Robert Burns MD and Linda Olivia Nichols, PhD
Memphis Caregiver Center, VA Memphis
Professors, Preventive and Internal Medicine
University of Tennessee Health Science Center
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Robert Burns, M.D. and Linda O. Nichols,
Ph.D. have no actual or potential conflict of
interest in relation to these presentations
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Discuss what a Family-Centered approach to
home based dementia care would look like
Review national guidelines for dementia care
and clinical outcomes
Briefly review evidence for drug based and
non-drug regimens for treatment
Discuss strategies for helping caregivers
manage patient behaviors and their own
stress
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5.2 million Americans have AD
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11 percent of people age 65 and older have AD
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15.5 million dementia caregivers
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17.7 billion hours of unpaid care valued at more
than $220 billion
Direct costs of care estimated at $214 billion
◦ $150 billion Medicare and Medicaid costs
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$9.3 billion in additional caregiver health care
costs due to physical and emotional toll of
caregiving
2013 figures
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Most home based care and MD/NP visits will
be for moderate to severe stage dementia
Goals of care are to maximize physical
function while maintaining a safe, supported
environment for patient and caregiver
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Home visits provide the clinician:
◦ Opportunity to observe the physical environment
◦ Chance to watch patient – caregiver interactions
◦ Direct observation of the patient at home, function,
behaviors
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Attain and maintain highest practicable level of
personal functioning
Decrease severity and frequency of
neuropsychiatric symptoms
Delay institutionalization of patient, if possible
Promote caregiver and patient-centered decisionmaking
Reduce caregiver stress and burden
Enhance caregiver involvement and comfort with
dementia care
AMA, Dementia Performance Measurement Set, 2011
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For moderate to severe stage dementia, focus
will be on:
◦ Presentation of non-specific symptoms
◦ Developing a care plan when discussing diagnosis of
“dementia”
◦ Easing guilt and worry and supporting the caregiver
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Essential features of effective chronic disease
management programs tailored to individual
Involvement of patient and/or family in
customizing approach for patient
Treatment plans customized for patient’s
treatment preferences more likely to yield
satisfied, adherent patients and families
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Utilize evidence based management of the
dementia patient
◦ Data driven guidelines and protocols for assessment
and drug utilization
◦ Evidence based behavioral interventions
◦ Team members to help educate caregivers
 HMO disease specific phone support
 HH nurse education
◦ When utilized, improve outcomes across disease
conditions
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For dementia patients, management and
education falls to primary caregivers
Emphasis on acquisition of skills, not just
knowledge, especially important in managing
difficult behaviors, and caregiver self care
Team members with specific skills for targeting
skills and behavioral training
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MD/NP directed education of caregiver
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Telephone support
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Feasibility
REACH I
NIA/NINR
1995-2000
Randomized
Controlled
Trial
REACH II
NIA/NINR
2002-2004
Translation
Program
REACH VA
VHA
REACH VA
VHA
2007-2009
2011-ongoing
Costs
REACH
II/VA
NIA
2013-2016
Burns et al., Gerontologist, 2003
Belle et al., Ann Int Med, 2006
Nichols et al., JAGS, 2008
Nichols et al., Arch Int Med, 2011
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Discussion of diagnosis and stage of illness with
the caregiver
Limited benefit of cognitive enhancing drugs
(AChEI and NMDA antagonists)
Discussion of risks/benefits of drug treatment
of behavioral and psychological symptoms
Benefit of behavioral interventions and caregiver
support
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Home care visits can improve care of dementia
patients by allowing provider to see patient
environment and interactions
Assessment of patient function and behaviors
can allow a tailored, patient specific intervention
Skills training of caregiver improves quality of
life for both members of dyad
Promotion of caregiver and patient-centered
decision-making enhances success of caregiving
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Caregiver
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Empower Caregiver
Knowledge
◦ Problem solving skills
◦ Coping skills
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 Communication, stress
management
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Care Recipient
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Improve Patient’s life
◦ Management of
problem behaviors or
concerns
◦ Safety
Improve Caregiver’s
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Physical well-being
Emotional well-being
Health and self-care
Social support
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1.
