CAREGIVERS and CAREGIVER STRESS AND BURDEN
Overview of Caregiving
MAUREEN DEVER-BUMBA, MSN, FNP-C, DRPH(C) CAROL WATERS, MSW, LISW-CP PH/USC SCHOOL OF MEDICINE
Alzheimer’s disease and Dementia
What is Caregiving
Caregiving takes many forms Helping older, chronically ill or disabled family member and friends in everyday ways Many of these helpers do not think of themselves as caregivers:
The State of Caregiving
Buying
groceries, cooking, cleaning house, doing the laundry Spending time making plans to help someone (e.g making MD appts., driving to the doctor, re-ordering meds, coordinating care) Helping someone to get dressed, take a shower or give medicines
The State of Caregiving
An estimated 10.9 million family members and friends provide unpaid care for a person with Alzheimer’s disease or another dementia dementia. Providing
12.5 billion hours of care, representing an average of 21.9 hours per week. 21% of caregivers live in the same household as the person for whom they provide care
29 % of households in the US provide care to an elderly person in a 12-month period 73 % of workers report that they are currently providing p g or have recently yp provided care to someone over 18
62 % report having to rearrange work schedules, decrease their hours or had to take leave
The State of Caregiving
The value of those services provided by informal caregivers (family or friends of seriously ill loved ones) is estimated at $375 billion annually which is more than the total Medicaid spending in 2007
Who are the Caregivers?
Partner / spouse Adult child Parent Other relative (e.g. sibling) Friend Anyone who provides care (e.g. shopping, personal care, medical management, etc.)
Long Distance Caregivers
15% are long distance caregivers Live an hour or more away from family member Out-of-pocket expenses for long-distance caregivers are nearly twice as local caregivers
Self Identity
If family members do not know they are “caregivers,” then they do not know to look for resources—or that they have things to learn and adapt Professionals are in the position of helping family members identify
Who are the Family Caregivers? 62% of caregivers are women 23% 65 or older Greater proportion of Caucasian caregivers assist a parent than other races (54% vs vs. 38%) On average, Hispanic and African American caregivers spend more time caregiving (30 hours a week vs. 20 hours)
Self Identity as Caregiver
Recognize family caregivers and name what they do as being a “caregiver” Family / friends think of themselves in terms of relationships p ((e.g. g spouse p /p partner,, adult child rather than as a caregiver)
Caregiver roles
classified into a hierarchy according to who
takes on the bulk of responsibilities (Primary) only intermittent supportive assistance (Secondary)
Family caregiving activities include assistance with day-to-day activities illness-related care care management and invisible aspects of care.
Factors Impacting Caregiver Experience Difference in caregiving experience: May be attributed to type and extent of assistance that caregivers provides Relationship with person with dementia Spouse provide the most comprehensive care Maintain this role for longer periods of time Spend the most hours per week caregiving
Factors Impacting Caregiving Experience
Socio-demographic characteristics Gender Relationship to patient Culture Race Ethnicity
Caregiver stress and Caregiver burden
Caregiver Stress
What is Caregiver Burden?
Caregiver Stress The physical and mental strain and stressors associated with caregiving
Multidimensional response to the negative appraisal and perceived stress resulting from taking care of an ill individual
Impacts p Roles: Social Relational Occupational
Threatens the physical, psychological, emotional and functional health of caregivers
Causes of Stress and Burden
Daily assistance with ADL’s (more of an issue if caregiver has own health issues) Advocate for their care recipient with government agencies g g and service p providers Arrange and supervise paid caregivers from community agencies Managing neuropsychiatric symptoms and severe behavioral problems
Causes of Stress and Burden
Provide overall management of “getting through the day” Communicating with other family members about care p plans and decision-making g Addressing family issues related to caring for a family member with dementia
Family Conflict
Health and Caregiving
Cause of Family Conflict: Caregiving situation itself Long-standing unresolved family issues Primary caregiver needs help from other family members As cognitive impairment increases, caregivers view the family as more conflicted and less adaptable
Warning Signs of Caregiver Burnout
Excessive stress or tension Debilitating Depression Persistent anxiety, anger or guilt Extreme irritability or anger with patient Decreased overall life satisfaction Lower immunity and greater need for healthcare Excessive use of medications or alcohol
75% of caregivers of family member with dementia report they were “somewhat” to “very concerned” about maintaining their own health since becoming a caregiver
Physical Health and Caregiving Factors that are linked to caregiver’s health are: Behavioral problems Level of cognitive impairment Functional disabilities Duration and amount of care provided Vigilance demands Caregiver feelings of distress and depression
Mental Health and Caregiving
Greater degree of depression and stress Low rating of subjective well-being Perception of how much patient is suffering Patient experiencing emotional and existential distress are significantly associated with caregiver depression and use of antidepressant medications
Increases Caregiver Burden
Caregiver’s perception of the severity of symptoms Change in the intimacy of the marital p partnership p Other family dynamics (disharmony) Alter past relationship and develop new one based upon new role as caregiver Lack of support
Parameters of Assessment Assessment of Caregiver Burden
Caregiver context
Caregiver relationship to care recipient Caregiver roles and responsibilities Physical environment (home, facility) Financial status Potential resources that caregiver could choose to use Family's cultural background Employment status Duration of caregiving
Caregiver context Caregiver's perception of health and functional status of care recipient Caregiver preparedness for caregiving Quality of family relationships Indicators of problems with quality of care Caregiver’s physical and mental-health status Resources to support the caregiver
Caregiver's perception of CR
Activities care receiver needs help with; include both ADL and IADL Presence of cognitive impairment and any behavioral problems p Presence of mobility
Caregiver preparedness for caregiving
Does caregiver have the skills, abilities, knowledge to provide care recipient with needed care? Care-provision p requirements q ((skills,, abilities,, knowledge) Caregiving confidence and competencies Appropriate knowledge of medical care tasks (wound care, etc.)
Indicators of problems with quality of care
Unhealthy environment Inappropriate management of finances Lack of respect for older adult
Quality of family relationships/ Values and Preferences
Caregiver’s physical and mentalhealth status
Consequences of Caregiving
Perceived challenges Social isolation Work strain Emotional and physical health strain Financial strain Family relationship strain Difficulties with formal providers
The caregiver's perception of the quality of the relationship with the care receiver Caregiver/care recipient willingness to assume/accept p care Perceived filial obligation to provide care Culturally based norms Preferences for scheduling and delivery of care and services
Self-rated health assessment Health conditions and symptoms Life satisfaction/quality of life Rewards of caregiving Self care activities
Consequences of Caregiving
Perceived benefits Satisfaction of helping family member Developing new skills and competencies Improved family relationships
Resources to support the caregiver
Helping network and perceived social support Existing or potential strengths (e.g., what is presently going well) Coping strategies Financial resources (health care and service benefits, entitlements such as Veteran’s Affairs, Medicare) Community resources and services (caregiver support programs, religious organizations, volunteer agencies)
When do we assess? Initial information as early as possible Reassess Often as needed With situational changes Check-in
How and Where Should Caregiver Assessments Be Conducted
It should always be clear to the caregiver when an assessment is taking place.
Frame it as “I’d like to help”
Interventions to Improve Caregiver Outcomes Psycho-education
Management of caregiver burden
Disease and disease progression Importance of being proactive and planning Development of coping strategies and skills Knowledge of resources and services
Interventions: Self Care Self Care Family caregivers are less likely than noncaregivers to practice preventive healthcare and self-care behavior Sleep deprivation Postponement or failure to schedule medical appointments Poor eating habits Failure to exercise Failure to stay in bed when ill
Interventions: Self Care
Take responsibility for your own care Identify personal barriers Misperception of impact of stress Reframe negative g self talk – reframe with positive Reduce personal stress: perception of stress Eat healthy
Interventions for Caregivers: Managing Stress
Interventions for Caregivers
Set Goals Take breaks – respite Exercise Engage in activities that are healthy and enjoyable Ask for help Accept help
Interventions
Social Support Caregivers who belong to a supportive social network may perceive their situations as less stressful or burdensome because of the emotional, tangible, and informational support that a network of support can provide
Support Group Peer or professionally led Provide safe place to discuss problems and concerns Disseminates helpful information Social network (Satisfaction with support groups tends to be high)
Interventions
Support
Counseling Individual Counseling More effective in influencing psychological outcomes
Group counseling More effective in enhancing social support
Community Based Supportive Services Adult Day Care In home Caregivers Meals on Wheels VA Alzheimer’s Association Respite Grants
Role of Respite
Questions?
