# Presentation: 510210

## Supporting Family CaregiversWhat Do We Know About our New Clients?

**Rhonda J.V. Montgomery, Ph.D.**
**University of Kansas**

**Notes:**
This is a very special day for me because it is exactly 20 years ago that I wrote my first proposal to conduct a service demonstration that would test the value of support services for family caregivers.  I submitted that proposal to AoA and from my perspective they wisely funded that project. Now,  today I have the opportunity to be here as AoA launches the National Caregivers Support Program which not only incorporates many of the services that were implemented in that early study, but goes well beyond that to offer the opportunity for states and communities to build strong and hopefully enduring systems of services that will support a wide range of caregivers.  For me this is a moment of affirmation that the issues that  I and my colleagues have focused on over the past two decades are now being addressed and the findings from our research may be valuable for guiding the implementation of this new program.

With that initial study of 300 caregivers in King County Washington  I began learning about caregivers and their needs.  The material I am sharing with you today is information that has been shared with me and other researchers by tens of thousands of caregivers who have willingly given their time, to help us learn about  their experiences.  From these caregivers, who have shared both heart wrenching and hear warming stories, we have gained many insights that will help us design support systems that will make a difference. 

## We know:

- Our Clients are Families and Dyads:
- Caregivers
- Frail and Disabled Elders

## We know:

- Families provide 80% of long term care
- Nursing home is last choice for care
- Most caregivers are women
- NOT ALL CAREGIVERS ARE ALIKE

## Slide 4

## Caregivers by Relationship to Elder Care Recipient

## Diversity

**Gender**
**Generation**
**Ethnicity**

## Diversity of Caregiving

**What they do **** **
**How they do it**** **
**How long they do it**

## Spouse

**Emotional**

**Emotional**

**Banking**

**Banking**

**House Tasks**

**House Tasks**

**Errands / Shop**

**Errands / Shop**

## Spouse

**Emotional**

**Emotional**

**Banking**

**House Tasks**

**Errands / Shop**

## Spouse

**Emotional**

**Emotional**

**Banking**

**House Tasks**

**Errands / Shop**

**Personal Care**

## Child

**Emotional**

**Emotional**

**Banking**

**House Tasks**

**Errands / Shop**

**Personal Care**

## Child

**Emotional**

**Emotional**

**Banking**

**House Tasks**

**Errands / Shop**

**Personal Care**

## Adult-Child

**Emotional**

**Emotional**

**Financial**

**House Tasks**

**Errands / Shop**

## Adult-Child

**Emotional**

**Emotional**

**Financial**

**House Tasks**

**Errands / Shop**

**Personal Care**

## HOURS OF CARE 

## HOURS OF CARE 

## Care Sharing:  Wives

- Care Sharing: Wife

- P

- H

- S

- B

- H

- S

- B

- O

**80%**

**20%**

## Care Sharing Husbands

- Care Sharing: Husband

- H

- S

- B

**O**

- H

- S

- B

- P

- P

- H

**70%**

**20%**

**10%**

## Care Sharing: Daughter

**70%**

**30%**

- B

- T

- O

- H

- P

## Care Sharing: Son

**55%**

**45%**

**B**

- S

- O

- H

- P

- H

**s**

- B

**O**

- P

## Caregiving Career: Child

## Caregiving Career: Child

## Caregiving Career : Spouse

- <date/time>

**Caregiving Career : Spouse**

## Caregiving Career : Spouse

- <date/time>

## Comparing Careers

**CHILD**

**SPOUSE**

## Markers Model of Caregiving Careers

- Two basic Premises:
- 1. There is no single, generic caregiver role; an individual's role emerges from prior role relationships and is influenced by the unique values, beliefs and circumstances of the role occupant . Consequently there are:
- Consistencies in the caregiving process.
- Unique adaptations.
- 2. Caregiving is a dynamic process that unfolds over time: it is a career of variable length.

