Family Caregiving

 

OVERVIEW

Family caregivers provide more than 80% of the long-term care for older adults in this country (NAC & AARP, 2020). Caregiving can be a difficult, time-consuming work added on top of a job and other family responsibilities. If the caregiver suffers negative consequences from the caregiving role and these are not mitigated, increased morbidity and mortality may result for the caregiver. Not all outcomes from caregiving are negative; there are many caregivers who report rewards from caregiving.

 

BACKGROUND AND STATEMENT OF PROBLEM

A. Definitions

  1. Family caregiving: This is broadly defined and refers to a broad range of unpaid care provided in response to illness or functional impairment to a chronically ill or functionally impaired older family member, partner, friend, or neighbor that exceeds the support usually provided in family relationships (Parmar et al., 2020; Rabarison et al., 2018).
  2. Caregiver role transitions: Caregiver role acquisition is a family role transition that occurs through situated interaction as part of a role-making process (Geary & Schumacher, 2012). This is the process of taking on the caregiving role at the beginning of caregiving or when a significant change in the caregiving context occurs. Role transitions occur when a role is added to or deleted from the role set of a person or when the behavioral expectations for an established role change significantly (NAC & AARP, 2020).
  3. Indicators of healthy caregiver role transitions: The broad categories of indicators of healthy transitions include subjective well-being, role mastery, and well-being of relationships. These are the subjective, behavioral, and interpersonal parameters of health most likely to be associated with healthy role transitions (Geary & Schumacher, 2012; NAC & AARP, 2020; Naylor et al., 2017).
  4. Family caregiving activities: These include assistance with day-to-day activities, illness-related care, care management, and invisible aspects of care. Day-to-day activities include personal care activities (bathing, eating, dressing, mobility, transferring from bed to chair, and using the toilet) and IADLs (meal preparation, grocery shopping, making telephone calls, and money management; NAC & AARP, 2020). Illness-related activities include managing symptoms, coping with illness behaviors, carrying out treatments, and performing medical or nursing procedures. Care management activities include accessing resources, communicating with and navigating the healthcare and social services systems, and acting as an advocate (NAC & AARP, 2020).
  5. Caregiving roles: These can be classified into a hierarchy according to who takes on the bulk of responsibilities versus only intermittent supportive assistance. Primary caregivers tend to provide most of the everyday aspects of care, whereas secondary caregivers help out as needed to fill the gaps (NAC & AARP, 2020). Among caregivers who live with their care recipients, spouses account for the bulk of primary caregivers, whereas adult children are more likely to be secondary caregivers. The range of the family caregiving role includes protective caregiving, like “keeping an eye on” an older adult who is currently independent but at risk, to full-time, around-the-clock care for a severely impaired family member. Healthcare providers may fail to assess the full scope of the family caregiving role if they associate family caregiving only with the performance of tasks.
  6. Caregiver assessment: This refers to an ongoing iterative process of gathering information that describes a family caregiving situation and identifies the particular issues, needs, resources, and strengths of the family caregiver.

B. Etiology and/or epidemiology of risk factors associated with unhealthy caregiving transitions

  1. Just being a caregiver puts an individual at increased risk of higher levels of stress and depression (Luiu et al., 2020) and lower levels of subjective well-being and physical health (NAC & AARP, 2020; Schulz et al., 2020).
  2. Female caregivers on average provide more direct care and report higher levels of burden and depression (Cohen et al., 2017; Cook & Cohen, 2018; Gitlin et al., 2003; Riffin et al., 2019). LGBTQ caregivers report more financial concerns, loneliness, and declining physical health than non-LGBTQ caregivers and are wary of revealing their orientation/gender to providers (Fredriksen-Goldsen, Teri, et al., 2023).
  3. Ethnic minority caregivers provide more care, use fewer formal services, and report worse physical health than White caregivers (Cohen et al., 2017; Cook & Cohen, 2018; Cook et al., 2018; NAC & AARP, 2020).
  4. African American caregivers experience less stress and depression and get more rewards from caregiving than White caregivers (Cohen et al., 2017; Cook et al., 2018; Gitlin et al., 2003; Haley et al., 2004), but younger or nonspouse caregivers do not respond as well to interventions (Belle et al., 2006; Lee et al., 2010).
  5. Hispanic and Asian American caregivers exhibit more depression (Gitlin et al., 2003) and emotional drain, particularly among young Hispanic caregivers (Lee et al., 2010). Hispanic and African American caregivers report more PAC (Liu et al., 2021).
  6. Less-educated caregivers report more depression (Gitlin et al., 2003; Maximiano-Barreto et al., 2022).
  7. Spouse caregivers report higher levels of depression than nonspouse caregivers (Maximiano-Barreto et al., 2022; Ornstein et al., 2019), but appear to benefit more from interventions (Elliott et al., 2010).
  8. Caregivers who have a poor-quality relationship with the care recipient report more strain (Archbold et al., 1990; Shrestha et al., 2022; Yu et al., 2018).
  9. Caregivers who lack preparedness for the caregiving role also have increased strain (Archbold et al., 1990; Lutz et al., 2017; Moon, 2017; NAC & AARP, 2020).
  10. Caregivers of care recipients who have dementia have more strain and burden (Luiu et al., 2020).

