Caring for CaregiverRubensteinApril2020finalwithvideos · the caregiving experience. (Yu, 2018) Dementia Caregiver Assessment Tools • The provider who treats the care recipient

Caring for the CaregiverCarrie Rubenstein, MD

Swedish Geriatric Medicine Fellowship DirectorClinical Associate Professor, Dept of Family Medicine, University of Washington

4/28/2020

Who am I?

• Family physician and geriatrician• Early career practicing family medicine at a community health center• Clinician educator• 5 years at Swedish, family medicine faculty and geriatrics fellowshipdirector

• Interest in interprofessional education and geriatrics workforce

Caring for Caregivers (Rubenstein), NW GWEC Spring 2020 1

Age Friendly * 4Ms

Caregiving is Personal to Me


Guiding Questions

• Who are the dementia caregivers?• What challenges do they face?• How do we support dementia caregiversthrough their caregiving journey?

Who are the Caregivers?

• Definitions, terminology andlanguage (it matters!)

• Review the numbers


Terminology

What is a Caregiver?

Family(informal)caregiver

Carerecipient

FormalCaregiver

Dementia Terminology

https://www.caregiver.org/The mission of Family Caregiver Alliance (FCA)

Language Matters

(Lundebjerg, 2017)


(Lin, 2015)

Who are the dementia caregivers?

• 83% percent of the help provided to older adults in the United States comes fromfamily members, friends or other unpaid caregivers

• Nearly half of all caregivers (48%) who provide help to older adults do so forsomeone with Alzheimer’s or another dementia.

• Most caregivers (82%) care for one other adult, while 15% care for 2 adults, and3% for 3 or more adults.

• More than 16 million Americans provide unpaid care for people with Alzheimer'sor other dementias.

• Approximately two thirds of dementia caregivers are women. About 30% ofcaregivers are age 65 or older. Over 60% of caregivers are married, living with apartner or in a long term relationship.

(Alzheimer's Facts & Figures, 2020)


Why is this topic important?

Why is this topic important?

A new survey of primary care physiciansappearing in the Alzheimer’s Association2020 Alzheimer’s Disease Facts andFigures report finds nearly 9 in 10 primarycare physicians (87%) expect to see anincrease in people living with dementiaduring the next five years, but half (50%)say the medical profession is not preparedto meet this demand.



Ms. Jones and her daughter Vera

• Vera works, and leaves Ms. Jones at home. She’s recently cut back onher hours and thinks she may need to cut back more.

• Ms. Jones does not want anyone else caring for her.• Vera puts out her food and medications before she leaves for work.• Increasing concern for leaving Ms. Jones at home• No other family• Very close dyad• Total household income $50,000

Guiding Questions



Dimensions of Dementia Caregiving

Type of Care Demands

• iADLs, then ADLs• Medicationadministration/supervision

• Managing medical appts• Managing the continuum ofbehavioral changes/symptoms

• Navigating support services• Navigating finding in homeservices, considering transitions

• Managing family issues• Helping plan for future





• 2x higher risk of adverse health outcomes forall caregivers

• Dementia caregivers more likely to have moreinfectious episodes, slower wound healing,increased HTN/CAD

• A recent meta analysis of studies examiningthe associations between family caregiving,inflammation and immune function suggeststhat dementia caregivers had reductions inimmune function and elevated inflammation.

• A 2017 poll reported that 27% of dementiacaregivers delayed or did not do things to takecare of a personal health problem

• Other studies, however, suggest thatcaregiving tasks have the positive effect ofkeeping older caregivers more physicallyactive than non caregivers

(Roth, 2019)

• Depression diagnosis in up to50% of all caregivers, more whoperform more intense caregiving

• Behavioral symptoms as the“tipping point”

• Fifty nine percent of familycaregivers of people withAlzheimer’s or other dementiasrated the emotional stress ofcaregiving as high or very high

• Spousal risk of dementia

(Collins, 2019)


Unravelling positive aspects of caregiving indementia

• Positive aspects of caregivingencompass four key domains:

• personal accomplishment• mutuality in a dyadic relationship• family cohesion• personal growth and purpose

• Positive caregiving experience is morelikely to exist in the presence of threeconditions:

• personal and social affirmation of rolefulfilment

• effective cognitive emotional regulation• contexts which favor finding meaning inthe caregiving experience.

(Yu, 2018)

Dementia Caregiver Assessment Tools

• The provider who treats the care recipientis often the first health care professional todetect strain or burden because ofdynamics in the caregiver–care recipientdyad.

• Even then, indications of need andopportunities to prevent distress mandateroutine screening as a fundamental firststep.

• SCREEN!


Dimensions of dementia caregiving for Vera

Guiding Questions

• Who are the dementia caregivers?• What challenges do they face?• How do we support dementia caregiversin their caregiver journey?


