

f res

pons

es)

Co

mp

ari

ng

Qu

ali

tati

ve V

erb

al

Flu

en

cy

Sco

rin

g P

roce

du

res

in H

ealt

hy A

gin

g a

nd

Earl

y S

tag

e A

lzh

eim

er’

s D

isease

.N

. Hau

grud

, M. C

ross

ley,

M. V

rban

cic,

& S

. Jod

ouin

Intr

od

uct

ion

•Tw

oco

mp

on

en

tm

od

elof

verb

al

flu

en

cy4:

1.

Clu

steri

ng:

pro

duct

ion o

f w

ord

s in

a p

honem

ic o

r se

man

tic

subca

tegory

, pre

sum

ed t

o r

ely

on t

empora

l lo

be

pro

cess

es2.

Sw

itch

ing

: a

shift

bet

wee

n c

lust

ers,

pre

sum

ed t

o r

ely

on fro

nta

l lo

be p

roce

sses

•S

um

mary

of

Pre

vio

us

Rese

arc

h:

1.

Old

er

ad

ult

spro

duce

few

er t

ota

l w

ord

s, s

witch

es a

nd

nove

l an

d r

epeat

ed c

lust

ers

than

yo

un

ger

ad

ult

s2,3

2.

Indiv

idual

s w

ith A

lzh

eim

er’

sd

isease

(AD

) pro

duce

fe

wer

sw

itch

es a

nd s

mal

ler

clust

er s

izes

than

norm

als3

•Lim

itati

on

sof

pre

vio

us

rese

arc

h:

Tra

ditio

nal

sco

ring

pro

cedure

s use

of si

ngle

word

s, e

rrors

, an

d p

erse

vera

tions

in c

alcu

lations

of cl

ust

er s

ize

and s

witch

ing r

ates

.

•The

pre

sen

tst

ud

ies

exam

ined

multip

le m

eth

ods1

,2,4

of

calc

ula

ting c

lust

erin

g a

nd s

witch

ing d

uring s

eman

tic

and

phonem

ic v

erbal

flu

ency

in y

oung,

mid

dle

aged

, an

d o

lder

ad

ults

with e

quiv

alen

t es

tim

ated

ver

bal

abili

ty,

and in

indiv

iduals

with e

arly

-sta

ge

Alz

hei

mer

Dis

eas

e (A

D).

Meth

od

sP

art

icip

an

ts

Stu

dy

1•3

0 y

oung (

mea

n a

ge

27.9

yrs

)•3

0 m

iddle

(m

ean

age

51.1

yrs

)•3

0 o

ld (

mea

n a

ge

71.3

yrs

)Stu

dy

2•2

6 A

D g

roup (

mea

n a

ge

70.6

yrs

)•2

6 h

ealthy

old

er a

dults

(mea

n a

ge

70.5

yrs

)

Measu

res

•Phonem

ic f

luen

cy –

FAS (

thre

e 60-s

ec t

rial

s)•

Sem

antic

Fluen

cy –

Anim

al N

amin

g (

one

60-s

ec t

rial

)•

Est

imat

es o

f Ver

bal Abili

ty•S

tudy

One:

Pe

abody

Pict

ure

Voca

bula

ry T

est

-Rev

ised

•Stu

dy

Tw

o:

Wid

e Ran

ge

Ach

ieve

men

t Tes

t (W

RAT-I

II)

Co

mp

ute

r S

cori

ng

Pro

gra

m

•Cal

cula

ted c

lust

ers

of w

ord

s bas

ed o

n T

roye

r et

al. (

1997)

clust

erin

g r

ule

s. M

odific

atio

ns

to s

coring:

•Phonem

ic flu

ency

: cl

ust

ers

wer

e ca

lcula

ted b

ased

on t

he

sam

e firs

t tw

o let

ters

•Sem

antic

fluen

cy:

super

ord

inat

eca

tegory

was

use

d if a

word

could

be

incl

uded

in m

ultip

le c

lust

ers

Pro

ced

ure

s

•P

ho

nem

iccl

ust

ers

: su

cces

sive

ly g

ener

ated

word

s th

at b

egin

with t

he

sam

e tw

o let

ters

•S

em

an

tic

clu

sters

: su

cces

sive

ly g

ener

ated

word

s th

at

bel

ong t

o t

he

sam

e se

man

tic

subca

tegory

(e.

g.

Afr

ican

an

imals

)•

Mean

clu

ster

size

: su

mm

atio

n o

f si

ze o

f ea

ch c

lust

er

div

ided

by

num

ber

of cl

ust

ers

•N

um

ber

of

swit

ches:

num

ber

of

tran

sitions

bet

wee

n

clust

ers

•N

um

ber

of

hard

sw

itch

es:

num

ber

of tr

ansi

tions

bet

wee

n t

wo s

ingle

word

s or

a si

ngle

word

and

clust

ered

word

•N

um

ber

of

clu

ster

swit

ches:

num

ber

of tr

ansi

tions

bet

wee

n c

lust

ered

word

s•

Nu

mb

er

of

no

vel

clu

sters

: num

ber

of new

su

bca

tegories

acc

esse

d•

Nu

mb

er

of

rep

eate

d c

lust

ers

: num

ber

of

subca

tegories

ret

urn

ed t

o d

uring a

trial

Resu

lts:

Stu

dy

On

e

Dis

cuss

ion

: S

tud

y O

ne

•A

ge G

rou

p:

Str

onges

t ag

e gro

up e

ffec

ts o

bse

rved

on

tota

l w

ord

s pro

duce

d,

num

ber

of sw

itch

es (

spec

ific

ally

har

d s

witch

es)

and n

um

ber

of nove

l cl

ust

ers,

with o

lder

ag

e gro

up p

roduci

ng low

er s

core

s th

an y

oung a

nd

mid

dle

gro

ups

•Support

s ex

ecutive

funct

ion (

i.e.

sea

rch a

nd r

etriev

al)

and p

roce

ssin

g s

pee

d d

eclin

e w

ith h

ealthy

agin

g.

Resu

lts:

Stu

dy T

wo

Dis

cuss

ion

: S

tud

y T

wo

•A

D p

art

icip

an

ts:

AD

gro

up p

roduce

d few

er t

ota

l w

ord

s, s

witch

es (

larg

er e

ffec

t fo

r cl

ust

er s

witch

es),

se

man

tic

clust

er s

ize,

nove

l cl

ust

ers,

and f

ewer

ove

rlappin

g c

lust

ers

(i.e

. w

ord a

t en

d o

f cl

ust

er t

hat

pro

mpts

a n

ew c

lust

er)

•Support

s dec

line

in e

ffec

tive

str

ateg

y use

(i.e.

eff

ective

se

arch

and r

etriev

al of w

ord

s an

d t

he

use

of prior

word

s to

cue

new

res

ponse

s) a

nd s

eman

tic

mem

ory

in A

D

Gen

era

l D

iscu

ssio

n

•Tota

l w

ord

pro

duct

ion d

eclin

es

both

with h

ealthy

agin

g

and A

D,

but

due

to d

iffe

rent

under

lyin

g p

roce

sses

•Suppor

ts u

se o

f m

ultip

le m

ethods

of ex

amin

ing v

erbal

fluen

cy p

roduct

ion

Ref

eren

ces

1.

Abw

ender

, D

. A.,

Sw

an,

J. G

., B

ower

man

, J.

T.,

& C

onnol

ly,

S.

W.

(2001).

Q

ual

itat

ive

anal

ysis

of

verb

al flu

ency

outp

ut:

Rev

iew

and c

om

par

ison o

f se

vera

l sc

oring m

ethods.

Ass

essm

ent,

8,

323-3

36.

2.

Lanting,

S.,

Hau

gru

d,

N.,

& C

ross

ley,

M.

(2009).

The

effe

ct o

f ag

e an

d s

ex o

n c

lust

erin

g

and s

witch

ing d

uring s

pee

ded

ver

bal

flu

ency

tas

ks.

Journ

al o

f th

e In

tern

atio

nal

N

euro

psy

cholo

gic

al S

oci

ety,

15,

196-2

04.

3.

Tro

ster

, A.

I.,

Fiel

ds,

J.

A.,

Tes

ta,

J. A

., P

aul, R

. H

., B

lanco

, C.

R.,

Ham

es,

K.

A.,

Sal

mon,

D. P.

, &

Bea

tty,

W.

(1998).

Cor

tica

l an

d s

ubco

rtic

alin

fluen

ces

on c

lust

erin

g a

nd

switch

ing in t

he

per

form

ance

of

verb

al f

luen

cy t

asks

. N

euro

psy

cholo

gia

, 36,

295-3

04.

4.

Tro

yer,

A.

K.,

Mos

covi

tch,

M.,

& W

inoc

ur,

G.

(1997).

Clu

ster

ing a

nd s

witch

ing a

s tw

o co

mpon

ents

of

verb

al flu

ency

: Evi

den

ce f

rom

younger

and o

lder

hea

lthy

adults.

N

euro

psy

cholo

gy,

11,

138-1

46.

Age

Gro

up D

iffer

ence

s in

Tot

al W

ords

Pro

duce

d

051015202530354045

Sem

antic

Pho

nem

ic

Youn

g

Mid

dle

Old

er

Age

Gro

up D

iffer

ence

s in

Num

ber o

f Nov

el C

lust

ers

0246810121416

Sem

antic

Pho

nem

ic

You

ngM

iddl

eO

lder

Age

Gro

up D

iffer

ence

s in

Num

ber o

f Har

d Sw

itche

s

051015202530

Sem

antic

Pho

nem

ic

You

ngM

iddl

eO

lder

Gro

up D

iffer

ence

s in

Tot

al W

ords

Pro

duce

d

051015202530354045

Sem

antic

Pho

nem

ic

Alz

heim

er's

Dis

ease

Gro

up

Hea

lthy

Old

erA

dults

Gro

up D

iffer

ence

s in

Ove

rlapp

ing

Clu

ster

s

0

0.1

0.2

0.3

0.4

0.5

0.6

Sem

antic

Alz

heim

er's

Dis

ease

Gro

up

Hea

lthy

Old

erA

dults

Del

ayed

Mem

ory

, b

ut

no

t E

xec

uti

ve S

kill

s, P

red

icts

Fu

nct

ion

al I

mp

airm

ent

in N

ewly

Dia

gn

ose

d A

lzh

eim

er’s

Dis

ease

Cai

ley

Str

auss

, N

ico

le H

aug

rud

, M

arg

aret

Cro

ssle

y, &

Deb

ra M

org

anU

niv

ersi

ty o

f S

ask

atch

ewan

, C

AN

AD

A

.014

.084

-.14

8.1

78-.

144

Step

2ES

C

.071

*.0

71*

.266

*.0

1.0

19St

ep 1

3MS

ΔR2

R2β

SEB

BVa

riabl

e

.102

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8*-.

322*

.114

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ep 2

DM

C

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ep 1

3MS

ΔR2

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SEB

BVa

riabl

e

W

hen

com

pare

d to

exe

cutiv

e sk

ills,

del

ayed

mem

ory

was

fo

und

to b

e a

bett

er p

redi

ctor

of

daily

fun

ctio

ning

in in

divi

dual

s w

ith e

arly

-sta

ge A

D, a

ccou

ntin

g fo

r ap

prox

imat

ely

10%

of

the

uniq

ue v

aria

nce

in t

he F

AC.

Th

is f

indi

ng is

con

sist

ent

with

res

earc

h w

hich

sta

tes

that

ea

rly A

D im

pact

s th

e m

edia

l tem

pora

l lob

es (

e.g.

, Sch

elte

nset

al

., 19

92).

E

xec

uti

ve s

kill

sm

ight

be

a be

tter

pre

dict

or o

f da

ily

func

tioni

ng in

the

sub

set

of A

D p

atie

nts

with

ear

ly c

hang

es in

th

e pr

efro

ntal

cor

tex.

Fut

ure

rese

arch

sho

uld

be a

imed

at

com

parin

g th

e pr

edic

tors

of

func

tiona

l abi

lity

in s

ubse

ts o

f pa

tient

s in

the

ear

ly a

nd la

ter

stag

es o

f AD

.

Our

stu

dy in

vest

igat

ed p

ossi

ble

cogn

itive

pre

dict

ors

of d

aily

fu

nctio

ning

in in

divi

dual

s w

ho h

ad b

een

new

ly d

iagn

osed

with

pr

obab

le A

lzhe

imer

’s D

isea

se (

AD).

Spe

cific

ally

, exe

cutiv

e fu

nctio

ning

and

del

ayed

mem

ory

wer

e pr

opos

ed p

redi

ctor

s.

Acco

rdin

g to

the

exi

stin

g lit

erat

ure,

exe

cutiv

e an

d ce

rtai

n m

emor

y sk

ills

are

two

area

s of

fun

ctio

ning

tha

t ar

e af

fect

ed b

y Al

zhei

mer

’s

Dis

ease

in it

s ea

rly s

tage

s (B

audi

cet

al.,

200

5).

Mor

timer

et

al. (

1992

) fo

und

that

pre

dict

ors

of f

unct

iona

l dec

line

incl

uded

par

anoi

a, h

allu

cina

tions

, dis

turb

ance

s in

act

ivity

, and

low

er s

core

s on

non

verb

al n

euro

psyc

holo

gica

l tes

ts. H

owev

er, i

t is

al

so im

port

ant

to c

onsi

der

exec

utiv

e fu

nctio

ning

and

del

ayed

m

emor

y as

pre

dict

ors

of f

unct

iona

l dec

line.

The

se t

wo

area

s ar

e ea

sily

and

rou

tinel

y te

sted

in d

emen

tia a

sses

smen

t. O

ne s

tudy

fo

und

that

exe

cutiv

e dy

sfun

ctio

n w

as a

ssoc

iate

d w

ith f

unct

iona

l im

pairm

ent

in p

atie

nts

with

AD

(Ch

en e

t al

., 19

98).

Mor

e in

form

atio

n is

nee

ded

to d

eter

min

e w

heth

er d

elay

ed m

emor

y is

a b

ette

r pr

edic

tor

of f

unct

iona

l im

pairm

ent

than

are

exe

cutiv

e sk

ills,

and

thi

s w

as t

he f

ocus

of

our

rese

arch

.

Intr

od

uct

ion

Co

ncl

usi

on

s

Ref

eren

ces

Baud

ic, S

., Ba

rba,

G. D

., Th

ibau

det,

M. C

., Sm

aggh

e, A

., Rem

y, P

., &

Tra

ykov

, L. (

2005

).

Exec

utiv

e fu

nctio

n de

ficits

in e

arly

Alz

heim

er’s

dis

ease

and

the

ir re

latio

ns w

ith e

piso

dic

mem

ory.

Ar

chiv

es o

f Clin

ical

Neu

rpsy

chol

ogy,

21(

1), 1

5-21

.

Chen

, S. T

., Su

ltzer

, D. L

., H

inki

n, C

. H.,

Mah

ler,

M. E

., &

Cum

min

gs, J

. L. (

1998

). E

xecu

tive

dysf

unct

ion

in A

lzhe

imer

’s D

isea

se:

Asso

ciat

ion

with

neu

rops

ychi

atric

sym

ptom

s an

d fu

nctio

nal i

mpa

irmen

t. T

he J

ourn

al o

f Neu

rops

ychi

atry

and

Clin

ical

Neu

rosc

ienc

es, 1

0 (4

) , 4

26-4

32.

Mor

timer

, J. A

., Eb

bitt

, B.,

Jun,

S-P

., &

Fin

ch, M

. D. (

1992

). P

redi

ctor

s of

cog

nitiv

e an

d fu

nctio

nal p

rogr

essi

on in

pat

ient

s w

ith p

roba

bly

Alzh

eim

er’s

dis

ease

. Neu

rolo

gy, 4

2,

1689

-169

6.

Sche

ltens

, P.,

Leys

, D.,

Bark

hof, F

., H

uglo

, D.,

Wei

nste

in, H

. C.,

Verm

ersc

h, P

., Ku

iper

, M.,

Stei

nlin

g, M

., W

olte

rs, E

. C.,

& V

alk,

J. At

roph

y of

med

ial t

empo

ral l

obes

on

MRI

in

“pro

babl

e”Al

zhei

mer

’s d

isea

se a

nd n

orm

al a

gein

g: D

iagn

ostic

val

ue a

nd

neur

opsy

chol

ogic

al c

orre

late

s. J

ourn

al o

f Neu

rolo

gy, N

euro

surg

ery,

and

Psy

chia

try,

55

, 967

-972

.

Met

ho

dP

arti

cip

ants

: 55

indi

vidu

als

(19

mal

e, 3

6 fe

mal

e) w

ho h

ave

been

dia

gnos

ed w

ith p

roba

ble

AD a

t th

e Rur

al a

nd R

emot

e M

emor

y Cl

inic

in S

aska

toon

, Can

ada.

The

ir m

ean

age

was

75.

7 ye

ars

(SD

= 7

.8 y

ears

).

Mea

sure

s:Ex

ecut

ive

Skill

s Co

mpo

site

(ESC

) –

Trai

l Mak

ing

Test

(Pa

rt B

),

Phon

emic

Ver

bal F

luen

cy, a

nd C

odin

g fr

om t

he R

BAN

S.

Repo

rted

as

Z s

core

.D

elay

ed M

emor

y Co

mpo

site

(DM

C) –

List

and

Sto

ry R

ecal

l fro

m

the

RBAN

S. R

epor

ted

as s

cale

d sc

ore.

Func

tiona

l Abi

lity

Com

posi

te(F

AC)

–se

lf-re

port

ed a

ctiv

ities

of

daily

livi

ng, a

nd t

wo

care

give

r re

port

s (F

unct

iona

l Ass

essm

ent

Que

stio

nnai

re, a

nd B

risto

l Act

iviti

es o

f D

aily

Liv

ing)

. Rep

orte

das

Z s

core

.M

odifi

ed M

ini M

enta

l Sta

te E

xam

(3M

S) –

Repo

rted

as

raw

sc

ore.

Pro

ced

ure

: Th

e da

ta w

as a

naly

zed

usin

g tw

o hi

erar

chic

al m

ultip

le

regr

essi

ons.

Ste

p 1

= 3

MS,

Ste

p 2

= e

ither

ESC

or

DSM

, de

pend

ent

varia

ble

= F

AC.

Res

ult

s

* p

< .0

5

* p

< .0

7

Mu

ltip

le R

egre

ssio

n A

nal

ysis

Su

mm

ary

for

Exe

cuti

ve S

kil

ls

Pre

dic

tin

g F

un

ctio

nal

Ab

ilit

y (N

= 4

7)

Mu

ltip

le R

egre

ssio

n A

nal

ysis

Su

mm

ary

for

Del

ayed

M

emo

ry P

red

icti

ng

Fu

nct

ion

al A

bil

ity

(N =

49

)

--1.

095.

323.

DM

C

.28*

--.9

5-1

.50

2. E

SC

.51*

*.5

9**

--13

.53

67.3

1. 3

MS

-.28

.05

.34*

.95

-.99

FAC

32

1SD

MVa

riabl

e

Mea

ns,

Sta

nd

ard

Dev

iati

on

s, a

nd

In

terc

orr

elat

ion

sfo

r Fu

nct

ion

al A

bil

ity,

3M

S,

Ex

ecu

tive

Sk

ills

, an

d D

elay

ed M

emo

ry

*

Corr

elat

ion

is s

igni

fican

t at

the

0.0

5 le

vel (

2.ta

iled)

** C

orre

latio

n is

sig

nific

ant

at t

he 0

.01

leve

l (2-

taile

d)

Mod

ified

Min

i Men

tal S

tate

(3M

S) s

core

s w

ere

ente

red

in S

tep

1 of

bo

th m

ultip

le r

egre

ssio

ns t

o co

ntro

l for

dem

entia

sev

erity

.

Th

ere

was

a s

igni

fican

t re

latio

nshi

p be

twee

n th

e de

laye

d m

emor

y co

mpo

site

(D

MC)

and

fun

ctio

nal a

bilit

y.

