Transcript February 2004 Maintain Your Brain Overview

Utah Chapter
Counseling the Alzheimer’s
Caregiver:
Impact on Self-Efficacy of the Caregiver
and Disease Recipient
Aging in America Conference
San Francisco, April 28, 2011
Presented by Sylvia Brunisholz, Nick Zullo and Sonnie Yudell,
Alzheimer’s Disease Supportive Services Program of Utah
Utah Chapter
We will talk about…
Solutions-Focused Counseling
Caregiver Impacts and Dilemmas
A Plan for Life and Care
Individualized Cognasium Plan
Neuropsychiatric Inventory
Questionnaire
Self-Efficacy of the Client Dyad
Solutions-Focused
Counseling
Looks at the positive
side of problems and
what works.
Useful with both senior
spousal and adult
offspring caregivers
R. K. & Gilliland, B. E. (2003). Theories and strategies in counseling and
psychotherapy, 5th ed. Boston, MA: Allyn & Bacon.
Solutions-Focused
Counseling
Places emphasis on the
future rather than the
present or past.
Client’s are their own
experts who can know
what is best for them
Solutions-Focused
Counseling
Therapy is collaborative
Uses the resources
available to the client
Problems are reframed
in a more positive way
What problems do Alzheimer’s
caregivers present with in counseling?
Concerns about behavioral
and Neuropsychiatric
Symptoms of the disease
Their negative effects for
both caregiver and disease
recipient
Aalten et al. (2005). The course of neuropsychiatric symptoms in dementia.
International Journal of Geriatric Psychiatry, 20, 523-530.
What are the effects of these problems?
Reduced quality of life for
both caregiver and disease
recipient
More rapid decline trajectory
Earlier institutionalization
Burgener, S.C. & Twigg, P. (2002). Interventions for persons with irreversible dementia.
Annual Review of Nursing Research, 20, 89-124.
What are common causes of behaviors
in early stage (and resulting CG strain)?
Apathy and depression
Other cognitive deficits and
functional impairment follow
(Higher level of CG burden
and utilization of resources)
Starkstein et al. (2009). Neuroimaging correlates of apathy and depression in
Alzheimer’s disease. Journal of Neuripsyciatric Clinical Neuroscience, 21(3): 259-265.
Can these causes be treated (and thus
reduce CG strain)?
Studies indicate that
pharmacological treatment
did not influence the course
of the neuropsychiatric
symptoms in dementia
(leaves few options for CG)
Aalten et al. (2005). The course of neuropsychiatric symptoms in dementia.
International Journal of Geriatric Psychiatry, 20, 523-530.
What are the perceptual impacts of
these causes (particularly on CG role)?
Although behavioral
disturbances may be mild,
people in early stage are
less aware of their cognitive
and behavioral deficits
(Varies from caregiver’s view)
Onor, et al. (2006). Different perception of cognitive impairment, behavioral disturbances
and functional disabilities. American Journal of Alzheimer’s Disease, 21, 333-338.
What is the relational impact of the
causes (and CG reaction to them)?
This perception discrepancy
may disrupt the relationship
between the caregiver and
the person with dementia
(This disruption contributes
to earlier institutionalization)
What is the role of solution-focused
counseling to treat these causes?
Address behavioral
symptoms in early stage
Do so through health
promotion activities; early
stage persons are more
willing to participate in a
well organized program
Fitzsimmons, S. & Buetter, L.L. (2003). Health promotion for the mind, body, and spirit
for older adults with dementia. American Journal of Alzheimer’s Disease, 18, 282-290.
What are the results of solution-focused
counseling coupled with dementia
activity programs?
