Caregiver's Burden

Consequences are the result or effect of an action or condition. There’s an adage that says, “You are free to make your choices but you are not free to choose your consequences.”

Likewise, “there are always consequences to your actions. Before you act, make sure you are prepared for them.” Long term care planning is no exception. “The consequences of today are determined by the actions of the past. To change your future, alter your decision today.” What you decide on today regarding your long term care planning will have a great effect on your future.

When someone finds themselves needing long term care, at least one other person will be affected. Even among the most severely disabled older persons living in the community, about two-thirds rely solely on family members and other informal help, often resulting in great strain for the family caregivers.1 Caring for a loved one can come at great emotional, physical, psychological, and financial costs. These costs are even greater when there is no long term care plan in place to assist the family or individual caregiver. When there is no long term care plan, the burden falls squarely and completely on the caregiver. The caregiver we are referring to are family and friends who may not have had formal training in being a caregiver. Providing care seriously impacts the emotional and physical well-being of the caregiver. With shorter hospital stays and increased usage of outpatient procedures, these changes have increased the effectiveness of medical care, while shifting the responsibility from paid providers to unpaid providers of care, again, increasing the burdens of family caregivers.2

Caregiver burden is the stress that is perceived by caregivers due to the home care situation. This subjective burden is one of the most important predictors for negative outcomes of the care situation – for the caregiver themselves as well as for the one who requires care. Research has shown that physical health status between caregivers and non-caregivers were only minimally impaired. The psychological health status was very different. Caregivers reported significantly more depressive symptoms than non-caregivers.

The consequences of being a caregiver are quite evident when observing the health of the caregiver. Elderly informal caregivers run a 63% higher risk of dying from stress-related illnesses.3 Informal caregivers who responded that their health had gotten worse as a result of caregiving most commonly reported a loss of energy and sleep (87%), stress or panic attacks (70%), aches or pain (60%), depression (52%), headaches (41%), and weight gain or loss (38%).4 Some 22% of informal caregivers to the elderly are depressed which is around twice the rate of the population as a whole.5 Studies have shown an increased mortality of caregiving spouses as well. It has even been indicated that informal caregivers spend less time with family and friends (69%) and at work (37%).4

There can be an even greater burden for working caregivers when trying to balance their work schedules and caring for their loved ones. 69% of working caregivers report having to rearrange their work schedule, decrease their hours or take an unpaid leave in order to meet their caregiving responsibilities.6 57% turn down a promotion, 4% chose early retirement and 6% gave up working entirely.7 Caregiving has been shown to reduce work productivity by 18.5% and increase the likelihood of leaving the workplace.8 The increased need for informal caregiving also has accompanying negative financial consequences.

The cost of informal caregiving in terms of lost productivity to US businesses is $17.1 to $33 billion annually. Costs reflects absenteeism ($5.1 billion), shift from full-time to part-time work ($4.8 billion), replacing employees ($6.6 billion), and workday adjustments ($6.3 billion).9 Lost income and benefits over a caregiver’s lifetime is estimated to range from a total of $283,716 for men to $324,044 for women, or an average of $303,880.10 Research suggests that if savings rates are not increased and government programs to assist the elderly are not strengthened, many retirees will face serious problems attaining needed health and long-term care services in the future. By 2030, many retirees will not have enough income and assets to cover basic expenditures or any expenses related to a nursing home stay or services from a home health provider.11

Here are just some statistics surround the burden that long term care plays on the caregiver. It truly is expensive for someone to have that “heart of gold”

Informal and family caregivers make up 29% of the US adult population providing care to someone who is ill, disabled, or aged.12

Caregivers provide care for someone age 50+ and 14.9 million care for someone who has Alzheimer’s or other Dementia.13

Americans have provided unpaid care to an adult age 50 or older in the prior 12 months, and more than 15 million Americans provide unpaid care for people with Alzheimer’s disease and other dementias.14

People (family, friends, and neighbors) provide care to a person (65+) who needs assistance with everyday activities.15

72% of caregivers cared for a parent, step-parent, mother-in-law or father-in-law, and 67% of caregivers provided for someone age 75 or older.16 30% of persons caring for elderly long term care users were themselves aged 65 or over; another 15% were between the ages of 45-54.17 58% of care recipients live in their own homes and 20% live in their caregiver’s home.17 More women than men are caregivers, 60%. 8 in 10 are taking care of one person.18

Male caregivers are less likely to provide personal care, but 24% help a loved one get dressed compared to 28% of female caregivers; 16% of male caregivers help with bathing versus 30% of females; and 40% of male caregivers use paid assistance for a loved one’s personal care. Men represent 43.4% (14.5 million) of caregivers who care for an older family member.19 The gender balance shifts to close to equal participation among 18-49 year old care recipients (47% of caregivers are male), while among the age 50+ recipients, it tips to females (32% male, 68% female)20 Research suggests that the number of male caregivers may be increasing and will continue to do so due to a variety of social demographic factors.21

With the difficulty of predicting the future and when and if you find yourself in a long term care situation, a lot of research has gone into the effects this kind of a situation has on your family and friends around you. The numbers tell a very interesting story of the heavy burden a long term care situation can play on the caregiver. Again, a long term care situation has consequences and it is important that you prepare yourself. Like the adage conveys, “Wisdom consists of the anticipation of consequences.”

