The Caregiving Trap

1. The Caregiving Trap Pamela D. Wilson, CSA, MS, BS/BA, CG

2. Objectives • Identify the effects of caregiving on health, the workplace and retirement • Become more informed about options for care and related costs • Identify caregiving challenges that damage family relationships • Develop talking points to support care discussions and planning

3. Who are the Caregivers? • 4 in 10 Americans are caring for a loved one with significant health issues (Desilver) • Half of family caregivers perform medical/nursing tasks for care recipients with chronic physical conditions or memory loss (Reinhard) • 126 million Americans serve as unpaid caregivers • Caregivers are predominantly female, 66%, average age of 48 (AARP) • Caregiver role averages 4.6 years

4. Why Caregive? • Physical conditions • Old age • Alzheimer’s Disease • Reasons • Marriage – caring for a spouse • “One takes care of family” - family responsibility and duty of adult children • Guilt • There is no one else

5. Risks of Caregiving: Health • Risks to physical and emotional health • Women take on more caregiving tasks, report more care recipient problems and experience more distress due to caregiving than male caregivers(Pinquart) • Other studies indicate that caregivers are at risk for early mortality from heart disease and stroke (Haley)

6. Risks of Caregiving: Health • Caregiver burden – the stress experienced by caregivers resulting in poor physical and mental health and higher levels of anxiety and depression • 40% of caregivers of persons diagnosed with A.D. reported their health as fair or poor (Manion) • Caregivers also face a greater risk of death resulting from the role of caregiving (Heejung) • Dana Reeve died 17 months after Christopher Reeve of stage 4 lung cancer, she was a non smoker

7. Risks of Caregiving: Denial • Caregiver denial • I can do it all • I’m not “that sick” • Borderline diagnoses that are ignored i.e. high blood pressure, diabetes • Fear of discussing concerns with care recipient • Unable to set personal boundaries

8. Risks of Caregiving: Disease • According to The Partnership to Fight Chronic Disease: • 133 million Americans or 45 percent of the population are diagnosed with at least one chronic disease. People with chronic conditions are the most frequent users of health care in the United States, accounting for 81 percent of hospital admissions, 91 percent of all prescriptions filled, and 76 percent of all physician visits.

9. Risks of Caregiving: Workplace • Time commitment: • For a family caregiver working a full time job adding 20 hours a week as a caregiver is like accepting a part time job • Effects on the workplace (de Lissovoy) • “Twenty-one percent of persons with chronic disease take from one to five sick days per year when they don't feel they can give 100 percent; another 27 percent miss six or more days of work each year. Chronic conditions also lead to disability, resulting in limitations to physical activity in one out of every 20 Americans."

10. Risks of Caregiving: Workplace • Oblivion – unable to see the forest through the trees • Individuals in the workplace are oblivious to the negative effects of their work absences or quality of work performance • Absences affect co-workers and supervisors • According to Nationwide Mutual Insurance: • “Only one-third of the workforce is actually sick when they take an unplanned absence. The other two-thirds of the time, they are dealing with personal needs (18 percent), family issues (22 percent), entitlement mentality (13 percent) and stress (13 percent).”

11. Risks of Caregiving: Retirement • The act of caregiving has significant effects on financial well-being. In a study conducted by Evercare, • “Caregivers reported that they had to retire early as a result of caregiving and that this decision not only had an adverse effect on their financial well-being but on the overall quality of life as well. Forty three percent of caregivers reported that the role of caregiving had increased their financial worries.”

12. Risks of Caregiving: Retirement • Risks for women caregivers who choose to reduce work schedules or completely opt out of the workforce are significant • Loss of income • Loss of retirement savings • Re-entry into the workforce at a lower income scale • Increase in overall financial worries • Inability to pay for care when older

13. Risks of Caregiving: Retirement • Involuntary retirement due to health reasons brings loss of important social, occupational, psychological and financial losses that result in further health declines (Hershey) • Loss of identity and/or a spouse results in depression and possible declines in cognitive function

14. Workplace Observations • CHECKING IN… • What is your experience with employees who are family caregivers? • Do you have the support you need to provide assistance? • ?s

15. Sticker Shock: Costs of Care • Day programs $40-70 per day • In home caregivers (non-medical) $20-25 per hour • Assisted living $3-12,000 per month; annual increase 4-6% • Skilled nursing and rehab (nursing homes) - $300-500 per day or $106-178,000 per year • How will YOU pay? • Private savings, long term care insurance, Medicaid?