## Caregiving Career Markers

- 1.  Performing caregiving tasks
- 2.  Self-definition as a caregiver
- 3.  Performing personal care tasks
- 4.  Seeking assistance and formal services
- 5.  Consideration of nursing home placement
- 6.  Placement in nursing home
- 7.  Termination of caregiving

## Caregiving career: child

## Caregiving Career : Spouse

## Comparing Career Markers

**CHILD**

**SPOUSE**

**#6**

**#3**

**#4**

**#5**

## Caregiving Career: Child

- <date/time>

## Differences translate to need for different types of support

**Education/Information**
**Support Groups**
**Respite care**
**Care Management**

## Rationale for Support

**Burden**

**Care**

**Exhaustion**

**Abuse**

**Placement**

## Rationale for Support

**Burden**

**Care**

**Exhaustion**

**Abuse**

**Placement**

**Support**

## Rationale for Support

**Burden**

**Care**

**Exhaustion**

**Abuse**

**Placement**

**Support**

## Does this Rationale Hold?

**Care does not always lead to burden**
**Diversity of burdens**
**Support does not always reduce burden**
**Not all caregivers will use support**

## Diversity of Burdens

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

## Diversity Translates To :

**Types of Services Used**
**Timing of Services**
**Dosage of Services **

## Relief Comes When:

- COST   <  or  =  RELIEF
- COST = Time + 		 Physical Energy +                 		        Emotional Energy

## <footer>

- <date/time>

**Notes:**
Relief Comes in Many Forms

## <footer>

- <date/time>

## <footer>

- <date/time>

## The Result of a Service

- A Break
- A Rest
- Relief

## How Do We Maximize Relief?

- Optimal Service
- Education
- Counseling
- Care Management
- Support Groups
- Respite Care
- In-home
- Day Care
- Residential

- Optimal Dosage
- Quantity
- Frequency
- Timing

**Notes:**
Just like medication:
	The dosage of respite must take into account the amount (hours, days, weeks), Frequency and timing (caregiver time)

## Education Programs

- Children:
- Disease Process
- Community Based Services
- Legal and financial information

- Spouses
- Coping skills
- Behavior management
- In-home supports

## Support 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
- Self care
- Often need transportation and respite care to attend

## Type of Respite Used

**Day Care**
**Adult Child Caregiver**
**Single Elder**
**Younger**
**Less impairment**
**Hispanics/Blacks**
**Urban**

**In-Home Respite**
**Spouse Caregivers**
**Married**
**Reside with Caregiver**
**Most impaired**
**White**

## Three Patterns of Respite Use

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

## Brief Users of Day Care

- Client characteristics:
- Problem Behaviors (+)
- Whites (+)
- Program Characteristics
- Cap on hours
- Health Care Component

## Conclusions:

- Day care programs are most appropriate for persons with limited disabilities who do not engage in aggressive or problem behaviors.
- When the care needs of the elder are high, day care is not easily used.
- When programs are appropriately targeted and marketed to minority groups they are well used.

## Brief Users if in-home services

- Whites (+)
- Program Characteristics
- Volunteer staff (+)
- Health Care Component (-)
- Co-pay (+)
- Set fee (-)

**Notes:**
The picture that emerges from these findings is one in which program characteristics shape patters of in-home use, or more precisely discontinued use.   Brief users of in-home respite may constitute a sub-population of caregivers with unmet needs unlike those of continuous users.  
Blacks and Hispanics more likely to be long term users
Long term users prefer paid staff, availability of health care and a set fee.  Co-payment however leads to less
Tie to voluntary payment means that services are at lower level (companion) and that is not enough for people who are seeking in-home services. 

## Conclusion

- The picture that emerges from these findings is one in which program characteristics shape patterns of in-home use, or more precisely discontinued use
- Brief users of in-home respite may constitute a sub-population of caregivers with unmet needs unlike those of continuous users

## Brief Users

- Reflect families who seek services that generally do not meet their need
- Dissatisfied Consumers
- Costly to provider as well as client

**Notes:**
Therefore it is important to know 

## Brief Users Cost Money

- Comprised 30% of Clients
- Add to turnover
- Increase need for marketing efforts
- Increase staff time
- Take up spaces that others could benefit from

## Implications for Providers

- Not all services meet the needs of all people.
- Day Care programs will reduce the number of brief users by
- Appropriate marketing
- Relating clear expectations to clients
- In-home programs best meet the needs of clients when they are staff by paid staff who can provide assistance personal care and health needs.

