Overview of AD and Models of

Caregiving Ministry

ByKaren Robinson, PhD, PMHCNS-BC,

FAANProfessor, ULSON

Definition of Family Caregiving

“Extraordinary care involving significant expenditure of time and energy often for months or years, requiring the performance of tasks that may be physically demanding and unpleasant “

(Schulz, 2001)

Statistics about Dementia

AD effects approximately 4.5 million Americans

Number effected has doubled since 1980

Estimates by year 2050, 11.3 million effected

Average person lives 8-10 years with the disease, but some live as long as 20 years

Demographic and Social Trends

7 of 10 persons live at home Family caregivers provide 75% of care

More people growing older

More people “dying longer”

Smaller families

Working women

Mobility – caregiving at a distance

Spouse Caregivers

Older-Advanced Age Poor Physical Health At Risk for Increased Mortality Sometimes die before PWD

Types of Care ProvidedInstrumental

Activities of Daily Living (98%): meals,transportation, shopping, housework

Activities of Daily Living (51%): dressing, bathing, toileting, mobility

Medication management (23%)

Dementia: Types LOTs of variability

in presentation! Within specific types . . . BETWEEN types . . .

Overlapping syndromes are common Dementia AND delirium Mixed dementia

Types

Effects on CaregiversLess time for

other family/leisure

Suffer from mental health/emotional stress problems

Physical health/ strain problems

Financial hardships

Work-related adjustments (e.g. fewer hours, schedule changes, less demanding jobs) “opportunity costs”

Stages of Dementia

Early - Forgetful Middle - Confused Later - Ambulatory Terminal -

Endstage

Spiritual Support

Persons with Dementia have Long Term Memory

Sing old songs Repeat old prayers Enjoy the presence of a joyful spirit Try not to offer sermons Group is stronger than individual

interaction

Familiar Hymns and Passages of Scripture

Amazing Grace Blessed Assurance In the Garden Jesus Loves Me Old Rugged Cross What a Friend We Have in Jesus

Scripture Passages

Genesis 1:1-2 John 3:16Psalm 23Proverbs 3: 5-6John 3:3 Romans 6:23

Emotional Support

Get the person’s attention before you speak

Make person feel like a VIP Help the person maintain as much of

“themselves” as possible=you remember them

Break requests down into smaller conceptual units

Remember the importance of the presence of the caregiver

Worship with Cognitively Impaired

Those elements memorized as a child will work well

Employ rhythm, clapping or sensorial devices to keep the group tracking together

Must all elements of worship be engaged in by all congregation?

What is the Caregivers Program of Research?

CPR is a dementia-specific, caregiver-focused education, support, and research program affiliated with the University of Louisville School of Nursing.

CPR currently serves family caregivers in the Louisville metropolitan area, including southern Indiana

Enrollment Criteria

Medical Diagnosis PWD Caregiver Willing to Sign Research

Consent PWD Residing in Community/at

Home Interview =45 Minutes of HSC

Skill Building

Family Focus=Same Understanding Increased Knowledge about Disease

Process Management of PWD Behavior

Problems Use of Community Resources

Outcomes of Caregiver Program of Research

Decreased Caregiver Depression Improved Management of PWD Decreased Frequency of PWD

Problem Behavior

Caregiver Coping MechanismsPrayer 74%Talking with friends/relatives

66%

Exercising 38%Hobbies 36%Professionals (e.g. counselors)

16%

Medications 7%Alcohol 3%

Spirituality Improves Coping

Use spiritual behaviors to enhance coping with demands of caregiving!!

Reading Spiritual Material The Book of Ruth

Naomi—Elimelech Ruth—Mahlon

Orpah—Chilion

Nourish Your Spirit

Increased capacity to give care

Caregiving is inherently spiritual

Greater potential to find meaning in the care we provide

Nurture Faith and Spirituality Find a sense of purpose in

caregiving

Continue to engage in spiritual activity

Use prayer, journaling, meditation, reading materials etc.

Try different modes of spirituality

Contact Information

Call 502-852-CARE (2273) OR Call U of L School of Nursing Research Assistant Samantha Davis, MSSW