16. Sticker Shock: Costs of Care • Long term care insurance • Best to purchase as young and as healthy as possible; health diagnoses result in policy “ratings” $$$ • Unable to obtain a policy after a diagnosis of memory loss, Parkinson’s and other similar diseases • Pays for all types and levels of care • Options • Daily benefit • Elimination period • Inflation protection

17. Sticker Shock: Costs of Care • Medicaid – most commonly used programs for care • Home and community based services • Long term care • Qualifications: • Physical ADL assistance: bathing dressing, eating, toileting, transferring, mobility • Memory loss – safety concerns • Financial • $2,000 or less of total assets • Community spouse allowance

18. Workplace Observations • CHECKING IN . . • If retirement and financial planning are discussed - are the financial aspects and risks surrounding caregiving discussed? • Should support be available for women caregivers in the workplace to discuss potential risks of leaving employment – or does this cross a boundary? • ?s

19. The Caregiving Trap:Family Isn’t Perfect • “There is nothing either good or bad but thinking makes it so” – William Shakespeare • It’s no good to get old • Family ties • That one thing • Gaining perspective • Broken promises

20. The Caregiving Trap:Family Isn’t Perfect • Self preservation • Who really pays? • Setting boundaries • Isolation • Hidden lessons • Dying changes everything

21. Workplace Observations • CHECKING IN . . . • Would you feel comfortable leading a caregiver support group? • What other supports might be beneficial for employee caregivers in the workplace? • ?s

22. Memory Loss: All Bets are Off • Individuals experiencing memory loss are unable to self-identify a potential diagnoses: • “You will know what a sore knee or ankle is or something like that but what goes on in your head doesn’t necessarily give you any indication yourself, does it?” George, an individual diagnosed with Alzheimer’s disease attempts to explain that he is aware that he may not be able to assess his own abilities. (Matchwick)

23. Memory Loss: All Bets are Off • Every 67 seconds, someone in the United States is diagnosed with Alzheimer’s Disease • More than 5 million Americans are living with AD • AD is the 6th leading cause of death in the U.S. • 1 in 3 older adults dies with a diagnosis of Alzheimer’s or another dementia • A.D is being diagnosed at younger ages, affecting individuals presently in the workplace Source: Alzheimer’s Association

24. Memory Loss: Signs • When you visit the home, are there piles of mail, newspapers and notes exist everywhere? This may indicate unpaid bills and mismanaged finances. • Is the home dirty? Is there an unidentifiable odor? • Do you see a repairman or handyman constantly coming and going from their home? This may represent financial exploitation. • Have other neighbors or friends expressed concern about an ability to manage day to day?

25. Memory Loss: Signs • Has the individual lost weight or appear to have health issues that are worsening? • Does the individual have hearing loss or poor eyesight and report that others are stealing from them, poisoning their food or performing other difficult to believe activities? • Do you see the individual driving erratically and you worry for their and others safety? • Does the individual wear the same clothing day after day?

26. Memory Loss: Signs • Do you notice that the individual repeats information, asks the same questions, or forgets that you spoke to them about a particular subject? • Is the person becoming paranoid regarding forgotten conversations? • Does the individual appear generally confused about information or conversations? • Is the individual able to speak in complete sentences or only respond in single words?

27. Memory Loss: Signs • Are there medication bottles throughout the home but no system of taking medications? Do the bottles show dates that are months or years old? • Has someone moved into the home to help out, but the situation seems to be getting worse instead of better? This may indicate abuse by a family member or friend. • Does the individual express fear of a family member or friend?

28. Memory Loss: Diagnosing? • To diagnose or not? • Knowing promotes planning • Some prefer not to know or not to disclose information to a family member • The treatment and diagnosis team: • Primary care physician, geriatrician, neurologist, neuropsychologist

29. Workplace Observations • Do company policies exist for employees suspected to be experiencing memory loss? • If an employee discloses concerns about memory loss to you do you have a duty to “disclose”? • ?s

30. Ann’s Story

31. Legal Aspects of Care • It’s never too early to plan ahead • Power of attorney – medical and financial • Living will and/or DNR • Will or trust • Guardian • Conservator • If you still don’t think you need to plan… • David Drummond’s story

32. David Drummond

33. Talking Points for Discussion • How many of you remember the “sex talk” – the “aging talk” is just about as uncomfortable • There are different types of “talks” • Family discussions about concerns and boundaries • Discussions led by a professional to identify options, costs and to develop a plan – much like a meeting with a CPA or a financial planner

34. Ground Rules • The caregiver and care recipient must feel comfortable expressing their concerns and opinions. Opposing opinions and feelings must be acknowledged. While there may not always be agreement, having this conversation opens and allows future discussions relative to planning and “what ifs.”

35. Ground Rules • It is helpful to formulate personal boundaries and to keep these in mind. I recommend that every caregiver give consideration to their personal boundary limit: “When [something specific] happens, I will no longer be able to provide care and other options will require consideration.” Maybe the care recipient has begun wandering out of the home, has become incontinent or is awake all night, preventing the caregiver from sleeping.

36. Ground Rules • Families must be open to discussing aspects of caregiving and end of life situations. Some adult children are very uncomfortable and wish to avoid discussing the declining health and eventual death of a parent. Other children, comfortable with these discussions, may be viewed as insensitive because of a desire to be practical and to make a plan.

