Embed Size (px)
Citation preview
The CARE Pathway Model for Demen7a (CARE-‐D): Psychosocial and Rehabilita7ve Strategies for Persons with Demen7a and Their Families Darby Morhardt, PhD, LCSW Cogni7ve Neurology and Alzheimer’s Disease Center Northwestern University Feinberg School of Medicine Illinois Guardianship Associa7on Conference May 20, 2015
Learning Objec7ves: 1. Understand how individuals with demen7a can
differ drama7cally in the types of symptoms they express and that a one-‐size-‐fits-‐all model of care for demen7a is inadequate for this popula7on
2. Discuss CARE-‐D tailored care based on results from psychosocial and neuropsychological assessments.
3. Assimilate how interven7ons focused on the person’s abili7es and strengths are adapted over 7me as needs and abili7es change.
2015 Alzheimer’s Disease Facts & Figures Alzheimer’s Association
From 2000-‐2008, Alzheimer’s Disease Deaths Increased 66% while …
Deaths by:
HIV – declined 29%
Stroke – declined 20%
Heart Disease – declined 13%
Prostate Cancer – declined 8%
Breast Cancer – declined 3% -30%
-20%
-10%
0%
10%
20%
30%
40%
50%
60%
70%
Based on Final 2008 Mortality Data
2012 Alzheimer’s Disease Facts & Figures Alzheimer’s Association
Alzheimer’s Disease: FACTS
• More than 5.4 million Americans have Alzheimer’s disease • Alzheimer’s disease is the 6th leading cause of death of all Americans, and
the 4th leading cause of death for older African Americans • African Americans are twice as likely to develop Alzheimer’s compared to
non-Hispanic whites.
WHY IS THERE SO MUCH ALZHEIMER’S DISEASE?
Two reasons:
1) We are living longer
2) Alzheimer’s is linked to aging
Dementia
• Decline from prior level of functioning in cognition, emotion, and/or behavior.
• Progressive worsening over time.
• Interferes with independence and daily activities.
A condition of the mind caused by a disease of the brain:
• There are many causes of dementia.
Behavioral & Emotional
Changes
Language & Word Finding Difficulty
Alzheimer’s disease begins in the medial temporal lobe, the area of the brain responsible for memory
Dem
entia
Alzheimer’s pathology (AD)
Alzheimer Type Dementia
Posterior Cortical Atrophy (PCA)
Primary Progressive Aphasia (PPA)
Behavioral variant Frontotemporal Dementia
(bvFTD)
Lewy Body pathology (LBD)
Vascular pathology
Frontotemporal degeneration (FTLD)
Primary Progressive Aphasia (PPA)
Corticobasal Degeneration (CBD)
Progressive Supranuclear Palsy (PSP)
FTD – Motor Neuron Disease (MND)
Behavioral Variant Frontotemporal degeneration
(bvFTD)
The CARE Pathway Model for Demen7a (CARE-‐D)
Neurocogni7ve Profile
Psychosocial Assessment
Tailored Recommenda7ons to the Person with Demen7a and
Family
NORTHWESTERN CARE PATHWAY MODEL
FOR DEMENTIA (CARE-D)
• SYMPTOMS: Exhibits problems with word finding, word and sentence comprehension, spelling; reading; hesitant speech errors.
• SYMPTOMS: Difficulty recognizing objects, faces, spa7al loca7on, judging distance; reading, leders move around; large print
• SYMPTOMS: Poor judgment; social disinhibi7on; loss of empathy; apathy; inability to to ini7ate, plan, organize
• SYMPTOMS: Forgets appointments, names, places recent events; misplaces personal belongings
Memory Behavior/Emo7on
Language Visuospa7al
PATIENT AND
FAMILY
Morhardt, D., Weintraub, S., Khayum, B., Robinson, J., Medina, J., O’Hara, M., Mesulam, M., & Rogalski, E., (In press). The CARE Pathway Model for Demen7a (CARE-‐D): Psychosocial and rehabilita7ve strategies for care in young-‐onset demen7as. Psychiatric Clinics of North America.
Psychosocial Assessment
“Assessment is an ongoing process, in which the client par7cipates, the purpose of which is to understand people in rela7on to their environment; It is a basis for planning what needs to be done to maintain, improve or bring about change in the person, the environment or both” Coulshed and Orme, 1998:21
Bio Psycho
Social
Diagnosis Gene7cs
Gender
Self Care Skills
Age
Emo7onal and Behavioral Development
Personality
Iden7ty
Coping Skills
Health Beliefs
Family and Social Rela7onships
History and Func7oning
Wider Network of Family, Friends, Neighbors
Economics/Income
Housing
Culture / Religion
Ethnicity / Race
Employment
Educa7on
Social, Structural Poli7cal, Economic,
Cultural Environment
• Word finding, comprehension, object recogni7on problems
• Problems loca7ng or misreaching for objects, trouble judging distance
• Poor judgment, disinhibi7on, loss of empathy, apathy
• Problems with short term memory. Forgenng names, places
Memory Behavior/ Emo7on
Language Visuospa7al
• Word finding, comprehension, object recogni7on problems
• Problems loca7ng or misreaching for objects, trouble judging distance
• Poor judgment, disinhibi7on, loss of empathy, apathy
• Problems with short term memory. Forgenng names, places
Memory Behavior/ Emo7on
Language Visuospa7al
IntervenFons: Maintain a rou7ne, structure and consistency. Referrals to speech and occupa7onal therapies to assess and implement strategies at home such as calendars and other organiza7onal systems to maximize independence
MEMORY
IntervenFons: Disclose diagnosis to friends and family to increase awareness, reduce embarrassment, avoid troubling social situa7ons, legal/financial interven7ons, structured ac7vity, family counseling
BEHAVIOR
IntervenFons: Speech therapy to assess and assist with maximizing communica7on, developing communica7on notebooks, “I have PPA” cards, iden7fying helpful augmenta7ve communica7on devices.
LANGUAGE
IntervenFons: Occupa7onal therapy to provide environmental sugges7ons to maximize independence. Low vision referrals to offer services to accommodate visual changes. – talking clocks, watches, cooking aids, audio books
VISUOSPATIAL
NORTHWESTERN CARE PATHWAY MODEL!CARE-D STRATEGIES!
PATIENT AND
FAMILY
EARLY MIDDLE LATE
SOCIAL WORK
• Disease educaFon • Emo7onal support • AdjusFng to changes in
everyday life, roles, loss • Future planning
• Referrals for meaningful acFvity, safety, respite
• Future planning
• Support for family • Ongoing respite op7ons • Referrals to palliaFve
care, hospice
SPEECH THERAPY • Assessment of communicaFon difficul7es
• Develop home exercise program for language s7mula7on,
• Ini7ate basic caregiver training including principles of errorless learning,
• Basic external memory aids such as day planner, alarms and pill box
• Referrals to and develop Augmenta7ve/Alterna7ve CommunicaFon systems (memory book, use of photo books)
• Caregiver training on supported conversa7on
• Modify home exercise program as needed
• Further caregiver educaFon on supported conversa7on
• Use of forced choice or wriden choice to improve basic communica7on
• Occasionally assess swallowing func7on,
• Recommend alternate means of nutri7on/hydra7on
OCCUPATIONAL THERAPY
• Assess levels of independence & abiliFes
• Caregiver educaFon • Home exercise program • Safety prepara7on • Equipment educa7on
• Maximize par7cipa7on in ADLs through compensaFon and adaptaFons
• Train caregivers • Encourage par7cipa7on
in community-‐based programs designed for people with cogni7ve loss.
• Maintain abili7es to par7cipate in ADLs with caregiver support and training
• Educate family/caregiver regarding safety concerns,
• Emphasize rouFne regarding fitness and social engagements.
Person & Family with ADRD
Neuropsychology
Neurology Psychiatry
Primary Care Provider
Diagnostic Evaluation Team
Person & Family
with ADRD Speech-‐Language
Pathology
Occupa7onal Therapy
Physical Therapy
Nursing
Social Work
Neuropsychology
Neurology
Psychiatry
Primary Care Provider
Expanded Care Team
Person & Family
with ADRD Speech-‐Language
Pathology
Occupa7onal Therapy
Physical Therapy
Nursing
Social Work
Neuropsychology
Neurology
Psychiatry
Primary Care Provider
Expanded Care Team Alzheimer’s Association
AFTD LBDA
Palliative Care /
Hospice
Assisted Living
Elderlaw Attorneys
Nursing Home
Companion Care
Adult Day Services
Support Group /
Individual / Family Therapy
Interven7on Strategies: Memory Care Pathway
• External memory aids • Memory devices, • Environmental modifica7ons
Interven7on Strategies: Language Care Pathway
• Educa7on and communica7on 7ps for family members • Augmenta7ve communica7on methods • Impairment directed interven7ons • Ac7vity/par7cipa7on-‐based interven7ons
Interven7ons Strategies: Visuospa7al Care Pathway
• Modify home environment to accommodate changes • Incorporate use of technology to improve safety and independence
Interven7on Strategies: Behavior Care Pathway
• Maximize safety for person with demen7a who lacks judgment and decision-‐making ability
• Minimize stress of family members involved in their care • Replace confronta7on with alternate responses to behavior changes
Case Vignedes Care-‐D in Ac7on
Darby Morhardt, PhD, LCSW Cogni7ve Neurology and Alzheimer’s Disease Center Northwestern University Feinberg School of Medicine 320 E. Superior, #11-‐465 Chicago, IL 60611 d-‐[email protected] www.brain.northwestern.edu
