9/5/17. Words Make Worlds! Operationalising Well-Being and Decoding Distress. Framework for Restoring Well-Being. Caution. Personal Transformation

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1 Dementia is a shift in the way a person experiences the world arond her/him. Operationalising Well-Being and Decoding Distress G. Allen Power, MD, FACP Folk med Demens Konference 21 September 2017 Framework for Restoring Well-Being Transformational Models of Care Personal Transformation Cation Positive view of ageing How do yo think abot older people? Abot dementia? Valing relationships Experiential learning abot ageing and dementia Edcation of all Mission, vision, vales Enlightened commnication, facilitation techniqes Words Make Worlds! 1

2 At its Most Basic Level Good Commnication Is Empowerment!!! Physical Transformation Creating living environments that reflect the vales of home, rather than instittions Attention to lighting, color and contrast Attention to acostic environment Intersection of physical design and experience Maximising familiarity, accessibility, wayfinding, comfort and meaning How do we reinforce the sick role?? Lighting Sond How mch light does a person need at age 65? At age 85? Natral light and biorhythms Glare Ambient light vs. targeted light Flooring, colors and patterns Visalisation exercise: What do yo hear? What does a person with dementia hear? Normal sonds: Good or bad? - TV/radio - Voices - Emotions - Msic Other Sensory Challenges Sensations Operationalising Domains of Well-Being: A few simple (and not-so-simple) examples Smell Taste 2

3 Example: Identity Sndowning, Elopement, and natral rhythms and activity patterns Example: Connectedness Dedicated Staff Assignments It Takes A Commnity - A relationship-centred approach to celebrating and spporting old age ( Daniella Greenwood Strategy and Innovation Manager Arcare Aged Care Arcare (cont.) 33 residential care commnities in Victoria, Qeensland, & NSW Some sensitive care areas for people living with dementia Daniella Greenwood (Dementia Strategy and Innovation Manager) appreciative inqiry srvey of 80 elders, staff and family members Identified for main categories, inclding connections Many comments highlighted the importance of continos relationships Began to formlate a pathway for dedicated staff assignments in all areas where people live with dementia Staff edcation sessions Re-application process for all hands-on staff; mst work at least 3 shifts/week with the same 6-8 residents every time Positive feedback from most staff and managers Within 6 weeks, staff spending more time with elders, withot sacrificing task completion One early-adopting commnity (38 residents): - 69% decrease in chest infections - 90% decrease in pressre injries - 100% decrease in formal complaints from families - 45% increase in family satisfaction - Decrease in staff in one area from 48 à 26 - Decrease in avg. day/evening care partners in a month from 28 à 5!! Reslts (cont.) 25% redction in skin tears 12.9% redction in falls 2.92 kg average weight gain 51.6% redction in PRN psychotropic medication se 27.5% redction in sick leave 50.2% redction in staff trnover 19.8% increase in job satisfaction for CNAs 30% increase in job satisfaction for nrses Castle & Anderson, (2011, 2013) Stdy 1: 2839 US residential care homes - Significant decreases in pressre sores, restraints, rinary catheters, and pain in home with >80% dedicated staff Stdy 2: 3941 US residential care homes - Significantly fewer srvey deficiencies in several QOL & QOC categories with >85% dedicated staffing - Follow-p stdy also showed significantly lower trnover and absenteeism in personal spport workers 3

4 Operationalising Well-Being A Few More Examples Preferred name, Evolving and bridging identity, Move-in process (Identity) Knocking, Alarm removal (Secrity) Continal consent (Atonomy) Ritals (Meaning, Growth, and Joy) Opportnities to care and share wisdom, AWA volnteer project (Meaning, Growth) Simple Pleasres (Joy) A Well-Being Approach to Distress Dementia is a condition in which a person s ability to maintain her/his well-being becomes compromised General Approach Medical Adit (not always necessary) Environmental Adit *Experiential Adit* Physical Discomfort Does not have to be de to severe pain or injry May be seen dring personal care or movement, and/or after periods of immobility May be more prevalent later in the day Can see recent falls or signs of injry Untreated pain can be a case of delirim Can be related to medication side effects Can be related to bowel/bladder needs Many people, even with advanced cognitive changes, can still answer when asked abot pain If nable to answer, se an observational scale sch as PAINAD Pain Assessment in Advanced Dementia Scale (PAINAD) Sorce: Warden V, Hrley AC, Volicer, L (2003). Development and psychometric evalation of the Pain assessment in Advanced Dementia (PAINAD) scale. J Am Med Dir Assoc, 4(1),

5 Experiential Adit Distress as nmet needs Life history, job, hobbies, activity patterns Role play, see throgh his / her eyes Look for meaning in behavioral expression Is it a normal response? Whose problem is it? Look at well-being domains Example: Reframing Resistance A qestion for yo If someone were helping yo complete a personal task, what are some things that wold make yo want to resist them? Is Dementia Really the Case of the Person s Actions?? People with dementia become distressed for largely the same reasons that yo and I do! The difference is that they may be less able to: verbalise their feelings and needs, remember the information that helps them feel secre and in control, or cope with stressfl sitations Two Areas to Consider A Well-Being Approach Physical discomfort Threats to well-being 5

6 When yo meet resistance Think first abot the domains of Atonomy and Secrity Secrity People are more likely to resist if they feel insecre, frightened, or threatened. Unfamiliar care staff or locations Being awoken sddenly Not knowing what comes next Being nclothed and/or receiving personal care Being dependent Difficlty comprehending words Nonverbal signals! Atonomy Many people resist when approached to do something They do not wish to do At a time they do not wish At a pace they do not wish With too little explanation of the process With little or no inpt into the process Enhancing Secrity (24/7!) Dedicated staff assignments, especially dring personal care Respecting bondaries (room and personal) Connecting before starting a task Careflly explaining each step of each task Preserving modesty and dignity Body langage Comfort and pleasant srrondings Enhancing Atonomy (24/7!) Doing with, not doing for Continal consent (Greenwood) explain and wait for nderstanding and acceptance with each step Freqent reqests for inpt throghot the task Appropriate pace to enable participation Think SEE : Slow down, Engage, Empower Change times, techniqes, or break p tasks as needed Enhancing Other Well-Being Domains Identity know the person, share stories dring care, se preferred term of address, know personal rhythms and style Connectedness dedicated staff assignments, relationship bilding dring tasks, familiar objects can bring comfort Meaning tie in to past history, ask for inpt and gidance, helping with daily life, project teams, volnteerism Growth relationship-bilding, cltral and civic opportnities, don t infantilise Joy simple pleasres, TLC/spa approaches, stimlate all the senses, se of personalised msic (which helps all seven domains!) 6

7 Filling the Glasses The Key Trn yor backs on the behavior, and find the ramps to well-being! Dementia Beyond Drgs 2-Day training Fll corse (administered by The Eden Alternative) has been taght in 7 contries, to a total of ~3000 people (many half-day and fll-day seminars have been taght as well) What is niqe abot this approach Developed by a physician Uses proactive, strengths-based framework Incorporates cltre change principles necessary to operationalise the philosophy Example 1: Linden Grove Wakesha, Wisconsin, US 33 staff members, 1 board member and 1 Alz. Assn. representative attended Dementia Beyond Drgs 2-day training Smmer 2013 All other staff received 4-hor condensed training from Linden Grove edcators By September 2014 (13-14 months), antipsychotic se dropped 43%: from 20.5% to 11.7% 58% decrease in docmented incidents/episodes of distress All residents alarm-free Increased staff satisfaction Family comments indicate loved one is back Example 2: SAS Care Homes, Arkansas Angie Norman, NP, Arkansas Ageing Initiative, UAMS Approached SAS and asked for 4 homes with highest antipsychotic rates Began to work with staff on enhancing well-being domains for all residents proactively and then shifting systems to spport. In ~6 months, 3 ot of 4 homes had a relative redction of their antipsychotic rate of >60%, and increased staff satisfaction. State reglatory and qality organisations want Angie to replicate the model across the state. Angie: I believe this proactive approach is the key. It has changed my practice! 7

8 Example 3: Windsor Healthcare Commnities Dementia and Hman Rights 10 commnities in northern New Jersey (for-profit, mostly old bildings, many doble rooms, many on Medicaid, nionised staff) Bckingham at Norwood commnity began working with Dementia Beyond Drgs approach sing book in Two-day seminar given to clinical and managerial staff in Jly 2013 Antipsychotic se dropped from 33% in 2012 to 0.6% in 2015 Several commnities also began cltre change edcation concrrently (with Eden gides and with environmental gerontologist Emi Kiyota, PhD) Overall antipsychotic se dropped to 6.1% in homes doing cltre change (vs. 15.1% in non-change homes) UN-CRPD now incldes people with dementia, ratified by 173 members Scotland Charter of Rights for people with Dementia and Their Carers Alzheimer s Astralia Rights Statement Dementia and Hman Rights Same rights as persons with physical or intellectal disabilities Inclde: Dignity, choice, right to medical information, non-discrimination, commnity accessibility and inclsion, choice of hosing, choice of relationships, privacy, recreational and vocational participation, citizenship, workplace accommodations, etc. etc. Dr. Richard Taylor I believe that as people progress with dementia, their hmanity increases. Thank yo! Qestions? DrAlPower@gmail.com 8