W

hen

cont

rolli

ng f

or le

vel o

f im

pairm

ent

by e

nter

ing

3MS

at

Step

1, t

he e

xecu

tive

skill

s co

mpo

site

fai

led

to a

ccou

nt f

or a

si

gnifi

cant

pro

port

ion

of t

he v

aria

nce

in

Func

tiona

l Abi

lity

(less

th

an 2

% o

f un

ique

var

ianc

e) w

hen

ente

red

in S

tep

2. I

n co

ntra

st t

o ex

ecut

ive

skill

s, t

he d

elay

ed m

emor

y co

mpo

site

ac

coun

ted

for

over

10%

of

uniq

ue v

aria

nce

in t

he F

unct

iona

l Ab

ility

sco

re, e

ven

afte

r ac

coun

ting

for

the

varia

nce

asso

ciat

edw

ith le

vel o

f co

gniti

ve im

pairm

ent

(i.e.

, alm

ost

8%).

Th

e E

ffe

cts

of

a

Th

e E

ffe

cts

of

a ““

Wa

lkin

g W

hile

Ta

lkin

gW

alk

ing

Wh

ile T

alk

ing

””D

ua

lD

ua

l --T

ask

on

Am

bu

lati

on

in E

arl

yT

ask

on

Am

bu

lati

on

in E

arl

y-- S

tag

e

Sta

ge

A

lzh

eim

er

Dis

ea

se a

nd

No

rma

l Ag

ing

Alz

he

ime

r D

ise

ase

an

d N

orm

al A

gin

gJo

ce

lyn

Po

oc

k, V

an

ina

Da

l Be

lloJo

ce

lyn

Po

oc

k, V

an

ina

Da

l Be

llo-- H

aa

s &

Ma

rga

ret

Cro

ssle

yH

aa

s &

Ma

rga

ret

Cro

ssle

yU

niv

ers

ity

of

Sa

ska

tch

ew

an

Un

ive

rsit

y o

f S

ask

atc

he

wa

n

Abs

trac

t

Pre

viou

s st

udie

s w

ith A

lzhe

imer

Dis

ease

(AD

) pat

ient

s ha

ve s

ugge

sted

th

at s

peed

and

acc

urac

y in

wal

king

can

be

diffe

rent

ially

affe

cted

by

a co

ncur

rent

cog

nitiv

e ta

sk, s

uch

as a

ver

bal f

luen

cy ta

sk. (

i.e.,

Cam

icol

i et

al.,

1997

; Coc

chin

i et a

l., 2

004;

She

ridan

et a

l., 2

003)

. The

pre

sent

stu

dy

exam

ined

the

effe

cts

of a

cog

nitiv

e ta

sk o

n ga

it sp

eed

in h

ealth

y ol

der

adul

ts a

nd p

roba

ble

early

AD

pat

ient

s. F

ourte

en h

ealth

y ol

der a

dults

(6

men

, 8 w

omen

; mea

n ag

e= 7

2.9)

and

15

early

AD

par

ticip

ants

( 7

men

, 8

wom

en; m

ean

age

= 76

.7) p

erfo

rmed

a ti

med

wal

king

task

and

sim

ple

and

com

plex

ver

bal c

ount

ing

task

s (i.

e., c

ount

ing

forw

ard

by 1

’s o

r ba

ckw

ard

by 2

’s) i

n si

ngle

and

dua

l-tas

k co

mbi

natio

ns. P

erce

nt

decr

emen

t sco

res

wer

e co

mpa

red

usin

g a

repe

ated

mea

sure

s de

sign

w

ith b

etw

een

grou

p co

mpa

rison

bet

wee

n th

e he

alth

y ol

der a

dults

and

the

prob

able

ear

ly A

D p

artic

ipan

ts (3

MS

rang

ing

from

21-

28).

Con

trary

to

prev

ious

find

ings

, the

pre

sent

stu

dy fo

und

that

eve

n th

ough

sin

gle

task

w

alki

ng ra

tes

for t

he h

ealth

y ol

der a

dults

(mea

n =

54.0

3, S

D=9

.57)

) and

ea

rly A

D p

atie

nts

(mea

n =

40.5

8, S

D =

7.5

8) w

ere

sign

ifica

ntly

diff

eren

t (p

=.00

1); p

erce

nt d

ecre

men

t sco

res

show

that

ear

ly A

D p

atie

nts

are

not

diffe

rent

ially

impa

ired

by a

gai

t dua

l-tas

k, re

gard

less

of t

he le

vel o

f tas

k co

mpl

exity

. Ana

lyse

s di

d ho

wev

er, r

evea

l a p

redi

ctab

le m

ain

effe

ct fo

r ta

sk d

iffic

ulty

. Ove

rall,

the

pres

ent s

tudy

did

not

find

any

diff

eren

tial

impa

irmen

t for

par

ticip

ants

with

ear

ly A

D u

sing

a ta

lkin

g w

hile

wal

king

du

al-ta

sk.

Intr

oduc

tion

•Rec

ent r

esea

rch

sugg

ests

the

abili

ty to

div

ide

atte

ntio

n du

ring

wal

king

(i.

e., d

ual-t

ask

perfo

rman

ce) a

ppea

rs to

be

parti

cula

rly v

ulne

rabl

e to

the

effe

cts

of A

lzhe

imer

’s D

isea

se.1,

H

owev

er, t

he s

tage

at w

hich

indi

vidu

als

with

Alz

heim

er’s

Dis

ease

sho

w im

pairm

ent i

n du

al-ta

sk p

erfo

rman

ce is

so

mew

hat c

ontro

vers

ial.

•Som

e st

udie

s ha

ve s

how

n th

at a

ttent

iona

l im

pairm

ents

(i.e

., in

abili

ty to

di

vide

atte

ntio

n) a

re a

mon

g th

e fir

st n

on-m

emor

y do

mai

ns to

be

affe

cted

in

ear

ly s

tage

Alz

heim

er’s

Dis

ease

, whi

le o

ther

s ha

ve fo

und

that

in

divi

dual

s in

the

early

sta

ges

of d

emen

tia p

erfo

rm n

orm

ally

on

dual

-task

m

easu

res.

2

•The

pre

sent

stu

dy c

ompa

red

dual

-task

per

form

ance

in in

divi

dual

s w

ith

AD

and

in a

n ag

e ap

prop

riate

, hea

lthy

cont

rol g

roup

to e

xam

ine

whe

ther

de

ficits

in d

ivid

ed a

ttent

ion

are

pres

ent i

n th

e ea

rly s

tage

of A

D.

Res

ults

Proc

edur

e: V

erba

l Cou

ntin

g an

d W

alki

ng T

asks

•Par

ticip

ants

firs

t per

form

ed e

ach

of th

e co

mpo

nent

task

s du

ring

15 s

si

ngle

task

tria

ls.

Task

1: W

alki

ng

•Par

ticip

ants

wer

e in

stru

cted

to w

alk

dow

n a

hallw

ay 1

5 fe

et, t

o a

line

indi

cate

d by

whi

te ta

pe o

n th

e flo

or, t

urn

and

wal

k ba

ck (3

0 fe

et to

tal).

Part

icip

ants

•Clin

ical

Par

ticip

ants

:

•Fift

een

( 7 m

en, 8

wom

en) i

ndiv

idua

ls d

iagn

osed

with

pro

babl

e ea

rly s

tage

AD

(i.e

., M

MS

E ra

ngin

g fro

m 2

1-28

) who

wer

e re

ferr

ed to

th

e R

ural

and

Rem

ote

Mem

ory

Clin

ic fo

r a c

ompr

ehen

sive

as

sess

men

t of c

urre

nt c

ogni

tive

func

tioni

ng.

•Mea

n ag

e =

76.7

yea

rs

•Con

trol

Par

ticip

ants

:

•Fou

rteen

hea

lthy

olde

r adu

lts (6

men

, 8 w

omen

) who

acc

ompa

nied

th

e cl

inic

al p

artic

ipan

ts to

the

Rur

al a

nd R

emot

e M

emor

y C

linic

.

•Mea

n ag

e =

72.9

•Due

to a

risk

of f

alls

, eac

h pa

tient

’s a

bilit

y to

par

ticip

ate

in th

e fo

llow

ing

proc

edur

e w

as d

eter

min

ed p

rior t

o te

stin

g by

the

clin

ic

phys

ioth

erap

ist u

sing

the

Tim

ed-U

p an

d G

o (T

UG

), a

clin

ical

bal

ance

sc

reen

ing

tool

.

Dua

l-Tas

k Tr

ials

•Par

ticip

ants

wer

e th

en a

sked

to p

erfo

rm th

e w

alki

ng a

nd v

erba

l co

untin

g ta

sks

conc

urre

ntly

, in

the

sim

ple

(i.e.

, wal

king

and

cou

ntin

g fo

rwar

d by

1’s

) and

the

diffi

cult

(i.e.

, wal

king

and

cou

ntin

g ba

ckw

ards

by

2’s

) con

ditio

ns.

•Per

cent

dec

rem

ent s

core

s, w

hich

allo

w fo

r an

asse

ssm

ent o

f the

pr

opor

tiona

l cha

nge

in a

n in

divi

dual

’s p

erfo

rman

ce d

urin

g du

al-ta

sk

cond

ition

s re

lativ

e to

his

/her

per

form

ance

dur

ing

the

sing

le-ta

sk

cond

ition

s4 w

ere

used

to m

easu

re p

erfo

rman

ce.

Dis

cuss

ion

•Alth

ough

ana

lyse

s di

d re

veal

a p

redi

ctab

le m

ain

effe

ct fo

r tas

k di

fficu

lty (p

=.00

2); c

ontra

ry to

pre

viou

s fin

ding

s, th

e pr

esen

t stu

dy

foun

d th

at in

divi

dual

s w

ith e

arly

sta

ge A

D a

re n

ot d

iffer

entia

lly

impa

ired

by a

gai

t dua

l-tas

k re

gard

less

of t

ask

com

plex

ity.

•Whi

le in

divi

dual

s w

ith A

D w

alke

d si

gnifi

cant

ly s

low

er th

an n

orm

al

olde

r adu

lts (p

=.00

1), p

erce

nt d

ecre

men

t sco

res

show

that

whe

n co

mpa

red

with

an

appr

opria

te c

ontro

l gro

up th

e ef

fect

for t

ask

com

plex

ity d

isap

pear

s.

•The

se re

sults

sug

gest

that

impa

irmen

ts in

div

ided

atte

ntio

n m

ay n

ot

be a

mon

g on

e of

the

first

non

-mem

ory

dom

ains

to b

e af

fect

ed b

y A

D

and

that

one

of t

he m

ajor

effe

cts

of e

arly

AD

app

ears

to b

e an

ov

eral

l slo

win

g of

gai

t.

Task

2: C

ount

ing

•Par

ticip

ants

wer

e in

stru

cted

to s

tart

at a

giv

en n

umbe

r (e.

g., 1

or

70) a

nd c

ount

out

loud

in b

oth

sim

ple

(i.e.

, cou

ntin

g fo

rwar

d by

1’s)

an

d co

mpl

ex (i

.e.,

coun

ting

back

war

ds b

y 2’

s) c

ondi

tions

.

Ref

eren

ces

•S

herid

an, P

., S

olom

ont,

J., K

owal

l, N

., &

Hau

sdor

ff, J

. (20

03).

Influ

ence

of e

xecu

tive

func

tion

on lo

com

otor

func

tion:

Div

ided

at

tent

ion

incr

ease

s ga

it va

riabi

lity

in A

lzhe

imer

’s D

isea

se. J

ourn

al

of th

e Am

eric

an G

eria

trics

Soc

iety

, 51(

11):

1633

-163

7.

•P

erry

R.J

., &

Hod

ges,

J.R

. (19

99).

Atte

ntio

n an

d ex

ecut

ive

defic

its

in A

lzhe

imer

’s D

isea

se: A

crit

ical

revi

ew. B

rain

, 122

,383

-404

.

•C

amic

ioli,

R.,

How

ieso

n, D

., Le

hman

, S.,

& K

aye,

J. (

1997

). Ta

lkin

g w

hile

wal

king

: the

effe

ct o

f a d

ual t

ask

in a

ging

and

A

lzhe

imer

’s d

isea

se. N

euro

logy

, 48(

4):9

55-9

58.

Met

hods

: Dua

l-Tas

k

Dec

rem

ent S

core

s in

Sim

ple

and

Com

plex

Dua

l-Tas

k C

ondi

tions

05101520253035

Sim

ple

Com

plex

Gro

up

% decrement scores

Clin

ical

C

ontro

l

Develo

pin

g D

em

en

tia S

creen

ing

To

ols

fo

r N

ort

hern

Ab

ori

gin

al

Sen

iors

: P

art

neri

ng

wit

h K

eew

ati

n Y

att

hé

RH

A H

om

e C

are

Serv

ices

M.

Cro

ssle

y,

S.

Lan

tin

g,

M.

O’C

on

nell

, D

. M

org

an

, &

Th

e K

eew

ati

n Y

att

hé

Ho

me C

are

Team

Per

form

ance

on m

enta

l st

atus

scre

enin

g t

ests

(e

.g.,

MM

SE)

is influen

ced b

y cu

lture

, la

nguag

e, a

nd e

duca

tion.

Dev

elopin

g a

sses

smen

t an

d c

onsu

ltat

ion

serv

ices

for

old

er A

borigin

al a

dults

with

cognitiv

e im

pai

rmen

t or

dem

entia

who r

esid

e in

rem

ote

Nort

her

n c

om

munitie

s m

ust

addre

ss

the

cultura

l bia

s of

exis

ting a

sses

smen

t pro

toco

ls.

Cognitiv

e sc

reen

ing t

ools

for

Nort

her

n

Aborigin

al s

enio

rs s

hould

be

dev

eloped

co

llabora

tive

ly w

ith fro

nt-

line

hea

lth c

are

work

ers

and h

om

e ca

re m

anag

ers

who r

esid

e an

d w

ork

in t

he

Nort

h.