Promotes and maintains
optimal health for both early
stage person and caregiver
Quality of life for both
Cognasium
Gymnasium for the Brain
From a clinical perspective:
Studies indicate that despite the
progressive nature of dementia,
individuals with Alzheimer’s
disease can still learn and
maintain their cognitive capacity
through cognitive training
Sitzer et al (2006). Cognitive Training in Alzheimer’s Disease: A Meta-analysis of the
Literature. Acta Psychiatrica Scandinavica, 114, 75-90
Cognasium
From a research perspective:
Research indicates the human
brain can reorganize after
damage and experience
functional improvements, even in
neurodegenerative diseases
such as Alzheimer’s disease
Cognitive training can be
effective for managing symptoms
in individuals with early stage
Alzheimer’s disease and related
dementias
Yu et al (2009) Cognitive Training for Early-Stage Alzheimer’s Disdease and Related
Dementia. Journal of Gerontological Nursing, 35(3), 23-29
Cognasium
From a counseling perspective:
It is a solution-oriented
It is a type of redirection for and
by the caregiver
It is focused on the future and is
activity-based
It de-pathologizes dementia and
emphasizes remaining capacities
Pre-Clinical Cognasium
Encourages better health practices
in the caregiver
Nutrition, exercise, cognition and
socialization may impact
Alzheimer’s risk
Outreach is accomplished through
Brain Fitness Workshops
Popular with pre-clinical senior
adults for whom Alzheimer’s is
greatest health worry
Post-Diagnosis
Cognasium
Applicable to Early Stage
Alzheimer’s Patients
Including persons with MCI
Dyadic approach with caregiver
and disease recipient; supports
caregiver self-efficacy
Based on an individualized
Cognasium Plan (ICP)
How does Cognasium
address caregiver selfefficacy?
Psychologist Albert Bandura has
defined self-efficacy as our belief
in our ability to succeed in
specific situations.
Caregivers believe they can
perform well and view their
difficult tasks as doable if not
something they can master
How does Cognasium
address self-efficacy of
the early stage person?
People with dementia describe it
as isolating and life-changing
They lose jobs, volunteer
opportunities, ability to drive,
connections to family and
friends
Support groups for caregivers;
what about the ES person?
How does Cognasium
address self-efficacy of
the early stage person?
An Individualized Cognasium
Plan (ICP) for the ES person is a
direct intervention and support
It empowers them to provide
input to family and counselor
Opportunity to make friends with
others in the program – staying
connected and feeling supported
Cognasium
Cognasium defeats nihilism
The ICP is for both the caregiver
and the ES person
The caregiver/disease recipient
dyad enters counseling in
disarray – through counseling,
roles are redefined
Counseling is offered individually
and as an empowered dyad
Scene from “Diminished Capacity”
Cognasium
Provides a personhood- affirming
approach to the disease recipient
without seeming to
De-emphasizes stress-burden
for CG and addresses their
needs too - provides respite
without seeming to
Cognasium is action-oriented;
a natural response to needs Cognasium Approach: Organic, familyoriented, connective, reinforcing, transforming
Cognasium is possible only after addressing the caregiver’s needs
Caregiver Support and Counseling
Advance Stages
Diagnosis
Pre- and post-testing shows
●
Reduced depression
●
Enhanced social support
●
Capacity to manage symptoms
Cognasium
Cognasium is possible only after addressing the caregiver’s needs
Caregiver Impacts
Some caregivers have little
emotional difficulty
More than 40% have high
emotional stress
About 1/3 have symptoms of
depression
Caregiver stress is related to nursing home placement,
but caregiver stress is often just as high after nursing
home placement
Cognasium Objective: Caregiver Intervention
What about
Alzheimer’s Caregiver Impacts?
Compared with other unpaid
caregivers of people with
Alzheimer’s and other
dementias
● Are more likely to report fair
or poor health
● Are more likely to say that
caregiving made their health
worse
There are
Factors that Worsen the Impact
of Alzheimer’s Caregiving
Behavioral symptoms of the care recipient
Co-existing medical conditions of the care recipient
Lack of perceived help from other family members and
friends
Belief that one has no choice about caregiving
Many personality characteristics of the caregiver and
the care recipient and their prior relationship
The reality of
Alzheimer’s Caregiver Impacts
Many Alzheimer’s/dementia advocates say that 40%,
50%, 60% of caregivers dies before their care
recipient
There is no data to support that statement
One study of caregivers in general found that
caregivers who were experiencing strain were 63%
more likely to die than non-caregivers; over 4 years,
about 17% of the caregivers died compared with
almost 11% of the non-caregivers
In our own state:
Alzheimer’s Realities in Utah
In 2010, there were 32,000 persons with Alzheimer’s
disease in Utah (70% of all dementias)
Utah will experience a 127% growth in Alzheimer’s
prevalence from 2000 to 2025, highest in the nation
There are 101,000 Utah dementia caregivers
They provided 115 million hours of unpaid care
This care was valued at $1.3 billion
According to 2010 Facts and Figures Report, reported to Congress in May, 2010
What caregivers tell us:
Top 10 Caregiver Dilemmas
Why do Alzheimer’s Caregivers reach out for help?