37. Ground Rules • Accepting change is a given. All involved must acknowledge that the current situation will change over time and that alternatives must be identified and discussed. Disagreements result from situations where some type of change is beneficial, however family members with opposing opinions or self-interest thwart efforts toward planning.

38. Ground Rules • Include all interested parties. Rather than allowing opposing family members to delay conversations, schedule a meeting and invite them. This provides the opportunity for their participation or to confirm no desire in participating.

39. Professional Discussions: Planning • Professional discussions: • Gain family agreement relative to participation personally or financially • Identify options, costs and develop a plan • Identify a timeline with “back-up” plans

40. The Benefits of Advocacy • The ability of individuals and family members to advocate is critical to ensuring good care and positive outcomes • Those in unfamiliar territory may not know what questions to ask or may accept standard answers • In complicated situations it is best to retain an advocate able to save time, money and frustration • Retaining a care advocate is similar to retaining a CPA, a financial planner or an attorney

41. Summary • Population statistics indicate that caregiving will continue to impact the workplace at an increasing rate • Discussions and programs related to retirement and financial planning must include planning for costs of care and caregiving • Family discussions about caregiving are best implemented early – long before care is needed

42. Summary • Discussions about care and caregiving must become common place -- rather than held behind closed doors or avoided because of fear • There is no escape - we will all age and many of us will need care • Being educated and informed has value in making sure that you or a loved one receives needed and beneficial care

43. Questions • Pamela D. Wilson – The Care Navigator • www.thecarenavigator.com for local support, assessments, solutions and care coordination • www.thecaringgeneration.com for caregiver support and education including: articles, videos and podcasts • www.thecaregivingtrapbook.com – for Pamela’s book coming in 2015 to support family caregivers • Contact Pamela 303-810-1816 or 303-205-7877

44. Sources: • Alzheimer’s Association, 2014 Alzheimer’s Disease Facts and Figures, Alzheimer’s & Dementia, Volume 10, Issue 2. • de Lissovoy, G., Pam, F., Siak, S., Hutchins, V., & Luce, B. (2009). The burden of disease: the economic case for investment in quality improvement and medical progress. Center for Health Economics and Science Policy, Bethesda, MD 8/14/2009. Retrieved from www.unitedbiosource.com • Desilver, Drew. (2013) As population ages, more Americans becoming caregivers. Retrieved 2/15/14 http://www.pewresearch.org/fact-tank/2013/07/18/as-population-ages-more-americans-becoming-caregivers/ • Family caregivers - what they spend, what they sacrifice. (2007). EverCare Study in Collaboration with the National Alliance for Caregiving. Retrieved from http://www.caregiving.org/pdf/research/Evercare_NAC_CaregiverCostStudyFINAL20111907.pdf • Haley, W.E., Roth D. L., Howard, G., & Safford M.M. (2010). Caregiving strain risk estimate for stroke and coronary heart disease among spouse caregivers: Different effects by race and sex. Stroke, 41: 331-336. Doi: 10:1161/STROKEAHA. 109.568279. Epub 2010 Jan 14. • Heejung, K., Chang, M., Rose, K., & Kim S. (2011). Predictors of caregiver burden in caregivers of individuals with dementia. Journal of Advanced Nursing, 68(4), 846-855. doi: 10.1111/j.1365-2648.2011.05787.x • Hershey, D.A., & Henkens, K. (2013). Impact of different types of retirement transitions on perceived satisfaction with life. The Gerontologist, Vol. 34, No. 2 232-244 doi:10:1093/gerontgnt006 • Mannion, E. (2008). Alzheimer’s disease: the psychological and physical effects of the caregiver’s role. Nursing Older People, May, Vol. 20, No 4.

45. Sources: • Matchwick, C., Domone, R., Leroi, I., & Simpson. J. (2013). Perceptions of cause and control in people with Alzheimer’s disease. The Gerontologist, Vol. 54, No. 2, 268-276, doi: 10-1093/geront/gnt014 • Controlling the cost and impact of absenteeism: why businesses should take a closer look at outsourcing absence management. (2010). Nationwide Mutual Insurance Company. Nationwide Better Health 8/2010. • The growing crises of chronic disease in the United States. (2008). Partnership to Fight Chronic Disease. Retrieved from http://www.fightchronicdisease.org/ • Pinquart M. & Sorenson S. (2005). Ethic differences in stressors, resources and psychological outcomes of family caregiving: A meta-analysis. The Gerontologist, 45:90-106. • Reinhard, S.C., Levine, C., & Samis, S. (2012). Home alone: family caregivers providing complex chronic care. AARP Public Policy Institute. October 2012 Retrieved from http://www.aarp.org/home-family/caregiving/info-10-2012/home-alone-family-caregivers-providing-complex-chronic-care.print.html • Reinhard, S.C., Levine, C., & Samis, S. (2012). Home alone: family caregivers providing complex chronic care. AARP Public Policy Institute. October 2012 Retrieved from http://www.aarp.org/home-family/caregiving/info-10-2012/home-alone-family-caregivers-providing-complex-chronic-care.print.html