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 Kimberly.Curyto@va.gov

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: icare@photozig.com 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