the caregiver 15% care for someone aged 50+ with main …...resources: books on caregiving the...

The Caregiver Journey

“When one is sick, two need help”

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Slide 2 The Caregiver Journey

Today’s family caregivers...

Provide 80% of all long term care

43.5 million (18+) care for adults 50+

61% help ill or disabled adults aged 50+ with activities of daily living

15% care for someone aged 50+ with main diagnosis of dementia; 30% as secondary dx

28% are spousal caregivers (adults age 18+ caring for husband, wife, partner age 50+)

Will increase by 85% by the year 2050

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SPOUSAL CAREGIVERS...

– After a diagnosis or injury, 80% of marriages break up

– Estimate: 6-8 million caring long-term for a husband, wife or partner

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Family caregivers provide $350 billion

dollars of care a year – for “free”

Paid home healthcare -- $32 billion

Nursing home services -- $92 billion

Care for Alzheimer’s patients costs

families approximately $23,436

The cost of care...

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Higher mortality rate

Depression in 30-59% of family

caregivers

Increased risk for chronic

conditions such as coronary heart

disease, cancer, and diabetes

The physical & emotional toll on caregivers...

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Acute Illness

Injury or Accidents

Chronic Illness

When Illness and/or Disability Strike...

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Shock

Denial/Minimization

Emotional Overdrive

Life is put on hold to deal with crisis

Impact of the Initial Diagnosis –The Acute Emotions

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Sadness, grief, depression

Dread

Anger, anxiety

Guilt

Loneliness, isolation

Impact of the Initial Diagnosis –The Chronic Emotions

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The Heroic Stage

The Ambivalence Stage

The “New Normal”

Three Stages –

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Productive panic

Active research

Optimism

Hope Fades

The Heroic Stage

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Conflicting feelings

Cycles: Anger, guilt, anger

Exhaustion

Powerlessness

The Ambivalence Stage

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Coming to terms

Finding purpose

Achieving resilience

Defining goals and

commitments

The “New Normal” Stage

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TRANSITIONS

*The caregiver journey is not a steady progression

from one stage to the next. It is not uncommon to

go back and forth between stages.

*Many caregivers never achieve a “new normal.”

And those who do may transition back to the

ambivalence stage from time to time.


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Take time for yourself (respite)

Ask for and accept help

Seek counseling

Consider medical treatment for depression and anxiety

Join a support group

Consult a financial planner or eldercare attorney

Develop greater self-awareness

Renew your spiritual or religious beliefs

Eat right, exercise, and sleep

Tips for Creating a “New Normal”...

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Slide 15

The Well Spouse Association is an international non-

profit membership organization which provides

support to the individuals caring for chronically ill or

disabled partners.


1-800-838-0879

[email protected]

www.wellspouse.org

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www.wellspouse.org

Mainstay Newsletter

Support groups

Respite weekends

National Conference

Online Forum for Well Spouses

Mentorship program

“Round Robin” letter writing groups

Membership in the Well Spouse Association

includes:

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Resources:Well Spouse Association:

www.wellspouse.org

Administration on Aging:

http://www.aoa.gov

Social Security Administration:

www.ssa.gov

Medicare:

http://www.medicare.gov

Medicaid:

http://www.cms.hhs.gov/home/medicaid.asp

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Resources:National Family Caregiver’s Association:

www.nfcacares.org

A.O.A. National Family Caregiver

Support Program Resource Room:www.aoa.gov/prof/aoaprog/caregiver/caregiver.asp

A.O.A. National Eldercare Locator:www.eldercare.gov

National Alliance for Caregiving:www.caregiving.org

Family Caregiver Alliance: www.caregiver.org

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Resources: Books on Caregiving

The Emotional Survival Guide for Caregiversby Barry J. Jacobs, PsyD

Mainstayby Maggie Strong

The Chronic Illness Experienceby Cheri Register

Love, Honor, & Valueby Suzanne Mintz

The Anatomy of Hope:

How People Prevail in the Face of Illnessby Jerome Groopman

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Resources: Books on Coping with Grief, Death & Dying

Life Lessons

by Elisabeth Kubler-Ross

Living with Grief When Illness is Prolongedby Kenneth J. Doka

Dying Well

by Ira Byock, MD

Final Gifts

by Maggie Callanan

Safe Passage: Words to Help the Grievingby Molly Fumia

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Slide 21

References:Alzheimer’s Association, Alzheimer’s Caregiving in the United States. Chicago, Illinois: National Alliance

for Caregiving, 2004.

Arno, Peter S. “Economic Value of Informal Caregiving,” presented at the American Association of

Geriatric Psychiatry, February 24, 2002.

Beach, Schulz R., Sr. “ Caregiving as a Risk factor for Mortality: The Caregiver Health Effects Study.”

JAMA; 282(23): 2215- 2219. 1999.

Beilin, Marty. Well Spouse Association Mainstay Newsletter. Spring 2006: “The Caregiver Journey.”

Cannuscio, C.C. et al.”Reverberations of Family illness: A Longitudinal Assessment of Informal

Caregiving and Mental Health Status in the Nurse’s Health Study.” American Journal of Public Health,

(92) 1305-1311. 2002.

Cohen, D, et al. “Caring for Relatives with Alzheimer’s Disease: The Mental Heath Risks to Spouses,

Adult Children, and Other Family Caregivers.” Behavior Health, and Aging, (1) , 171-182. 1990.

Harrow, B.S. et al. “Variation in Cost of Informal Caregiving and Formal Service use for People with

Alzheimer’s Disease.” American Journal of Alzheimer’s Disease and Other Dementias. 19:299-308, 2004

Health and Human Services. “Informal Caregiving: Compassion in Action.”Washington, DC: Department

of Health and Human Services. Based on data from the National Survey of Families and Households,

(NSFH), 1998.

Health and Human Services and Assistant Secretary for Panning and Evaluation. “The Future Supply of

Long-Term Care Workers in Relation to the Aging Baby-Boom Generation.” Report to Congress.

Washington, D.C, 2003.


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