Serving Caregivers Before Crisis Rhonda J. V. Montgomery, Ph.D. University of Kansas

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

Differences translate to need for different types of support u Education/Information u Support Groups u Respite care u Care Management

Rationale for Support Burden Care Exhaustion Abuse Placement

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

Relief Comes When:  COST < or = RELIEF  COST = Time + Physical Energy + Emotional Energy

Maximize Relief With Optimal Service  Education  Counseling  Care Management  Support Groups  Respite Care In-home Day Care Residential

Maximize Effectiveness with Optimal Dosage  Quantity  Frequency  Timing

The caregiving career is a process of identity change  Wife to Caregiver  Husband to Caregiver  Daughter to Caregiver  Son to Caregiver  Friend to Caregiver

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 identity shift  Teach caregivers about the caregiving role  Inform caregivers about options for care behaviors  Inform caregivers about options for supports  Teach caregivers to use supports

Caregiving career: child #4 #2 #3 #4

Caregiving career: child #6 #2 #3 #5 #6#4

Caregiving career: child #2 #3 #5 #6 #4

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 –Coping with grief and guilt –Self care –Often need transportation and respite care to attend

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 comprise  30% of Clients  families who seek services that do not meet their need  Dissatisfied Consumers

Brief Users Cost Money  Add to turnover  Increase need for marketing efforts  Increase staff time  Take up spaces that others could benefit from

Day Care  Best 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  Recipient resides with Caregiver  Most impaired clients  White  Caregiver is a Spouse

Implications 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 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.

Reference  RJV Montgomery & K.D. Kosloski, “ Change, Continuity and Diversity Among Caregivers”