Supporting Caregivers Along the Dementia CareJourney

Diagnosis Early Stage Mid Stage

Late Stage End of Lifeand Grieving


Dementia Action Collaborative

(https://www.dshs.wa.gov/altsa/dementia actioncollaborative, accessed 2020)

Step 1: Diagnosis of Dementia

• Fewer than half of Medicare beneficiaries who have a diagnosis ofAlzheimer’s or another dementia in their Medicare billing recordsreport that they do so.

• Diagnosis stories• Advance care planning: financial and health related• From time of diagnosis, much more could be done to integrate clinicalcare with community based support.


Step 2: Early Stage Dementia

Step 3: Mid Stage Dementia

• Community Living Connections(Area Agencies on Aging/AAAs)

• Alzheimer’s associationconnection care consultationprogram

• Clinic based interprofessionalteams

• Care models• Advance care planning


Step 2: Late Stage Dementia

• Cost of care without Medicaid• Home health aid $23/hour• Adult day health $75/day• Assisted living facility $4,000/month (menu)• Nursing home: $100K/year

• Medication deprescribing• A comment about respite care• Advance care planning

Respite Care | DSHSRespite care is a service where another trained person or staff at afacility provide planned, short term care (a few hours to a few days) foryour loved one so you have some time away from caregiving.www.dshs.wa.gov

Family Caregiver Support ProgramThe Family Caregiver Support Program provides help and resources for those whoprovide unpaid care to a senior adult or and adult with a disability.

King County Caregiver Support NetworkP.O. Box 34215Seattle 98124Website: https://www.communitylivingconnections.org/wecanhelp/caregivers/Phone: 1 844 348 5464 (KING)Alt. Phone: 206 962 8467


Step 2: End of Life

• What setting is desired and practical?• Between 1999 and 2017, the proportion of individuals withAlzheimer’s who died in a nursing home decreased from 68% to 51%,and the proportion who died in a medical facility decreased from 15%to 5%. (uptake of hospice)

• Reminder that hospice supports but they still need 24 hourcaregiving, particularly towards end of life, family members needcoaching about how to use prn medications.

• Intensive supports needed over long period of time

(Trinh, 2020)

Step 2: When the Dementia Caregiver Grieves

• Positive grief experiences included• positive construction of memories• death as the end of suffering• relationship resolution

• Negative grief experiences• family member’s decline as traumatic• caregiver role loss• unavailable support• difficulties creating a new life

(Supiano, 2020)


Model Programs for Person’s with Dementiaand their Caregivers

Design care for people withdementia by moving awayfrom an approach that

focuses on loss of abilitiesdue to dementia to an

approach that emphasizesthe individual’s unique

needs, personal experiencesand strengths.


Model Programs for Person’s with Dementiaand their Caregivers

(https://www.uclahealth.org/dementia/, accessed 2020)


Model Programs for Person’s with Dementiaand their Caregivers• Dementia Care Ecosystem

(https://memory.ucsf.edu/research trials/professional/careecosystem, accessed 2020)

Dementia Care Ecosystem

(https://memory.ucsf.edu/research trials/professional/careecosystem, accessed 2020)


Model Programs for Person’s with Dementiaand their Caregivers• Memory and Brain Wellness Center

• Interprofessional Geriatric Assessment Clinic at Swedish MedicalCenter

• Geriatric medicine, nursing, pharmacy, social work, behavioral health• Intervention during the time of their loved ones visit, assessmentduring the time of their care recipient’s cognitive assessment.

Dementia Caregiving in the Time of COVID 19

• Outreach• Telehealth• Physical distancing, socialisolation

• Limiting exposure of caregiver,Backup caregiving

• ACP in the time of COVID• Advocacy for being present ifperson with dementiahospitalized

(Halpert, 2020)


People of color/marginalized populations

• Racism/discrimination has a long history in the African Americancommunity and is a unique stressor to African American caregiversespecially related to trust building

• Need to tailor caregiver interventions to mediate stressors, resources,and coping strategies based on caregiver preferences.

• Support from family and friends is associated with better self ratedhealth for African American dementia caregivers

(Fawn, 2020)

Vera andMs. Jones


Guiding Questions


Take Home Points

• While we do not have diseasemodifying treatments fordementia, our collective role as aninterprofessional team treating aperson with dementia and theircaregiver is critical.

• Resources are plentiful, dementiaroadmap through dementia actioncollaborative is my go to resourceto hand to dementia caregivers.


Thank you!

• Carrie Rubenstein, MD• [email protected]


Documents

Caring for CaregiverRubensteinApril2020finalwithvideos · the caregiving experience. (Yu, 2018) Dementia Caregiver Assessment Tools • The provider who treats the care recipient