Understanding and Alleviating Caregiver Burden

**Topics in Geriatrics: Understanding and Alleviating Caregiver Burden**

Physical therapists are frequently involved in the education of caregivers in order for interventions to carry over in the home. The role of the caregiver in patient treatment and support is not to be underestimated. Thus, it is crucial that providers privately check in with their patients’ caregivers to determine if development of excessive stress is leading to burden or burnout. It is imperative that caregivers are able to appropriately manage the stresses involved in caregiving or else the wellness of both the patient and caregiver are at risk. This Wiki addresses recognizing, assessing, and assisting with caregiver burden of the elderly, in particular, as they are a population that carries special considerations.

**Objectives:**

**1.    Explain caregiver burden and its effects on health and wellness**

**2.    Discuss specific considerations caregivers face when caring for older adults**

**3.    Briefly address assessments for identifying caregiver burden**

**4.    Detail suggestions for assisting the caregiver**

**5.    Provide resources that clinicians and caregivers can use for extra support**

**What is Caregiver Burden?**

**Summary:**

Caregiver burden is the negative effect, based on physical, emotional, financial, and social stresses, that caregivers experience while providing long-term care to loved ones or patients.1 This burden is complicated by feelings like pain and fear that the caregiver may be experiencing in relation to the patient’s illness.2 Caregiver burden may progress to caregiver burnout, at which point an unsustainable level of stress has been reached that indicates a discontinuation of that caregiver’s services until the high stress levels can be resolved. Some caregivers experience only psychological stress, though physical symptoms may be experienced as well. The experience of each caregiver is unique based on the demands placed upon
them, and providers should speak directly to the caregiver regarding any concerns for their wellness. Those who tend to already be performing “health promoting” behavior (e.g., taking respite time, continuing hobbies, staying socially connected, eating healthy) tend to experience lesser amounts of caregiver burden than those that do not.2 Caregivers of older age
may also be less inclined to participate in health promoting behavior, such as exercise.

**Effects of Caregiver Burden on Wellness and Caregiving:**

1. Increase in presence or symptoms of mental health disorders, particularly depression1,3,4 and anxiety1,3

2. Increase in fatigue and sleep
difficulties1

3. Social isolation1

4. Feelings of a loss of sense of self5

5. Perception of physical health decline and possible development of chronic disease3,4

6. Somatic complaints including: GI
distress, headache, weight loss or gain1,3

6. Strained relationships with patient and risk of harm or negligence6

7. Possible substance abuse1

**Considerations in Caring for the Older Adult:**

*Certain considerations that are unique to caregiving for older adults are the following. These considerations may increase the burden of caregiving:*

**Balancing Independence and Support:**

Most older adults have spent the
previous decades of their lives as autonomous individuals who have physically and financially supported themselves. When their health or mind begins to fade, asking for extra support and caregiving may be embarrassing, frustrating, or go against their personal values of independence. The the older adult requires
patience and understanding when they begin to need support in the home. They should not be treated like children and should be consulted on decisions. Caregivers should be made aware that caregiving does not need to be an isolated practice; it should be a collaborative affair between the patient, the caregiver, the patient’s medical team, and willing family and friends.

**Aging in Place:**

Older adults often prefer to stay in their own homes as they age, regardless of their state of health. This decision should be respected as long as they may safely stay in the home. This may mean that they need to take on a live-in caregiver, rearrange and clean to improve safety and access to necessities, or complete home modifications to make the dwelling more accessible. Being able to help loved ones age in their familiar setting may ease tension and fear about the
future and increase their feelings of independence. If aging in place is causing stress or confusion, there are often local resources caregivers may access to help their loved one stay at home.

**End of Life Concerns:**

It is likely that the elderly patient has begun contemplating their mortality and
considering how to handle their end-of-life affairs. These concerns may include
creating a will, making determinations regarding medical care during
emergencies, designating a power of attorney, resolving debts and grievances, and making funeral arrangements.1 Additionally, some older adults
may experience emotional turmoil as they reflect on their lives and face questions of what happens next. There are many professionals who can assist the caregiver and patient in managing these concerns. Caregivers may seek consultations with financial advisors, spiritual leaders, mental health professionals, physicians, and attorneys as appropriate. The healthcare provider should be
familiar with some local resources that they can share with the patient and caregiver.

**Assessment Tools for Caregiver Burden:**

**Caregiver Burden:7**

1. The Zarit Burden Interview:  Thorough, but time intensive subjective report

2. The Caregiver Strain Index:  Short, yes/no survey that addresses wellness concerns

3. The Caregiver’s Reaction Assessment:  Scaled survey addressing caregiver health, finances, and schedule

**Mental Health:8**

1. PHQ-2:  Two question survey that indicates need for further screening. A score of 4 or higher indicates further screening is necessary.