PARAMETERS OF ASSESSMENT

A. Caregiving context

  1. Caregiver relationship with care recipient (spouse, nonspouse; Elliott et al., 2010; Gitlin et al., 2003; Maximiano-Barreto et al., 2022; NAC & AARP, 2020; Ornstein et al., 2019; Sörensen et al., 2002)
  2. Caregiver roles and responsibilities
    • Duration of caregiving (Cook et al., 2018; Sörensen et al., 2002)
    • Employment status (work/home/volunteer; Cook & Cohen, 2018)
    • Household status (e.g., number of people in home; Ornstein et al., 2019)
    • Existence and involvement of extended family and social support (Ornstein et al., 2019)
  3. Physical environment (home, facility; Maximiano-Barreto et al., 2022)
  4. Financial status (Maximiano-Barreto et al., 2022)
  5. Potential resources that caregiver could choose to use—list (Maximiano-Barreto et al., 2022)
  6. Family’s cultural background (Browne et al., 2017)

B. Caregiver’s perception of health and functional status of care recipient

  1. List activities care receiver needs help with; include both ADL and IADL (NAC & AARP, 2020; Riffin et al., 2019; Schulz et al., 2020).
  2. Identify the presence of cognitive impairment; if yes, any behavioral problems (Gitlin et al., 2003; Sörensen et al., 2002).
  3. Identify the presence of mobility problems (Archbold et al., 1990).

C. Caregiver preparedness for caregiving

  1. Does caregiver have the skills, abilities, or knowledge to provide care recipient with needed care (see PCGS at hign.org/consultgeri-resources/try-this-series)?

D. Quality of family relationships

  1. The caregiver’s perception of the quality of the relationship with the care receiver (see Mutuality Scale; Archbold et al., 1990; Dellafiore et al., 2018; Karlstedt et al., 2020; Pucciarelli et al., 2016; Shrestha et al., 2022)

E. Indicators of problems with quality of care

  1. Unhealthy environment
  2. Inappropriate management of finances
  3. Lack of respect for older adult (see EAI at hign.org/consultgeri-resources/try-this-series)

F. Caregiver’s physical and mental health status

  1. Self-rated health: single item that asks what the caregiver’s perception of their own health is (Pinquart & Sörensen, 2007)
  2. Health conditions and symptoms
    • Depression or other emotional distress (e.g., anxiety; Pinquart & Sörensen, 2007; Rice et al., 2022; Sörensen et al., 2002; see cesd-r.com/cesdr)
    • Reports of burden or strain (Luiu et al., 2020; Maximiano-Barreto et al., 2022; Schultz et al., 2020)
  3. Rewards of caregiving
    • List perceived benefits of caregiving (Yu et al., 2018)
    • Satisfaction of helping family member
    • Developing new skills and competencies
    • Improved family relationships
  4. Self-care activities for caregiver
    • Attending to own healthcare needs
    • Getting exercise
    • Taking time off
    • Seeking support
    • Getting proper rest and nutrition

NURSING CARE STRATEGIES

A. Identify the content and skills needed to increase preparedness for caregiving (Boltz et al., 2014, 2015, 2018; Gitlin et al., 2003; Hagen et al., 2023; Kuzmik et al., 2021; Petruzzo et al., 2017; Pucciarelli et al., 2016; Sörensen et al., 2002).

B. Form a partnership with the caregiver before generating strategies to address issues and concerns (Boltz et al., 2014, 2015, 2018; Gitlin et al., 2003; Harvath et al., 1994 2022).

C. Invite participation in care while in the hospital using the Family Preferences Index, a 14-item approach to exploring caregivers’ personal choices for participating in the care of hospitalized older adult family members to determine preferences to provide care (Boltz 2023; Messecar et al. 2008).

