rich behers, dmin., bcc, cfhpc - cornerstone hospice · the etymology of the term ‘dementia’ is...
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Rich Behers, DMin., BCC, CFHPC © 2014 All rights reserved. No part of this presentation may be reproduced, scanned or distributed in any printed or electronic
form without permission.
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Objectives
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The etymology of the term ‘dementia’ is Latin and means, “out of one’s mind”. Let’s qualify this:
1. It is an insulting way to describe a soul.2. It is far from the truth.
A. True‐They do not engage us as they once did.B. True‐They do not conform to our standards of
interaction and behavior.C. True‐They are very much here.D. True‐We get to look deep within ourselves and
them, to engage them in their world.
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“The ego leaves quite early. I become what I have always been. It allows me to become quite naughty. I am unstoppable and unbiddable. But they park people like me in a warehouse with other people like me, and it diminishes me. I believe more people die of depression and despair than of dementia.”
LARRY GARDINER (who has a diagnosis of dementia) From a speech at a conference in September 2012
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“The next time you communicate with someone who is not at his or her cognitive best, remind yourself of this: "This interaction is not about me. This interaction is about someone who is seeking connection on terms that may not advance the interests or needs of my ego. I am going to go where your needs are taking you. I am going to be with you in that place, wherever and however it is. I am going to let my ego disappear now. I am going to love you in your image instead of trying to re‐create you in mine."
MICHAEL VERDE, President, Memory Bridge, Chicago, IllinoisQuoted from Love, Loss and Laughter: Seeing Alzheimer's Differentlyby Cathy Greenblat 2012 Lyons Press: Guildford, Connecticut
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Alzheimer’s Disease• Most common form of dementia• Gradual onset/steady decline
Vascular Dementia• Second most common form of dementia• Caused by mini‐strokes
Lewy Body Dementia• Visual hallucinations/visual‐spatial impairment• Roller coaster trajectory of decline
Frontotemporal Lobe Dementia• Occurs in younger people—rapid onset and steep trajectory of decline• Indicators: behavioral issues/inappropriate behavior
Other Dementias
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Projections
By 2050, 11.5‐15 million Americans willhave a dementia‐related condition.* Currently, 24 million people world‐widehave a dementia‐related condition.* By 2040, it is projected that 84 millionpersons will have a dementia‐relatedcondition** National Council of Certified Dementia Practitioners
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Auguste Deter was the first person reported (in 1901) to have the form of dementia now known as Alzheimer's disease.
The disease is named after Alois Alzheimer, the German doctor who first described it.
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When Auguste D. died her brain was examined. The findings indicated several things: 1. The brain was shrunken.2. Clumps of protein were found in
the nerve cells.3. Tangles of fibers were in the
nerve cells.
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1. This is an activity to illustrate what happens to brain neuronsaffected by AD.
2. Instructions: Find a partner. You may stand or sit. Hold your arms up. Hold your fingers close to those of your partner. The space
between your fingers and those of your partner is thesynapse, through which information is transferred.
In AD, a gunky protein forms in the synapse and the “fingers”become tangled. Twist your fingers and imagine the gunkyprotein between the cells.
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7a. Ability to speak limited to approximately a half dozen different words or fewer, in the course of an average day or in the course of an intensive interview.
7b. Speech ability limited to the use of a single intelligible word in an average day or in the course of an interview (the person may repeat the word over and over).
7c. Ambulatory ability lost (cannot walk without personal assistance).
7d. Ability to sit up without assistance lost (e.g., the individual will fall over if there are no lateral rests [arms] on the chair).
7e. Loss of the ability to smile.
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Dementia in all it’s manifestations is not going to goaway.
A one‐hour AD course and even a three‐hour ADcourse are nuts and bolts about the disease.
Many Pastors, Ministers, and Chaplains have notreceived training in the praxis of spiritual care for the dementia patient.
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My experience in talking to Chaplains about providingspiritual care comes down to “I don’t know what to do with him or her.”
Another key question is: Who renders spiritual care to thePrimary Caregiver of the patient?
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1. They can become worn out by the task of caregiving.2. They can run out of patience.3. They fail to practice self‐care.4. Many feel stigmatized.5. They are desperate for “how‐to” answers.
Who is there for them?
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How I developed the concept.• The work of Eileen Shamy• The journey of Robert and Betty Davis
Component parts to the intervention.• Specialty photographs• Music• Aromas• Tactile objects• Affirmations of Personal Worth
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Music and musical memories are embedded inlong term memory Music is associated with both positive andnegative memories. Music evokes memories of people, places, andevents
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Music is fun Rhythm engages the patient, reducinganxiety Music takes the patient to a happy place
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Affirmations of Personal Worth• God loves you.• You matter.• You matter to God.• You matter to me.• You are safe.• You are a child of God.• You are special.• You are special to God.
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Patient: A 90 year old Euro‐American female presenting with FAST Scale 7e
History with Patient: I had an established relationship with the patient.
Location of Pastoral Encounter: Nursing Home
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Religious background of Patient: Christian
Components Selected for the Visit “In the Garden” photos Rose aroma Selected hymns Affirmations
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Patient: A 64 year old Euro‐American male presentingwith FAST Scale 7a
History with Patient: This was my second visit with thepatient.
Location of Pastoral Encounter: Nursing Home
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Religious background of Patient: Unknown
Components Selected for the Visit◦ “Let’s go to the Zoo” photos◦ “Let’s go to Church” photos◦ Selected hymns◦ Affirmations
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Patient: A 84 year old Euro‐American male presentingwith FAST Scale 7e
History with Patient: This was my first visit with thepatient.
Location of Pastoral Encounter: Memory Care Unit
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Religious background of Patient: Catholic
Components Selected for the Visit◦ “American Patriot” photos◦ Military Patch◦ Selected hymns◦ Affirmations
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ArticlesBehaviors Associated with Dementia (2005) This article provides anoverview of cognitive impairment in older adults and suggests interventions that can help providers understand the "behavioral symptoms" of dementia, which are often considered a way of communicating unmet needs. July 2005 http://www.nursingcenter.com/prodev/ce_article.asp?tid=591344Caring for Persons with Alzheimer’s and Other Dementias (2007) Thispublication is designed to help hospices better understand the many challenges in providing quality, person‐centered care to patients with dementia, and their families and caregivers. http://nhpco.org/files/public/Dementia‐Caring‐Guide‐final.pdf
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BooksAldridge, D. (2000) Music Therapy in Dementia Care. JessicaKingsley Publishers.Davis, R. (1989) My Journey Into Alzheimer’s Disease. TyndaleHouse Publishers, Inc.Diagnostic and Statistical Manual of Mental Disorders, 4thEdition, 2000Mace, N.L. and Rabins, P.V. (2011) The 36‐Hour Day: A FamilyGuide to Caring for People Who Have Alzheimer’s Disease, Related Dementias, and Memory Loss. The John’s Hopkins University Press.
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BooksShamy, E. (2003) A Guide to the Spiritual Dimension of Carefor People with Alzheimer’s Disease and Related Dementia: More than Body, Brain, and Breath. Jessica Kingsley Publishers, LTD.Strauss, C. (2001) Talking to Alzheimer’s. New HarbingerPublications.Zeisel, J. (2009) I’m Still Here. Penguin Group.