Caring for the Caregiver Tools to Combat Caregiver
Caring for the Caregiver: Tools to Combat Caregiver Stress A. Ildiko Martonffy, M. D. Family Medicine Midwest October 5, 2013
No disclosures
Objectives • The learner will be able to: ▫ Describe the prevalence and impact of caregiver stress and care giving burden in our society ▫ List warning signs of caregiver stress ▫ Identify and use tools to assess caregiver impact ▫ Identify resources to help caregivers prevent and alleviate the effects of caregiver stress
Definitions is broadly defined as a friend or relative who provides unpaid assistance to a person with a chronic or disabling condition. (Colins)
• Care Recipient – an adult with a chronic illness or disabling condition or an older person who needs ongoing assistance with everyday tasks to function on a daily basis • Caregiver Assessment – a systematic process of gathering information that describes a caregiving situation and identifies the particular problems, needs, resources and strengths of the family caregiver • Activities of Daily Living (ADLs) – everyday tasks related to personal care usually performed for oneself in the course of a normal day, including bathing, dressing, grooming, eating, walking, taking medications, and other personal care activities • Instrumental Activities of Daily Living (IADLs) – activities related to independent living, such as preparing meals, managing money, shopping for groceries or personal items, performing light or heavy housework, and using a telephone
Extent of care giving in USA Almost 1/3 of US households report at least one person providing unpaid care to another (nonminor) member of the family ~ 66 million Perspective - prevalence of: All depressive disorders ~ 23% in primary care DM II ~ 10% in US adults Hypertension ~ 24% http: //dx. doi. org/10. 1016/0163 -8343(94)90006 -X, http: //care. diabetesjournals. org/content/29/6/1263. full. pdf+html, http: //hyper. ahajournals. org/content/25/3/305. short
Who are Family Caregivers? • Women outnumber men – 2: 1 ratio • Most are middle-aged (35 -64 years old) and married or living with a partner. • Most (83%) are relatives of the person they are caring for, including: daughters/sons, spouses, grandchildren, and siblings. • About half of caregivers are employed at full-time jobs • The amount of care given on a weekly basis varies widely, from fewer than 8 hours (by nearly half) to more than 40 hours (by 1 in 5). • Caregiving goes on for a long time—an average of 4. 3 years.
Impact of Caregiving • 80% of adults who need long term care live in the community • Unpaid family caregivers provide 90% of their care • This care provides $375 billion in cost savings nationwide. • Demand is expected to rise ~ aging population, shorter hospital stays
Impact of caregiving • Video: http: //www. caregiverstress. com/stress-management/family-caregiver-stress/caregiving -stories-video-series/
What about their own health? • 1/4 women caregivers report health problems as a result of their caregiving activities. • Higher levels of depressive symptoms and mental health problems than their noncaregiving peers - 20% to 50% with depressive disorders or symptoms • 2/3 need help to find care for themselves, to balance work and family responsibilities and to manage emotional and physical stress
Importance of Assessing Needs • Caregiver strain and health risks can impede the caregiver’s ability to provide care, lead to higher health care costs, and affect the quality of life for caregivers and those for whom they care • Caregivers who have their needs assessed feel acknowledged, valued, and better understood by practitioners • If the physical, emotional and financial strains on family caregivers become too great, care in the home may be seriously jeopardized • Identifying service needs and unresolved problems is fundamental to a plan that supports and strengthens the family as a whole, where most care is given and received From http: //www. caregiver. org/caregiver/jsp/content_node. jsp? nodeid=1706
What are our goals? (Assessment is not an end point) • Identify caregiver and approach issues from her/his perspective • Improve caregivers’ understanding of their role and what they need to know to carry out tasks • Give practitioners information to develop a care plan with measurable outcomes for caregivers “help inform, guide or contribute to making professional judgments about the appropriate course of action for an individual” ~ Family Caregiver Alliance, 2002
We need to know about: • Background on the caregiver and the caregiving situation • Caregiver’s perception of health and functional status of the care recipient • Caregiver’s values and preferences with respect to everyday living and care provision • Health and well-being of the caregiver • Consequences of caregiving on the caregiver • Care-provision requirements (skills, abilities, knowledge) • Resources to support the caregiver
Screening vs. Assessment Screening – a short rapid review with caregivers that identifies those at risk, leading to an opportunity for a full assessment for those wishing to proceed • Who? Social workers, case managers, nurses, physicians, rehab specialists • How? Direct observation, clinical interview and questionnaires • When? As early as possible! And reassess every 3 -6 months • Why? Self referral, referral from member of care team, new diagnosis, decreased functional status of caregiver or care recipient, new patient, complaint from care recipient, care transitions, caregiver workplace issues • Where? Include home visit if able – may need respite
Fundamental Principles for Caregiver Assessment From The National Consensus Development Conference for Caregiver Assessment • 1. Because family caregivers are a core part of health care and long-term care, it is important to recognize, respect, assess and address their needs. • 2. Caregiver assessment should embrace a familycentered perspective, inclusive of the needs and preferences of both the care recipient and the family caregiver. • 3. Caregiver assessment should result in a care plan (developed collaboratively with the caregiver), that indicates the provision of services and intended measurable outcomes.
• 4. Caregiver assessment should be multidimensional in approach and periodically updated. • 5. Caregiver assessment should reflect culturally competent practice. • 6. Effective caregiver assessment requires assessors to have specialized knowledge and skills. Practitioners and service providers’ education and training should equip them with an understanding of the caregiving process and its impacts, as well as the benefits and elements of an effective caregiver assessment. • 7. Government and other third-party payers should recognize and pay for caregiver assessment as a part of care for older people and adults with disabilities.
Limitations • Obtaining funding and reimbursement for caregiver assessment (some states have publicly funded programs) • Using computer applications, such as a uniform tracking system, to streamline or ease the assessment process • Finding appropriate ways to connect the assessments of the care recipient and caregiver to eliminate duplication yet protect privacy and autonomy http: //www. caregiver. org/caregiver/jsp/content_node. jsp? nodeid=1717
What would you want in an assessment tool?
Common elements in assessment tools (1) type and frequency of current care provision (2) caregiver’s ability to continue with care (3) additional responsibilities or stressors affecting care provision (4) informal support (5) formal services required (6) caregiver’s overall health status.
Sometimes Neglected Components Assessment of: • actual tasks performed by family caregivers beyond personal care functions (i. e. , ADLs and IADLs) • skills necessary to provide care • quality of care provided • values and preferences of the care recipient and the caregiver • positive aspects of caregiving
Tools • AMA Caregiver self-assessment: ▫ http: //www. ama-assn. org/resources/doc/public-health/caregiver_english. pdf • Zarit interview – 22 item: ▫ http: //www. rgpc. ca/best/Gii. C%20 Resources/Gii. C/pdfs/3%20 Caregiver%20 Supp ort%20 -%20 The%20 Zarit%20 Burden%20 Interview. pdf • Movement toward assessing stresses as well as strengths and skills
What are some … preventative techniques aimed at minimizing caregiver stress? barriers to self care and barriers to asking for help in the care giving role? unexpected challenges encountered in the caregiver role? in-the-moment techniques to use when stressed in the care giving role?
Now what? We’ve identified some stressors and barriers. How can we help?
First, Care for Yourself
Prevention Sleep, eat (well), move, connect. 2002 study showed caregivers who practiced more health-promoting self-care behaviors were better protected from stress, and the effects of stress on well-being were reduced “The loss of 25% of explained variance in wellbeing by stress was due to the mediational effect of health promoting self-care behavior. ” ~ Acton
Barriers Time – schedule self care time Money – resources for help Guilt Pride – ask for help openly Priorities – “crisis mode” Fatigue/Inertia Lack of awareness of resources One’s own health limitations
Unexpected Challenges Resentment/anger Social isolation Financial burden – very common theme*** Legal issues Stress on relationships – loss of role, identity*** Feeling like only they can “do it right” But also unexpected positives – sense of purpose which then when lost can compound grief
Techniques Meditation Practicing gratitude Humor Positive self talk Set attainable goals with action steps Identify problems, list possible solutions http: //www. caregiver. org/caregiver/jsp/content_node. jsp? nodeid=847
Thoughts? Questions?
References • 1. Colins LG, Swartz K. Caregiver Care. Am Fam Physician. 2011 Jun 1; 83(11): 1309 -1317 • 2. Caregivers Count Toolkit. Accessed November 2, 2012 http: //www. caregiver. org/caregiver/jsp/content_node. jsp? nodeid=1695. • 3. UW Integrative Medicine Sleep Handout. Accessed November 2, 2012 http: //www. fammed. wisc. edu/sites/default/files//webfmuploads/documents/outreach/im/handout_sleep. pdf • 4. UW Integrative Medicine Meditation Handout. Accessed November 2, 2012 http: //www. fammed. wisc. edu/sites/default/files//webfmuploads/documents/outreach/im/module_meditation_patient. pdf • 5. UW Integrative Medicine Journaling Handout. Accessed November 2, 2012 http: //www. fammed. wisc. edu/sites/default/files//webfmuploads/documents/outreach/im/handout_journaling. pdf • 6. How to Take the Stress out of Caregiving. Accessed November 2, 2012 http: //betterkidcare. psu. edu/Angel. Units/Two. Hour/Take. Stress. Out. Wk. Bk. pdf • 7. Caregiver Assessment Tool Grid. Accessed August 6, 2013 http: //www. dementiacoalition. org/pdfs/ca_grid. pdf • 8. Caregiver Stress. com. Accessed August 6, 2013 http: //www. caregiverstress. com/stressmanagement/family-caregiver-stress/ • 9. Acton GJ. Health-Promoting Self-Care in Family Caregivers. West J Nurs Res 2002 24: 73. • 10. Aneshensel CS, Pearlin LI, Mullan JT, Zarit SH, Whitlatch CJ. Profiles in caregiving: The unexpected career. San Diego, CA, US: Academic Press. (1995).
- Slides: 30