Caregiver Support - Collective Action Lab

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Running head: CAREGIVER SUPPORT



1

10/9
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Prepar
e Minnesota for Alzheimer’s

Alzheimer’s D
isease

Curricula

Module X



Caregiver Support








GUIDELINES FOR AND RESTRICTIONS ON USE OF CURRICULUM MODULES

This curriculum was created for faculty across multiple disciplines to use in existing coursework and/or
to develop a stand
-
alone course in dementia. Due to the fact that not all modules will be used for all
disciplines, topics have been divided into ten
modules that can be used alone or in combination with other
modules. Users may reproduce, combine and/or customize any module text and accompanying teaching
slides to meet course needs. Our only restriction on re
-
use is that the modules not be sold in the
ir current
or modified form.


NOTE: Recognizing that not all modules will be used with all potential audiences, there is some
duplication across the modules to ensure that key information is contained in each module (e.g.,
screening module is completely d
uplicated in the diagnosis module because the diagnosis module is not
appropriate for all audiences).



© 2012


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Acknowledgement


We gratefully acknowledge our funding organizations, which made development of this curriculum
possible:
T
he Alzheimer’s
Association MN/ND Chapter and The Minnesota Area Geriatric Education
Center (MAGEC), which is housed in the University of MN School of Public Health, and i
s

funded by the
Health Resources and Services Administration (HRSA).


We also
special
ly

acknowledge t
he

principal drafters

of one or more curriculum

modules
,

including

Mike
Rose
nbloom, MD,
Olivia Mastry, MPH, JD, Gregg Colburn
, MBA

and The Alzheimer’s Association.


In addition, we would like to thank the following contributors and the peer review
team:

Mi
chelle Barclay
,

MA

Terry Barclay, PhD

Marsha Berry
, MA, CAEd

Erin Hussey
,

DPT, MS, NC
S

Sue Field, DNP, RN, CNE

Jane Foote EdD, MSN, RN

Helen Kivnik, PhD

Kenndy Lewis
, MS

Riley McCarten, MD

Teresa McCarthy, MD, MS,

Lynne Morishita
,

GNP,MSN

Becky
Olson
-
Kellogg
,

PT, DPT,GCS

Jim Pacala, MD, MS

Patricia Schaber
,

PhD, OTR/L

John Selstad

Eric
k
a Tung
,

MD, MPH

Jean Wyman


This curriculum is available for use and/or customization by anyone, as long as it is not sold in its current
or modified form.














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Overview of Alzheimer’s Disease Curricula


This module is part of the Alzheimer’s Disease

C
urricula developed by Prepar
e Minnesota for
Alzheimer’s
.
Prepare Minnesota is a statewide, voluntary collaboration that includes over 50
organizations and 150 individuals seeking to prepare for the budgetary, social, and personal impacts of
Alzheimer’s disease .
All of the modules can be found online at xxxxx.co
m. [If you have comments or
suggestions on this or other modules, please do not hesitate to contact John Doe at xxxx@xxxx.com.]



Module I:

Disease Description


Module II:

Demographics


Module III:


Societal Impact



Module IV:

Effective Interactions


Module V:

Cognitive Assessment and the Value of Early Detection


Module VI:


Screening


Module VII:

Disease Diagnosis


Module VIII:


Quality Interventions



Module IX:


Dementia as an Organizing Principle of Care


Module X:


Caregiver Support


Module XI:

Alzheimer’s Disease Research


Module XII:


Glossary



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Module X
:

Learning Objectives

Upon completion of this module the student should:



I
dentify the difficult aspects of being a
caregiver for someone that has d
ementia
.



Demonstrate

an understanding of and
distinguish

between
,

activi
ties of daily living
(ADLs) and

instrumental

act
ivities of daily living (IAD
Ls)
.



Gain insight into the cost, r
isks and stressors that affect

caregivers.



Understand the correlation between a

caregiver’s health and well
-
being with the well
-
being of the person for whom they are caring.



Recognize

services that can be used to decrease stressors.





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Module X

Caregiver Support



The Nature of Caregivin
g for Individuals with Dementia


Caregiving
is a term that generally encompasses extraordinary
care that

exceeds the bounds of what is
usually considered typi
cal responsibilities for others

(Zarit
,

2009
,

p.
88).

This includes helping with one
or more activities of daily living (ADLs), including dre
ssing, bathing, incontinence, and feeding. It also
includes

providing help with instrumental

activities of daily living (IADLs), such as shopping, meal
preparation, transportation, medication management, and managing finances. In addition, caregiving
inc
ludes providing emotional support, per
sonal care, and case management

(Zarit
,

2009
, p. 89
).
Caregivers of individuals with dementia are more heavily involved with ADLs and IADLs

and dedicate
more time to these

responsibilities. (
Alzheimer’s Association a
nd
National Alliance for Caregiving
,

2004
),

(
Zarit
,
2009
, p. 89
)
.
Caregivers of those with dementia also face increased emotional and
psychological challenges given that the individual they are caring for, usually a loved one, often loses the
ability to re
cognize the caregiver and
can

exhibit

challenging behaviors as a part of the disease process.
(
Alzheimer’s Association and
National Alliance for Caregiving
,

2004
),

(
Zarit
,

2009
, p.
89)
.



The
Dementia Caregiver


Caregivers of individuals with dementia are usually adult children, spouses or other relatives
of the
individual with dementia

(National Alliance for Caregiving and American Association for Retired
Persons, 2004).

Most caregivers are women

who ha
ve

had

so
me college education, manage

work and
career

at some point in their lives
, and spend an average of 20 or more hours per week providing unpaid
care to someone 50 years or older.
C
aregivers
are mo
re likely to provide care that

results in
high burden
levels,

sometimes providing care more than 80 hours
of care
per week

(National Alliance for Caregiving
and American Association for Retired Persons, 2004).
While all caregivers are at risk for
both physical
and psychological hardships
, female caregivers in this
category are especially a
d
t risk

for health problems

(Zarit
,

200
9
,

p.
90
)
.


For education videos on caregiver issues, see
http://www.youtube.com/watch?v=1SPEWhue4Do

;

http://www.hbo.com/alzheimers/caregivers.html



The Risk
s

Associated with Caregiving



O
ver two decades

of

research
has shown family caregivers to be a vulnerable and at
-
risk population that
the
health and long
-
term care system often neglects (National Family Caregiver Alliance,
www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=439
),

(
Schulz

& Sherwood
,

2008
).
There are
many risks

associated with caregivin
g for individuals with dementia

includ
ing

physical, social,
psychological, and financial risks.




Physical Risks.


Caregiving is laden with physical risks.

The prolonged distress and physical
demands of careg
iving compromise caregivers’ physiological functioning and increase their risk
for health problems
. C
aregivers tend to have less time to rest when sick

and less

time to e
xercise
or to get adequate rest

(Zarit
,

2009
,

p. 92
).
C
aregivers consistently report

decreased overall
health and increased health problems
,

which can also contribute to increased rates of depression

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(Schulz et

al.,
199
5)
.
Research has shown that female caregivers providing more than 8 hours of
caregiving per week were twice as likely
as

non
-
caregivers
to have coronary heart disease, likely
due to elevated blood pressure, increased risk for hypertension,

and

poor
er immune functioni
ng

(Lee
,

et al.
,

2003). C
aregivers are

also

less likely to engage in preventive health behaviors and
exhibit incr
eased cardiovascular reactivity

(Lee et

al.
, 2003
)
, and they have a
greater prevalence
of chronic illnesses

and

higher mortality risk than non
-
caregivers (S
chul
z et

al.,
1995).




Social R
isks.


In addition to physical risks, caregivers often face social isolation
.

Caregiving for
individual
s with dementia

can be so time
-
consuming and demanding that many caregivers have
less time for family and friends. Many caregivers report having to gi
ve up social
activities
and
other
personal pleasures

and report higher levels of conflict
among family

(Ory
,

et al.
,

1999).
Th
ese conflicts

may further isolate

caregivers

from family and friends
, which contributes to the
feeling of being alone
.
Dementia
caregiving can be especially challenging for sp
o
usal

caregivers
who report high
er

levels of marital
conflict and decreased levels of positive

interactions with t
heir
spouse (Narayan, et al.,

2001). Dementia materially changes the nature of the marital
rel
ationship, which can be difficult for both spouses.




Psychological Risks.

Caregivers are also at risk

of
diminished

emotional health and well
-
being.
The psychological implication can be vast.

Depression is a serious risk factor for caregivers and
presen
ts

in multiple ways including stress, anxiety, fatigue and insomnia. (
Gallagher
-
Thompson,
et al.,

1989
)

,(
D
ura, et al.,

1991
).
In 2009, a survey conducted by the National Alliance of
Caregivers and AARP found that 40 percent of caregivers reported high em
otional stress

in their
caregiving roles
.
Stress is consistently linked to depression
, which can not only impact the
caregiver, but also indirectly ha
s

n
e
ga
t
ive consequences for the care recipient
.
This survey found
that caregivers who reported high emotional stress tended to be women,
who were primary
caregivers

living with
the
care recipient
s

and feeling that they had no choice in taking on the role
of caregiver.
(National Alliance for Caregiving a
nd American Association for Retired Persons,
2004;
Alzheimer’s Association, 2012)
.

Caregiving is also associated with anxiety disorder
s

compared to others who are not in a car
e
giving role
.

C
aregivers
of people with dementia
are 10
times more likely to me
et criteria for an anxiety disorder compared to non
-
d
ementia caregivers
(Dura et al., 1991)
.




Financial Risks
. Caregiving poses financial burdens on caregivers. Caregivers make many
financial sacrifices, including spending out of pocket on their care reci
pient
’s needs,
even if the
care
recipient is not a dependent

of

the caregiver
. This may include

making work adjustments,
retiring early, losing job benefits or going to work late, leaving early o
r

t
aking time off to provide
care

(National Alliance for Caregiving and American Associ
ation for Retired Persons, 2004),

(
Zarit
,

200
9
, p.

93
),

(
Ory et al., 1999).

Caregivers also have increased costs due to their own
health issues, which increase

while

in the caregiving role. In one st
udy, caregivers’ overall use
of health services increased by 25% and use of hospital and emergency room visits doub
led in an
18 month study period

(
National Alliance for Caregiving, Schulz & Cook
,

2011).


Imperative for

Supporting Caregivers


Caregivers play a critical role in supporting individuals with dementia and without them the health care
system could not sustain the costs of care for persons with dementia.
Currently,

70% of individuals with
Alzheimer’s disease and related dementias liv
e at home.
Eighty percent of care provided at home is
delivered by family caregivers; fewer than 10 percent of older adults receive all of their care from paid
workers. This results in ov
er 15 million Americans provid
ing

unpaid care for
those with dement
ia
. In
2011,
caregivers of individuals with dementia

provided an estimated 17.4 billion hours of unpaid care, a
contribution to the nati
on valued at over $210 billion

(Alzheimer’s Association
,
2012
). This number
represents an average of 21.9 hours of care per caregiver per week, or 1,139 hours of care per caregiver
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per year. With this care valued at $12.12 per hour, the estimated economic value of the care provided by
family and other unpaid careg
ivers of people with Alzheimer’s disease and other dementias was $210.5

billion in 2011

(
Alzheimer’s Association,

2012)
.



Caregivers’ health and well
-
being is critical to their ability to continue to provide the vital caregiving role.
For example, depre
ssion reduces a caregiver’s ability
to continue to provide for
an
indi
vidual with
dementia (Mok
,

et al.
,
2007) and may lead to increased depression in the care recipient
,

which can further
impair health and function associate
d

with dementia itself

(Eisendo
rf, et al.,

2003). Likewise,
c
aregivers
who report
feelin
g stressed because of the impaired person’s behavioral symptoms are more likely to
place their ca
re recipient in a nursing home

(Alzheimer’s Association
,

2012
).


