Caregiver Stress, Quality of Life, and Work-Life Balance · Improved QOL is associated with reduced...

Caregiver Stress, Quality of Life, and Work-Life Balance

Blaise Morrison, PhD, CRC, LPCSusan Girdler, PhD, FABMR

UNC School of Social Work 2017-2018 Clinical Lecture Series4/9/2018

NCD Caregiving Facts

• Americans provided nearly 18 billion hours of unpaid care in 2014

• Cost of care provided by family and other unpaid caregivers was around $217.7 billion in 2014

• Annual direct and indirect expenses of care will soar to a projected $1.2 trillion annually by 2050

(Alzheimer’s Association, 2015; Kimchi & Lyketsos, 2015)

Caregiving & Psychological/PhysicalHealth

• Caregivers are at much greater risk for experiencing reduced psychological and physical well-being compared to non-caregivers (Li et al., 2012; Pinquart & Sorenson, 2003)

• The prevalence of caregiver depression suggests a serious issue that affects caregivers, care recipients, and the healthcare system

Caregiving & Economic Health

Increased Family Caregiver Burden Professional Caregiving

or Institutionalization

• The financial burden is too much for many families

• Additional financial difficulties occur due to caregiving’s impact on caregiver employment

(Hurd et al., 2013)

Caregiving: A Balancing Act

Other chronic strains

and life events

Internal coping

resources

External coping

resources

Secondary

stressors

Primary

caregiving

stressors

Perkins et al., 2007

The Physiological Impact of Stress

How does caregiving stress impact the body and mind?

WHEN PHYSIOLOGIC RESPONSES TO STRESS ARE NOT APPROPRIATE TO OUR METABOLIC NEEDS

How Stress Gets “Under the Skin” to Promote Illness

Hypothalamus:

CRH

Locus Coeruleus:

NE

pituitary

cortisolACTH

adrenaline

Sympathetic

ganglionNE &

neuropeptides

Hypothalamic-pituitary-adrenal (HPA) axis

Regulates:• Metabolism of

glucose

• Immune activation

Sympathetic Nervous System

or “Flight or Fight”

Regulates: • Heart rate

• Blood Pressure

STRESS AXES

A question of Balance

What is processed by the brain has an impact on the functioning of the immune system (e.g., psychosocial events, emotions…).

This is possible because the immune system is connected to the brain via autonomic nerves and neuroendocrine factors and shares common cellular communication messengers.

CNS

Immune cells

The Golden Age of Psychoneuroimmunology in the 1970s: Immune Responses are Modulated by Brain Events

AutonomicNervous System‘Flight or Fight’

NeuroendocrineFactors

e.g., cortisol

STRESSORS

CNS

Immune cells

An Emerging Concept in the late 1980s:The Immune System Needs to Talk to the Brain

Like any other physiological system in the body, the immune system needs the brain to do what it has to do and to be regulated

If it is the case, the brain has an « immunostat » that enables it to perceive and represent what is going on in the immune system, using immune cell communication molecules (cytokines)

ANS &Neuroendocrine Factors

Cytokines

Chronic peripheral inflammation

Activation of brain

cytokinesignalingRisk factors for

inflammatory disordersRisk factors for

psychiatric disorders

Subjective health complaints:- Fatigue, Pain- Sleep disorders- Depressed mood- Cognitive alterations

0

50

100

150

200

250

Imm

un

e F

un

ctio

n (

%)

AStressOnset

BModerately Prolonged

Stress

CChronic Stress

Adrenaline

Romero-Martínez, A.,et al., 2014, Stress, 17(4).

Caregiver Cortisol Responses to Stress are Associated with Care Recipient Characteristics

0.2

0.25

0.3

0.35

0.4

0.45

0.5

0.55

ChildhoodAdversity

Abuse

IL-6

, p

g/m

l (lo

g10

)No Adversities

One Adversity

Multiple Adversities

No Hx of Abuse

Hx of Abuse

Kiecolt-Glaser, J. K., et al., 2011. Psychosomatic medicine, 73(1), 16.

Childhood Adversity Predicts Adult Caregivers Inflammatory Cytokine Levels

*

**

* P < .05; ** P < .01

What Should Health Professionals Do?

Identifying and Supporting At-Risk Caregivers

Clinical Recommendations

1) View informal caregiver(s) as critical part of the treatment process (They are the “2nd patient”)

2) Use brief assessments to identify risk factors

3) Provide community resource information for caregiver support/interventions

4) Be proactive! Do not wait until they verbalize their burden/distress.