D. Identify the caregiving issues and concerns on which the caregiver wants to work and generate strategies (Boltz et al., 2014, 2015, 2018; Gitlin et al., 2003; Hagen et al., 2023; Sörensen et al., 2002).

E. Assist the caregiver in identifying strengths in the caregiving situation (Hagen et al., 2023; Liu et al., 2021; Shrestha et al., 2022; Yu et al., 2018).

F. Assist the caregiver in finding and using resources (Boltz et al., 2014, 2015, 2018; Hagen et al., 2023).

G. Help caregivers identify and manage their physical and emotional responses to caregiving (Bom et al., 2018; Luiu et al., 2020; Maximiano-Barreto et al., 2022; Schulz et al., 2020). Screen for strain using the MCSI (Onega, 2023).

H. Use an interprofessional approach when working with family caregivers (Gitlin et al., 2003; Harvath et al., 2022; Sörensen et al., 2002).

EVALUATION OF EXPECTED OUTCOMES

A. Outcomes specific to caregiving transitions

  1. Lower caregiver strain
  2. Decreased depression
  3. Improved physical health

B. Outcomes specific to patient

  1. Quality of family caregiving
  2. Care recipient’s functional status, nutrition, hygiene, and symptom management
  3. Care recipient’s emotional well-being
  4. Decreased occurrence of adverse events such as increased frequency of emergent care

ABBREVIATIONS

AARP       American Association of Retired Persons

ADL          activities of daily living

EAI           Elder Assessment Instrument

IADL         instrumental activities of daily living

NAC          National Alliance for Caregiving

PAC          positive aspects of caregiving

PCGS        Preparedness for Caregiving Scale

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Updated: January 2025

Boltz PhD, RN, GNP-BC, FGSA, FAAN, M., Capezuti, PhD, RN, FAAN, E.A., & Fulmer PhD, RN, FAAN, T. T. (2025). Evidence-Based Geriatric Nursing Protocols for Best Practice (7th ed.). Springer Publishing. Retrieved December 17, 2024, from https://www.springerpub.com/evidence-based-geriatric-nursing-protocols-for-best-practice-9780826152763.html#tableofcontents

Chapter 14, Messecar, D.C. & Tadesse, R. (2025) Family Caregiving for the Older Adult

 

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Lutz, B. J., Young, M. E., Creasy, K. R., Martz, C., Eisenbrandt, L., Brunny, J. N., & Cook, C. (2017). Improving stroke caregiver readiness for transition from inpatient rehabilitation to home. The Gerontologist, 57, 880–889. https://doi.org/10.1093/geront/gnw135.Evidence Level IV.

Mahoney, D. F., Tarlow, B. J., & Jones, R. N. (2003). Effects of an automated telephone support system on caregiver burden and anxiety: Findings from the REACH for TLC intervention study. The Gerontologist, 43(4), 556–567. https://doi.org/10.1093/geront/43.4.556. Evidence Level II.

Márquez-González, M., Romero-Moreno, R., Cabrera, I., Olmos-Albacete, R., Pérez-Miguel, A., & Losada, A. (2020). Tailored versus manualized interventions for dementia caregivers: The functional analysis-guided modular intervention. Psychology and Aging,35, 41–54. http://doi.org/10.1037/pag0000412. Evidence Level V.

Maximiano-Barreto, M. A., Alves, L. C. S., Monteiro, D. Q., Gratao, A. C. M., Pavarini, S. C. I., Luchesi, B. M., & Chagas, M. H. N. (2022). Cultural factors associated with burden in unpaid caregivers of older adults: A systematic review. Health & Social Care in the Community, 30(6), e3629– e3642. https://doi.org/10.1111/hsc.14003. Evidence Level I.

Messecar, D. C., Powers, B. A., & Nagel, C. L. (2008). The Family Preferences Index: Helping family members who want to participate in the care of a hospitalized older adult. American Journal of Nursing, 108(9), 52–59. https://doi.org/10.1097/01.NAJ.0000334527.52341.bd. Evidence Level VI.

Moon, M. (2017). The unprepared caregiver. The Gerontologist,57(1), 26–31. https://doi.org/10.1093/geront/gnw080.Evidence Level V.

Moses, S. (2020, June). Caregiver support in Colorado: Lessons learned from an evaluation of the Tailored Caregiver Assessment and Referral (TCARE) Process. (Report No. 19-09A). Colorado Evaluation and Action Lab at the University of Denver. https://coloradolab.org/documents/caregiver-support-in-colorado-lessons-learned-from-an-evaluation-of-the-tailored-caregiver-assessment-and-referral-tcare-process/

National Alliance for Caregiving & American Association of Retired Persons. (2020). Caregiving in the U.S. National Alliance for Caregiving. https://www.caregiving.org/wp-content/uploads/2020/06/AARP1316_RPT_CaregivingintheUS_WEB.pdf. Evidence Level IV.

Naylor, M. D., Shaid, E. C., Carpenter, D., Gass, B., Levine, C., Li, J., Malley, A., McCauley, K., Nguyen, H. Q., Watson, H., Brock, J., Mittman, B., Jack, B., Mitchell, S., Callicoatte, B., Schall, J., & Williams, M. V. (2017). Components of comprehensive and effective transitional care. Journal of the American Geriatrics Society,65, 1119–1125. https://doi.org/10.1111/jgs.14782.Evidence Level IV.

Onega, L. L. (2023). The Modified Caregiver Strain Index (MCSI). https://hign.org/consultgeri/try-this-series/modified-caregiver-strain-index-mcsi. Evidence Level V.

Ornstein, K. A., Wolff, J. L., Bollens-Lund, E., Rahman, O. K., & Kelley, A. S. (2019). Spousal caregivers are caregiving alone in the last years of life. Health Affairs, 38(6), 964–972. https://doi.org/10.1377/hltha ff.2019.00087. Evidence Level V.

Parmar, J., Anderson, S., Duggleby, W., Holroyd-Leduc, J., Pollard, C., & Brémault-Phillips, S. (2020). Developing person-centered care competencies for the healthcare workforce to support family caregivers: Caregiver centered care. Health and Social Care in the Community, 29(5), 1327–1338. https://doi.org/10.1111/hsc.13173. Evidence Level V.

Petruzzo, A., Paturzo, M., Buck, H. G., Barbaranelli, C., D’Agostino, F., Ausili, D., Alvaro, R., & Vellone, E. (2017). Psychometric evaluation of the Caregiver Preparedness Scale in caregivers of adults with heart failure. Research in Nursing & Health, 40, 470–478. https://doi.org/10.1002/nur.21811.Evidence Level II.

Pinquart, M., & Sörensen, S. (2006). Helping caregivers of persons with dementia: Which interventions work and how large are their effects? International Psychogeriatrics, 18(4), 577–595. https://doi.org/10.1017/S1041610206003462.Evidence Level I.

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Pucciarelli, G., Buck, H. G., Barbaranelli, C., Savini, S., Simeone, S., Juarez-Vela, R., Alvaro, R., & Vellone, E. (2016). Psychometric characteristics of the mutuality scale in stroke patients and caregivers. The Gerontologist,56(5), e89–98. https://doi.org/10.1093/geront/gnw083. Evidence Level IV.

Rabarison, K. M., Bouldin, E. D., Bish, C. L., McGuire, L. C., Taylor, C. A., & Greenlund, K. J. (2018). The economic value of informal caregiving for persons with dementia: Results from 38 states, the District of Columbia, and Puerto Rico, 2015 and 2016 BRFSS. American Journal of Public Health, 108(10), 1370–1377. https://doi.org/10.2105/AJPH.2018.304573. Evidence Level I.

Radloff, L. (1977). The CES-D scale: A self-report depression scale for research in the general population. Applied Psychological Measurement, 1(3), 385–401. https://doi.org/10.1177/014662167700100306. Evidence Level II.

Reinhard, S. C., & Ryan, E. (2017). From home alone to the CARE Act: Collaboration for family caregivers. American Association of Retired Persons. Evidence Level V.

Reinhard, S. C., Young, H. M., Ryan, E., & Choula, R. B. (2019). The CARE Act implementation: Progress and promise. American Association of Retired Persons. Evidence LevelV.

Rice, J. D., Sperling, S. A., Brown, D. S., Mittleman, M. S., & Manning, C. A. (2022). Evaluating the efficacy of TeleFAMILIES: A telehealth intervention for caregivers of community-dwelling people with dementia. Aging & Mental Health, 26(8), 1613–1619. https://doi.org/10.1080/13607863.2021.1935462. Evidence Level IV.

Riffin, C., Van Ness, P. H., Wolff, J. L., & Fried, T. (2019). Multifactorial examination of caregiver burden in a national sample of family and unpaid caregivers. Journal of the American Geriatrics Society, 67(2), 277–283. https://doi.org/10.1111/jgs.15664. Evidence Level II.