The close connection between careg
iver health and well
-
being and
caregiver

ability to fulfill the
caregiving role, calls for assuring the availability of effective caregiver support
s to assist caregivers in
maintaining their health and well
-
being. Although

caregivers acknowledge the chall
enges and difficult
ies

of caregiving, they also report that there are many positive aspects of their caregiving role such as feeling
useful, important and competent

(Boe
rn
er
,
et al., 2004),

(
Cohen
,
et al.,

2002).
While evidence is still
emerging regarding
a predictive profile of caregiver well
-
being, we have learned that a caregiver with a
positive outlook on caregiving may experience less stress and physical ailments and be able to sustain the

caregiver role longer (Cohen

et

al.
, 2002
)
. C
aregivers who reported more positive feelings are less likely
to report depression (Cohen et al., 2002), even
following

bereavement (Boerner

et
al.
, 2004).

Thus,
caregivers need supports that will
not only help them understand the challenges of dementia, b
ut also
help
them maintain a positive outlook on their role.



Types
and Effective Components of Caregiver Support


General typ
es of caregiver support include

information and assistance, respite, counseling, support
groups
,
education, personal care, homem
aker/chore services, legal or financial services, and care
consultation. There is increasing evidence that caregiver assessment, education, and community resource
referral can all lead to improved well
-
being and enhancements in quality of life for both car
egiver and
care receiver
(Logsdon, et al., 2007),

(
S
örensen, et al.,

2002). Likewise, increased social support has been
linked to gr
eater well
-
being (Atienza
,

et al.,

2001), (Cohen, et al., 1986), (

Cohen & Wills, 1985), and
caregivers who have greater s
upport from their spouses and families have lower risk for depression
(Atienza et al.
, 2001
),

(Hooker, et al., 1998),

(
State of California, 2008
).



Core components of
effective
caregiver interventions
have been synthesized
and found to share the
following characteristics
(
Zarit
,

2009
, p. 138
),

(
R
osalynn Carter Institute for Caregiving
,

2012
),

(
Cameron

et.al.,
2008)
, (
University of Michigan
-
Michigan Dementia Coalition Assessment
).





Assessment
.
G
athering
information
to identify

caregiver needs, resources
and strengths,
is
critical for determining
appropriate

goals and
match
ing

interventions most appropriate for the
caregiver in achieving the desired goals.
Caregiver needs will change as the disease
progresses, thus p
eriodic fol
low up assessment is als
o important

to evaluate the effectiveness
of the intervention
. (Schul
z
,

2005).

A listing of caregiver assessments can be found
at
http://www.rosalynncarter.org/ca
regiver_assessment/
.




Clarification of Goals and Interventions Tailored to meet Spe
ci
fic Goals.
It is important
that healt
h and community
-
based providers

individualize

treatment or care to the aspects of
caregiving that are most troubling to a particular caregiver. This may be as simple as offering
very specific skill
-
building or problem
-
solving
tools
rather than a more comprehensive
intervention. Hence, to assure eff
ectiveness, caregivers should be provided support to
address only those areas of caregiving that are stressors to a particular caregiver. This will
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assure that treatable components of the caregiving stress process are addressed, fostering
effectiveness,
ef
ficiency and cost management
(Zarit
,

2009
, p.
13
9
),

(
Mittelman, et al.,

2004
),

(
Sorensen et. al.
, 2002),

(
Pi
n
quart & Sorenson, 2006)
.




Education about the disease/disability and its effects on
behavior
(
Zarit
,

2009
, p. 138
).




Problem solving
.
P
roblem
solving specific to and tailored for the unique circumstances and
individuals

(
Zarit, 2009, p. 13
), (Hepburn, 2007),

(
Hepburn
,

2003
).