5) Advocate for the development of an internal caregiver support program

6) Advocate for greater federal/state funding for caregiver support

Brief Clinical Caregiver Assessments

Psychological/Physical Health

• Patient Health Questionnaire (PHQ-9)

• Beck Depression Inventory (BDI-II) $$$

• Beck Anxiety Inventory (BAI) $$$

• Caregiver Self-Assessment Questionnaire

• Geriatric Depression Scale (GDS)

• Zarit Burden Interview (ZBI)

• 12-Item Short Form Survey (SF-12) $$$

Caregiver Characteristics

• Revised Scale for Caregiving Self-Efficacy

• Multidimensional Scale of Perceived Social Support (MSPSS)

• Brief COPE (coping style)

• Social Problem-Solving Inventory –Revised $$$

• Family Conflict

• Dyadic Relationship Scale (DRS)

Why is Caregiver Quality of Life Important to Consider?

(Argimon et al., 2005 ; Belle et al., 2006; Kuzu et al., 2005; Litzelman et al., 2016; Mittelman et al., 2006)

Low Quality ofCare

Average Quality ofCare

Above AverageQuality of Care

Ca

reg

ive

r W

ell

-Be

ing

Caregiver Well-Being & Quality of Care

Caregivers

Low Need Average Need Intensive ServiceNeed

Ca

reg

ive

rWe

ll-B

ein

g

Caregiver Well-Being & Need for Professional Caregiving Services

Caregivers

TIME TO PLACEMENT IN NURSING HOME

Ca

reg

ive

r We

ll-B

ein

g

Caregiver Well-Being & Delayed Nursing Home Placement

Caregivers

CAREGIVER QOL IS AN IMPORTANT COMPONENT OF PATIENT CARE!!!

CAREGIVER-FOCUSED INTERVENTIONS AND RESOURCES ARE NEEDED!!!

Caregiver Resources

National Family Caregiver Support Program (NFCSP) (NC Area Agencies on Aging)

• Program developed to provide support to family members who care for senior relatives (60+) at home. Direct assistance to caregivers in the form of:

• enhanced information about available community services

• assistance in accessing services

• support groups, caregiver training, and individual counseling

• respite care

• supplemental services of various kinds

Contact: Ellison JonesFamily Caregiver Program CoordinatorPhone: 919.558.9391Fax: 919.549.9390ejones@tjcog.org

Caregiver Resources

• Project C.A.R.E (partners with NFCSP and community agencies)

• The only state funded, dementia specific support program for individuals who directly care for loved ones with Alzheimer’s disease or related dementias.

• Counseling, care consultation, dementia-specific information, caregiver assessments, caregiver education, respite care, and connections to social support networks

• Connecting families with available community resources in an attempt to meet unmet needs of family caregivers including local support groups, supportive services, entitlement programs and other community resources

Contact: Dawn Gartman, State Project CARE Director,

919-855-3462, dawn.gartman@dhhs.nc.gov

More Caregiver Resources

• North Carolina Guide for Family Caregivers:

• https://assets.aarp.org/www.aarp.org_/articles/states/NC_FmlyCrgvng.pdf

• Family Caregiver Alliance (National Center on Caregiving):

• https://www.caregiver.org/taxonomy/term/92

• Guiding Lights Caregiver Support Center:

• http://www.guidinglightsnc.org/caregiving-resources.php

• Comprehensive Review of Caregiver Assessments:

• https://www.caregiver.org/sites/caregiver.org/files/pdfs/SelCGAssmtMeas_ResInv_FINAL_12.10.12.pdf

Caregiver-Focused Interventions

1) Peer Support Groups

2) Mental Health Counseling/Skills Training

3) Psycho-education/Informational Support

4) Respite Care

5) Accommodations/Assistive Technology

6) Exercise- or Motor-Based Interventions

Caregiver Peer Support Groups

• Caregivers with high levels of social support have more help with the fundamental aspects of caregiving and have more opportunities for emotional support and caregiver education

Mental Health Counseling/Skills Training

• Counseling help caregivers manage the emotional/psychological consequences of caregiving and can assist with the development of coping skills, problem-solving skills, and the overall adjustment to the caregiving role

Psychoeducation/Informational Support

Respite Care

Accommodations/Assistive Technology

• Examples: Alarms/reminders, telecare, GPS location monitoring devices, reminiscence tools, Disability-friendly furniture, modified appliances, adaptive technology

Exercise/Motor-Based Interventions

• Exercises that focus on flexibility, strength, agility, balance, and emphasize the functional capacity of upper and lower limbs have been shown to improve functional outcomes and well-being in older adult patients and their caregivers

Summary

• Improving caregiver QOL has many positive implications for improving patient outcomes and for reducing the burden on the healthcare system

• Improved QOL is associated with reduced stress and improved work and life satisfaction.

• Evidence suggests that implementing caregiver-focused programs can save states substantial money in terms of direct care costs (e.g., NYU caregiver intervention research)

• Healthcare providers can positively impact treatment outcomes and caregiver/care recipient QOL through caregiver screening during patient appointments (and referring caregivers to appropriate resources)