Serving Caregivers Before CrisisServing Caregivers Before Crisis

Rhonda J. V. Montgomery, Ph.D.

University of Kansas

Diversity of BurdensDiversity of Burdens

Difficult tasks/Physical Health Time for other responsibilities Task Overload Privacy Loss of Roles Isolation Financial Burden Guilt

Differences translate to Differences translate to need for different types of need for different types of

supportsupport

Education/Information Support Groups

Respite care Care Management

Rationale for SupportRationale for Support

Burden

CareExhaustion

Abuse

Placement

Rationale Rationale forfor Support Support

Burden

CareExhaustion

Abuse

Placement

Support

Does this Rationale Hold?Does this Rationale Hold?

Care does not always lead to burdenDiversity of burdensSupport does not always reduce

burdenNot all caregivers will use support

Relief Comes When:Relief Comes When:

COST < or = RELIEF

COST = Time + Physical Energy +

Emotional Energy

Maximize Relief With Optimal ServiceMaximize Relief With Optimal Service

EducationCounselingCare ManagementSupport GroupsRespite Care

• In-home• Day Care• Residential

Maximize Effectiveness with Maximize Effectiveness with Optimal DosageOptimal Dosage

QuantityFrequencyTiming

The caregiving career is a The caregiving career is a process of identity changeprocess of identity change

Wife to CaregiverHusband to CaregiverDaughter to Caregiver

Son to CaregiverFriend to Caregiver

An optimal change process:An optimal change process:

Continuous - not abrupt Accelerates the period between

self identification (#2) and seeking service (4)

Lengthens the period between seeking service (#4) and nursing home placement (#6)

Optimal supports facilitate Optimal supports facilitate identity shiftidentity shift

Teach caregivers about the caregiving roleInform caregivers about options for care

behaviorsInform caregivers about options for

supportsTeach caregivers to use supports

010203040506070

0 1 2 3 4 5

Years

Hours

Bank Shop/Trans Household Other Tasks . Personal

Caregiving career: child

#4

#2

#3#4

010203040506070

0 1 2 3 4 5

Years

Hours

Bank Shop/Trans Household Other Tasks . Personal

Caregiving career: child#6

#2

#3

#5 #6#4

Caregiving career: child

010203040506070

0 1 2 3 4 5

Years

Hours

Bank Shop/Trans Household Other Tasks . Personal

#2

#3

#5 #6#4

Education ProgramsEducation Programs

Children:– Disease Process

– Community Based Services

– Legal and financial information

Spouses– Coping skills

– Behavior management

– In-home supports

Support GroupsSupport Groups

Children– Extending support

network

– Knowledge of community services

– More easily attend if offered at the right time of day

Spouses– Changes in marital

relationships

– Encourage seeking and using supports

– Options for respite care

– Coping with grief and guilt

– Self care

– Often need transportation and respite care to attend

Three Patterns of Respite UseThree Patterns of Respite Use

Brief use: 2 months or fewerAverage Users ( 9 to 12 months)Long Term Users (18 or more months)

Brief Users compriseBrief Users comprise

30% of Clientsfamilies who seek services that do not meet

their needDissatisfied Consumers

Brief Users Cost MoneyBrief Users Cost Money

Add to turnoverIncrease need for marketing effortsIncrease staff timeTake up spaces that others could benefit

from

Day CareDay CareBest for clients with

– limited disabilities

– who are non-aggressive

– who do not engage in problem behaviors

Well used by minority groups when– appropriately targeted

– appropriately marketed

Not easily used when care needs are high

Preferred by working caregivers when– Hours match work

schedules

– Available daily

In-Home Respite Most Used In-Home Respite Most Used

Recipient resides with Caregiver

Most impaired clients

White

Caregiver is a Spouse

Implications for ProvidersImplications for Providers

Not all services meet the needs of all people.Day Care programs can reduce the number of brief

users by • Appropriate marketing• Relating clear expectations to clients

In-home programs best • when they are staffed by paid staff • who can provide personal care and • Assist with health needs.

Implications for Delivery of Implications for Delivery of ServicesServices

Identify the “Serviceable Moment”• clear expectations

• respect

• flexibility

Communicate

Remember the client is the Remember the client is the familyfamily

Support means help for the caregiver that is more valuable than the cost of using the service.

ReferenceReference

RJV Montgomery & K.D. Kosloski,

“ Change, Continuity and Diversity Among Caregivers”

http://www.aoa.gov