Little

is k

now

n a

bout

cognitiv

e ch

ange

in

norm

al a

gin

g a

nd t

he

pre

vale

nce

of dem

entia

among A

borigin

al s

enio

rs,

des

pite

the

rapid

gro

wth

of

this

dem

ogra

phic

gro

up.

Cultura

lly

appro

priat

e m

enta

l st

atus

pro

toco

ls a

re

nee

ded

to a

dva

nce

know

ledge

in t

hes

e ar

eas.

Work

ing g

roups

with o

ur

Kee

wat

in Y

atth

épar

tner

s, a

nd o

ur

exper

ience

s in

the

Rura

l an

d

Rem

ote

Mem

ory

Clin

ic s

upport

our

foundat

ional

work

and h

ighlig

ht

the

import

ance

of:

Dev

elopin

g a

scre

enin

g t

ool th

at d

oes

not

assu

me

or

require

form

al e

duca

tion

Modifyi

ng a

sses

smen

ts t

o e

nab

le h

om

e-bas

ed

inte

rvie

ws

by

front-

line

hea

lth w

ork

ers

Inco

rpora

ting c

olo

ur,

hum

our,

and fam

iliar

im

ages

and m

ater

ials

into

ass

essm

ent

pro

toco

ls t

o b

ette

r en

gag

e Aborigin

al s

enio

rs

Incl

udin

g fam

ily c

areg

iver

s in

the

asse

ssm

ent

of

activi

ties

of

dai

ly liv

ing a

nd c

han

ges

in

funct

ional

sta

tus.

Intr

od

uct

ion

Resu

lts

A s

erie

s of w

ork

ing g

roups

wer

e co

nduct

ed w

ith

NET fac

ulty,

gra

duat

e st

uden

ts,

and K

eew

atin

Yat

thé

Hom

e Car

e Ser

vice

s st

aff

to furt

her

m

odify

the

scre

enin

g t

ools

in c

olla

bora

tion w

ith

front-

line

hea

lth w

ork

ers.

1)

Key

info

rman

t in

terv

iew

s w

ith A

borigin

al

senio

rs (

Sas

kato

on C

om

munity

Clin

ic

Gra

ndm

oth

ers’

Gro

up)

and f

ield

work

in

Nort

her

n c

om

munitie

s guid

ed t

est

dev

elopm

ent

and m

odific

atio

n (

Lanting

et a

l.,

2007).

2)

Cas

e st

udy

anal

yses

of

modifie

d s

cree

nin

g

tools

(Com

munity

Scr

eenin

g I

nte

rvie

w for

Dem

entia,

Hal

l et

al.,

1993;

Cognitiv

e Abili

ties

Scr

eenin

g I

nst

rum

ent,

Ten

g

et a

l.,

1994)

use

d w

ith A

borigin

al s

enio

rs in t

he

Rura

l a

nd R

emote

Mem

ory

Clin

ic iden

tified

st

rength

s an

d lim

itat

ions

(Lan

ting

et a

l.,

2008).

Fo

un

dati

on

al

Wo

rk

Dis

cuss

ion

•Bas

ed o

n o

ur

work

with A

borigin

al s

enio

rs,

seve

ral ye

ars

of

exper

ience

in t

he

Rura

l an

d

Rem

ote

Mem

ory

Clin

ic,

and a

ser

ies

of

work

shops

with K

eew

atin

Yat

thé

Hom

e Car

e st

aff,

we

hav

e m

odifie

d e

xist

ing d

emen

tia

scre

enin

g t

ools

that

wer

e dev

eloped

for

cross

-cu

ltura

l as

sess

men

t (i

.e.,

CSI`

D’, C

ASI)

, to

bet

ter

mee

t th

e nee

ds

of Aborigin

al s

enio

rs

livin

g in r

emote

Nort

her

n c

om

munitie

s.

•The

resu

ltin

g d

emen

tia

scre

enin

g p

roto

col has

bee

n d

esig

ned

for

hom

e-bas

ed a

dm

inis

trat

ion

by

front-

line

hea

lth c

are

work

ers.

We

assu

me

the

par

tici

pat

ion o

f a

fam

ily c

areg

iver

or

close

fr

iend w

ho k

now

s th

e se

nio

r w

ell.

The

asse

ssm

ent

is c

onduct

ed in t

he

languag

e of

the

senio

r, a

nd d

oes

not

require

form

al e

duca

tion o

r ex

posu

re t

o u

rban

culture

.

•The

pro

toco

l gen

erat

es m

easu

res

of

fun

ctio

nal

statu

s, b

ased

on t

he

care

giv

er inte

rvie

w,

and

cog

nit

ive s

core

sth

at a

re c

om

par

able

to t

he

MM

SE a

nd o

ther

com

monly

use

d s

cree

ns.

Next

Ste

ps:

In c

olla

bora

tion w

ith o

ur

Nort

her

n p

artn

ers,

we

will

1)

fine-

tune

our

asse

ssm

ent

pro

toco

ls

2)

conduct

pilo

t w

ork

with t

he

modifie

d s

cree

nin

g

tools

3)

ensu

re t

hat

the

mea

sure

s ar

e ac

cepta

ble

and

rele

vant

to t

he

com

munity

4)

esta

blis

h s

ensi

tivi

ty t

o c

ognitiv

e im

pai

rmen

t an

d

early-

stag

e dem

entia,

and e

ase

of per

form

ance

by

hea

lthy

Aborigin

al s

enio

rs w

ithout

form

al

educa

tion o

r ex

pos

ure

to u

rban

culture

Su

mm

ary

an

d D

iscu

ssio

n

Fig

ure

s: S

cree

nin

g inst

rum

ents

nee

d t

o r

efle

ct t

he

culture

and

envi

ronm

ent

of Abori

gin

al s

enio

rs w

ho liv

e in

rem

ote

com

munitie

s

Cu

rren

t M

eth

od

s

Ack

now

ledg

emen

ts: R

uth

Bud

gell,

Jim

my

Era

smus

Sen

ior

Citi

zens

Hom

e; P

at K

raus

, Mus

keg

Lake

Eld

ers

Car

e H

ome

Bob

bie

Bird

, Lak

evie

w L

odge

Sta

ndin

g Bu

ffalo

Per

sona

lC

are

Hom

e.

FIR

ST N

ATI

ON

LO

NG

-TE

RM

CA

RE

FA

CIL

ITIE

S: I

NIT

IAL

OB

SER

VA

TIO

NS

L. M

cBai

n1D

. Mor

gan2

The

Faci

litie

s

Prel

imin

ary

Obs

erva

tion

s

Nex

t S

teps

1Fi

rst N

atio

ns U

nive

rsity

of C

anad

a; 2 C

anad

ian

Cen

tre fo

r Hea

lth a

nd S

afet

y in

Agr

icul

ture

, Uni

vers

ityof

Sas

katc

hew

an

Jim

my

Eras

mus

Sen

ior C

itize

ns H

ome

Beh

chok

o,

NW

T

Intr

odu

ctio

n a

nd

Rat

ion

ale

As

the

seni

or A

borig

inal

pop

ulat

ion

incr

ease

s in

C

anad

a th

ere

is a

gro

win

g ne

ed fo

r eld

er c

are.

Fi

rst N

atio

n le

ader

s ha

ve e

stab

lishe

d fa

cilit

ies

to

prov

ide

bette

r acc

ess

to c

ultu

rally

sen

sitiv

e lo

ng-

term

car

e ne

eds

of A

borig

inal

peo

ple

whi

le th

ey

rem

ain

in, o

r clo

ser t

o, th

eir c

omm

uniti

es.

Vis

its

to th

ree

of th

e fa

cilit

ies

and

inte

rvie

ws

with

the

adm

inis

trato

r are

hig

hlig

hted

in th

is p

rese

ntat

ion. Th

e Ad

min

istra

tor o

f the

Jim

my

Era

smus

Sen

ior C

itize

n’s

hom

e st

ated

th

at th

e co

mm

unity

look

s af

ter t

hose

ne

edin

g ca

re a

nd th

at p

eopl

e ar

e ve

ry

relu

ctan

t to

put f

amily

mem

bers

in th

e ho

me.

The

Jim

my

Era

smus

Sen

ior

Citi

zens

Hom

e is

an

8-be

d lo

ng-te

rm

care

faci

lity.

A 1

6 un

it in

depe

nden

t liv

ing

unit

clos

ed d

ue to

pro

blem

s w

ith

mou

ld. H

ome

care

is in

its

infa

ncy

in th

e re

gion

but

a d

ay c

are

prog

ram

is

offe

red

by th

e Ji

mm

y E

rasm

us C

entre

. D

aily

atte

ndan

ce v

arie

s be

twee

n 5

to

10 p

eopl

e.

Mus

keg

Lake

Eld

ers

Car

e H

ome,

Mus

keg

Lake

Firs

t Nat

ion,

Sa

sk.

Trea

ty 6

Ter

ritor

y. M

uske

g La

ke is

loca

ted

appr

oxim

atel

y 10

0 km

. N

orth

wes

t of S

aska

toon

. Th

e E

lder

s C

are

hom

e is

a 3

0 be

d fa

cilit

y ad

min

iste

red

by th

e M

uske

g La

ke C

ree

Nat

ion

Dire

ctor

of H

ealth

and

S

ocia

l Dev

elop

men

t who

repo

rts to

the

Boa

rd o

f dire

ctor

s co

nsis

ting

of

the

Mus

keg

Lake

Chi

ef a

nd c

ounc

il.

Fund

ing

arra

ngem

ents

invo

lve

the

Mus

keg

Lake

Firs

t Nat

ion,

the

Gov

ernm

ent o

f Sas

katc

hew

an a

nd P

rince

Alb

ert P

arkl

and

Dis

trict

. Th

roug

h a

pilo

t pro

ject

the

prov

inci

al g

over

nmen

t pro

vide

s $1

.5 m

illio

n ov

er tw

o ye

ars

to fu

nd 1

5 of

the

30 b

ed o

n re

serv

eM

uske

g La

ke

faci

lity.

It is

the

first

tim

e th

e pr

ovin

cial

gov

ernm

ent h

as c

omm

itted

m

oney

to a

car

e ho

me

on-re

serv

e w

hich

is n

orm

ally

an

area

of f

eder

al

juris

dict

ion.

Trea

ty 1

1 Te

rrito

ry.

The

Tlic

hoS

elf-

Gov

ernm

ent A

gree

men

t was

sig

ned

in

2005

. Th

e Tl

icho

Com

mun

ity S

ervi

ces

Agen

cy p

rovi

des

a ra

nge

of h

ealth

and

so

cial

ser

vice

faci

litie

s in

clud

ing

the

Jim

my

Era

smus

Sen

ior C

itize

n’s

Hom

e.

The

Hom

e se

rves

the

four

Tlic

hoco

mm

uniti

es o

f Beh

chok

o(p

op. 1

894)

, G

amet

i(po

p. 3

01),

Wek

wee

ti(p

op.1

40),

and

Wha

ti(p

op. 5

13).

The

pilo

t pro

ject

will

giv

e Fi

rst N

atio

ns s

enio

rs th

e ch

ance

to

rem

ain

in th

eir c

omm

uniti

es n

ear t

heir

fam

ilies.

It i

s an

op

portu

nity

to p

artn

er w

ith a

Firs

t Nat

ion

to e

nsur

e ca

re is

ac

cess

ible

in it

s ho

me

com

mun

ity(J

. Dra

ude

2009

)

Lake

view

Lod

ge S

tand

ing

Buf

falo

Per

sona

l Car

e H

ome,

Sta

ndin

g B

uffa

lo F

irst N

atio

n, S

ask .

40-b

ed u

nit o

wne

d an

d op

erat

ed b

y S

tand

ing

Buffa

lo D

akot

a N

atio

n w

hich

ope

ned

in J

une

1999

. It

is th

e fir

st a

nd la

rges

t on-

rese

rve

Abor

igin

al-o

wne

d an

d op

erat

ed p

erso

nal c

are

hom

e in

C

anad

a. I

t is

prov

inci

ally

lice

nsed

and

ope

n to

bot

h A

borig

inal

and

non-

Abo

rigin

al a

dults

. In

dian

and

Nor

ther

n A

ffairs

Can

ada

(INA

C) w

ill n

ot fu

nd b

and

mem

bers

who

resi

de o

ff re

serv

e bu

t w

ant t

o m

ove

into

the

faci

lity.

Our

trad

ition

s an

d cu

ltura

l val

ues

teac

h us

to

resp

ect o

ur e

lder

s. W

e ar

e pr

oud

to

prov

ide

a he

alth

y ca

ring

envi

ronm

ent

crea

ting

an a

tmos

pher

e of

dig

nity

and

re

spec

t for

our

resi

dent

s(L

akev

iew

Lod

ge M

issi

on

Sta

tem

ent)

All

parti

es –

the

rese

rve,

the

prov

ince

, th

e fe

dera

l gov

ernm

ent a

nd th

e he

alth

re

gion

nee

d to

be

on th

e sa

me

page

on

how

to s

uppo

rt bu

ildin

g el

der c

are

serv

ices

on

rese

rves

(Cec

ile H

unt,

CEO

Prin

ce

Alb

ert P

arkl

and

Hea

lth R

egio

n)

•The

sig

nific

ance

of s

elf

gove

rnm

ent/b

and

cont

rol o

f hea

lth

care

ser

vice

s•J

uris

dict

iona

l cha

lleng

es b

ut a

lso

solu

tions

•Div

ersi

ty o

f res

iden

ts a

t fac

ilitie

s

•Mee

t with

Chi

ef a

nd C

ounc

il fo

r in

put a

nd a

ppro

val f

or a

stu

dy

•Vis

it ot

her F

irst N

atio

n on

-rese

rve

faci

litie

s

•Inve

stig

ate

fund

ing

arra

ngem

ents

Design and Operation of a multidisciplinary memory clinic using telehealth technology to

serve a rural and remote populationA Kirk, M Crossley, S Harder, J Basran, V Dal Bello-Haas, D Morgan, N Stewart, C D’Arcy, J Biem, D Forbes, L Holfeld.

