Caregiver Support - Collective Action Lab

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Running head: CAREGIVER SUPPORT



1

10/9
/12









ACT on Alzheimer’s


Alzheimer’s D
isease

Curriculum

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
Curriculum


This module is part of the Alzheimer’s Disease

Curriculum

developed by
ACT on Alzheimer’s
.
ACT on
Alzheimer’s
is a statewide, voluntary collaboration that includes over 50 organizations and 150
individuals seeking to prepare for the budgetary, social, and p
ersonal impacts of Alzheimer’s Disease
.
All
of the modules can be found online at
ACTonALZ.org


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


Case Study:

Mr. Johnson, a 71
year
-
old man with a history of diabetes and currently living alone is
brought into the clinic by his son, Dave. Mr. Johnson does not believe he has any
significant memory problems, yet Dave describes 2.5 years of progressive memory
deficits characterized b
y increasing late fees while paying bills and difficulty maintaining
the household. Over the past 3 months, Dave has received repeated phone calls from his
father in which he complains repeatedly about losing items around the household. At one
point, he w
ondered whether somebody was stealing his keys and reading glasses.
Originally, Dave suspected that his father was fixated on this topic but, over time, it
became clear that he had forgotten about the original conversations. His cognitive
review of system
s is remarkable for forgetting appointments and becoming lost while
driving in familiar neighborhoods. Dave mentions that he is worried about his dad’s
driving as well. He denied any specific symptoms for depression.


The past medical history includes diab
etes and hypertension. He was previously on a
more complicated medication regimen aiming for “tighter” blood sugar control. He is
now taking metformin, which is taken two times a day, and

lisinopril, and a baby aspirin,
which can be taken once a day. He wi
ll occasionally take Tylenol PM (with
diphenhydramine) at night for sleep. The primary provider is hoping that simplifying
the medication regimen will make it easier for Mr. Johnson to follow instructions
accurately.


Mr. Johnson is a retired janitor w
ith a high school education. No active smoking or
drinking. There is a family history of Alzheimer’s disease in his father who developed
symptoms at age 81.


Neurological exam was non focal. Neuropsychological screening showed a MOCA=21
(losing points f
or cube copy, 1/5 words after 5 minutes [could not recognize when given a
list], orientation to date, clock draw).


Laboratory studies showed normal complete blood count, electrolytesl

LFTs, glucose,
thyroid stimulating hormone, and B12 levels. A referral was made for
neuropsychological testing: Mr. Johnson showed severe deficits in learning and memory,
moderate deficits in visuospatial function, and mild executive impairments. The Geri
atric
Depression Scale score was 2 and within normal limits. Brain MRI was positive for
bilateral hippocampal and parietal atrophy, butno evidence for stroke or focal lesions.


Mr. Johnson was diagnosed by his primary provider with probable Alzheimer’s Di
sease.
Dave inquired about any interventions that can possibly slow or treat the disease
process. It is clear that Dave is distressed about his father’s new diagnosis. He has many
questions about his father’s safety and how he can proactively take steps
to ensure his
dad’s well being.

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Case Study Continued:


Pharmacological Intervention
:

Mr. Johnson is started on Donepezil 5 mg daily for 1 month, increasing to 10 mg daily
thereafter. The primary provider explains that this medication only provides sympt
omatic
treatment and does not slow the disease process. It is recommended that the patient avoid
taking Tylenol PM due to the diphenhydramine’s anticholinergic effects, and he is prescribed
trazodone 50 mg at night for insomnia. Since the patient had no

evidence for depression by
history and score on the Geriatric Depression Scale, there is no role for an antidepressant.


