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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: [email protected]
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, [email protected]
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)
