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Linda Colozzi lindacolozzi@me.com NEW LIFE FOR ELDERS: Bringing Hope to Families Suffering from the Ravages of Dementia/Alzheimer s Disease. NACC Annual Conference 2016 Chicago, Illinois

Welcome to this day!! New Life..Bringing Hope to Families! Look to this day for it is life, In its brief course lie all The realities and truths of existence, The joy of growth, the glory of action, The splendor of beauty Today well lived makes every Yesterday a memory of happiness And every tomorrow a vision of hope. Look well, therefore, to this day -Ancient Sanskrit Proverb

Alzheimer s Disease IMAGE feeling Phrase Word

QUESTION to ask ourselves.. In life today, where fear reigns free, and the pace of our day to day living runs on the fast track, how do we hold our faith in place when tragedy like Alzheimer s Disease tears open our world?

Three Step Process u I. NEEDS/EXPECTATIONS - assessment u II. PRACTICES - discover the tools needed and use them u III. OUTCOMES - review the results and move forward

Pope Francis The only way for individuals, families, and societies to grow, the only way for the life of peoples to progress, is via that culture of encounter, a culture in which all have something good to give and all can receive something good in return.

FAMILIAR PRAYER

33 Scripture Verses revealing to us not to fear Isaiah 41:10 Matthew 6:34 Psalm 46:1 Psalm 56:3 1 Peter 5:6-7 Psalm 118:6-7 Revelation 1:17 Phillipians 4:6-7 Isaiah 35:4 Proverbs 29:25 Mark 5:36 John 14:27 Luke 12:22-26 Mark 4:39-40 Romans 8:38-39 2 Timothy 1:7 Psalm 27:1 Psalm 34:7 Zephaniah 3:17 1 John 4:18 Psalm 55:22 1 Peter 3:14 Psalm 91:1-16 Psalm 23:4 Mark 6:50 Psalm 34:4 Joshua 1:9 Deuteronomy 31-6 Deuteronomy 3:22

Overarching Goals of Workshop u Able to describe own experiences and emotions with D/AD u Able to identify common themes, tools, emotions and practices used in their experiences with D/AD and with families u Able to analyze a variety of tools, strategies, resources used in effective accompaniment of families suffering with D/AD u Able to develop a hopeful approach for working with families suffering from D/AD

Whole Group Goal Development uwhat do WE want to accomplish by the end of today? u Take responsibility for getting your needs / expectations met today.

Small Group Sharing - Best Practices uwhat TOOLS/RESOURCES/SPIRITUALITIES do you draw upon when you work with people suffering from Dementia/Alzheimer s Disease? usomeone take notes to share with whole group.

There is a Time for EVERYTHING.. Ecclesiastes 3 u There is a time for everything, and a season for every activity under the heavens: u A time to be born and a time to die, u A time to plant and a time to uproot, u A time to kill and a time to heal, u A time to tear down and a time to build u A time to weep and a time to laugh u A time to mourn and a time to dance..

. Reisa Sperling, M.D. Center for Alzheimer Research and Treatment Brigham and Women s Hospital Massachusetts General Hospital Harvard Medical School

Alzheimer s Disease Typically manifests with insidious progression of memory loss and executive dysfunction Eventually affects language, visuospatial, behavior Accounts for 60-70% of all late-life dementia Prevalence increases exponentially by decade

Good News / Bad News BAD NEWS FIRST 1 out of every 9 individuals over 65 has AD! 5.8 million AD patients currently in U.S., increasing exponentially over the next 3 decades Cost estimates - > $$ 203 billion/year Several recent drug trials failed to show benefit GOOD NEWS Multiple new mechanisms starting clinical trials Long preclinical phase of AD to intervene!

Behavioral Symptoms: Common over progression of AD 100 Prevalence (% of patients) 80 60 40 20 0 Social Withdrawal Suicidal Ideation Depression Paranoia Diurnal Rhythm Anxiety Accusatory Mood Change Irritability Agitation Wandering Hallucinations Socially Unacceptable Delusions Sexually Inappropriate Aggression 40 30 20 10 0 10 20 30 Months Before Diagnosis Months After Diagnosis Jost BC, Grossberg GT. J Am Geriatr Soc. 1996;44:1078-1081.