Non
-
Pharmacological Intervention

The primary provider has a Family Meeting where he counsels Mr. Johnson and Dave about
healthy life
style, safety concerns, maximizing his function, socialization, and ongoing education
and support of Mr. Johnson and Dave, his care partner. This is the first time that Dave realizes
that he is a “care partner.” Physical activity is the priority given Mr
. Johnson’s diabetes and
literature supporting favorable impact of this intervention upon cognition. The patient was
recommended to use his home exercise bike for 30 minutes at a time for 3 days weekly. After
discussing options for increasing cognitive a
ctivity, the patient decides to meet friends to play
cards at the Senior Center twice a week in addition to daily reading. He is also enrolled in a
Brain & Body Wellness Program. He is provided a calendar to write down his appointments and
activities. At t
he Brain and Body Wellness program, the health educators stress the importance
of a daily routine.


The primary provider has numerous safety concerns about the Mr. Johnson’s living situation. In
the setting of newly diagnosed Alzheimer’s disease, Mr. Johnson has an increased risk for
mediation non
-
adherence. The primary provider recommends that he util
ize a pillbox with daily
reminders from his son.


Dave feels he is able to visit his father once a week and set up two pill boxes indicating the days
of the week, one marked “morning” and one marked “evening”; when he makes reminder calls,
he can tell his

father to take the pills from the appropriate box and indicate the day of the week
so that the correct medications are taken. When Dave calls to remind Mr. Johnson about his
medication, he will also review the day’s activities with him and write them on
a white board on
the back of his front door.


Mr. Johnson and his son get along well. The primary provider discusses the importance of the
care partner, Dave will accompany his father to follow
-
up appointments so that he will also hear
the treatment p
lan, when the next appointment should be, and symptoms and signs to look for
that would indicate a need for a more urgent visit.

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A Home Care Nurse is arranged to go to the home to assess Mr. Johnson’s home situation for
safety, assess if he is able to fol
low phone instructions from his son accurately, ensure that he is
eating regularly and adequacy of housekeeping.


Mr. Johnson and Dave decide that it might be a good idea to try putting a small table by the
front door where he can leave his keys and a sta
nd up glasses case can be placed next to his
favorite reading chair. They will put a white board on the back of the front door indicating
where the keys and reading glasses might be. If this doesn’t work, they will try another plan.



In addition, it is suggested that Dave and his father discuss the possibility of Dave obtaining
power of attorney and begin managing the patients’ finances. All bills are subsequently placed
on autopay.


Mr. Johnson has been responsible for his own mea
ls. There have been no problems thus far with
forgetting to shut off stove burners. The family is counseled about other options that include
prepared meals and microwave meals as well as Meals on Wheels.


Mr. Johnson’s primary provider shares Dave’s
concerns about Mr. Johnson’s driving safety.
Due to symptoms of disorientation in familiar places, the primary provider recommends a formal
driving evaluation through occupational therapy. Mr. Johnson is instructed not to drive until
this evaluation has
been completed. Dave sets up transportation to and from the Senior Center
for the card game sessions. They will find out if this Senior Center has meals, and if so, he may
eat a warm lunch with his friends on card game days.


The primary provider makes a

referral to the Alzheimer’s Association to provide additional
education regarding Alzheimer’s disease and information relating to community resources. Mr.
Johnson and Dave begin care consultation to learn about the disease, what they might expect as
a co
urse of progression, and how to prepare to manage at later stages of the disease.

The primary provider sees Mr. Johnson and Dave in follow
-
up appointments to see how they are
coping at home with the new diagnosis. He is tolerating the donepezil without
difficulty, and
adjusting well to his new schedule. His primary provider uses the opportunity to discuss Mr.
Johnson’s overall healthcare goals, hopes and fears about the future. Mr. Johnson would like
both of his sons to be his joint health care proxies
. He mentions his fears about losing his
independence and goal of staying in his own home as long as possible. Given this information,
they discuss the importance of identifying a health care proxy and writing an advance directive.
They make a plan to s
ee each other in 3 months for follow
-
up.






