The Caregiving Trap

Pamela D. Wilson, CSA, MS, BS/BA, CG

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

Objectives

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

Who are the Caregivers?

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

Why Caregive?

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)

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

Risks of Caregiving: Health

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

Risks of Caregiving: Denial

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.

Risks of Caregiving: Disease

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."

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).”

Risks of Caregiving: Workplace

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.”

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

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

Risks of Caregiving: Retirement

CHECKING IN… What is your experience with employees who

are family caregivers? Do you have the support you need to provide

assistance? ?s

Workplace Observations

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?

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

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

Sticker Shock: Costs of Care

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

Workplace Observations

“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

The Caregiving Trap:Family Isn’t Perfect

Self preservation Who really pays? Setting boundaries Isolation Hidden lessons Dying changes everything

The Caregiving Trap:Family Isn’t Perfect

CHECKING IN . . . Would you feel comfortable leading a

caregiver support group? What other supports might be beneficial for

employee caregivers in the workplace? ?s

Workplace Observations

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)

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 workplaceSource: Alzheimer’s Association

Memory Loss: All Bets are Off

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?

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?

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?

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?

Memory Loss: Signs

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

Memory Loss: Diagnosing?

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

Workplace Observations

Ann’s Story

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

Legal Aspects of Care

David Drummond

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

Talking Points for Discussion

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.”

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.

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.

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.

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.

Ground Rules

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

Professional Discussions: Planning

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

The Benefits of Advocacy

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

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

Summary

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

Questions

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.

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

Sources: