Caring for Those Who Cared for Us Vicki L. Schmall, Ph.D.

Professor Emeritus/ Executive Director Gerontology Specialist Aging Concerns Oregon State University West Linn, OR

Aging in Place …

Is this really the best for everyone?

Is independence always best preserved by aging in place?

Is “Aging in Community” a better focus?

An age-friendly home

Rural Support Services?

Modifying a home

Help for Staying “at Home”

Use community services Hire in-home help Modify the home Use assistive devices Housesharing Technology

Staff sensitive to diversity

A Move from home of 25 years … And aging-in-place!

Living Arrangement Decisions

Stay in current home? Move in with family? Retirement Center? Adult care home? Assisted living? Memory care?

Consider safety and functioning

Mental Health & Aging

Too often goes unrecognized in older adults Depression NOT a normal part of aging Significance of isolation

Suicide rates highest Alcohol problems?

Suicide

Alcohol Depression

Many older adults are healthy & active

Herbert

But, Changes ARE Inevitable…

And, the changes experienced in later life have implications

for the Family . . . And for community services!

There are only four kinds of people in the world:

Those who have been caregivers, Those who currently are caregivers, Those who will be caregivers, and Those who will need caregivers. Rosalynn Carter

Tom provided care to his wife, Claudia, for 12+ years

Who are the Family Caregivers?

Grant, 92, caring for wife, 91

The very old caring for spouse . . .

Sons and daughters caring for parents

Son Charles & Pat provide care to Herbert,

age 105

Claire caring for Grandfather Bill, 91

Warren cared for his partner

of 37 years

Providing Support from a Distance

Sabine traveled regularly from Oregon

to Germany

Ella, 78, is the legal parent to her 3 great

grandchildren.

Grandparents caring for Grandchildren . . .

Serial Caregiving

Paulette — late 30s

Paulette, at 69, raising four grandchildren, ages 7 to 14 . . . Husband has a major heart attack

Caregiving is NOT just a woman’s issue!

Each caregiving situation is unique . . .

The Journey of Caregiving

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Family Caregivers...

Are the backbone of long-term care

Essential in effectively helping frail older adults

Are affected by a family member’s illness.

Often become the “hidden patient.”

Research shows...

Caregiving can impact a family member’s life in

many ways!

Impact of Caregiving: Emotional Increase in depression

and anxiety. Associated with: – Role overload – Poor health – Lower life satisfaction

before caregiving – Being an adult child

caregiver Greater use of

psychotropic drugs

Impact of Caregiving: Physical Health

Poorer self-rated health status Aggravation of existing physical health

problems Decrease in immune system function Less likely to engage in preventive health

behaviors High level of psychological stress

associated with negative health outcomes

Impact of Caregiving: Social

Decreased time for other family members

Marital and family conflict

Decreased involvement in leisure, social and personal activities

Increased isolation

Impact of Caregiving:� Financial and Work

Coming to work late Leaving work early Rearranging work schedules Turning down promotions Quitting work or retiring early Taking time off without pay

“If the levels of stress, distress and illness found in caregivers were found in any other “profession,” health agencies and worker’s compensation boards would undoubtedly be waging major prevention campaigns.” —Nancy Guberman

Factors Related to Higher Caregiver Stress

Behavior and emotional problems in care receiver

Caregiver’s appraisal of situation as disruptive

Competing role responsibilities

Poor relationship prior to

caregiving Caregiving is not voluntary Disagreements among

family members Living with the care receiver

National Consensus Conference for Caregiver Assessment

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.

Caregiver assessment should embrace a family-centered perspective, inclusive of the needs and preferences of both the care recipient and family caregiver.

Caregiver assessment should be multi-dimensional in approach and periodically updated.

Caregiving is Stressful . . .

But, it is NOT universally stressful!

Spousal Caregivers Care tends to be more demanding,

more intensive, and more intimate.

Tend to report lower burden than adult children.

More likely to have health problems—3 to 5 chronic illnesses.

Physical demands often stressful.

Least likely to ask for help — Do not identify self as a caregiver.

At greatest risk of social isolation.

Adult Children as Caregivers

Most likely to experience role strain

Juggling multiple roles is negatively associated with caregiver well-being.

Emotional strain associated with… — Daughters—poor quality relationship and work interference — Sons—disruptive behaviors and fewer secondary helpers

Care receivers tend to have gender expectations—”daughters as caregiver.”

LGBT Caregivers

Older LGBT Caregivers

Closeted

Fearful of discrimination, hostility, & intolerance from providers

Reluctant to seek help and services

Reluctant to use LGBT programs

Reticent to disclose sexual orientation/ gender identity

What makes for a Positive Difference in the Caregiving Journey . . .

Having a sense of mastery and control

– Good information – Skill building — Sense of confidence

Having social -emotional support

– Perceived vs. actual support

– Value of support group

What makes a Positive Difference in the Caregiving Journey . . .

Using a direct style of coping, including: – Using help-seeking strategies – Using problem solving – Reframing problems

Finding meaning/rewards in caregiving

Taking breaks – Prevent—not treat—exhaustion – Discretionary—not obligatory—

activities

Programs Supporting Family Caregivers

Information & Referral

Education

Support groups

Respite

Adult day centers

Care management

Dementia caregiving: Impact

2018—Every 65 seconds someone in the US develops Alzheimer’s dementia; 2050—33 seconds.

2018—5.5 million 65+, 200,000 under age 65 2025— 7.1 million 2050—13.8 million

1 in 10 individuals 65+ 65-74 3%

75-84 17% 85+ 32%

(2018 Alzheimer’s Disease Facts and Figures)

Dementia Caregiving is Highly Stressful

Challenging Behaviors Catastrophic reactions Aggressive behavior Paranoia /suspiciousness Accusations of theft Hallucinations and delusions Wandering Sundowning Resistance to bathing Socially inappropriate behavior Repetitive questions

Remember: Everything is less understandable, less manageable, and more frightening to the person as the disease progresses.

A Personal Story . . .

My Parents . . . Grant & Iona

A Move from Home to a Memory Care Facility . . .

Two months later… Dad falls! … It’s related to the beatings from Mom.

Mom’s history was lost to her

Anything Positive About Facility Placement? Focus can be on companionship,

meeting emotional needs

Family relationships may be strengthened

Greater variety of activities

Increased interaction with others

Challenges & Tough Decisions

The “Big 5”

Driving Concerns

If a Family Member has Dementia…

The question is not IF a person should give up driving, but WHEN

Financial: When Problems arise with Managing Finances

Taking Action When Person Lacks Capacity . . .

End-of-Life Care

Message to Caregivers:

Taking care of yourself is the BEST GIFT you can give to the person

who needs your care

Professional messages that can make a positive difference . . .

1. It’s critical to take care of yourself when caregiving. 2. Maintain contact with friends and involvement in outside

activities. 3. You have a right to set limits and to say “NO”. 4. Begin taking breaks early in caregiving — It’s not selfish! 5. Asking for help is a sign of strength. 6. Make caregiving decisions based on needs of everyone

involved, not just the care receiver’s needs and desires. 7. A move to a care facility is NOT the end of a caring

relationship. 8. Focus on what you have done well — and forgive yourself!