Other supportive interventions
.
Other interventions might include

direct
support of the
caregiver, family meetings and
respite

(
Zarit, 2009, p. 138
), ( Hepburn, 2007),

(
Hepburn
,

2003
).

Additionally, within supportive interventions, studies have shown that certain attributes of support
lead to better results, including:



Contact with a helper over time

who is following spec
ific intervention protocols .

Receiving
help from a consistent person over time has been shown to be important in effective caregiver
support. It is also critical to assure that the helper is following protocols designed to meet the
s
pecific goals of the
caregivers

(National
Institute of
Nursing
Research
, 2001),

(
Teri, 1999
),
(Thompson et al.,

1996
),

(Schulz, et al.,

2000)
.



Multi
-
component interventions
.
Interventions
that include a combination of knowledge, skill
building,

behavior and

problem solving a
nd counseling

h
ave consistently been
effective

(Carnevale, et al., 2002),

(
Gran
t, et al.,

2001
), (Paun, et al., 2004), (Query, et al., 2003),
(

Schulz,
et.al.
, 2005).



Interventions with higher intensity
.

Interventions that have

high

levels of

frequency and
duration

have been shown to be more e
ffective than those that do not

(Schulz et. al. 2005)
.



Service combinations.
Using a combination of home
-
visiting, telephone follow
-
up, internet and
telehealth technology to deliver

care and services and
been shown to be beneficial
(Davis, et al.,
Weaver, 2004),

(
Eisdorf

et al., 2003),

(
Maho
ney, et al., 2003),

(
National Institute for Nursing
Research
, 2001)
.




Local programs.
Programs developed and implemented locally and involving agency
collaboration

has been shown to be beneficial
.

(Fall
creek, 2003
), (

Tremethick
, et al.
,

2
004),
(Wilken, et al.
, 1999).


Evidence
-
Based Interventions


There are four categories of empirically supported intervent
ions for caregiver support: 1)

m
ultidimensional
interventions; 2) behavioral interventions;

3) group interventions; and 4)

respite
services

(Zarit
,

2009
,

p.
140).

Family
-
focused interventions and those that train caregivers in behavior
management have

had the best outcomes to date

(Zarit
,

2009
),

(
Hepbu
rn 2007; 2003; 2001
).


1)
Multidimensional
Interventions
: These type
s

of interventions are designed to address stress at
multiple levels. Thus they incorporate multiple component support protocols such as the following:

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Caregiver and family education ab
out dementia and its effects on behavior



Behavioral problem solving training so that caregivers
learn about

reduce the care recipient’s
exposure to triggering events or conditions



Family meetings to provide information about the disease and identify assist
ance that would be
helpful to the caregiver

and care recipient



Individual and family counseling



Support groups



Care management


Studies using a combination of the intervention elements listed above reflected decreased
symptoms of
depression and burden for
caregivers in both the long and short term, lower appraisals of care stressors
,
improved quality of life

and caregivers were able to keep their relatives at ho
me for a longer period of
time
(Mittelman
,

1995),

(
Mittelman
,

2004
), (

Belle
,

et al.,

2006)
.


2)
Behavioral Interventions
.
Later in the disease process it may be useful to
focus on training caregivers
to use specific techniques to manag
e

targeted behavioral issues.
The results of studies in this area indicate

positive outcomes

if caregivers
of indivi
duals with dementia
are trained to
more frequently offer and
engage their care recipients in
recreational

activities
, manage a healthy sleep schedule and

implement
problem
-
solv
ing

strategies to address difficult behaviors
.

T
he person with dementia experien
ced positive
outcomes such as reduced depression, increased physical functioning,
and
improved sleep. Caregivers in
these studies also had less depre
ssion and subjective burden

(M
c
Curry
, et al., 2005),

(
Teri
,

et al.,

1997),
(
Teri
,

G
ibbons
, et al.,
2003
).


3)

Group Interventions
.