The Nature of Caregivin
g for Individuals with Dementia

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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 dressing, bathing, incontinence, and feeding. It also
includes

providing help with instrumental

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

(Zarit
,

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

and dedicate
more time to these

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

2004
),

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

exhibit

challenging behaviors as a part of the disease process.
(
Alzheimer’s Association and
National Allia
nce 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

some college education, manage

work and
career

at some point in their lives
, and spend an average of 20 or more hours per week p
roviding 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 R
etired 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 caregiving compromise caregivers’ physiological functioning and increase their risk
for health problems
. C
aregivers tend to have less time to rest whe
n 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

(Schulz et

al.,
199
5)
.
Resear
ch 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 morta
lity risk than non
-
caregivers (S
chul
z et

al.,
1995).

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Social Risks.


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 tim
e for family and friends. Many caregivers report having to give 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
spous
e (Narayan, et al.,

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




Psychological Risks.

Caregivers are also at risk

of
diminished

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

Depression is a serious risk factor for caregivers and
presents

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 emotional 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 caregive
r.
(National Alliance for Caregiving and 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 d
ementia
are 10
times more likely to meet 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 spe
nding out of pocket on their care recipient
’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 p
rovide
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 study, 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 a
nd related dementias live 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 ca
re for
those with dementia
. 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
per year. With this care valued at $12.12 per hour, the estimated economic value of the care provided by
family and other unpaid caregivers 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, depression reduces a caregiver’s ability
to continue to provide for
an
indi
vidual with
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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

(Eisendorf, et al.,

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

(Alzheimer’s Association
,

2012
).


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

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

caregivers acknowledge the challenges 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 exp
erience 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, but also
help
them maintain a positive outlook on their role.



Types
and Effective Components of Caregiver Support


General typ
es of caregiv
er support include

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

(
S
örensen, et al.,

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

et al.,

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

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

(Hooker, et al., 1998),

(
State of California, 2
008
).



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 follow 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/caregiver_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 effectiveness, caregivers should be provided support to
address only those areas of caregiving that are stressors to a particular caregiver. This will
assure that treatable components of the
caregiving stress process are addressed, fostering
effectiveness,
efficiency 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
).

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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 specific intervention protocols .

Receiving
help from a consistent person over time has been shown to be important in effective caregiver
sup
port. 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 and 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 c
ombinations.
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
),

(
Hepburn 2007; 2003; 2001
).


1)
Multidimensional
Interventions
: These type
s

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



Caregiver and family education about 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 assistance that would be
helpful to the caregiver

and care recipient

CAREGIVER SUPPORT



12



10/9
/12



Individual and family counseling



Support groups



Car
e 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 careg
ivers were able to keep their relatives at ho
me for a longer period of
time
(Mittelman
,

1995),

(
Mittelman
,

2004
), (

Belle
,

et al.,

2006)

(Gitlin, et al., 2012)
.


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 individuals with dementia
are trained to
more frequently offer and
engage their care recip
ients in
recreational

activities
, manage a healthy sleep schedule and

implement
problem
-
solv
ing

strategies to address difficult behaviors
.

T
he person with dementia experienced positive
outcomes such as reduced depression, increased physical functioning,
an
d
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 the 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 of 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 e
xperience 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/




CAREGIVER SUPPORT



13



10/9
/12



Case Study Continued:


Pharmacological Intervention
:

Mr. Johnson is started on Donepezil 5 mg daily for 1 month, increasing to 10 mg daily
thereafter. The primary provider explains that this medication only provides symptomatic
treatment and does not slow the disease process. It is recommended that the pa
tient avoid
taking Tylenol PM due to the diphenhydramine’s anticholinergic effects, and he is prescribed
trazodone 50 mg at night for insomnia. Since the patient had no evidence for depression by
history and score on the Geriatric Depression Scale, there
is no role for an antidepressant.


Non
-
Pharmacological Intervention

The primary provider has a Family Meeting where he counsels Mr. Johnson and Dave about
healthy lifestyle, safety concerns, maximizing his function, socialization, and ongoing education
a
nd support of Mr. Johnson and Dave, his care partner. This is the first time that Dave realizes
that he is a “care partner.” Physical activity is the priority given Mr. Johnson’s diabetes and
literature supporting favorable impact of this intervention up
on cognition. The patient was
recommended to use his home exercise bike for 30 minutes at a time for 3 days weekly. After
discussing options for increasing cognitive activity, the patient decides to meet friends to play
cards at the Senior Center twice a

week in addition to daily reading. He is also enrolled in a
Brain & Body Wellness Program. He is provided a calendar to write down his appointments and
activities. At the Brain and Body Wellness program, the health educators stress the importance
of a dai
ly routine.


