empowered for the dementia caregiver journey
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Empowered for the Dementia Caregiver Journey. Suzann Ogland-Hand, PhD Joy Spahn, MPA Cathy Brady, LMSWChris Simons, CTRS GVSU Art & Science of Aging February 8, 2013. Learning Objectives. Recognize competencies needed for those providing direct care for persons with dementia - PowerPoint PPT PresentationTRANSCRIPT
Empowered for the Dementia Caregiver Journey
Suzann Ogland-Hand, PhD Joy Spahn, MPACathy Brady, LMSW Chris Simons, CTRS
GVSU Art & Science of AgingFebruary 8, 2013
Learning Objectives
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 community-based resources for dementia diagnostic and support services
Dementia Competencies
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 [email protected]
Dementia Competencies 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 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
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 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
Continue activities, social life and community
Offer activities that preserve self-esteem
Intimacy, sexuality and feeling close
Understanding Behaviors
A way of communicating
Recognize that what a person thinks is acceptable behavior in their reality
Learn affective responses to behaviors
Interacting with Families
Understand the family relationships
Use a positive accepting approach
Recognize the family as part of the caregiving team
Direct Care Worker Self-Care Personal issues or attitudes that impact
caring relationship
Methods of coping with stress
Ways of coping with grief and loss
Ways to communicate with co-workers
Knowledge of Dementia Disorder 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?
Dementia is not a disease, but rather a group of symptoms caused by disease, temporary illness, or a condition
What is Dementia? 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 Medication Dehydration Malnutrition/Vitamin Deficiency Depression Medical problems Alcohol and drug abuse Tumor
Non-reversible Dementias
#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
• Preserved ADL/IADL functional abilities
• Absence of diagnosed dementia
Knowledge of Illness: StagingTracking 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
THE CLINICAL DEMENTIA RATING SCALE
CDR: http://rgp.toronto.on.ca/dmcourse/toolkit/app5.htm
Allen Cognitive Scales
Staging Systems
Time-Based(Alzheimer’s Association)
NormalEarly
Early-MiddleLate-Middle
Late
Performance-Based (Allen)
6.05.0
4.5-4.03.5-3.02.0-1.0
Functional Ability
Activities of Daily Living (ADL’s)
Instrumental Activities of Daily Living
Importance of Early Detection Knowing is better than wondering
Dementia is sometimes caused by treatable conditions Medication side effects Nutritional deficiencies Depression
Importance of Early Detection
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
Benefits of Early Detection
Allows planning for future, together
Link to supports, services and case management, to prevent crises
Support network of family and friends
Early diagnosis gives everyone time to prepare mentally and emotionally for changes ahead
How is dementia diagnosed? Medical Exams
Physical Neurological Laboratory studies and neuroimaging
Neuropsychological testing Behavioral To determine cognitive strengths & weaknesses
Seeking an Evaluation Contact their Primary Care Physician Consider an evaluation by an expert
Primary Care Physician Memory Diagnostic Clinic Neurologist Neuropsychologist Psychiatrist
Diagnosis Not all tests & exams are appropriate for every person The diagnostic process requires teamwork. It can
involve: Individual Family Physician Neuropsychologist Neurologist Social worker Speech pathologist Psychiatrist
Memory Diagnostic Centers
St. Mary’s Hauenstein AD & Memory Disorder Clinic616/ 685-5050
Spectrum Health Adult Neurology616/ 267-7104
Local Diagnostic Resources
Mary Free Bed Psychology Department616/ 242-9201
Pine Rest Christian Mental Health Services866/ 852-4001 Psychological Consultation Centerwww.PineRest.org
Alzheimer’s Association www.Alz.org
800/ 272-3900
Common Intervention Types Psycho-educational
Teach cg’s info & skills in managing dementia Options: active participation vs. info only
Support Unstructured Emphasize support from members
CBT Focus on cg emotional reactions Teach ways to manage cg reactions
Respite/adult day care
--Haley (2011)
Effectiveness of Dementia Caregiver Interventions
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)
0
0.1
0.2
0.3
0.4
0.5
0.6
0.7
Psyed Active Psyed Info Respite CB Therapy Support
Effect sizes for Depression
Pinquart & Sörensen, 2006, from Haley (2011)
Local Resources Area Agency on Aging of Western Michigan
616/ 456-5664
Caregiver Resource Networkwww.caregiverresource.netarea services and information
Local Resources
Alzheimer’s Association(800) 272-3900www.Alz.orgDementia information, referral, services
Pine Rest Christian Mental Health Services866/ 852-4001 – Psychological Consultation Centerwww.PineRest.org
evaluation and treatment
Area Resources Pine Rest Services
Memory Screening Day – November (616/281-6382)
Neuropsychological evaluation (866/852-4001)
Outpatient counseling & medication management (866/852-4001)
Area Resources Alzheimer’s Association (800) 272-3900
Early Stage Programs Early-stage Support Group – support & skill building Living with Alzheimer’s – information Early-stage Social Engagement – support
Support groups – support 3-part series – information Creating Confident Caregivers – information & skill
building
Caregiving ClassesAlzheimer’s Association of West Michigan(800) 272-3900
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 ClassesClark 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
6 weeks of classes, 1½ hours/week Typically offered 3-4 times/year
Telephone SupportAlzheimer’s Association of West Michigan(616) 459-4558 or (800) 272-3900
Helpline – 800# available 24/7 Care Partner in Touch (care consultation)
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/
index.aspx
Web-based Caregiver TrainingiCare ProjectPhone: (855) 955-CARE E-Mail: [email protected] NIA funded study (with Dolores Gallagher-
Thompson & 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 Family Caregiver Alliance
http://www.caregiver.org
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
Web Resources Michigan Dementia Coalition
www.dementiacoaltion.org Dementia Competencies
Pine Rest: “Today magazines” (health condition library) www.pinerest.org/resources/today/default.asp
Dementia Scaling resources www.allencognitivelevelscreen.org
Contact InformationCathy 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