While support groups are popula
r

and offer

opportunities to engage caregivers
and reduce social isolation, there is limited evidence of the effectiveness of the support groups. Those
support groups that have been shown to have th
e most positive effects are those that focus on a limited set
of outcomes, such as teaching pa
rticular skills or strategies
(Zarit
,

2009). This approach to support group
results in clearer positive results compared with groups that address a broad range o
f issues or let the

participants direct the agenda
(Coon
,

2003
),

(
Herbert
,

2003).


4) Respite Services
.
As the disease progresses and a person with dementia is less independent, r
espite
can

support caregivers with formal, paid help to enable them to have
time off. The goal of such car
e

is to
decrease the burden on caregivers, both emotional and physical.
While evidence is limited as to whether
respite care achieves these goals, some studies

establish
that caregivers who use respite
care consistently
and
for a prolonged period of time experience decreased feelings of overl
oa
d and decreased depression

(Zarit
,

1998
),

(
Gitlin
,

et al., 2006),

(
Droes
,

et al.
,

2006)
.



A description of dementia caregiver interventions can be found at
http://www.rosalynncarter.org/caregiver_intervention_database/




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Resources

Cited


Alzheimer’s Association and National A
lliance for Caregiving (2004).
Families care:
Alzheimer’s
caregiving in the United
States 2004
.


Atienza, A., Henderson, P.C.,
Wilcox, S. & King, A.C. (2001).

Gender Differences in Cardiovascular
Response to D
ementia Caregiving.
The Gerontologis
t

,

41(4)
,

490
-
498.


Belle, S.H., Burgio, L., Burns, R., Coons, D., Czaja, S.J.,
Gallagher
-
Thompson, D. (2006).

Enhancing the
quality of life of dementia caregivers from different ethnic or racial groups.
Annals of
Internal
Medicine, 145
, 727
-
738.


Boerner, K., Sch
ulz, R. & Horowitz, A. (2004).
Positive aspects of caregiving and adaptation to
bereavement.
Psychology and Aging, 19(4)
, 668
-
675.


Cameron, M., Massuc
h, L., a
nd Wishart, D. (2008).
Research
-
based Recommendations for Effective
Caregiver Interventions.
Careg
iver Support Workgroup Members
Michigan Dementia Coalition
Assessment.




Carnevale, G. J., Anselmi, V., Busichio, K., & Millis, S. R. (2002). Changes in ratings of caregiver
burden following a community
-
based behavior management program for persons with traumatic

brain injury.
Journal of Head Trauma Rehabilitation, 17(2)
, 83
-
95.


Cohen, C.A., Colanto
nio, A., & Vernich, L. (2002).
Positive aspect aspects of caregiving: Rounding out
the caregiver experience.
International Journal of Geriatric Psychiatry, 12(2)
, 184
-
188
.


Cohen, S., & Wills, T. A. (1
985). Stress, social support,

and the buffering hypothesis.
Psychological
Bulletin
, 98
, 310
-
357.


Cohen, S., Sherrod,
D. R., & Clark, M. S. (1986).
Social skills and the stress
-
protective role of social
su
pport.
Journal of Personality and Social Psychology,

50
, 963
-
973.


David W. Coon, Dolores Gallagher
-
Thompson, Larry W. Thompson. Innovative Interventions To Reduce
Dementia Caregiver Distress: A Clinical Guide (2003).


Davis, L., Burgio, L. Buckwalter,
K. & Weaver, M. (2004). A comparison of in
-
home and telephone
-
based skill training interventions with caregivers of persons with dementia.
Journal of Mental
Health & Aging, 10(1)
, 31
-
44.


Droes, R.M., Meiland, F. J.M., Schmitz, M
.J., & van Tilberg, W. (2006).
Effects of the Meeting Centres

Support Program on informal caregivers of people with dementia: Results from a multi
-
care
study.
Aging and Mental Health, 10(2)
, 112
-
124.


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/12

Dura, J. R., Stukenberg, K. W., &
Kiecolt
-
Glaser, J. K. (1991).

Anxiety and depressive disorders in adult
children caring for demented parents.
Psychology and Aging, 6(3),
467
-
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