2. PHQ-9: Follow-up screen to the PHQ-2 to assess whether criteria for depression is met

3. Beck Depression Inventory: Frequently used by mental health professionals to assess symptoms typical of depression

**Strategies for Helping Caregivers:**

1. Connect:  Encourage the caregiver to develop a strong social support network. This may be done by rejuvenating relationships with friends and family, decreasing social isolation, attending religious services, participating in recreational activities, and reaching out to online caregiving networks1,2 (see links below for resources)

2. Plan for breaks:  Make sure there is a backup caregiver available in order for the primary caregiver to handle personal affairs and take breaks from caregiving

3. Self care: Encourage the caregiver to take care of themselves by eating healthy, performing hygiene activities, exercising, and enjoying leisure activities.2

4. Capability:  Determine if the caregiver is physically able to care for the patient1 and help them determine alternative caregivers if they are not able to fully take on this role.

5. Counseling:  Encourage caregivers to seek mental health counseling earl on if they are overwhelmed or experiencing symptoms of anxiety or depression.1,4 Be prepared to refer to a mental health provider or point the caregiver to sources where they can find a provider on their own. Vocational counseling may an important addition to treating psychological issues if caregivers are able to sustain some form of employment and income stream.5

6. Educate:  Provide caregivers with biomechanically appropriate techniques for physically assisting the patient (e.g., transfer
techniques). Additionally, provide caregivers with an understanding of the patient’s condition, a realistic guide to what they make expect including what an emergency or negative reaction to medical intervention may look like, and strategies for assisting with medication management. Caregivers should also know how to recognize signs of burden and burnout in themselves.1 Utilization of formal caregiving training may be appropriate and decrease caregiver burden if available.9

7. Wellness planning: Help the caregiver create healthy strategies for dealing with stress and unexpected situations. This may include guiding them to resources for creating end of life plans for the patient.1 Also, providing tips on exercise that can be done in the home and food that is healthy, cheap, and easy to prepare can assist the caregiver in making healthy choices on a budget and during their hours of caring.2

**Additional Resources**:

http://www.caps4caregivers.org/

http://caregiveraction.org/

https://wellspouse.org/

https://www.caregiving.com/

http://www.apa.org/pi/about/publications/caregivers/practice-settings/assessment/tools/stress-burden.aspx

https://eldercare.acl.gov/Public/Index.aspx

https://www.caregiver.org/
(Champion and Advocacy pages may provide additional support)

http://www.apa.org/pi/about/publications/caregivers/practice-settings/helping-caregivers/index.aspx

https://www.aafp.org/afp/2000/1215/p2613.html

http://www.internationalcarers.org/

**References**

1. Kasuya RT, Polgar-Bailey P, Takeuchi R. Caregiver burden and burnout: a guide for primary care physicians. *Postgraduate Medicine.* 2000;108(7).

2. Sisk RJ. Caregiver burden and health promotion. *Int J Nurs Stud.* 2000;37(1):37-43.

3. Chang HY, Chiou CJ, Chen
NS. Impact of mental health and caregiver burden on family caregivers’ physical health. *Arch Gerontol & Geriatrics.* 2010;50(3):267-71. https://doi.org/10.1016/j.archger.2009.04.006

4. Shaffer KM, Kim Y, Carver CS, Cannady RS. Depressive symptoms predict cancer caregivers’ physical health decline. *Cancer.* 2017;123(21):4277-85. https://doi.org/10.1002/cncr.30835

5. Skaff MM, Pearlin LI. Caregiving: role engulfment and the loss of self. *Gerontologist.* 1992;32(5):656-64.

6. Beach SR, Schulz R, Williamson GM, Miller LS, Weiner MF, Lance CE. Risk factors for potentially harmful informal caregiver behavior. *J Am Geriatr Soc.* 2005;53(2):255-61.

7. DePalma JA. Caregiver burden: resources and research. *Home Health Care Mgmt & Pract.* 2002;14(2):151-2. https://doi.org/10.1177/1084822302014002012

8. http://www.apa.org/pi/about/publications/caregivers/practice-settings/assessment/tools/patient-health.aspx

9. Gelmini G, Morabito B, Braidi G. Educational and formative training reduces stress in the caregivers of demented patients. *Arch Gerontol Geriatr.* 2009;49:119-24. doi:10.1016/j.archger.2009.09.020.