Urgency and Opportunity We have no successful disease-modifying treatments for Alzheimer s disease (yet.) We have been running trials at the late stages of a disease process that begins decade(s) before dementia We have 10,000 baby-boomers turning age 65 every day in the US entering the age of risk We have many challenges ahead but we have an incredible opportunity to inform the field and if we are successful to fundamentally change the paradigm of AD treatment

Encouraging history from other fields Cholesterol Wars in Cardiology Good vs. bad cholesterol Secondary prevention trials in familial hypercholesterolemia and in post-mi Reduction of cholesterol estimated to have reduced cardiac morbidity and mortality by 28% Amyloid does not have to be the cause of AD, merely a critical factor to impact the disease Ultimately will likely need combination therapy (COMBAT trial) to fully prevent AD dementia

Seeing Dementia/Alzheimer s Disease with New Eyes

The Inner & Outer World

Patienthood to Personhood I SEE YOU. I SEE YOUR UNIQUENESS. I SEE OUR COMMON HUMANITY. Oasis 2.0 Susan Wehry,MD 2015

WHO DO YOU SEE???? A person with DEMENTIA A PERSON with dementia Oasis 2.0 Susan Wehry,MD 2015

Caregivers what do they need?? 1. Self-Care 2. Resources 3. Referrals In 2014 alone, over 15 million caregivers provided an estimated 17.9 billion hours of unpaid care to family and friends living with Alzheimer s a contribution valued at $217.7 billion.

Making connections Relationship

Activities that support Encounter Reaching out and connecting Environment conducive to encounter (i.e. arrange chairs) Household tasks that provide purpose Music memory Planned scheduled events Spontaneous activities of sharing

TOOLS to use for self and others Presence Positivity Deep Listening Embrace Change Make an Ally of Difficulties Everyone is right partially! Recognize Grief Discipline (able to learn and change through experience of doing our best) God, Divine principle, Higher Power Commandments Structure Daily Practices Support ask for help Community, friend, professional

Practices/Habits to Develop over time by doing them consistently Spiritual Practices: (name them, list them) Mental/Emotional Practices: Physical GOAL: Spiritual Fitness (Bringing awareness to balancing body, mind, and spirit daily)

Practicing Gratitude I can no other answer make but thanks, and thanks, and ever thanks. -Shakespeare When my heart is overflowing with gratitude, there is no room for FEAR. -Kathy Kendall

When we serve, especially the poor in body, mind or spirit, we empty ourselves and allow love to heal us! The virtues of the infirm are meekness, humility, patience, resignation and gratitude for help received. -St. Elizabeth Ann Seton

WELCOMING (EVERYTHING) PRAYER - All my needs for security, affection and control are met, and I let go of my desire to change anything.

Resources to explore

Facial expression Music smile Touch

Resources Websites Alzheimer s Association National Institute of Health Gratitude quotes Caregiver Action Network Books Catholic Spiritual Practices The Four Things That Matter Most Lasting Words You Can Heal Your Heart

Faith lifts the staggering soul on the one side, Hope supports it on the other Experience says it must be and love says let it be. -St. Elizabeth Ann Seton

SELF-CARE Before you speak of peace, you must first have it in your heart We have been called to heal wounds, to unite what has fallen apart, and to bring home any who have lost their way. -St. Francis

Come then, My Love, come! For see, winter is past, the rains are over and gone, the flowers appear on the earth, and the season of glad songs has come! FAITH, HOPE and LOVE CANTICLES OF CANTICLES 2:11-12 THE MOST IMPORTANT IS LOVE GOD IS LOVE

The Mystery of FAITH The Paschal Mystery Life, Death, and Resurrection Life, Transition, Death, Transition, New Life

Becoming fully human is a life-long journey of faith.. Being patient and kind Not envious or rude BEARS ALL THINGS BELIEVES ALL THINGS ENDURES ALL THINGS Behaves appropriately Seeks the best interests of others Not easily provoked to anger Keeps no account of wrong But rejoices in the truth LOVE NEVER FAILS! Adapted 1 Cor. 13 GOD IS LOVE.....

Allowing the Divine to break through and love us! Oh, when we are sick of ourselves, weakened on all sides, discouraged with repeated relapses, wearied with sin and sorrow, we gently, sweetly lay the whole account at His feet! Merciful Savior! Can there be any comparison to this blessedness? -St. Elizabeth Ann Seton

Joy and Sorrow are the shade and light of life; without light and shade no picture is clear Hazrat Inayat Khan

I can do all things in him who strengthens me. Philippians 4:13

Embracing New Life with Ignatius uscripture-based prayer udaily examen uregular journaling Article by Barbara Lee - Aging with Ignatius; America Magazine 3/28/16

May the God of hope fill you with all joy and peace in believing so that you may abound in hope by the power of the Holy Spirit. ROMANS 15:13

REVIEW Making all things new: New Life for Elders. Co-creation Transformation Resilience Hope