Roth, D. L., Sheehan, O. C., Haley, W. E., Jenny, N. S., Cushman, M., & Walston, J. D. (2019). Is family caregiving associated with inflammation or compromised immunity? A meta-analysis. The Gerontologist, 59(5), e521–e534. https://doi.org/10.1093/geront/gnz015. Evidence Level I.

Schulz, R., Beach, S. R., Czaja, S. J., Martire, L. M., & Monin, J. K. (2020). Family caregiving for older adults. Annual Review of Psychology, 71, 635–659. https://doi.org/10.1146/annurev-psych-010419-050754. Evidence Level I.

Schulz, R., Burgio, L., Burns, R., Eisdorfer, C., Gallagher-Thompson, D., Gitlin, L. N., & Mahoney, D. F. (2003). Resources for Enhancing Alzheimer’s Caregiver Health (REACH): Overview, site-specific outcomes, and future directions. The Gerontologist, 43(4), 514–520. https://doi.org/10.1093/geront/43.4.514. Evidence Level V.

Shrestha, S., Richey, S., Lipovac-Dew, M., Kunik, M. E., Stanley, M. A., Ramsey, D., & Amspoker, A. B. (2022). An examination of positive and negative dementia caregiving experiences. Clinical Gerontologist,45(5), 1263–1272. https://doi.org/10.1080/07317115.2020.1868033. Evidence Level I.

Sokas, C. M., Hu, F. Y., Dalton, M. K., Jarman, M. P., Bernacki, R. E., Bader, A., Rosenthal, R. A., & Cooper, Z. (2022). Understanding the role of informal caregivers in postoperative care transitions for older patients. Journal of the American Geriatrics Society,70(1), 208–217. https://doi.org/10.1111/jgs.17507. Evidence Level I.

Sörensen, S., Pinquart, M., & Duberstein, P. (2002). How effective are interventions with caregivers? An updated meta-analysis. The Gerontologist, 42(3), 356–372. https://doi.org/10.1093/geront/42.3.356. Evidence Level I.

Teahan, A., Lafferty, A., McAuliffe, E., Phelan, A., O’Sullivan, L., O’Shea, D., & Fealy, G. (2018). Resilience in family caregiving for people with dementia: A systematic review. International Journal of Geriatric Psychiatry, 33(12), 1582–1595. https://doi.org/10.1002/gps.4972. Evidence Level I.

Toles, M., Colon-Emeric, C., Naylor, M. D., Asafu-Adjei, J., & Hanson, L. C. (2017). Connect-home: Transitional care of skilled nursing facility patients and their caregivers. Journal of the American Geriatrics Society, 65, 2322–2328. https://doi.org/10.1111/jgs.15015. EvidenceLevel IV.

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Werner, N. E., Stanislawski, B., Marx, K. A., Watkins, D. C., Kobayashi, M., Kales, H., & Gitlin, L. N. (2017). Getting what they need when they need it. Identifying barriers to information needs of family caregivers to manage dementia-related behavioral symptoms. Applied Clinical Informatics, 8, 191–205. https://doi.org/10.4338/ACI-2016-07-RA-0122. Evidence Level IV.

Wilks, S. E., Spurlock, W. R., Brown, S. C., Teegen, B. C., & Geiger, J. R. (2018). Examining spiritual support among African American and Caucasian Alzheimer’s caregivers: A risk and resilience study. Geriatric Nursing,39, 663–668. https://doi.org/10.1016/j.gerinurse.2018.05.002. Evidence Level IV.

Wisniewski, S. R., Belle, S. H., Coon, D. W., Marcus, S. M., Ory, M. G., Burgio, L. D., Burns, R., Schulz, R., & REACH Investigators. (2003). The Resources for Enhancing Alzheimer’s Caregiver Health (REACH): Project design and baseline characteristics. Psychology and Aging, 18(3), 375–384. https://doi.org/10.1037/0882-7974.18.3.375. Evidence Level II.

Wolff, J. L., Mulcahy, J., Huang, J., Roth, D. L., Covinsky, K., & Kasper, J. D. (2018). Family caregivers of older adults, 1999–2015: Trends in characteristics, circumstances, and role-related appraisal. The Gerontologist, 58(6), 1021–1032, https://doi.org/10.1093/geront/gnx093.Evidence Level I.

Yu, D. S. F., Cheng, S. T., & Wang, J. (2018). Unravelling positive aspects of caregiving in dementia: An integrative review of research literature. International Journal of Nursing Studies, 79, 1–26. https://doi.org/10.1016/j.ijnurstu.2017.10.008. Evidence Level I.

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