- Slides: 124
The Hidden Costs of Caring : Compassion Fatigue and Burnout in Healthcare Professionals and Informal Caregivers Erin B. Povse Kennesaw State University- May 2018 erin. [email protected] org
The Hidden Cost of Caring and Caregiving: Compassion Fatigue and Burnout Role overload/ strain vs. Compassion Fatigue vs. Work burnout vs. Long distance caregiver vs. Time for career change vs. Mid-life crisis ? ?
Hidden Costs of Caring and Caregiving Caring and caregiving so prevalent in society today carries both reward and risk We need healthy self-care strategies to avoid or minimize compassion fatigue and burnout “There is a cost to caring” (Figley, 1995) “If the cost of compassion fatigue were fully appreciated, few would want to pay the price” (Kraus, 2005)
Learning Objectives 1. 2. 3. Explain and define terms of compassion fatigue, burnout, and caregiver burden for clarity in OT practice Recognize and identify personal risk factors of compassion fatigue and/or burnout that interfere with work/ life balance Utilize objective and standardized tools for measuring caregiver fatigue, burnout, and caregiver burden with evidence based instruments
Learning Objectives 4. 5. 6. Identify self-care and self-management strategies to alleviate and/or minimize personal or work related stress Discuss and link rising incidence of cognitive impairment/ dementia on a global level with implications for OT practitioners and informal caregivers Introduce the use of the Triple Aim in healthcare and its relationship to healthcare professionals
Learning Objectives 7. 8. 9. Identify resources for Georgia Healthcare Professionals and Informal Caregivers Identify potential new roles for OT practitioners working with persons living with dementia Educate Georgia residents on current state plans/ initiatives for improved diagnosis, treatment and management of persons living with Alzheimer’s and/or related dementias
Compassion Fatigue vs Burnout 4 o years of research / debate Separate terms but interrelated They are not uniformly defined Multiple descriptions of each in literature Controversial in research (Figley, 1995; Aycock & Boyle, 2009; Leland & Armstrong, 2015, Lanier, 2017)
What is Compassion Fatigue?
Compassion Fatigue First described in nursing in 1992 Losing ability to be compassionate or demonstrate empathy Labeled as feelings of anger, inefficacy, apathy, depression Leading to inability to cope with stress of continued caregiving (Figley, 1995)
Compassion Fatigue Expanded to helping professions (first responders, social workers, counselors, therapists) Also including adult children who are Informal Family Caregivers Negative psychological response to cumulative stress Empathy +development of personal relationships with those experiencing personal trauma= compassion fatigue which eventually takes a toll on the caregiver (Aycock & Boyle, 2009; Katopol, 2015; West, 2015)
Compassion Fatigue Described as situations where ethical / moral distress involved in traumatic situations or emergency situations prompting feelings of professional futility May involve family chaos or interfamilial disagreement/ adversity, prompting feelings of helplessness Continued difficult clinical scenarios produces feelings of emotional exhaustion, and pessimism/ cynicism increases (Aycock & Boyle, 2009)
Compassion Fatigue Not a personal “character flaw” A syndrome/emotional response that may develop when a person internalizes the suffering, trauma, and/or pain related to persons that they are taking care of in their work environment, eventually loses the ability to experience satisfaction or joy (personally and professionally) Appears over time, not overnight Little to no self-awareness (Lanier, 2017)
Risk Factors for Compassion Fatigue in OT due to contemporary demands 1. higher caseloads 2. challenging/ complex patients and family members 3. diminishing resources/ insurance/ financial constraints 4. increased documentation requirements 5. growing emphasis on functional outcomes 6. increased productivity standards May lead to emotional exhaustion, stress, job strain, inability to maintain empathy/ therapeutic relationship of trust (Leyland & Armstrong, 2015; Sharma & Clark, 2018)
Signs of Compassion Fatigue Physical: headache, digestive issues, sleep disorders, muscle tension, palpitations, chest pressure Emotional: mood swings, restlessness, irritability, oversensitivity, anger, sarcasm, poor focus, lessened enthusiasm, may lead to depression Social: loss of interest in activities once enjoyed, withdrawal Behavioral: substance abuse, work errors, reduced empathy, avoidance, dread going to work, calling in sick (Aycock & Boyle, 2009; Boyle, 2011; Lanier, 2017)
Five Phases of Compassion Fatigue Zealot- idealistic, ready to serve, contributor, wants to make a difference, volunteer, full of energy/enthusiasm Withdrawal- loses patience with clients, becomes defensive, neglects self, chronic fatigue, views self as victim Irritability- cuts corners, avoids some client contact, mocks peers and clients, downplays own wellness, lapses of concentration occur Zombie- views others as incompetent and/or ignorant, loses sense of humor and zest for life, hopelessness may turn to rage, minimal or no patience Pathology and Victimization (no action taken, may have somatic illness and/or leaves field) OR Maturation and Renewal- takes action and becomes resilient /transformed (Coles, 2017)
What is Burnout?
Burnout Strong attachment/ connection to the concept of work as an occupation In modern society, work began to replace the typical and traditional “community” as source of contentment Accomplishes basic needs as well as deeper psychological needs which can lead to the belief that work is vital and the only way to achieve personal happiness/ independence/ self- confidence/ fulfillment Excessive workload can lead to burnout syndrome (Hakanen & Bakker, 2016; Vlachou et al, 2016)
Burnout Experienced before adequately researched and defined (by Freudenberger in 1974) Feelings of: failure, exhaustion, worn out, overextended, depleted – all due to extreme work demands Defined by Maslach (1982): Multidimensional condition comprised of emotional exhaustion, depersonalization/cynicism, and lack of perceived personal accomplishment (Maslach, 1982)
Burnout Defined by Maslach (1982): Multidimensional condition comprised of: a. Emotional exhaustion (reduction of positive emotions, physical and mental fatigue) b. Depersonalization/cynicism (negative and cynical attitude as a way of mentally escaping the pressure/stress) c. Lack of perceived personal accomplishment (selfevaluation is very negative regarding work behaviors/ professional achievements)
Burnout First described as vague term, now widely accepted as a psychological syndrome and emerging occupational health problem due to chronic stressors Categorized under life-management difficulty in the ICD-10 classification system Affects mental and physical health of employees and productivity of an organization (de. Silva &Fonseka, 2009)
Burnout Six areas of “Work Life” that must balance to avoid developing burnout; enhance the person/ job match a. b. c. d. e. f. workload control rewards community fairness values (Maslach & Leiter, 1995; Ray et al. , 2013)
Burnout Characteristics Risk factors more related to work environment/ work experience, less due to personal characteristics Demands of environment= cutbacks, cost-containment, decreased staffing, excess workload: “do more with less” Environment has inadequate supplies/resources Expectations of the individual and organization are opposite or contrasting values/ mission No work/ life balance (due to cell phone/ email intrusion 24/7) (Bush, 2009; Vlachou, 2016; Lanier, 2017)
Twelve Phases of Burnout Compulsion to prove oneself- perfectionism, worth Working harder - can’t switch off or delegate Neglecting physical/emotional needs – no social interaction Displacement of Conflict - dismisses problems, lacks sleep, misses appointments Revision of values- insensitive, blunt, sacrifices family/friends Denial of Emerging Problem- cynical, aggressive, performance suffers (Copes, 2017)
Twelve Phases of Burnout Withdrawal- minimal or non-existent social life, may turn to substance abuse Obvious behavioral changes- apathetic, paranoid, evades work demands Depersonalization- no perception of own needs, automaton, meaning of life is lost Inner emptiness- exhausted, dejected, may have panic Depression- may be self-destructive Burnout Syndrome- crisis with collapse (Copes, 2017)
Burnout in OT How will we assist our clients? Lack of Work- Life Balance
OT Practice Framework OTPF 3 rd edition Pg. 18
AOTA’s Vision 2025 “Occupational Therapy maximizes health, well-being, and quality of life for all people, populations, and communities through effective solutions that facilitate participation in everyday life” **this includes our clients and ourselves**
Burnout and Emotional Intelligence Relationship between Burnout and Emotional Intelligence in Healthcare Professionals What is Emotional Intelligence A personality characteristic The recognition, understanding, expression, and management of emotions Ability to use this emotional information appropriately to avoid occupational stress and burnout Useful for interpersonal communication / cooperation/ relationships Can be improved with workplace seminars/ programs/ education Positive relationship (higher the EI, higher protection against burnout) to improve quality of rehab services and for QOL of therapists (Vlachou et al. , 2017)
Compassion Fatigue vs Burnout Compassion Fatigue Burnout Response to challenging persons/ personalities Response to difficult work environment and situations Person continues to give but cannot maintain balance between empathy and objectivity (internalizes) Imbalance of demand actual resources Results from compassion and working with /observing/ listening/ experiencing / absorbing pain and trauma over a period of time Evolves gradually when differences between the individual and the expectations of work environment are in conflict (mismatch) Intense emotional exhaustion/ weariness/ strain Extreme work/life imbalance
Compassion Fatigue vs Burnout
Burnout in OT literature First mentioned in OT literature (AJOT) in December 1988 Study in 2003: OT’s working in chronic care more susceptible to burnout Research in 2011: Higher levels of burnout in younger practitioners, those in public sector, fewer than 10 years of experience Survey: AOTA 2016: Moral Distress in OT practitioners Findings: OT practitioners are susceptible to feelings/perceptions of decreased personal accomplishment, decreased sense of competence and effectiveness, and loss of meaning in one’s work especially when patients make very slow gains in function “Burnout develops when the cumulative effects of chronic job stress cannot be managed through active problem solving…failure to cope leads to withdrawing from the work…” (Costa, 2018; Rogers & Dodson, 1988)
Compassion Fatigue and Burnout in OT If mismanaged, may ultimately lead to: Frustration Powerlessness Decreased personal morale Role strain / Role overload with absence of modeling professional behaviors (ie. with FW students) Job conflict: leading to continued disagreement with coworkers/ management Lack of professional engagement ( Leland & Armstrong, 2015; Zeman & Harvison, 2017)
Compassion Fatigue and Burnout, continued Errors on job (documentation and treatment) and taking risks/ decreased safety (presenteeism) Sickness and absenteeism Leads to a diminished work/ life balance and decreased QOL for the healthcare professional Worst case scenarios- decreased patient satisfaction with care, negative client outcomes, employee turnover, and ultimately, may lead to career change ( Leland & Armstrong, 2015; Zeman & Harvison, 2017)
Compassion Fatigue and Burnout Consequences Potentially can effect an entire department/organization: Negative thoughts about clients/ job/ the organization Increased absenteeism/ workers’ compensation claims High staff turnover rates Friction, lack of tolerance, and lack of teamwork between employees/ staff/ management Lack of flexibility/ resistance or reluctance to change Inability of staff to meet deadlines/ complete assigned tasks Added challenges if non-profit (lower wages, lack of space, shifting priorities, turnover of management) (Gamblin &Francz, 2011; West, 2015; Lanier, 2017)
Reflection: Do you have Compassion Fatigue and/ or Burnout?
? Contributing Factor to Compassion Fatigue/ Burnout ? Triple Aim Initiative 3 simultaneous improvements
Triple Aim Healthcare Initiative Introduction in October 2007 by Institute for Healthcare Improvement in Cambridge Massachusetts Initiative designed to help healthcare organizations in three dimensions Improve health of populations Enhancing the patients’ experience of care Reducing costs of care (per capita) What has actually happened? (Bodenheimer & Sinsky, 2014; Lamb & Costa, 2017)
Triple Aim to Quadruple Aim? Triple Aim Framework adopted but not fully attained Healthcare team members/ physicians report dissatisfaction, burnout and stress, impacting ability to achieve the 3 aims Burnout associated with lower patient satisfaction, reduced patient health outcomes and may increase costs Should the Triple Aim be expanded to the Quadruple Aim: goal of improving work life of healthcare providers? (Bodenheimer & Sinsky, 2014; Lamb & Costa, 2017)
Quadruple Aim ? Future Goal ?
USA Healthcare System Changing Traditional focus on Healthcare Professionals Less emphasis, recognition, and praise for the informal family caregiver Due to health care costs significantly rising, shift to noninstitutional settings (home) with non-professional caregivers growing Growing aging population strain on healthcare already unable to cost effectively meet care needs Is this a contributing factor to burnout, CF, and caregiver burden increasing?
Compassion Fatigue, Burnout and Caregiver Burden
Compassion Fatigue/ Burnout vs. Caregiver Burden Due to past focus on direct care workers/ healthcare professionals, less research on caregivers, but growing implications for the QOL of caregiver Even terms used are different (DCW use CF/burnout whereas caregivers use the term of “burden”) The new “normal” is to be a “ family caregiver” : may vary from part-time, full-time or long distance (Alzheimer’s Association statistics, 2018; Hooyman, Kawamoto & Kiyak , 2017)
Caregiver Burden “The physical, emotional, and financial costs associated and perceived with care” Objective burden- daily physical tasks, such as management of problematic behaviors, driving to MD appointments, handling legal and financial issues of recipient Subjective burden- the caregiver’s emotions or feelings experienced- range from guilt, anger, grief, sadness, loneliness to depression (Hooyman, Kawamoto & Kiyak, 2016)
Caregiver Burden Caregivers experience burden in 3 separate areas: 1. Physical and Mental Health- poorer health, increased risk of illnesses (HTN, depression, anxiety), lower physical stamina, sleep disorders, increased mortality 2. Financial- direct costs for medical care, AE/DME, hired extra help, missed days of work, forfeited promotions, quitting jobs, reduced potential retirement benefits 3. Emotional- can be subjective: worry, anxiety, feelings of isolation, disconnection from friends, self- identity solely becomes caregiver, loss of control, giving up hobbies, interests, and/ or social life (Hooyman, Kawamoto & Kiyak, 2016)
Caregiver Burden Stressors create a sense of caregiver burden Primary- events that arise from the illness (examples: behavioral problems or cognitive impairments) Secondary- events that spill over into the caregivers’ life: role strain/ role overload effecting work or friendships, financial losses, deterioration of caregivers’ sense of confidence, loss of self-esteem, or diminished control of situation Amount of burden varies with each caregiver Burden is amplified when caregiving for individuals with various types of dementia (Hooyman, Kawamoto & Kiyak, 2016)
Knowledge Check- True or False? 1. 2. 3. 4. One of the first steps in dealing with compassion fatigue is self-awareness. Burnout is a sense of frustration or tiredness associated with a situation rather than an individual. Those who are experiencing burnout are at greater risk of developing compassion fatigue. Caregiver burden includes the physical, emotional and $$ costs associated and perceived with care.
Objective Measures of Compassion Fatigue, Burnout, Caregiver Burden
Objective Measure of Compassion Fatigue Pro. QOL (Professional Quality of Life scale) Commonly used in research Measures and yields score in 3 areas (high, med, low) a. compassion satisfaction (pleasure in doing job well) b. burnout c. compassion fatigue (secondary traumatic stress) www. proqol. org
Objective Measures of Burnout MBI (Maslach Burnout Inventory) Leading measure for research (cost to use) Measures: emotional exhaustion, depersonalization, and personal accomplishment CBI (Copenhagen Burnout Inventory) New measure for burnout (free on internet) Measures: personal burnout, work-related burnout, and client –related burnout
Objective Measures of Caregiver Burden BSFC (Burden Scale for Family Caregivers) – has original and short form ZBI (Zarit Burden Interview) – has original and short form Turn subjective stress into more concrete, objective measures of burden (none to mild, moderate, severe) Short forms and screening forms created to increase utilization
Activity Please complete one of the scales provided: the Pro. QOL and/ or a Burden Scale Scoring Share results, if desired Questions or concerns?
Self- Care and Self-Management
Self-Care and Self-Management It is ironic that “helpers” perceive themselves as caring, giving, and compassionate, yet find it difficult to integrate self-care into daily lives Defined as survival skills and necessary activities to reduce stress, maintain healthy life-style, and enhance personal well-being Used as a buffer against negative effects of caring and caregiving (Raab, 2014)
Self-Care and Self-Management Strategies Being proactive, identify areas in life where changes could be made to increase overall health and resilience Self-Compassion: three areas to buffer negative effects of burnout a. self-kindness/ self- judgment b. common humanity c. mindfulness (Raab, 2014)
Self-Care and Self-Management We need additional strategies to manage stress
GOTA Retreat Support Group/ Fun/ Learning/ Mentoring/ Socialization
Self-Care and Self-Management Strategies meditation/ visualization/ relaxation/ mindfulness/ selfreflection/ phone applications (Calm, Provider Resilience, etc. )/ deep breathing exercises healthy eating/ good nutrition/ exercise/ yoga adequate sleep hygiene/ improved sleep habits setting boundaries at work/ set limits to work hours/ less tech use journaling/ creative writing/ leisure activities/ hobbies/ music/ gratitude journal spirituals/ faith/ religion (Boyle, 2014; Bush, 2009; Gamblin, 2011; Katapol, 2015)
Self-Care and Self-Management Strategies, continued counseling/ support groups/ social support/ retreat vacation/ flexible work schedules/ work-life balance / changes in personal/ professional/ organizational arena develop a personal mission statement as a guide/ set personal, professional goals limit exposure to additional trauma (i. e. current events/ news/ TV/ social media) (Boyle, 2014; Bush, 2009; Gamblin, 2011; Katapol, 2015; Lamb & Costa, 2017)
Self-Care and Self-Management Strategies, continued Reflect and focus on your life priorities Less importance on the “small stuff”
Work/ Life/ Sleep Balance Personally reflect on your typical 24 hour day (? ) a. 8 hours for work b. 8 hours for personal/ family time c. 8 hours for sleep
Reflective Exercises to Improve Self-Care Ponder/ Reflect/ Be mindful of / Journal : A. Items that have been helpful at work to serve as coping strategies to lessen stress B. Think about positive moments when you were happy/ successful as an OT practitioner/ OT student/ why you entered this profession C. Identify at least one goal to improve in personal life, professional goals, in your work routine D. Examine your life wheel – where are your stressors? (Costa, 2018; Davis, 2018)
Work- Life Balance Worksheet
Activity Work Life Wheel Complete the Work- Life Balance Wheel Worksheet Visual depiction of current level of satisfaction in all areas of life Center of the wheel is a “zero” (unsatisfied) Outside edge of the wheel is a “ten” (satisfied) Rate your satisfaction from 0 -10 and place an X in the line, that corresponds with a number between zero and 10 Connect the X’s – observe the shape of your “wheel” Do you have a misshapen/unbalanced wheel or a wheel that demonstrates that life is full of balance? (Activity from workshop: Beating Burnout in the Healthcare Setting- online from Vyne Education)
Work Life Wheel- examples
Occupational Therapy Living life to its fullest- practice what you preach!
The Importance of Self-Care and Self-Management Strategies
Why the heavy emphasis on these topics in research? Why are we repeatedly discussing compassion fatigue, burnout, caregiver burden, and the importance of using self-care strategies to alleviate stress? What could be a possible explanation?
Awareness of Need for Dementia Capable Society One possible explanation for the emerging explosion of burnout/ compassion fatigue/ caregiver burden is the increase in numbers of those living with types of dementia The “aging of the baby boomers” or “Silver Tsunami” is now reality and a serious public health concern Each year, Alzheimer’s dementia and other dementias affect older adults/ families/ communities as well as government spending/ insurance concerns (www. alz. org)
Vocabulary/ Terms Recognition CF- Compassion Fatigue Burnout CB- Caregiver Burden DCW- Direct Care Worker or professional in healthcare (paid worker) Informal Caregiver (unpaid) usually family or friends Dementia – an umbrella term describing symptoms affecting memory or thinking skills reducing a person’s ability to perform everyday activities
Vocabulary: Neurocognitive Disorders (NCD) vs Dementia The term NCD (Neurocognitive Disorders) was introduced by DSM 5 - the Diagnostic and Statistical Manual of Mental Disorders - version 5 in 2013 and replaced “dementia” with Major NCD and Minor NCD (depending on symptoms) NCD includes the many types of dementia and other disorders involving cognitive impairment affecting: memory, attention, learning, language, perception, and social cognition Alzheimer’s Disease ranks the highest cases of NCD (AOTA, 2017; Smallfield, 2017)
Vocabulary: Neurocognitive Disorders vs Dementia The American Psychological Association (APA) recognizes that the term dementia is not going to be replaced by NCD by many “non health care professionals” The Alzheimer’s Association is not using the NCD terminology and will continue to use “dementia” The terms Major and Minor NCD may only be used by healthcare professionals
Alzheimer’s Disease= unrecognized health epidemic These numbers are astounding and overwhelming In USA, one new case of dementia every 65 seconds (2018) Globally, one new case of dementia every 3 seconds (2018) In USA, currently 5. 7 million cases (2018) Globally, currently 50 million cases (2018) 1 in 3 older adults dies with AD or other dementia (more than breast and prostate cancer combined) In Georgia, currently 140 K with Alzheimer's Disease
Additional Dementia Statistics Future Projections: in USA, in 2050 : 13. 8 million cases Future Projections: globally, in 2050 : 131. 5 million cases If global dementia care was a country, 18 th largest economy ($818 billion), greater than Apple =$742 billion, Google=$368 billion (Forbes 2015 ranking) USA: We spend $1 of every $5 Medicare dollars on the diseasefuture implications of the system looming (Alzheimer’s Association statistics 2018; World Alzheimer Report, ADI, 2017)
Additional Dementia Statistics If you are not typically treating a person living with dementia… just wait…coming soon… be ready Statistics of OT practitioners (2017) 50% of OTR’s and 65% of OTA’s are treating clients living with NCD/ dementia (Smallfield, 2017)
Healthy Brain Initiative Fall 2005, the CDC and the Alzheimer’s Association formed a partnership with the primary aim to “maintain or improve the cognitive performance of all adults” To assist with this endeavor, the National Institute on Aging and the Administration on Aging joined The Healthy Brain Initiative: A National Public Health Road Map to Maintaining Cognitive Health (www. alz. org)
Healthy Brain Initiative Goals of HBI Road Map- represents a call to action and guide for implementing an effective and coordinated approach to moving cognitive health into public health practice 1 st HBI Road Map (2006 to 2011) 2 nd HBI Road Map (2013 to 2018) 3 rd HBI Road Map (*2018 -2023) *(arriving in October 2018) (www. alz. org)
Awareness of Need for Dementia Capable Society NAPA- National Alzheimer’s Project Act – national strategic plan to address Alzheimer’s Disease at the federal level Law passed in January 2011 Goals: 1. Prevent and effectively treat Alzheimer’s by 2025 2. Enhance care quality and efficiency 3. Expand supports for people with Alzheimer’s and their families 4. Enhance public awareness and engagement 5. Track progress and drive improvement (www. aspe. hhs. gov)
World Alzheimer Report 2016 World Alzheimer Report ADI (London)
Current and Projected Costs of Caregiving Direct costs to American society in 2018 for those caring for those with Alzheimer’s =$277 billion (including $186 billion from Medicare/ Medicaid) Projected Cost in 2050 (to more than $1. 1 trillion) Current approximate lifetime cost of caring for an individual with dementia = $341, 840 (2018) Direct economic value provided by all informal caregivers (unpaid family/friends) = $470 billion (Hooyman, Kawamoto, Kiyak, 2016; www. alz. org)
Who is a Caregiver ?
Who are Caregivers? Current Caregiver Statistics Termed the “shadow workforce” due to lack of support and recognition 1 in 3 are over age 65; two- thirds are women, ¼ are “sandwich generation” caregivers; 1/3 are daughters, providing assistance with ADL/ IADL, banking, meds, etc. , some are grandparents caring for grandchildren Caregiver assistance= 83% are unpaid informal family members = 16 million family members and friends (2018) 18. 4 billion hours of care valued at $232 billion dollars of unpaid work (2018) Twice as many caregivers indicate substantial emotional, financial, physical difficulties /hardship due to this role (Alzheimer’s Association statistics 2018; World Alzheimer Report, ADI, 2017)
Caregiver Awarenessgrowing trend in research/ data
Compassion Fatigue in Caregivers Research Adult daughters (in USA) caring for parents with dementia are at risk of CF (4 themes from data) 1. 2. 3. 4. uncertainty doubt attachment strain ( Day, et al. , 2014)
Compassion Fatigue in Caregivers Research Adult caregivers for parents with dementia (5 themes from data) that demonstrate risk of CF (Brazil) 1. lack of knowledge of dementia 2. dichotomy of emotions (anger vs guilt) 3. caregiver workload 4. difficulties of dementia: physical symptoms/ behaviors 5. self-care strategies for coping (Martins de Araujo et al, 2017)
Compassion Fatigue in Caregivers Research Impact of Caring for persons with dementia (Japan) Caregivers more likely to be female, older, married/partnered, frequent etoh drinkers, smokers, exercisers, less likely to be employed Experienced more depression, insomnia, anxiety, HTN, pain, DM, and overall role overload Employed caregivers had more presenteeism and absenteeism, more visits to ED, MD, and hospital (Goren et al. , 2016)
Caregiver Resilience and QOL
Informal Caregiver Crisis Caregivers (of those caring for persons with dementia) show similar characteristics in research in USA, South America, Japan, and Europe In spite of differences in culture, language and healthcare – the same crisis is emerging Caregiving is a growing occupation, across the globe Caregiver burden increases with stages of dementia/ NCD (Koca et al. , 2017)
How can we prepare ?
What Can State of Georgia do? Caregiver Education “There are only four types of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers”. Rosalynn Carter (www. rosalynncarter. org)
Caregiver Training /Resources in Georgia Rosalynn Carter Institute for Caregiving Partner for caregiver advocacy, education, research, support, and service with Georgia Southwestern State University in Americus Various methods for education regarding caregiving issues for both caregivers and professionals
Resources for Caregivers Family Caregiver Alliance, National Center on Caregiving (www. caregiver. org) Daily Caring (www. dailycaring. com) National Alliance for Caregiving (www. caregiving. org) Area Agencies on Aging (www. aging. georgia. gov) Alzheimer’s Association (www. alz. org) Caregiver support groups, online resources, message boards, videos, education, advice, workshops Rosalynn Carter Institute for Caregiving (www. rosalynncarter. org) AARP (www. aarp. org) AOTA (www. aota. org) Caregivers toolkit
Compassion Fatigue in Caregivers What can we do in OT to improve the future for caregivers using a collaborative approach? Identification of CF/ Caregivers Education/ Family training on CF/ burden/ dementia Provide support and resources Use self-assessment tools (burden scales) Ask /educate on self-care and self-management strategies Increased home OT services will be required Additional research to advocate for OT
Expanding / Emerging Roles of Occupational Therapy Be aware of the upcoming dementia crisis and expand knowledge base Attend more evidence based continuing education on intervention/ treatment for individuals living with dementia Provide more training to caregivers to decrease burden and decrease overall stress levels Lecture at local support groups/ educational programs Instruct more on ADL education/ compensatory techniques: show our distinct value of OT Provide more resources/ handouts/ educational materials Partner with universities for research projects Take advantage of any opportunities/avenues to become a “dementia care specialist” What will you do to be a change agent ready for the future?
AJOT : September/October 2017 entire issue dedicated to NCD
AOTA Practice Guidelines Series: Alzheimer’s Disease and Related NCD
Georgia Preparedness for Growth of Persons Living with Dementia
Georgia Initiatives Georgia Department of Human Services, Division of Aging Services (www. aging. georgia. gov) Vision Living Longer, Living Safely, Living Well Mission The Division of Aging supports the larger goals of DHS by assisting older individuals, at-risk adults, persons with disabilities and their families and caregivers to achieve safe, healthy, independent, and self-reliant lives
Georgia Initiatives GA Department of Human Services (www. aging. georgia. gov) Division of Aging Services: 3 areas: A. B. C. Home and Community Based Services (Medicaid and non-Medicaid Funded) Report Elder Abuse Online Area Agencies on Aging (12 across the state)
Aging and Disability Resource Connection (ADRC)
Georgia State Plan Georgia Initiatives: 1. 2. 3. 4. 5. State plan on Aging State plan on Alzheimer’s Disease** (GARD) State plan on Senior Hunger Information Management Georgia Alzheimer’s Project ** (GAP)
GARD (Georgia Alzheimer’s and Related Dementias) State Plan In 2013, the Georgia General Assembly created the GARD Task Force- asked to create a state Alzheimer’s state plan In 2014, the Task Force became an Advisory Council and ADRD (Alzheimer’s Disease and Related Dementias) registry established and workgroups/goals and state plan created to create a more dementia-capable Georgia
GARD (Georgia Alzheimer’s and Related Dementia)
GARD Collaborative Work Groups (2016) 1. 2. 3. Workforce development -increase/ improve dementia capability of workforce, develop education/ training and improve retention Service Delivery -train and promote personcentered care models, improve access to high quality dementia services Public Safety -ensure safety of persons with dementia who are at-risk for abuse, neglect, exploitation and reduce rates of injury
GARD Collaborative Work Groups (2016) 4. 5. 6. Outreach and Partnerships -raise public awareness and educate public about “dementia and dementiafriendliness” via partnerships and resources Policy -assess statutory, regulatory, and state funding environment as related to Alzheimer’s and make necessary recommendations to individuals living with dementia Healthcare, Research & Data Collection -ensure early and accurate diagnosis of dementia, recognize as chronic disease, improve care and outcomes
GARD Collaborative: Competency Guide for Dementia Care DCW Workforce Development
GARD Collaborative If you are interested in learning more about the GARD State Plan effort, goals, objectives, and/ or want to become involved Contact GARD Coordinator: Victoria Helmly Victoria. [email protected] ga. gov (www. aging. georgia. gov)
Georgia Initiatives Georgia Department of Human Services /Georgia Alzheimer’s Project (GAP) created the Georgia Memory Net Purpose: statewide program for early diagnosis and treatment for individuals with Alzheimer’s disease and related disorders/ dementia. The Georgia Memory Net will establish 5 Memory Assessment Centers (MACs) with $4 million in state funds
Georgia Memory Net 3 goals of Georgia Memory Net 1. Improve primary care clinicians’ screening and care of Georgians with memory loss via Medicare-supported annual wellness visit model (AWV) 2. Establish MACs (Memory Assessment Clinics) around the state to improve access to early and accurate diagnosis of Alzheimer’s disease and related disorders to improve care 3. Support the GAP’s oversight, coordinate ongoing evaluation of project, and direct data collection to ADRD registry in GA Department of Public Health
Memory Assessment Centers MACs planned for 2018 to 2019
Georgia Memory Net 5 Memory Assessment Centers 1. 2. 3. 4. 5. Medical College of GA at Augusta University Medical College of GA affiliates in Albany (Phoebe Putney) Mercer University School of Medicine- Macon Mercer University affiliates at Columbus Regional Medical Center Morehouse School of Medicine at Grady Hospital in Atlanta
Georgia Memory Net Implementation Plan Emory University (Atlanta) is primary implementing partner for the project in providing clinical workflow model for GA Memory Net DHS and Division of Aging (DAS) oversee development and serve to keep GA General Assembly apprised of progress and fiscal responsibility GARD Collaborative will partner closely with GA Memory Net on all efforts and advocacy (www. gamemorynet. org)
Georgia Memory Net Implementation Plan Key partnerships include AAA (Area Agencies on Aging), ADRC (Aging and Disabilities Resource Connection), Alzheimer’s Association (GA), RCI (Rosalynn Carter Institute for Caregiving) Emory University Alzheimer’s Disease Research Center will provide training, funding, and ongoing evaluation PCPs allowed to make referrals to MAC Each MAC will not provide ongoing care, only connect individuals/families with local community resources (www. gamemorynet. org)
Knowledge Check: True or False 1. The state of Georgia is preparing for the aging of its population, including the older adults who will be living with varied forms of dementia. 2. My place of employment is preparing for the aging population, including the older adults who will be living with varied forms of dementia. 3. I am ready (as an OT practitioner or caregiver or both) and prepared for the aging population, including the older adults who will be living with dementia.
Wellness, QOL, and Prevention
Summary: International Crisis and Health Epidemic Alzheimer’s Disease – major public health issue with actual and projected costs of future global impact not fully recognized or acknowledged. ADI recommends that research needs to be prioritized higher, intensified, and must include balance between: prevention, treatment, care, and cure. (ADI, Alzheimer’s Disease International, World Report 2016) “Since there is no treatment option to heal Alzheimer’s or stop its progress, the goal is to improve and support the quality of life in patients, their families, and their caregivers as much as possible…” (Koca et al, 2017)
Occupational Therapy to the Rescue Let us make sure that OT practitioners are doing our part by showing our distinct value and contribution to this ongoing crisis and be a part of the solution Let us address and minimize: compassion fatigue/ burnout/ caregiver burden in DCW’s and caregivers and ourselves
Summary: The Cost of Caring: Strive for Work/Life Balance, QOL and Happiness – for DCW or Caregiver or Both
Thank you for attending! Questions? ? ?
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References Costa, D. (2018). Better Days at Work: Identifying, Preventing Burnout in OT Practice, April 9 th, p 9 -15. Day, J. R. , Anderson, R. A. , & Davis, L. L. (2014) Compassion Fatigue in Adult Daughter Caregivers of a Parent with Dementia. Issues in Mental Health Nursing, 35, 796 -804. doi: 10. 3109/01612840. 2014. 917133 Davin, Kirsten (2017). Beating Burnout in the Healthcare Setting. From online course: Vyne Education (www. vyne. com). Figley, C. (1995). Compassion Fatigue: Coping with Secondary Traumatic Stress Disorder in Those who Treat the Traumatized. (pp. 1 -2). New York: Brunner/Mazel. Gamblin, K. , & Francz, S. (2011). Compassion Fatigue: When Caring Takes Its Toll. Oncology Nursing News, 1 -3. Retrieved from: http: //www. oncnursingnews. com/publications/oncology-nurse/2011/september 2011/compassion-fatigue-when-caring-takes-its-toll. Graessel, E. , Berth, H. , Lichte, T. , & Grau, H. (2014). Subjective Caregiver Burden: Validity of the 10 -item Short Version of the Burden Scale for Family Caregivers BSFC-s. BMC Geriatrics, 14, 1 -20. doi: 10. 1186/1471 -2318 -14 -23
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References Lanier, J. (2017). Running on Empty: Compassion Fatigue in Nurses and Non-Professional Caregivers. Retrieved from: https: //www. nursingald. com/uploads/publication/pdf/1586/Indiana_Bulletin_17. pdf Martins de Araujo, C. M. , Machado Vieira, D. C. , Barbosa Teles, M. A. , Lima, E. R. , & Freitas Oliveira, K. C. (2017). The Repercussions of Alzheimer’s Disease on the Caregiver’s Life. Journal of Nursing UFPE Online, 11, 534 -541. Professional Quality of Life Scale (Pro. QOL). (2009). Retrieved from http: //www. proqol. org/links. html Raab, K. (2014). Mindfulness, Self-Compassion, and Empathy Among Health Care Professionals: A Review of the Literature. Journal of Health Care Chaplaincy, 20, 95 -108. Ray, S. L. , Wong, C. , White, D. , & Heaslip, K. (2013). Compassion Satisfaction, Compassion Fatigue, Work Life Conditions, and Burnout Among Frontline Mental Health Professionals. Traumatology, 19, 255 -267. doi: 10. 1177/1534765612471144 Sharma, K. & Clark, A. (2018). Empathy Matters: The Importance of Imagination in Occupational Therapy. OT Practice, April 23, p. 18 -20.
References Short Form Zarit Burden Interview (n. d). Retrieved from https: //c. ymcdn. com/sites/aahch. site-ym. com/resource/resmgr/frontiers/ZBI 12_Form. pdf Short Version of the Burden Scale for Family Caregivers in 20 European Languages (2003 -2017). Retrieved from http: //www. virtualhospice. ca/en_US/Main+Site+Navigation/Home/For+Profe ssionals/For+Professionals/Tools+for+Practice/Assessment+tools/Burden. Six Pillars of a Healthy Lifestyle. (2018). Retrieved from http: //www. helpguide. org Smallfield, S. (2017). Supporting Adults with Alzheimer’s Disease and Related NCD and Their Caregivers: Effective OT Interventions. AJOT, 71, 1 -4 Stamm, B. H. (2010). The Concise Pro. QOL Manual. Retrieved from http: //www. proqol. org
References Sweetman, M. (2017). Emotional Intelligence for Therapists. Rehab Management Product Directory, Fall, p. 34 -40. Vlachou, E. M. , Damigos, D. , Lyrakos, G. , Chanopoulos, K. , Kosmidis, G. , & Karavis, M. (2016). The Relationship between Burnout Syndrome and Emotional Intelligence in Healthcare Professionals. Health Science Journal, 10, 1 -9. West, A. (2015). Associations among Attachment Style, Burnout, and Compassion Fatigue in Health and Human Service Workers: A Systematic Review. Journal of Human Behavior in the Social Environment, 25, 571 -590. doi: 10. 1080/10911359. 2014. 988321 World Alzheimer Report 2015: The Global Impact of Dementia (2015, October). Retrieved from http: //www. alz. co. uk/worldreport 2015 Zeman, E, & Harvison, N. (2017). Burnout, Stress, and Compassion Fatigue in OT Practice and Education: A Call for Mindful, Self-Care Protocols. National Academy of Medicine, March 24, p. 1 -4.