Respite Provides caregivers with a temporary rest from caregiving while the person with dementia continues to be receive care in a safe environment Using respite can support and strengthen the caregiver’s ability to provide care
References and Sources
Providing End of Life Care in Dementia PPT by Jones and Drummond Treatment Options in Advanced Dementia PPT by D. Doberman Dementia Care Practice Recommendations for Assisted Living Residences and Nursing Homes Phase 3 End-of-Life Care (Alzheimer’s Association) Caregiver Assessment: Principles, Principles Guidelines AND Strategies FOR Change vol 1: National Consensus Development Conference PRACTICAL SKILLS TRAINING FOR FAMILY CAREGIVERS: Family Caregiver Alliance Schempp, D. Caregiving 101: Exploring the Complexities of Family Caregiving- Family Caregiver Alliance Dupuis, S. et al. (2004) Caregiving of Persons with Dementia: Roles, Experiences, Supports and Coping
References and Sources
References and Sources
Dementia Care Central: Care for Caregivers: Dealing with Stress, Finding Support http://www.dementiacarecentral.com/print/book/export/html/580 (accessed July 31, 2013). Etters, L., Goodall, D., Harrison, B., (2008). Caregiver Burden Among Dementia Patient Caregivers: A Review of the Literature, y of Nurse Practitioners, 20, 423Journal of the American Academy 428. Family Caregiver Alliance: Caregiving http://www.caregiver.org/caregiver/jsp/print_friendly.jsp?nodeid=231 3 (accessed August 29, 2013). Family Caregiver Alliance: Fact Sheet: Taking Care of YOU: SelfCare for Family Caregivers http://www.caregiver.org/caregiver/jsp/print_friendly.jsp?nodeid=847 (accessed August 29, 2013).
Alzheimer’s Association: 2013 Alzheimer’s Disease Facts and Figures (Chicago: Alzheimer’s Association, 2009). Alzheimer’s Association: Alzheimer’s Facts and Figures http://www.alz.org/alzheimers_disease_facts_and_figures.asp (accessed August 16, 2013). Alzheimer’s Association: Dementia Care Practice Recommendations for Professional Working in a Home Setting (Chicago: Alzheimer’s Association, 2009). Alzheimer’s Association: Respite Care http://www.alz.org/care/alzheimers-dementia-caregiver-respite.asp (accessed August 30, 2013). Connell, C., Janevic, M., Gallant, M., (2001). The Costs of Caring: Impact of Dementia on Family Caregivers, Journal of Geriatric Psychiatry and Neurology, 2001, 179-187. David W. Coon, Dolores Gallagher-Thompson and Larry W. Thompson, Innovative Interventions to Reduce Caregiver Distress (New York: Springer Publishing Company, LLC, 2003).
References and Sources
Family Caregiver Alliance: Fundamental Principles for Caregiver Assessment http://www.caregiver.org/caregiver/jsp/content_ node.jsp?nodeid=1715 (accessed August 29, 2013).
Family Caregiver Alliance: What Should a Family Caregiver Assessment Include? http://www.caregiver.org/caregiver/j sp/content node jsp?nodeid=1709 (accessed August 29 sp/content_node.jsp?nodeid=1709 29, 2013) 2013).
Family Caregiver Alliance: Who Are Family Caregivers? http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=17 11 (accessed August 29, 2013).
Family Caregiver Alliance: Why Are Family Caregivers Vital to Health Care and Long-Term Care Today? http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=17 04 (accessed August 29, 2013).
References and Sources
HELPGUIDE.org: Caregiving Support & Help http://www.helpguide.org/elder/caring_for_caregivers.htm (accessed August 29, 2013).
HELPGUIDE.org: Stress Management http://www.helpguide.org/mental/stress_management_relief_coping.ht m (accessed August 19 19, 2013) 2013).
HELPGUIDE.org: Support for Alzheimer’s and Dementia Caregivers http://www.helpguide.org/elder/alzheimers_disease_dementia_support _caregiver.htm (accessed August 29, 2013).
http://www.alz.org/facts (accessed August 29, 2013).
Joanne Koenig Coste, Learning to Speak Alzheimer’s (New York: Houghton Mifflin Company, 2003).
Kim, H., Chang, M., Rose, K., Kim, S., (2011) Predictors of Caregiver Burden in Caregivers of Individuals with Dementia, Journal of Advanced Nursing, June, 846-855.
References and Sources
Legacy Health System, The Caregiver Helpbook (Portland: Legacy Health System, 2006).
Li, H., Edwards, D., and Morrow-Howell, N., (2004) Informat Caregiving Networks and Use of Formal Services by Inner-City African American Elderly With Dementia, Families in Society, 55-62.
Schultz, S h lt R. R and d Sherwood, Sh d P., P Physical Ph i l and dM Mental t lH Health lth Eff Effects t off Family Caregiving, American Journal of Nursing, 108:9, 23-27.
Family Caregiver Alliance: Why Should We Assess the Needs of Family Caregivers? http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=170 6 (accessed August 29, 2013).
Gary A. Martin and Marwan N. Sabbagh, Palliative Care for Advanced Alzheimer’s and Dementia (New York: Springer Publishing Company, LLC, 2011).
