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Impact on Self-Efficacy of the Caregiver and Disease Recipient Aging in America Conference San Francisco, April 28, 2011

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1. Do ederly people prefer watching TV or browsing Internet? Utah Chapter Counseling the Alzheimer s Caregiver: Impact on Self-Efficacy of the Caregiver and Disease ... – PowerPoint PPT presentation

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Title: Impact on Self-Efficacy of the Caregiver and Disease Recipient Aging in America Conference San Francisco, April 28, 2011


1
Impact on Self-Efficacy of the Caregiver and
Disease RecipientAging in America
ConferenceSan Francisco, April 28, 2011
1. Do ederly people prefer watching TV or
browsing Internet?  
Utah Chapter
  • Counseling the Alzheimers Caregiver

Presented by Sylvia Brunisholz, Nick Zullo and
Sonnie Yudell, Alzheimers
Disease Supportive Services Program of Utah
2
Solutions-Focused CounselingCaregiver Impacts
and DilemmasA Plan for Life and
CareIndividualized Cognasium PlanNeuropsychiat
ric Inventory QuestionnaireSelf-Efficacy of the
Client Dyad
1. Do ederly people prefer watching TV or
browsing Internet?  
Utah Chapter
  • We will talk about

3
Looks at the positive side of problems and what
works.Useful with both senior spousal and adult
offspring caregivers
1. Do ederly people prefer watching TV or
browsing Internet?  
  • Solutions-Focused Counseling

R. K. Gilliland, B. E. (2003). Theories and
strategies in counseling and psychotherapy, 5th
ed. Boston, MA Allyn Bacon.
4
Places emphasis on the future rather than the
present or past.Clients are their own experts
who can know what is best for them
1. Do ederly people prefer watching TV or
browsing Internet?  
  • Solutions-Focused Counseling

5
Therapy is collaborative Uses the resources
available to the clientProblems are reframed in
a more positive way
1. Do ederly people prefer watching TV or
browsing Internet?  
  • Solutions-Focused Counseling

6
Concerns about behavioral and Neuropsychiatric
Symptoms of the diseaseTheir negative effects
for both caregiver and disease recipient
1. Do ederly people prefer watching TV or
browsing Internet?  
  • What problems do Alzheimers caregivers present
    with in counseling?

Aalten et al. (2005). The course of
neuropsychiatric symptoms in dementia.
International Journal of Geriatric Psychiatry,
20, 523-530.
7
Reduced quality of life for both caregiver and
disease recipientMore rapid decline
trajectoryEarlier institutionalization
1. Do ederly people prefer watching TV or
browsing Internet?  
  • What are the effects of these problems?

Burgener, S.C. Twigg, P. (2002). Interventions
for persons with irreversible dementia. Annual
Review of Nursing Research, 20, 89-124.
8
Apathy and depressionOther cognitive deficits
and functional impairment follow(Higher level
of CG burden and utilization of resources)
1. Do ederly people prefer watching TV or
browsing Internet?  
  • What are common causes of behaviors in early
    stage (and resulting CG strain)?

Starkstein et al. (2009). Neuroimaging
correlates of apathy and depression in
Alzheimers disease. Journal of Neuripsyciatric
Clinical Neuroscience, 21(3) 259-265.
9
Studies indicate that pharmacological treatment
did not influence the course of the
neuropsychiatric symptoms in dementia (leaves
few options for CG)
1. Do ederly people prefer watching TV or
browsing Internet?  
  • Can these causes be treated (and thus reduce CG
    strain)?

Aalten et al. (2005). The course of
neuropsychiatric symptoms in dementia.
International Journal of Geriatric Psychiatry,
20, 523-530.
10
Although behavioral disturbances may be mild,
people in early stage are less aware of their
cognitive and behavioral deficits(Varies from
caregivers view)
1. Do ederly people prefer watching TV or
browsing Internet?  
  • What are the perceptual impacts of these causes
    (particularly on CG role)?

Onor, et al. (2006). Different perception of
cognitive impairment, behavioral disturbances and
functional disabilities. American Journal of
Alzheimers Disease, 21, 333-338.
11
This perception discrepancy may disrupt the
relationship between the caregiver and the person
with dementia(This disruption contributes to
earlier institutionalization)
1. Do ederly people prefer watching TV or
browsing Internet?  
  • What is the relational impact of the causes (and
    CG reaction to them)?

12
Address behavioral symptoms in early stageDo so
through health promotion activities early stage
persons are more willing to participate in a
well organized program
1. Do ederly people prefer watching TV or
browsing Internet?  
  • What is the role of solution-focused counseling
    to treat these causes?

Fitzsimmons, S. Buetter, L.L. (2003). Health
promotion for the mind, body, and spirit for
older adults with dementia. American Journal of
Alzheimers Disease, 18, 282-290.
13
Promotes and maintains optimal health for both
early stage person and caregiverQuality of life
for both
1. Do ederly people prefer watching TV or
browsing Internet?  
  • What are the results of solution-focused
    counseling coupled with dementia activity
    programs?

14
Gymnasium for the BrainFrom a clinical
perspective Studies indicate that despite the
progressive nature of dementia, individuals with
Alzheimers disease can still learn and maintain
their cognitive capacity through cognitive
trainingThe Cognasium Approach
Improving Dementia Care by Facilitating
aPartnership of Disease Recipient, Caregiver and
Physician
1. Do ederly people prefer watching TV or
browsing Internet?  
  • Cognasium

Sitzer et al (2006). Cognitive Training in
Alzheimers Disease A Meta-analysis of the
Literature. Acta Psychiatrica Scandinavica, 114,
75-90
15
From a research perspective Research indicates
the human brain can reorganize after damage and
experience functional improvements, even in
neurodegenerative diseases such as Alzheimers
diseaseCognitive training can be effective for
managing symptoms in individuals with early stage
Alzheimers disease and related
dementiasThe Cognasium Approach
Improving Dementia Care by Facilitating
aPartnership of Disease Recipient, Caregiver and
Physician
1. Do ederly people prefer watching TV or
browsing Internet?  
  • Cognasium

Yu et al (2009) Cognitive Training for
Early-Stage Alzheimers Disdease and Related
Dementia. Journal of Gerontological Nursing,
35(3), 23-29
16
From a counseling perspective It is a
solution-orientedIt is a type of redirection
for and by the caregiverIt is focused on the
future and is activity-basedIt de-pathologizes
dementia and emphasizes remaining
capacitiesThe Cognasium Approach
Improving Dementia Care by Facilitating
aPartnership of Disease Recipient, Caregiver and
Physician
  • Cognasium

17
Encourages better health practices in the
caregiverNutrition, exercise, cognition and
socialization may impact Alzheimers risk
Outreach is accomplished through Brain Fitness
Workshops Popular with pre-clinical senior
adults for whom Alzheimers is greatest health
worryThe Cognasium Approach Improving
Dementia Care by Facilitating aPartnership of
Disease Recipient, Caregiver and Physician
1. Do ederly people prefer watching TV or
browsing Internet?  
  • Pre-Clinical Cognasium

18
Applicable to Early Stage Alzheimers
PatientsIncluding persons with MCIDyadic
approach with caregiver and disease recipient
supports caregiver self-efficacy Based on an
individualized Cognasium Plan (ICP)
1. Do ederly people prefer watching TV or
browsing Internet?  
  • Post-Diagnosis Cognasium

19
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
1. Do ederly people prefer watching TV or
browsing Internet?  
  • How does Cognasium address caregiver
    self-efficacy?

20
People with dementia describe it as isolating and
life-changingThey lose jobs, volunteer
opportunities, ability to drive, connections to
family and friendsSupport groups for
caregivers what about the ES person?
1. Do ederly people prefer watching TV or
browsing Internet?  
  • How does Cognasium address self-efficacy of the
    early stage person?

21
An Individualized Cognasium Plan (ICP) for the ES
person is a direct intervention and supportIt
empowers them to provide input to family and
counselorOpportunity to make friends with
others in the program staying connected and
feeling supported
1. Do ederly people prefer watching TV or
browsing Internet?  
  • How does Cognasium address self-efficacy of the
    early stage person?

22
Cognasium defeats nihilismThe ICP is for both
the caregiver and the ES personThe
caregiver/disease recipient dyad enters
counseling in disarray through counseling,
roles are redefinedCounseling is offered
individually and as an empowered dyad
1. Do ederly people prefer watching TV or
browsing Internet?  
  • Cognasium

Scene from Diminished Capacity
23
Provides a personhood- affirming approach to the
disease recipient without seeming
toDe-emphasizes stress-burden for CG and
addresses their needs too - provides respite
without seeming toCognasium is action-oriented
a natural response to needs
1. Do ederly people prefer watching TV or
browsing Internet?  
  • Cognasium

Cognasium Approach Organic, family- oriented,
connective, reinforcing, transforming
24
Cognasium is possible only after addressing the
caregivers needs Caregiver Support and Counseling
  • Advance Stages
  • Pre- and post-testing shows
  • Reduced depression
  • Enhanced social support
  • Capacity to manage symptoms

Diagnosis
Cognasium
25
Cognasium is possible only after addressing the
caregivers 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

26
What about
Alzheimers Caregiver Impacts?
  • Compared with other unpaid caregivers of people
    with Alzheimers and other dementias
  • Are more likely to report fair or poor health
  • Are more likely to say that caregiving made
    their health worse

27
There are
Factors
that Worsen the Impact of Alzheimers 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

28
The reality of
Alzheimers Caregiver Impacts
  • Many Alzheimers/dementia advocates say that 40,
    50, 60 of caregivers dies before their care
    recipientThere 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