University of Saskatchewan

Background/Aims: The Canadian province of Saskatchewan has a population of only one million but is larger than most of the world’s countires. We developed a Memory Clinic to serve rural patients with early dementia.

ORGANIZATION OF DAY FOR PATIENT 1 & FAMILYORGANIZATION OF DAY FOR PATIENT 1 & FAMILY

0830: Arrive at clinic:0830: Arrive at clinic:Coffee.Coffee.Oriented to day, consent obtained.Oriented to day, consent obtained.Patient and family begin completing questionnaires.Patient and family begin completing questionnaires.

Patient InterviewPatient Interview::Life Concerns ScaleLife Concerns ScaleIADLIADLMemory ScaleMemory ScalePerceived Stress ScalePerceived Stress ScaleQuality of LifeQuality of LifeCESCES--DDPleasant Events Scale Pleasant Events Scale ––ADAD

Family/CaregiveFamily/Caregiver:r:Functional Activities QuestionnaireFunctional Activities QuestionnaireBristol ADLBristol ADLQuality of LifeQuality of LifeNeuropsychiatricNeuropsychiatric InventoryInventoryZaritZarit BurdenBurdenBrief Symptom InventoryBrief Symptom InventoryShort Form Health Survey (SFShort Form Health Survey (SF--12)12)

0940: Neurological examination of patient0940: Neurological examination of patientFamily continue discussion with Family continue discussion with neuropsychologyneuropsychology..

1200: Lunch for patient and family1200: Lunch for patient and family

1300: Further assessment by geriatrician.1300: Further assessment by geriatrician.

1400: CT scan1400: CT scan

1500: Physiotherapy gait 1500: Physiotherapy gait assessment.assessment.

1630: Patient and family meet with neurologist, 1630: Patient and family meet with neurologist, neuropsychologistneuropsychologist,,geriatriciangeriatrician

1700: Patient and family head home.1700: Patient and family head home.

Neuropsychological assessment:

Cognitive Screens:Cognitive Screens:

Modified MiniModified Mini--Mental State (3MS)Mental State (3MS)Clock TestClock Test

Estimates of Estimates of PremorbidPremorbid Intelligence:Intelligence:WRATWRAT--IIIIIIWAISWAIS--III (4 subtests)III (4 subtests)

Repeatable Battery for the Assessment of Repeatable Battery for the Assessment of Neuropsychological Status (RBANS):Neuropsychological Status (RBANS):

Immediate MemoryImmediate MemoryVisuospatialVisuospatial/Constructional/ConstructionalLanguageLanguageAttentionAttentionDelayed MemoryDelayed Memory

Orientation & Freedom from Distraction:Orientation & Freedom from Distraction:Mental ControlMental ControlDigit Span (Forward & Backward)Digit Span (Forward & Backward)

Attention/Executive Functions:Attention/Executive Functions:StroopStroop TestTest

Memory & Learning:Memory & Learning:Prairie Prairie BuschkeBuschke

Modification of Modification of BuschkeBuschke Cued Recall TestCued Recall Test

Language:Language:Token TestToken TestLetter Word NamingLetter Word NamingAnimal NamingAnimal NamingGrasshoppers & Geese (Modification of Pyramids & Grasshoppers & Geese (Modification of Pyramids & Palm Trees Test)Palm Trees Test)

Manual Strength & Dexterity:Manual Strength & Dexterity:Grooved PegboardGrooved PegboardGrip StrengthGrip StrengthFinger TappingFinger Tapping

Additional:Additional:Behavioral Rating ScaleBehavioral Rating ScaleSaskatchewan Mood InventorySaskatchewan Mood Inventory

Community Screening Interview for Dementia Community Screening Interview for Dementia (CSI(CSI””D):D):Where necessary due to language/cultural Where necessary due to language/cultural differences.differences.

Original Original BuschkeBuschkeCued Recall TestCued Recall Test

Pictorial Pictorial Prairie Prairie BuschkeBuschke

Methods: Upon referral, a telehealth visit using videoconferencing allows patients and families in their own communities to meet the clinic nurse and neuropsychologist for orientation and preliminary data collection. Blood tests are taken during that visit. Patient and family then travel to Saskatoon for an in-person appointment. The neurologist sees patients in follow-up at 6 and 12 weeks, 6 and 12 months, and then annually or as needed. Patients are randomly allocated to 6 week appointment either in-person in Saskatoon or via telehealth with subsequent appointments alternating between in-person and telehealth. Patients and family complete questionnaires to rate satisfaction and convenience of visits.

DIAGNOSES (First 200 patients)DIAGNOSES (First 200 patients)

35% Alzheimer35% Alzheimer’’s diseases disease14% Mild Cognitive Impairment14% Mild Cognitive Impairment11%11% FrontotemporalFrontotemporal Dementia Dementia 11% Mixed Vascular/Alzheimer11% Mixed Vascular/Alzheimer’’ss10% Normal 10% Normal 7% Vascular 7% Vascular 6% Dementia with 6% Dementia with LewyLewy BodiesBodies

3% Vascular Cognitive Impairment3% Vascular Cognitive Impairment1% Normal Pressure Hydrocephalus1% Normal Pressure Hydrocephalus1% Huntington1% Huntington’’s Diseases Disease

Travel saved by Telehealth (Travel saved by Telehealth (kmskms round round trip)trip)

Mean distance to Telehealth = 78Mean distance to Telehealth = 78Mean distance to Saskatoon = 518Mean distance to Saskatoon = 518Distance saved by Telehealth = 440Distance saved by Telehealth = 440

Satisfaction with follow-up appointment

Telehealth 4.65 (0.12)

In-person 4.44 (0.10)

P = 0.125

(1 – very dissatisfied,5 – very satisfied)

Convenience of appointment

Telehealth 4.77 (0.08)

In-person 3.69 (0.16)

P <0.0001

(1 – very inconvenient,5 – very convenient)

Conclusion: A multi-disciplinary telehealth-based memory clinic is an effective way to assess and care for dementia patients in remote areas.

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 Saskatchewan103 Hospital Drive, Box 120, RUHSaskatoon, SK S7N 0W8 Canada

Telephone: (306) 966-7905Facsimilie: (306) 966-8799Email: debra.morgan@usask.cahttp://cchsa-ccssma.usask.ca

NOTES: