Empowered for the
Dementia Caregiver Journey
Suzann Ogland-Hand, PhD
Cathy Brady, LMSW
Joy Spahn, MPA
Chris Simons, CTRS
GVSU Art & Science of Aging
February 8, 2013
Learning Objectives
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Recognize competencies needed for those
providing direct care for persons with dementia
Identify primary causes of dementia
Explain importance and benefits of early detection
and assessment of dementia for persons with
dementia and their family members
Locate and recommend available communitybased resources for dementia diagnostic and
support services
Dementia Competencies
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http://www.dementiacoalition.org
Knowledge & Skills for Dementia Care: A
Guide for Direct Care Workers in Everyday
Language (free download)
Dementia Competencies Self-Assessment
Tool
Kim Curyto, PhD (585) 297-1221
Kimberly.Curyto@va.gov
Dementia Competencies
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Knowledge of Dementia Disorders
Person-Centered Care
Care Interactions
Enriching the Person’s Life
Understanding Behaviors
Interacting with Families
Direct Care Worker Self-Care
Knowledge of Dementia Disorder
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Causes
Difference between irreversible and
reversible dementia
Delirium
Brain changes
When you have met someone with
dementia you have met someone with
dementia
Person-Centered Care
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Characteristics of person-centered care
Providing comfort and security with full and
meaningful life
Know the persons life story
Know how your background affects how you
give care
Care Interactions
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Physical care that matches the needs and
abilities of the person
Safety needs
Focus on strengths
Use the person’s life story
Identify and support the person’s feelings
Enriching the Person’s Life
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Continue activities, social life and community
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Offer activities that preserve self-esteem
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Intimacy, sexuality and feeling close
Understanding Behaviors
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A way of communicating
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Recognize that what a person thinks is
acceptable behavior in their reality
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Learn affective responses to behaviors
Interacting with Families
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Understand the family relationships
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Use a positive accepting approach
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Recognize the family as part of the
caregiving team
Direct Care Worker Self-Care
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Personal issues or attitudes that impact
caring relationship
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Methods of coping with stress
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Ways of coping with grief and loss
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Ways to communicate with co-workers
Knowledge of Dementia Disorder
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Causes
Difference between irreversible and
reversible dementia
Delirium
Brain changes
When you have met someone with
dementia you have met someone with
dementia
What is Dementia?
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Dementia is not a disease, but rather a group
of symptoms caused by disease, temporary
illness, or a condition
What is Dementia?
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decline in thinking and memory
description of symptoms
does not give any explanation of cause of
problems (i.e., etiology)
>24 broad categories of causes that can cause
dementia
Dementia is
not a normal part of the
aging process
Reversible Dementias
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Medication
Dehydration
Malnutrition/Vitamin Deficiency
Depression
Medical problems
Alcohol and drug abuse
Tumor
Non-reversible Dementias
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#1 Alzheimer’s Disease (AD)
#2 Vascular Dementia (VaD)
#3 Lewy-Body Dementia (LBD)
#4 Frontal Temporal Dementia (FTD)
#5 Parkinson’s Disease (PD)
(Rare neurological Diseases)
- Huntington’s Disease
- Cruetzfeld-Jacob Disease
Mild Cognitive Impairment (MCI)
•
Mild impairment in memory
•
Preservation of general cognitive function
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Preserved ADL/IADL functional abilities
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Absence of diagnosed dementia
Knowledge of Illness: Staging
Tracking Course of Decline
 Global Deterioration Scale (GDS) - Reisberg
 Clinical Dementia Rating Scale (CDR) – Morris,
Alzheimer’s Disease Research Center, Wash U
 Functional Assessment Staging (FAST) –
Reisberg
 Alzheimer’s Association Scale
 Allen Cognitive Scales
CDR: http://rgp.toronto.on.ca/dmcourse/toolkit/app5.htm
Allen Cognitive Scales
Staging Systems
Time-Based
(Alzheimer’s
Association)
PerformanceBased
(Allen)
Normal
Early
Early-Middle
Late-Middle
Late
6.0
5.0
4.5-4.0
3.5-3.0
2.0-1.0
Functional Ability
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Activities of Daily Living (ADL’s)
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Instrumental Activities of Daily Living
Importance of Early Detection
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Knowing is better than wondering
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Dementia is sometimes caused
by treatable conditions
Medication side effects
 Nutritional deficiencies
 Depression
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Importance of Early Detection
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Early, accurate diagnosis is important in
determining course of treatment
Medical and behavioral treatments may ease
symptoms for individual with dementia
 Other conditions that may accompany dementia
(depression and anxiety) can be treated
 Can improve general health and may improve mental
abilities
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Benefits of Early Detection
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Allows planning for future, together
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Link to supports, services and case
management, to prevent crises
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Support network of family and friends
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Early diagnosis gives everyone time to prepare
mentally and emotionally for changes ahead
How is dementia diagnosed?
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Medical Exams
Physical
 Neurological
 Laboratory studies and neuroimaging
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Neuropsychological testing
Behavioral
 To determine cognitive strengths & weaknesses
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Seeking an Evaluation
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Contact their Primary Care Physician
Consider an evaluation by an expert
Primary Care Physician
 Memory Diagnostic Clinic
 Neurologist
 Neuropsychologist
 Psychiatrist
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Diagnosis
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Not all tests & exams are appropriate for
every person
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The diagnostic process requires teamwork. It
can involve:
Individual
 Family
 Physician
 Neuropsychologist
 Neurologist
 Social worker
 Speech pathologist
 Psychiatrist
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Memory Diagnostic Centers
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St. Mary’s Hauenstein AD & Memory Disorder Clinic
616/ 685-5050
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Spectrum Health Adult Neurology
616/ 267-7104
Local Diagnostic Resources
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Mary Free Bed Psychology Department
616/ 242-9201
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Pine Rest Christian Mental Health Services
866/ 852-4001 Psychological Consultation Center
www.PineRest.org
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Alzheimer’s Association www.Alz.org
800/ 272-3900
Common Intervention Types
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Psycho-educational
Teach cg’s info & skills in managing dementia
 Options: active participation vs. info only
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Support
Unstructured
 Emphasize support from members
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CBT
Focus on cg emotional reactions
 Teach ways to manage cg reactions
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Respite/adult day care
--Haley (2011)
Effectiveness of
Dementia Caregiver Interventions
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Psychosocial interventions (PI’s) for CGs improve
multiple outcomes: burden, depression, well-being,
ability/knowledge, & CR symptoms
CBT & PI’s with active CG participation best at
improving CG depression
PI’s with active CG participation best at improving
multiple outcomes
More limited effects for support, respite
Pinquart & Sörensen, 2006, as noted in Haley (2011)
Effect sizes for Depression
0.7
0.6
0.5
0.4
0.3
0.2
0.1
0
Psyed Active
Psyed Info
Respite
CB Therapy
Support
Pinquart & Sörensen, 2006, from Haley (2011)
Local Resources
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Area Agency on Aging of Western Michigan
616/ 456-5664
Caregiver Resource Network
www.caregiverresource.net
area services and information
Local Resources
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Alzheimer’s Association
(800) 272-3900
www.Alz.org
Dementia information, referral, services
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Pine Rest Christian Mental Health Services
866/ 852-4001 – Psychological Consultation Center
www.PineRest.org
evaluation and treatment
Area Resources
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Pine Rest Services
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Memory Screening Day – November (616/281-6382)
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Neuropsychological evaluation (866/852-4001)
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Outpatient counseling & medication management
(866/852-4001)
Area Resources
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Alzheimer’s Association (800) 272-3900
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Early Stage Programs
Support Group – support & skill building
 Living with Alzheimer’s – information
 Early-stage Social Engagement – support
 Early-stage
Support groups – support
 3-part series – information
 Creating Confident Caregivers – information & skill
building
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Caregiving Classes
Alzheimer’s Association of West Michigan
(800) 272-3900
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Creating Confident Caregivers program
 “Savvy
Caregiver Curriculum” from U of MN
 12 hours of training:
• Weekly class x6 weeks, 2 hours each
 Skills-based
psycho-education and support
 Facilitated by two leaders from Alzheimer’s
Association
Caregiving Classes
Clark Retirement Community
(616) 452-1568 ext 179
“Powerful Tools for Caregiving”
 Program originated at Mather LifeWays, &
collaboration with U of Illinois
 9 hour of training
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6
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weeks of classes, 1½ hours/week
Typically offered 3-4 times/year
Telephone Support
Alzheimer’s Association of West Michigan
(616) 459-4558 or (800) 272-3900
Helpline – 800# available 24/7
 Care Partner in Touch (care consultation)
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 Brief
phone assessment to set up action plan with
follow-up phone calls
 Continued support and education
 Person living in community (not long-term care
setting)
Web-based Professional
Education
Alzheimer’s Association essentiALZ program
 HealthCare Interactive®CARES® online
 Basic & Advanced training modules
 Certification available
 http://www.hcinteractive.com/essentialz
APA’s Family Caregiver Briefcase
 Practical tools for assessment & intervention
 http://www.apa.org/pi/about/publications/caregivers/inde
x.aspx
Web-based Caregiver Training
iCare Project
Phone: (855) 955-CARE
 E-Mail: icare@photozig.com
 NIA funded study (with Dolores GallagherThompson & Larry Thompson at Stanford)
 eStress Management Skills Training for
Alzheimer’s Dementia caregivers
 8 modules of 40 minutes/each (average) over
12 weeks
 Online video with option for DVD
Web Resources
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Family Caregiver Alliance
http://www.caregiver.org
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For Primary Care Providers
(www.dementiacoalition.org/professionals)
 PCDN Educational Modules:
Reimbursement for Dementia Care
 Pharmacologic Treatment of Alzheimer's Disease
 Clinical Diagnosis of Dementia
 Community Resources
 Dementia in Primary Care
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Web Resources
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Michigan Dementia Coalition
www.dementiacoaltion.org
 Dementia Competencies
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Pine Rest: “Today magazines” (health
condition library)
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www.pinerest.org/resources/today/default.asp
Dementia Scaling resources
 www.allencognitivelevelscreen.org
Contact Information
Cathy Brady, LMSW (Pine Rest Campus Clinic)
616/281-6363 x2965 (Tues & Wed)
Suzann Ogland-Hand, PhD (Pine Rest NE Clinic)
616/ 222-4550
Chris Simons, CTRS (Clark Retirement Community)
616/ 452-1666 x224
Joy Spahn, MPA (Alzheimer’s Assoc Greater MI Chapter)
616/ 459-4558