The primary provider has numerous safety concerns about the Mr. Johnson’s living situation. In
the setting of newly diagnosed Alzheimer’s disease, Mr. Johnson has an increased risk for
mediation non
-
adherence. The primary provider recomme
nds that he utilize a pillbox with daily
reminders from his son.


Dave feels he is able to visit his father once a week and set up two pill boxes indicating the days
of the week, one marked “morning” and one marked “evening”; when he makes reminder calls,

he can tell his father to take the pills from the appropriate box and indicate the day of the week
so that the correct medications are taken. When Dave calls to remind Mr. Johnson about his
medication, he will also review the day’s activities with him an
d write them on a white board on
the back of his front door.


Mr. Johnson and his son get along well. The primary provider discusses the importance of the
care partner, Dave will accompany his father to follow
-
up appointments so that he will also hear

the treatment plan, when the next appointment should be, and symptoms and signs to look for
that would indicate a need for a more urgent visit.

CAREGIVER SUPPORT



14



10/9
/12


A Home Care Nurse is arranged to go to the home to assess Mr. Johnson’s home situation for
safety, assess if h
e is able to follow phone instructions from his son accurately, ensure that he is
eating regularly and adequacy of housekeeping.


Mr. Johnson and Dave decide that it might be a good idea to try putting a small table by the
front door where he can leave hi
s keys and a stand up glasses case can be placed next to his
favorite reading chair. They will put a white board on the back of the front door indicating
where the keys and reading glasses might be. If this doesn’t work, they will try another plan.



In
addition, it is suggested that Dave and his father discuss the possibility of Dave obtaining
power of attorney and begin managing the patients’ finances. All bills are subsequently placed
on autopay.


Mr. Johnson has been responsible for his own meals.

There have been no problems thus far with
forgetting to shut off stove burners. The family is counseled about other options that include
prepared meals and microwave meals as well as Meals on Wheels.


Mr. Johnson’s primary provider shares Dave’s conc
erns about Mr. Johnson’s driving safety.
Due to symptoms of disorientation in familiar places, the primary provider recommends a formal
driving evaluation through occupational therapy. Mr. Johnson is instructed not to drive until
this evaluation has been

completed. Dave sets up transportation to and from the Senior Center
for the card game sessions. They will find out if this Senior Center has meals, and if so, he may
eat a warm lunch with his friends on card game days.


The primary provider makes a ref
erral to the Alzheimer’s Association to provide additional
education regarding Alzheimer’s disease and information relating to community resources. Mr.
Johnson and Dave begin care consultation to learn about the disease, what they might expect as
a course

of progression, and how to prepare to manage at later stages of the disease.

The primary provider sees Mr. Johnson and Dave in follow
-
up appointments to see how they are
coping at home with the new diagnosis. He is tolerating the donepezil without diff
iculty, and
adjusting well to his new schedule. His primary provider uses the opportunity to discuss Mr.
Johnson’s overall healthcare goals, hopes and fears about the future. Mr. Johnson would like
both of his sons to be his joint health care proxies. H
e mentions his fears about losing his
independence and goal of staying in his own home as long as possible. Given this information,
they discuss the importance of identifying a health care proxy and writing an advance directive.
They make a plan to see e
ach other in 3 months for follow
-
up.







CAREGIVER SUPPORT



15



10/9
/12

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 careg
ivers 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., and 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. (
1985). 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
support.
Journal of Personality and Social Psychology,

50
, 963
-
973.


David W. Coon, Dolores Gallaghe
r
-
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.


CAREGIVER SUPPORT



16



10/9
/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
-
473
.


Eisendorf, C. Czaja, S. J. Loweenstein, D. A., Rubert, M.P., Arg
uelles, S., Mitrani, V.B
. (2003). The
effect of a family therapy and technology
-
based in
tervention on caregiver depression.
Gerontologist,
43(4),
521
-
531
.


Falicreek, S. J. (2003).
Older adult healt
h promotion in rural settings.
Journal of Gerontological Social
Work, 41(3/4)
, 193
-
212.


Family Caregiver Allianc
e/National Center on Caregiving.


Selected Caregiver Statistics
.
Retrieved from
http://
www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=439


Gallagher
-
Thompson, D., Rose, J., Rivera, P., Lovett
, S., & Thompson, L.W. (1989).

Prevalence of
depression

in family caregivers.
The Gerontologist, 29
, 449
-
456.


Gitlin, L.N., Reever, K., Dennis, M.P., Math
ieu, E., & Hauck, W.W. (2006).
Enhancing quality of life of
families who use adult day services: Short
-

and long
-
term effects of the Adult Day Services Plus
Program.
The Gerontologist, 46 (5)
, 630
-
639.


Gitlin LN, Kales HC, Lyketsos CG.,(2012) Nonpharmacologic management of behavioral symptoms in
dementia. JAMA. 308(19):2020
-
9.


Grant, J. S., Elliott, T. R., Giger, J. N., & Bartolucci, A. A. (200
1). Social problem
-
solving abilities,
social support, and adjustment among family caregivers of individuals with a stroke.
Rehabilitation Psychology, 46(1)
, 44
-
57.


Hébert
,

R
.
, Lévesque
,

L
.
, Vézina
,

J
.
, Lavoie
,

J
.
P
.
, Ducharme
,

F
.
, Gendron
,

C
.
, Préville
,

M
.
, Voyer
,

L
.
,
Dubois
,

M
.
F
. (20
03).
Efficacy of a psychoeducative group program for caregivers of demented
persons living at home: a randomized controlled trial
.
Journal of Gerontology: Social Sciences,
58(1)
,
S58
-
67.


Hepburn, K., Lewis, M., Tornatore, J., Sherman, C. W., & Bremer, K. L. (2007). The Savvy Caregiver
Program: The demonstrated e
ffectiveness of a transportable dementia caregiver psychoeducation
program.
Journal of Gerontological Nursing
, 30
-
36.


Hepburn, K. W., Lewis, M., Sherman, C. W., & Torn
atore, J. (2003). The Savvy Caregiver Program:
Developing and testing a transportable dementia family caregiver training program.
Gerontologist
, 43(6), 908
-
915.


Hooker, K., Monahan, D. J., Bowman, S. R., Frazier, L. D., & Shifren, K. (1998). Personality counts for a
lot: Predictors of mental and physical health of spouse caregivers in two disease groups.
Journal
of Gerontology
,

53
, 73


85.


CAREGIVER SUPPORT



17



10/9
/12

Lee, S., Colditz, G.A., Berkman,

L. F., & Kawachi, I. (2003).
Caregiving and risk of coronary heart
diseases in U.S. women: A prospective study.
American Journal of Preventive Medicine, 24(2)
.



Logsdon, R. G., McCurry, S. M., Teri, L. (2007)
.

Evidence
-
based psychological treatments for disruptive
behaviors in individuals with dementia.
P
sychology and Aging, March 22(1)
, 28
-
36.


Mahoney, D. F., Tarl
ow, B.J. & Jones, R.N. (2003).
Effects of an automated telephone support system on
caregiver burden and anxiety: findings from the REACH for TLC intervention study.
Gerontologist, 43(4),

556
-
6
7.


McCurry, S.M., Gibbons, L.E., Logsdon, R.G., Vit
iello, M.V. & Teri, L. (2005).
Nighttime insomnia
treatment and educat
ion for Alzheimer’s disease: A randomized controlled trial.
Journal of the
American Geriatric Society, 53(5)
, 793
-
802.


Mittelman, M., Ferris, S., Shulman, E., Steinberg, G., Ambinder, A., Mackell, J., & Cohen, J. (1995). A
comprehensive support program:

Effect on depression in spouse
-
caregivers of AD patients.


The
Gerontologist, 35
, 792
-
802.


Mittelman, M.S., Roth, D.L., Coon, D.W., & Haley, W.E. (2004). Sustained benefit of supportive
intervention for depressive s
ymptoms in caregivers of patients with Alzheimer’s disease.
American Journal of Psychiatry, 161
, 850

6.


Mittelman
,

M.S., Roth, D.L., Coon, D.W., & Haley, W.E. (2004). Effects of a caregiver intervention on
negative caregiver appraisals of behavior problems in patients with Alzheimer’s disease: results
of

a randomized
trial.
Journal of Gerontology: Psychological Sciences, 59 (1)
,

P27
-
P34.


Mok, E., Lai, C.K
., Wong, F.L. & Wan, P. (2007).

Living with early
-
stage dementia: The pers
pective of
older Chinese people.
Journal of the American Geriatrics Society, 54 (Supplement 4),
S86
.


Narayan, S., Lewis, M., Tornatore, J., Hepburn, K.
, & Corcoran
-
Perry, S. (2001).
Subjective responses to
caregiving for a spouse with dementia.
Journal of Gerontological

Nursing, Mar; 27(3)
, 19
-
28.


National Alliance for Caregiving and Richard Schulz, Thomas Cook and University Center for Social and
Urban Research Department of Psychiatry, University of Pittsburg

(2011)
.
Caregiving Costs:
Declining Health in the Alzheime
r’s Caregiver as Dementia Increases in the Care Recipient
.


National Alliance for Caregiving and American Association for Retired Persons
.


(2004).
Caregiving in
the U.S.

Retrieved from
http://www.caregiving.
org/data


National Institute of Nursing Research. (2001). Research in informal caregiving: State of the science
workgroup meeting executive s
ummary. Retrieved March 31, 2008
,
http://ninr.nih.gov/ninr/research/dea/workgroup_chronic_conditions.html.


CAREGIVER SUPPORT



18



10/9
/12

Ory, M.G., Hoffman, R.R., III, Yee
, J. L., Tennstedt, S., & Schul
z, R. (1999). Prevalence and impact of
caregiving: A detailed comparison between dementia
and nondementia caregivers.
Gerontologist
,
39(2)
, 177
-
185.


Paun, O., Farran, C., Perraud, S., & Loukissa, D. (2004). Successful caregiving of per
sons with
Alzheimer’s disease: Skill development over time [Electronic version].
Alzheimer’s Care
Quarterly, 5(3)
, 241
-
251.


Pinqu
art, M. & Sorensen, S. (2006).
Helping caregivers of persons with dementia:
Which interventions
work and how large are their effects?
International Psychogeriatrics, 18
, 577
-
595.


Query, J. L., Jr., &
Wright, K. (2003). Assessing communication competence in an online study: Toward
informing subsequent interventions among older adults with cancer, their lay caregivers, and
peers.

Health Communication, 15(2)
, 203
-
218.


Rosalynn Carter Institute for
Caregiving Privacy Policy
.

(2012)
.

Retrieved from
http://www.rosalynncarter.org



Schulz, R. O’Brien, A.T., Bookwala, J., & Flei
ssner, K. (1995). Psychiatric and physical morbidity
effects of dementia caregiving: Prevalence, correlates, and causes.
Gerontologist, 35(6)
, 771
-
791.


Schul
z, R.

& Sherwood, P. (2008).
Physical and mental health effects of family caregiving.
Ame
rican
Journal of Nursing
,
Vol. 108 (9
-
Supplement)
, 23
-
27.


Schulz, R., Gallagher
-
Thompson, D., Haley, W., & Czaja, S. (2000).

Understanding the interventions
process: A theoretical/conceptual framework for intervention approaches to caregiving. In R.
Schulz (Ed.),
Handbook on dementia caregiving: Evidence
-
based intervention for family
caregivers

(pp. 33
-
60).


Schulz, R., Martire,

L.M., & Klinger, J.N. (2005).
Evidence
-
based caregiver interventions in geriatric
psychiatry.
The Psychiatric Clinics of North America, 28(4),

1007
-
38.




Sorenson, S., Pinquart, M
. &

Duberstein, P. (2002)
.

How eff
ective are interventions with caregivers? An
unpaid meta
-
analysis.
Gerontologist, 42(3)
.


State of California
, Department of Health (2008).
Guideline for Alzheimer’s Disease

Management:
California Workgroup on Guidelines for Alzheimer’s Disease Management.


Teri, L.
, Gibbons, L.E.., Logsdon, R.G., Uomot
o, J., & McCurry, S.M. (1997).
Behavioral treatment of
depression in dementia patients: A controlled clinical trial.
Journals of Gerontology Series B:
Psychological Sciences & Social Sciences, 52B(4),
159
-
166
.


CAREGIVER SUPPORT



19



10/9
/12

Teri, L. (
1999).
Training families to provide care: Effects on people with dementia.
International Journal
of Geriatric Psychiatry, 14
, 110
-
119.


Teri, L., Gibbons, L.E., McCurry, S.M., Logsdon, R.G., Buchner, D.M., Barlow, W.E., et al. (2003).
Exercise plus behavioral management in patients with Alzheimer’s disease: A randomized
c
ontrolled trial.
Journal of the American Medical Association, 290(15)
, 2015
-
2022
.


Thompson, L. W., & Gallagher
-
Thompson, D. (1996). Practical issues related to maintenance of mental
health and positive well
-
being in family caregivers. In L. L. Carstensen

& B. A. Edelstein (Eds.),
The Practical Handbook of Clinical G
erontology

(pp. 129
-
150). Thousand Oaks, CA: Sage.


Tremethick, M. J., Wilken, C., Miller, R., Walker, K., & Meier, P. (2004). The PATH Program: Meeting
health promotion needs of older adults.

The Southwest Journal on Aging, 19
, 25
-
32.


Wilken, C., Tremethick, M., Walker,
K., & Meier, P. (1999). Community C
oalitions: Foundations for
success in health promotion for older adults.
Journal of Family and Consumer Sciences, 91(4)
,
83
-
87.


Zarit, S.H., Stephens, M.A.P., Townsend, A., & Greene, R. (1998).

Stress reduction for family caregivers:
Effects of day care use.
Journal of Gernontology: Social Sciences,
53B, S267
-
S277
.


Zari
t, S. H., Qualls, S. H. (2009).

Aging Families and Caregiving
.

Hoboken, NJ
: Wiley & Sons.





CAREGIVER SUPPORT



20



10/9
/12

Non
-
Cited Resources


Alzheimer’s Association. (2012). 2012 Alzheimer’s Disease Facts and Figures.
Alzheimer’s &
Dementia, 8(2)
.


Marriott
,

A
.
, Donaldson
,

C
.
, Terrier
,

N
.

& Burns, A.

(2000).
Effectiveness of cognitive
-
behavioural
family intervention

in reducing the burden of care in carers of patients with Alzheimer’s disease
.

Br
itish

J
ournal of

Psychiatry
,
176
,
557

62.


Martin
-
Cook
,

K
.
, Remakel
-
Davis
,

B
.
,

Svetlik
,

D
., Hynan, L. & Weiner, M.

(2003).


Caregiver attribution
and resentment in

dementia care.
American Journal of Alzheime
r’s Disease and Other Dementias,
18
(6)
,
366

74.


McCurry
,

S
.
M
.
, Gibbons
,

L
.
E
.
, Logsdon
,

R
.
G
., Vitiello, M. & Teri, L. (2003).

Training caregivers to
change the sleep hygiene

practices of patients with dementia: the NITE
-
AD project.

Journal of
the American Geriatrics Society,

51
,
1455

60.