Let PNW Insurance Services help you realize and understand some of the potential consequences of long term care and help you change your future for the better with the decision you make today about long term care protection.

1 – Data based on analysis of data from the 1994 and 1995 National Health Interview Surveys on Disability by Health Policy Institute, Georgetown University.

2 – O’Brian, E., and R. Elias. Medicaid and long-term care. Washington, DC: Kaiser Commission on Medicaid and the Uninsure, 2004. http://www.kff.org/mkedicaid/loader.cfm?url=/commonspot/security/getfile.cfm&PageID=36296(link is external)(10 Jan 2004)

3 – R. Schulz, S. Beach, B. Lind, L. Martire, B. Zdaniuk, C. Hirsch, S. Jackson, L. Burton, “Involvement in Caregiving and Adjustment to Death of a Spouse: Findings From the Caregiver Health Effects Study,” JAMA, June 2001; issue 285, pages 3123-3129 http://jama.ama-assn.org/cgi/reprint/285/24/3123.

4 – Evercare Study of Caregivers in Decline, National Association of Caregiving, 2006 http://www.caregiving.org/data/Caregivers%20in%20Decline%20Study-FINAL-lowres.pdf.

5 – End-in-Life Care and the Effects of Bereavement on Family Caregivers of Persons with Dementia, Richard Schulz, Ph.D., Aaron B. Mendelsohn, Ph.D., William E. Haley, Ph.D., Diane Mahoney, Ph.D., Rebecca S. Allen, Ph.D., Song Zhang, M.S., Larry Thompson, Ph.D., and Steven H. Belle, Ph.D., for the Resources for Enhancing Alzheimer’s Caregiver Health (REACH) Investigators, November 13, 2003.

6 – Valuing the Invaluable: 2011 Update: The Economic Value of Family Caregiving. AARP Public Policy Institute.- Updated: November 2012

7 – National Alliance for Caregiving and AARP (2009), Caregiving in the U.S. A Focused Look at Those Caring for Someone Age 50 or Older, Bethesda, MD: National Alliance for Caregiving, Washington, D.C. – Updated: November 2012

8 – Coughlin, J., (2010). Estimating the Impact of Caregiving and Employment on Well-Being. Outcomes & Insights in Health Management, Vol. 2; Issue 1 – Updated: November 2012.

9 – Metlife Study of Working Caregivers and Employer Health Costs: National Alliance for Caregiving. 2010 – Updated: November 2012.

10 – AARP Public Policy Institute (2011) Valuing the Invaluable. http://assets.aarp.org/rgcenter/ppi/ltc/i51-caregiving.pdf(link is external).

11 – VanDerhei, J., and C. Copeland. Can America Afford Tomorrow’s Retirees: Results from the EBRI-ERF retirement security protection model [Issue brief #263]. Washington DC: Employee Benefit Research Institute, 2003.

12 – National Alliance for Caregiving and AARP (2009) Caregiving in the U.S, National Alliance for Caregiving, Washington D.C.

13 – Alzheimer’s Association (2011) Alzheimer’s Disease Facts and Figures, Alzheimer’s and Dementia. Vol. 7, Issue 2.

14 – Alzheimer’s Association, 2015 Alzheimer’s Disease Facts and Figures. Available at http://www.alz.org/facts/downloads/facts_figures_2015.pdf.

15 – Both of these reports used data from 1994 National Long Term Care Survey. The Health and Human Services report also incorporated data from the 1982 National Long Term Care Survey and the Informal Caregiver Supplement to the 1989 National Long Term Care Survey.

16 – Galllup Healthways Wellbeing Survey, Most Caregivers Look After Elderly Parent; Invest a Lot of Time, July 2011 – Updated: November 2012.

17 – National Alliance for Caregiving and AARP (2009), Caregiving in the U.S., A Focused Look at Those Caring for Someone Age 50 or Older, Bethesda, MD: National Alliance for Caregiving, Washington D.C. – Updated: November 2012.

18 – The National Alliance for Caregiving and AARP (2015), Caregiving in the U.S. National Alliance for Caregiving. Washington, D.C.

19 – The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S. National Alliance for Caregiving. Washington, D.C. – Updated October 2012.

20 – The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S. National Alliance for Caregiving. Washington, D.C. – Updated October 2012.