## Measures of Average Use of Respite among Long-term Users

|  | Day Care | In-home |
| --- | --- | --- |
| Total Hours | 817 | 282 |
| Average  per Month | 50.3 | 24.6 |
| Duration | 16.2 | 14.9 |
| Continuity | 72% | 71% |

## Initial Intensity is           influenced by

- Relationship (spouse -)
- Gender of Caregiver (female+<)
- Instrumental Activities of Daily Living
- Prior Use of Services (+)
- Duration (+)

## Day Care Use by Relationship

- Six relationships divide into three  patterns:
- Wives
- Daughters and Husbands
- Sons and other relatives (male and female)

**Notes:**
The explanation for differing patterns of use may reside in the fact that caregivers are entering the programs at different stages of the caregiving 

## Day Care Use by Relationship

**Months of Use**

**49**

**43**

**37**

**31**

**25**

**19**

**13**

**7**

**1**

**Mean Number of ****Hours**

**75**

**70**

**65**

**60**

**55**

**50**

**45**

**40**

**35**

**30**

**25**

**20**

**15**

**10**

**Daughters**

**Sons**

**Wives**

**Husbands**

**Other Females**

**Other Males**

**Notes:**
Six relationships translate to three patterns

## Day Care Use by Relationship

## Day Care Use By Race

**Months**** of ****Use**

**49**

**41**

**33**

**25**

**17**

**9**

**1**

**Mean Hours of Use**

**75**

**70**

**65**

**60**

**55**

**50**

**45**

**40**

**35**

**30**

**25**

**20**

**15**

**10**

**White**

**Black/African-Am**

**Hispanic/Latino**

**Other Race**

**Notes:**
Figure 1.2 Day Care by race

Referent Group:  Child, one service, no prior service, 
CG Female
duration 16.2 (mean)
 cap 1091hrrs
Traditional ADC

Whites use less than black initially by  more than black over a period of time
Blacks decrease more significantly over time.

 Hispanic more than both throughout
 but other race actually increases over time.  

## Day Care Use by Race and Relation

**Months of Use**

**49**

**41**

**33**

**25**

**17**

**9**

**1**

**Mean Number of Hours**

**75**

**70**

**65**

**60**

**55**

**50**

**45**

**40**

**35**

**30**

**25**

**20**

**15**

**10**

**Hispanic Daughters**

**White Daughters**

**Black Daughters**

**White Husbands**

**White Wives**

**Black ****Wives**

**Black Husbands**

**Hispanic Wives**

**Hispanic Husbands**

**Notes:**
Note that after a long period of day care use Hispanic wives have patterns that are similar to White Daughters and Husbands.

Also after about 9 onths of use blacks of all relationships drop below wives drop below whites in amount of services used. In fact after 20 months black husbadns and Daughres use less service than white wives.

## Day Care Use by Race in Spouses and Children

**Months of Use**

**49**

**41**

**33**

**25**

**17**

**9**

**1**

**Mean Number of Hours**

**75**

**70**

**65**

**60**

**55**

**50**

**45**

**40**

**35**

**30**

**25**

**20**

**15**

**10**

**Hispanic Daughters**

**White Daughters**

**Black Daughters**

**White Husbands**

**White Wives**

**Black Wives**

**Black Husbands**

**Hispanic Wives**

**Hispanic Husbands**

## Figure 7: Day Care Use by Provider Cap

## Race makes a differences

- At point of initial use
- Over time
- Relative to whites both Hispanics and blacks decrease use over time.
- Both minority groups initially use services at a higher level than whites

## Ethnicity and Relationship Combine to Create Different Trajectories.

## In-Home Respite by Relationship

- Elders  care for by spouses consistently use less in-home care than does any other group.
- neither gender nor relationship matter beyond that distinction.