2.
Determine problem
o
Patient behavior
o
Caregiver reaction or concern
Define/operationalize
o
Frequency
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Duration
o
Intensity
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Characteristics
o
Antecedents and consequences of behavior (ABC
Process)
3.
Assess previous attempts to address
4.
Set goals and realistic outcome
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5.
6.
7.
Treat or eliminate antecedents and triggers
o
Unmet physical needs (e.g., pain)
o
Unmet psychological needs (e.g., loneliness)
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Environmental causes (e.g., stimulation, noise)
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Psychiatric causes (e.g., depression)
Develop plan
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Brainstorm best practice and evidence guidelines strategies
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Help caregiver select strategies based on type of problem
and dyad’s needs, abilities, and resources
o
Write strategies down
o
Teach caregiver to use strategies, practice and role model
Review and troubleshoot plan
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Problem: Confusion, agitation, dependence,
decreased mobility, falls
 Operationalize:
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◦ When does it
happen?
◦ Where does it
happen?
◦ How often does
it happen?
◦ Is anyone
around?
◦ Is the patient
hurt?
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Problem: Wandering
What would make it better:
◦ Keep from wandering
 Adapt environment to reduce
exit-seeking
◦ Make wandering safe
 Identification/GPS
 Safe wandering paths
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Problems: Increased dependence in dressing,
unable to choose appropriate and clean
clothing, increased agitation
Possible solutions:
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Medication
Attendant
Lay out clothes
Simplify tasks
Limit choices
Cue, prompt
Modify
environment
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Managing the relationship between
thoughts and feelings when problem
cannot be changed
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Identify the situation
Identify current thoughts
Recognize current emotions/feelings
Challenge/replace unhelpful thoughts
Match milder feelings to milder thoughts
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Identify the
situation –
describe the
events that led
to your
unpleasant
feelings
Identify your
thoughts
* All or nothing
(ought, must,
should)
* Awfulizing
(awful, terrible,
horrible
evaluation)
* Negative
thinking
Recognize your
feelings and
emotions
Challenge and
replace or
substitute
unhelpful or
negative
thoughts with
more helpful or
milder thoughts
Match milder
emotions to
your milder
thoughts
Situation
Current
Thoughts
Emotions
Substitute
Thoughts
Substitute
Feelings
What
happened?
What are you
thinking?
What are you
feeling?
What is a
different way
of thinking
about the
situation?
What are you
feeling?
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Problem Solving Approach
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Determine what and
why:
◦ Depression
◦ Decreased eyesight/
hearing
◦ Fear
◦ Physical discomfort
◦ Too much going on
◦ Physical illness
◦ Change in routine
◦ Modesty issues
◦ Resistant
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Possible solutions:
◦ Simple directions
◦ Keep the patient’s
routines
◦ Make bathroom safe and
inviting
◦ Remove frightening
things
◦ Respect privacy
◦ Offer support
◦ Praise
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Cognitive Restructuring Approach
Step 1
Step 2
Step 3
Step 4
Step 5
Situation
Current
Thoughts
Current
Feelings
Challenge &
Replace
New
Feelings
My mother
hates to
take a
bath.
It’s a
struggle
every day.
Frustrated.
Weary.
Dread.
Tired of
doing this.
If I was a
better
caregiver,
I could do
this.
Maybe she
doesn’t need a
bath every day.
Maybe a
sponge bath is
ok.
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Flexible.
Capable
of doing
this.
Stress Management/Relaxation Exercises
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Signal Breath
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Music
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Stretching
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Guided Imagery/Visualization
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Pleasant Events
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Assessment of caregiver functioning critical in
dementia home care
o
o
Caregiver coping and stress
Patient behavior management
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Certain topics needed for all dyads
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Targeting to needs of dyad critical for success
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Skills training should address
o
o
o
Problem solving
Cognitive restructuring
Stress management
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Contact Us
linda.nichols@va.gov
rburns1@uthsc.edu
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