caring for the caregiver across time...repatterning of care- wuest, 2000 1. caregiver struggles to...

Caring for the Caregiver Across Time

Ann S. Morrison PhD, RNJohns Hopkins School of Medicine

Alzheimer’s Disease Research [email protected]

The Copper Ridge InstituteRadlick Nurse Scholar

Caregiver Stress

Caregivers face similar stressors with very dissimilar outcomesCaregivers posses a unique constellation of characteristics that influence their ability to take on the role

Caregiver Stress ProliferatesAcross Time

Becoming a caregiver is an unplanned careerAD has a relentless, debilitating course As the patient loses function, caregiving responsibilities increase(inverse relationship)

There Are Stages of CaregivingCaregiving Changes Over time

I. The Beginning

II. Learning to be a caregiver

III. Full Time Caregiver

IV. Veteran Caregiver

The Beginning

Noticing that memory problems move from occasional to a distinct pattern1. Experience a quiet panic, fear2. Use denial until an indisputable event

occurs3. Worry about impact of becoming a

caregiver

The Beginning

Noticing that memory problems move from occasional to a distinct pattern4. May have little physical care5. Has a large psychological adjustment 6. Lots of planning needed

Learning to be a Caregiver(Early Stage Dementia)

Goals for this stageLearn to manage carePlan for later stagesUnderstand limitationsStrengthen support mechanisms


Goal is to educate yourself and prepare for months ahead

- Dispel myths you may have- Learn primarily stage specific information- Learn the difference between STM and LTM- Remember family members at different points

of understanding and acceptance


- Learn reasons for changes seen (problems other than memory)

- Get a list of available resources (Alz Assoc)

- Think about trips, future choices such as moving


Tasks1. Create a schedule for patient (calendar,

recorders, speed dial)2. Use “memory places” 3. Have care recipient write and rehearse for

important phone calls 4. Use a spiral bound notebook for chores

and phone numbers, important conversations


5. Organize important papers, doctors phone numbers, medicine lists, relatives phone numbers

6. Learn when to call for help7. Strengthen friendships and social ties8. Extra effort for pleasurable activities9. Buy the expensive bottle of wine!

Full time Caregiver(Middle Stage Dementia)

Repatterning of Care- Wuest, 20001. Caregiver struggles to respond to care demands2. Work and family relationships altered3. Becoming difficult to address competing

responsibilities

Wuest, J. Repatterning care: women's proactive management of family caregiving demands.Health Care Women Int. 2000 Jul-Aug;21(5)


4. Experience care dilemmas5. Recognize altered prospects for the

future6. Experience ambivalence


GoalsReduce expanding stress by learning advanced care skills and problem solving skillsContain stress by reinforcing support systems and maintenance of self-interestsAccept limitations

Objective Primary StressorsDirect result of the disease process

Patients Needed Care• Degree of Cognitive Impairment, Functional Loss• Problematic Behavior, Resistance to Care

Caregivers Response to Needed Care• Based upon what you know• Willingness to take on role• Emotional response to the disorder and secondary

life changes

Secondary StressorsDirect caregiving stressors give rise to stressors

outside the boundaries of caregiving. These stressors arise as a consequence of caregiving

Constriction of social life /leisure timeFinancial ConcernsFamily ConflictIsolationRole overloadLoss of self (loss of self-validating experiences)


Reduce expanding stressTherapeutic processing

Expressing feelings and concernsLearning concrete problem solvingUnderstanding feelings of others

Accepting limitations of care recipientDecrease resistance to the situationReframing perceptions


Reduce expanding stressAccept relief with care

Day care, in home help, temporary respite

Have a realistic appraisal of care recipient functioningLearn about the non-memory symptoms of AD


Contain proliferation of stressLearn advanced care skills

Reading body language, managing agitationProblem solving skills

Learn sources of problems and set prioritiesSeek crisis intervention as neededAttention to personal needs and wantsAsk for anticipatory guidance or what to be concerned with in the near future


Contain proliferation of stressComfort and emotional support Daily structure and organizationAssistance with decision makingMeticulous medical care social networks

Maintain hobbies, roles, interests

Rabins, Lyketsos, Steele. Practical Dementia Care, Oxford Press, 1999

Full time Caregiver(Late Middle Stage)

Goal/Care planProgressively work to accept transition of

care to othersRound the clock careAssisted living or nursing homesHospitalization

Have an emergency plan for caregiver OR care recipient hospitalization

Moderating Factorsfor the Caregiver Experience

AgeGenderOccupationMarital StatusType of relationship to pt.Quality of relationship to pt.


Social Support (Ease of contact)

Medical Support (MD, RN, Therapist)

Use of Services (Day care, Counseling)

Coping SkillsSelf-efficacyCaregiver Mastery


Frequency of visitsFinancial StatusEmployment StatusDuration of Care

Outcomes of Caregiving

Positive outcomes of caregivingCompetenceSelf-worthSatisfactionRepayment

Outcomes of Caregiving

Negative outcomes of caregivingDepressionAngerAnxietyPoor physical healthMortality

Veteran Caregiver(Late Stage Dementia)

InterventionsThink of placement as an option throughout late stages of careRed Flags for Caregiver burnout

• role captivity• depression• feelings of futility• lack of satisfaction with CG role


InterventionsMonitor your health and effect caregiving has on itInquire about need for financial assistance for at home care or placementContact Department of Aging, Social Services for evaluationPrepare for adjustment to placement


InterventionsLetting go of caregiver roleSocial readjustmentRenew social contacts or networks

Summary

Caregiving usually involuntary and long-termResponsibilities increase over timeSuccess associated with flexibility and non-resistanceEach caregiver has a unique set of strengths, weaknesses, and concerns

Conclusion

- There are predictable stages of caregiving across time.

- Early stage caregivers benefit from education and planning

- In later stages caregivers benefit from concrete problem solving, respite, and maintenance of outside interests

Thank You

caring for the caregiver across time...repatterning of care- wuest, 2000 1. caregiver struggles to...

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