29
In our own state
Alzheimers Realities in Utah
  • In 2010, there were 32,000 persons with
    Alzheimers disease in Utah (70 of all
    dementias)
  • Utah will experience a 127 growth in Alzheimers
    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
30
What caregivers tell us
Top 10 Caregiver Dilemmas
  • Why do Alzheimers Caregivers reach out for help?
    A recent survey of Helpline calls, revealed the
    Top 10 Caregiver dilemmas (regarding the
    Alzheimers loved one)
  • 30 wanted to know, Is it Alzheimers? (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

31
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

32
The progression of the disease is different
for each tailor the inter- vention
to retained skillsAccurate assessments
are essentialPlans identify coping strategies
for CG and well-being and self-esteem for ES
person
1. Do ederly people prefer watching TV or
browsing Internet?  
Care Consultation
Diagnosis
Helpline
A Plan for Life and Care
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
33
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)

34
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

35
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,
    Alzheimers disease, or another form of dementia

36
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 Alzheimers
    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 Alzheimers Association

37
Cognasium AddressesNeeds 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 persons perception of abilities
may not be updated to self-ensure safety.
Caregiver must be vigilant to maintain safety
38
Cognasium is a type ofCognitive Training

(non-pharmacological intervention to improve
cognition)

The human brain can reorganize after damage and
experience functional improvements, even in
neurodegenerative diseases such as Alzheimers
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
39
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
40
Neuropsychiatric Inventory Questionnaire
  • Hallucinations
  • Delusions
  • Agitation/aggression
  • Dysphoria/depression
  • Anxiety
  • Irritability
  • Dr. Jeffrey Cummings, http//npitest.net/about-npi
    .html
  • Disinhibition
  • Euphoria
  • Apathy
  • Aberrant motor behavior
  • Sleep night-time change
  • Appetite and eating change

41
Neuropsychiatric Inventory Questionnaire Key CG
indicators
Distress 33 reduced 16 increased 45
reduced 12 reduced 16 reduced
  • Agitation/aggression
  • Anxiety
  • Apathy
  • Sleep night-time change
  • Appetite and eating

_______________
_______________
_______________
_______________
_______________
- Eighteen Cognasium Dyads, eight- months
post-test, April, 2011
42
Safe environment for anger, shock and tears hope
and support is providedThere is life after
diagnosis through socialization, exercise,
nutrition and cognitive stimulationWe are
Making Sense of Alzheimers (branded Utah
Symphony collaboration)
1. Do ederly people prefer watching TV or
browsing Internet?  
Activity-Based Dementia Care
Why Cognasium Works
Making Sense of Alzheimers is a branded
collaboration with the Utah Symphony that
garnered national attention in 2010
43
It is a form of the chronic care model
Patients (and their families) become more
informed and activatedInterventionists are more
proactive, which should result in improved
clinical and functional outcomesIntervention
with caregiver results in improved
neuropsychiatric symptoms
1. Do ederly people prefer watching TV or
browsing Internet?  
Activity-Based Dementia Care
Why Cognasium Works
44
Cognasium is a day retreat program for persons
with Alzheimers and other dementiasParticipants
have varying MMSE scores but socialize and
support each otherImpacts on home environment
less behaviors, increased caregiver well-being,
delayed institutional placementLTC placement by
plan, not crisis
1. Do ederly people prefer watching TV or
browsing Internet?  
Activity-Based Dementia Care
Why Cognasium Works
45
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 patients value and quality of life needsI
Remember Better When I PaintMeet Me at MoMA
coming to Salt Lake (Utah Fine Arts Museum and
CACIR)
1. Do ederly people prefer watching TV or
browsing Internet?  
Activity-Based Dementia Care
Why Cognasium Works
46
Movement and dance in dementia care Art Access
funded by Kennedy Foundation emphasizes dance as
a means of reminiscence therapyCognitive
stimulation learning a foreign languageSome
dyads are utilizing Mind-Body Bridging program as
part of their ICPsThis spring, Wheeler Farm
excursions
1. Do ederly people prefer watching TV or
browsing Internet?  
Activity-Based Dementia Care
Why Cognasium Works
47
Every step we take addresses CAUSE, CARE and CURE
of Alzheimers 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
  • SUSTAINABILITY - implement evidence-based
    intervention and incorporate research findings,
    build resources through community and funding
    partnerships, professional training

People Science
48
Utahs Alzheimers Growth Rate
Our challenges motivate us
127 increase Projected from 2000 to
2025 Highest of any state
45 increase From 2000 To 2010
Source Alzheimers Facts and Figures 2010,
presented to Congress in March, 2010
49
Cognasium Counseling intervention that
emphasizes health promotion
  • Honest doc if Id known I was gonna live this
    long, Id have taken better care of myself.

Every client, interventionist and
volunteer will be invited to develop an
Individualized Cognasium Plan (ICP) for brain
fitness
50
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
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