## Figure 8: In-Home Respite Use by Relationship

- <date/time>

**Months of Use**

**49**

**41**

**33**

**25**

**17**

**9**

**1**

**Mean Number of Hours**

**46**

**44**

**42**

**40**

**38**

**36**

**34**

**32**

**30**

**28**

**Children**

**Other Caregivers**

**Spouses**

**Figure 8: In-Home Respite Use by Relationship**

## Figure 9: In-Home Respite Use by Income Group

**Months of Use**

**44**

**41**

**33**

**25**

**17**

**9**

**1**

**Mean Number of Hours**

**46**

**44**

**42**

**40**

**38**

**36**

**34**

**32**

**30**

**28**

**< $5000**

**$5000 - $15000**

**$15001 - $30000**

**$30001 - $50000**

**> $50000**

## Figure 10: In-Home Respite Use by Provider Cap

**49**

**41**

**33**

**25**

**17**

**9**

**1**

**Mean**** Number of Hours**

**46**

**44**

**42**

**40**

**38**

**36**

**34**

**32**

**30**

**28**

**Mean Capitation**

**High Capitation**

**Low Capitation**

## Implications for Providers

- Know your target population as their characteristics are linked to patterns of use
- Marketing
- Planning
- Design services with attention to both level of care and type of services
- Multiple forms of respite are desirable
- Be careful about placing arbitrary limits on service. This may be counter productive.

## To Optimize Services consider:

- The caregiving context:
- Relationship
- Disability Level and type
- Cultural Values
- Resources and Obligations
- Work
- Health
- Money
- Informal Resources

**Notes:**
Relationship:  Type and Quality
Disability Level and Type: Both physical and mental
Cultural values translate to personal norms that place parameters around choices
Work and family 

## Why Optimize?  It Enables:

- Provider Agency to:
- Maximize quality
- Appropriately market
- Efficiently allocate resources
- Funds
- Staff

- Policy Makers to
- Assess needs
- Allocate Resources (appropriate limits)
- Target Resources

## Information about Client Satisfaction

- We know _how_ services were delivered, what we are interested in is perceptions of services by caregivers as they dictate if, when and how they use services.

## Background Characteristics(Immutable)

- Ethnicity
- Age
- Relationship
- Caregivers Health
- Elder’s ADL

## Caregiver’s Perceptions

- Service Expectations
- Communication Difficulties
- Access to Services
- Red Tape

## Service Expectations

- It was clear to me exactly what the workers would and would not do.
- The information that I received about the program gave me a clear idea of what to expect from the respite workers.

## Communication Difficulties

- I need someone to help me talk with the respite workers
- When talking with the respite workers it is difficult to explain what help you want.

## Access To Services

- Eight items that assess:
- Ease of use
- Times and days of availability
- Correct (desired) amount

## Red Tape

- Five items that assess
- Difficulty in applying for services
- Waiting to see or talk with someone
- Effort to arrange for service

## Satisfaction with Day Care:

- Background
- African Americans(-)
- Older Caregivers (+)
- Healthier CG (+)

- Perceptions
- Expectations (+)
- Communication difficulties (-)
- Access (+)
- Red tape (-)

## Satisfaction with In-home Services

- Background
- Hispanics (+)
- Elder's ADL (+)

- Perceptions
- Expectations (+)
- Access (+)
- Red tape (-)

## Conclusion and Implications

- Satisfaction levels are more affected by the things that providers “do” than by client characteristics.
- That’s good news because these are elements that providers can control and change.

## Interesting Observations

- For day care it is the caregiver’s health that matters the most.
- For in-home it is the elder’s health that matters the most.
- Expectations are the most important factor regardless of service.

##  Implications for Design Services

** ****Need for multiple and complimentary support services**
**Types of Care**
**Levels of Care**
** ****Change is the norm**
**Equal does not mean effective or efficient**

## Implications for Delivery of Services

** ****Identify the “Serviceable Moment”**
**clear expectations**
**respect**
**flexibility**
** ****Communicate **

## Remember the client is the family

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

## Remember:

- The serviceable moment
- Target the caregiving context
- The family relationship
- The cultural background
- The marker within the caregiving career

## Reference

- RJV Montgomery & K.D. Kosloski,
- “ Change, Continuity  and Diversity Among Caregivers”
- http://www.aoa.gov