A recent survey of Helpline calls, revealed the Top 10
Caregiver dilemmas (regarding the Alzheimer’s loved one)
● 30% wanted to know, “Is it Alzheimer’s?” (What are
the signs and symptoms?)
● 16% wanted to know how to get help caring for a
loved one at home
● 11% wanted help due to burnout
● 11% needed help finding a diagnosis
● 9% were seeking help with disturbing behavior
Top 10 Caregiver Dilemmas
Helpline survey continued…
● 8% said they could not handle care at home
anymore
● 5% were seeking help with coping skills
● 5% were in crisis and needed emergency help
● 3% had questions about legal and financial issues
● 2% needed help dealing with family conflict
Care Consultation
Diagnosis
Helpline
The progression of the
disease is different for
each – tailor the intervention to retained skills
A Plan for Life and Care
Accurate assessments
are essential
Plans identify coping strategies
for CG and well-being and selfesteem for ES person
Cognasium Goal: Link diagnostic
and medical care with counseling
and supportive services
Richards et al (2003). Defining “early dementia” and monitoring
intervention. Aging and Mental Health, 7, 7-14
Physicians seek such services for patients
National Survey of Physicians
Physicians listed these unmet needs in caring for
dementia patients (a variety of management needs not available for
patients/caregivers through traditional medical practices):
● More support of families of patients
● Support groups, case management, financial
management (we call it “financial emotions”)
● Instrumental support, homecare services
(transportation and shopping)
● Identifying appropriate living situations
(assisted living, long term care setting and treatment)
National Survey of Physicians
Continued…
Physician listed these unmet needs in caring for
dementia patients (specific needs regarding patient safety were
mentioned):
● Safety (of living situation), home assessments,
respite or backup care, dispensing of medications,
unsafe driving
● Help with patient wandering and dementia abuse
● Psychiatric help available as rapidly as needed
● Concern about helpfulness of Adult Protective
Services
Before Cognasium…
One physician stated, “We have not referred any
patients; it's usually family members who find these
resources. We do not know of much.”
Another physician stated, “I think what they do is give
families some information and resources for daycare
and nursing homes that have Alzheimer's settings. I
don't know if there is an actual office to go in and get
help.”
Physicians in the survey estimated that about 40% of
their patients were above age 65 and about 10% of their
patients had cognitive impairment, Alzheimer’s disease,
or another form of dementia
After Cognasium…
One physician stated, “We would evaluate the patient, then
neurology, and then the Alzheimer's Association can provide us
with the kind of help that they can provide. So if we can have the
physician, the Alzheimer's Association, and the family sitting
together in one room it makes things better.”
Another physician described the ideal Alzheimer’s
Association partnership: “a multidisciplinary network that you
can call on to go to the patient's house, make an assessment, give
us some feedback, and maybe provide a therapist to help the family
adjust and help with medications. [The goal would be] to have a
team that we can rely on and still be able to be in charge of the
medical issues.”
Physicians like the case management of practice patients provided
by the Alzheimer’s Association
Cognasium Addresses
Needs of People in Early-Stage
Early diagnosis of ADRD is necessary to establish a
baseline and track changes, target interventions to
maintain functioning, make plans, and ensure adequate
medication prescription and use
People with ADRD maintain awareness more than is
realized. It is important to acknowledge this by
including them in care planning and allowing them to
be part of decision making
The ADRD person’s perception of abilities may not be
updated to self-ensure safety. Caregiver must be
vigilant to maintain safety
Cognasium is a type of
Cognitive Training
(non-pharmacological intervention to improve cognition)
The human brain can reorganize after damage and
experience functional improvements, even in
neurodegenerative diseases such as Alzheimer’s
disease
Cognitive training can be effective for managing
symptoms in individuals with early stage AD and
dementia
Evidence is emerging regarding the effectiveness of
cognitive enhancement interventions such as memory
aids, neuropsychological rehabilitation and reality
orientation for managing symptoms
Neuropsychiatric Inventory
Questionnaire
Assesses domains of dementia behavior including their
frequency and severity. Twelve domains include
agitation, depression, anxiety, apathy, etc. Assesses
behavioral changes based on standardized caregiver
interview
Assessment of caregiver distress based on integrated
scale to evaluate distress associated with behavioral
changes in the person with dementia
Supports teaching and communication with caregivers
based on changes in the symptom ratings and supports
counseling intervention
Neuropsychiatric Inventory
Questionnaire
Hallucinations
Disinhibition
Delusions
Euphoria
Agitation/aggression
Apathy
Dysphoria/depression
Aberrant
Anxiety
Sleep
Irritability
Appetite
motor behavior
& night-time change
and eating change
Dr. Jeffrey Cummings, http://npitest.net/about-npi.html
Neuropsychiatric Inventory Questionnaire
– Key CG indicators
Agitation/aggression
Anxiety
Distress
33% reduced
16% increased
Apathy
45% reduced
Sleep & night-time change
12% reduced
Appetite and eating
- Eighteen Cognasium Dyads,
eight- months post-test, April, 2011
16% reduced
Activity-Based Dementia Care
Why Cognasium Works
Safe environment for anger,
shock and tears; hope and
support is provided
“There is life after diagnosis”
through socialization, exercise,
nutrition and cognitive
stimulation
We are “Making Sense of
Alzheimer’s” (branded Utah
Symphony collaboration)
“Making Sense of Alzheimer’s” is a branded collaboration with the Utah Symphony
that garnered national attention in 2010
Activity-Based Dementia Care
Why Cognasium Works
It is a form of the “chronic care
model” Patients (and their
families) become more informed
and activated
Interventionists are more
proactive, which should result in
improved clinical and functional
outcomes
Intervention with caregiver
results in improved
neuropsychiatric symptoms
Activity-Based Dementia Care
Why Cognasium Works
Cognasium is a day retreat program for
persons with Alzheimer’s and other
dementias
Participants have varying MMSE scores
but socialize and support each other
Impacts on home environment – less
behaviors, increased caregiver wellbeing, delayed institutional placement
LTC placement by plan, not crisis
Activity-Based Dementia Care
Why Cognasium Works
Music and dementia care – annual
collaboration with the Utah Symphony
and Utah Opera
Visual arts in dementia care – engenders
socialization and gives family members a
new appreciation for the patient’s value
and quality of life needs
“I Remember Better When I Paint”
“Meet Me at MoMA coming to Salt Lake
(Utah Fine Arts Museum and CACIR)
Activity-Based Dementia Care
Why Cognasium Works
Movement and dance in dementia care –
Art Access funded by Kennedy
Foundation emphasizes dance as a
means of reminiscence therapy
Cognitive stimulation – learning a foreign
language
Some dyads are utilizing Mind-Body
Bridging program as part of their ICP’s
This spring, Wheeler Farm excursions
Every step we take addresses CAUSE, CARE and CURE of Alzheimer’s
Next Steps in Utah
COUNSELING - Integrate cognasium
into day care for early stage, home and
community-based care settings, primary
care and programs with Area Agencies
on Aging and Veterans Administration
CAREGIVER SUPPORT – Reach,
educate and empower caregivers,
provide respite, self care training and
caregiver conferences
People + Science
SUSTAINABILITY - implement evidencebased intervention and incorporate
research findings, build resources
through community and funding
partnerships, professional training
Our challenges motivate us
Utah’s Alzheimer’s Growth Rate
127% increase
Projected
from 2000
45% increase
to 2025
From 2000
To 2010
Highest of any
state
Source: Alzheimer’s Facts and Figures 2010, presented to Congress in March, 2010
Cognasium: Counseling intervention
that emphasizes health promotion
“Honest doc – if I’d
known I was
gonna live this
long, I’d have
taken better care
of myself.”
Every client, interventionist and
volunteer will be invited to develop
an Individualized Cognasium Plan
(ICP) for brain fitness
“When the Lord calls me home,
I will leave with the greatest optimism
for the future”
- Ronald Reagan
The compassion to care, the leadership to conquer