Family Caregiving

Family caregivers provide more than 80% of the long-term care for older adults in this country. Caregiving can be difficult, time-consuming work added on top of 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.

 

A.  Definitions

  1. Family caregiving 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 (Rabarison et al., 2018; Schumacher, Beck, et al., 2006).
  2. Caregiver role transitions: Caregiver role acquisition is a family role transition that occurs through situated interaction as part of a role-making process (Schumacher, 1995). 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, 2015).
  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, 2015; Naylor et al., 2017).
  4. Family caregiving activities 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 IADL (meal preparation, grocery shopping, making telephone calls, and money management; NAC & AARP, 2015; NASEM, 2016). Illness-related activities include managing symptoms, coping with illness behaviors, carrying out treatments, and performing medical or nursing procedures that include an array of medical technologies (Schumacher, Beidler, et al., 2006; Schumacher et al., 2000). Care management activities include accessing resources, communicating with and navigating the healthcare and social services systems, and acting as an advocate (Schumacher et al., 2000). Invisible aspects of care are protective actions the caregiver takes to ensure the older adult’s safety and well-being without the elder’s knowledge (Bowers, 1987; Schumacher, Beck, et al., 2006).
  5. Caregiving roles 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 (Cantor & Little, 1985; Penning, 1990; Tennstedt et al., 1989). 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 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 and lower levels of subjective well-being and physical health (Pinquart & Sörensen, 2006a, 2007; Vitaliano et al., 2003).
  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 their providers (Fredriksen-Goldsen et al., 2011).
  3. Ethnic minority caregivers provide more care, use less formal services, and report worse physical health than White caregivers (Cohen et al., 2017; Cook & Cohen, 2018; Cook et al., 2018; Dilworth-Anderson et al., 2002; NAC & AARP, 2015; Pinquart & Sörensen, 2006a, 2007).
  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; Cuellar, 2002; Dilworth-Anderson et al., 2002; Gitlin et al., 2003; Haley et al., 2004; Pinquart & Sörensen, 2004), but younger or nonspouse caregivers do not respond as well to interventions (Belle et al., 2006; C. C. Lee et al., 2010).
  5. Hispanic and Asian American caregivers exhibit more depression (Gitlin et al., 2003; Pinquart & Sörensen, 2004) and emotional drain (Anthony et al., 2017), particularly among young Hispanic caregivers (C. C. Lee et al., 2010). But Hispanic and African American caregivers report more positive aspects of caregiving (Roth et al., 2015).
  6. Less-educated caregivers report more depression (Buckwalter et al., 1999; Gitlin et al., 2003).
  7. Spouse caregivers report higher levels of depression than nonspouse caregivers (Pinquart & Sörensen, 2004; Pruchno & Resch, 1989), 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; Croog et al., 2006; Flannery, 2002).
  9. Caregivers who lack preparedness for the caregiving role also have increased strain (Archbold et al., 1990, 1992; Moon, 2017; NAC & AARP, 2015).
  10. Caregivers of care recipients who have dementia have more strain and burden (Pinquart & Sörensen, 2003).

PARAMETERS OF ASSESSMENT

A.  Caregiving context

  1. Caregiver relationship with care recipient (spouse, nonspouse; Elliott et al., 2010; Gitlin et al., 2003; NAC & AARP, 2015; Sörensen et al., 2002)
  2. Caregiver roles and responsibilities
    • Duration of caregiving (Sörensen et al., 2002)
    • Employment status (work/home/volunteer; Pinquart & Sörensen, 2004)
    • Household status (number in home, etc.; Pinquart & Sörensen, 2004)
    • Existence and involvement of extended family and social support (Pinquart & Sörensen, 2004)
  3. Physical environment (home, facility; Gitlin et al., 2010; Vitaliano et al., 2003)
  4. Financial status (Vitaliano et al., 2003)
  5. Potential resources that caregiver could choose to use—list (Pinquart & Sörensen, 2004)
  6. Family’s cultural background (Browne et al., 2017; Dilworth-Anderson et al., 2002; Goins et al., 2011)

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 (Pinquart & Sörensen, 2004)
  2. Presence of cognitive impairment—if yes, any behavioral problems (Gitlin et al., 2003; Sörensen et al., 2002)
  3. Presence of mobility problems—assess with single question (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 consultgerirn.org/resources)?

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; Messecar et al., 2011)

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 www.consultgerirn.org/resources)

F.   Caregiver’s physical and mental health status

  1. Self-rated health: single item—asks what the caregiver’s perception of his or her health is (Pinquart & Sörensen, 2006a, 2007).
  2. Health conditions and symptoms
    • Depression or other emotional distress (e.g., anxiety; Pinquart & Sörensen, 2003, 2006a, 2007; Sörensen et al., 2002; see cesd-r.com/cesdr)
    • Reports of burden or strain (Schulz & Beach, 1999; Vitaliano et al., 2003; see Caregiver Strain Index at www.consultgerirn.org/resources—Family Caregiving topic)
  3. Rewards of caregiving
    • List perceived benefits of caregiving (Archbold et al., 1995)
    • 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 content and skills needed to increase preparedness for caregiving (Acton & Winter, 2002; Boltz, Kuzmik, et al., 2018; Farran et al., 2003; Gitlin et al., 2003; Pusey & Richards, 2001; Schumacher, Beidler, et al., 2006; Schumacher et al., 2000; Sörensen et al., 2002).

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

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 (Messecar, Powers, & Nagel, 2008).

D.  Identify the caregiving issues and concerns on which the caregiver wants to work and generate strategies (Acton & Winter, 2002; Boltz, Kuzmik, et al., 2018; Gitlin et al., 2003; Schumacher, Beidler, et al., 2006; Sörensen et al., 2002).

E.  Assist the caregiver in identifying strengths in the caregiving situation (Archbold et al., 1995).

F.   Assist the caregiver in finding and using resources (Archbold et al., 1995; Boltz, Kuzmik, et al., 2018; Farran et al., 2004; Schumacher et al., 2002).

G.  Help caregivers identify and manage their physical and emotional responses to caregiving (Schulz & Beach, 1999). Screen for strain using the MCSI (Onega, 2018).

H.  Use an interprofessional approach when working with family caregivers (Acton & Winter, 2002; Farran et al., 2003, 2004; Gitlin et al., 2003; 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

ADL            Activities of daily living

EAI             Elder Assessment Instrument

IAD             Instrumental activities of daily living

PCGS          Preparedness for Caregiving Scale

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Updated: November 2020

Boltz PhD, RN, GNP-BC, FGSA, FAAN, M., Capezuti PhD, RN, FAAN, E., Zwicker DrNP, APRN, BC, D., & Fulmer PhD, RN, FAAN, T. T. (2020). Evidence-Based Geriatric Nursing Protocols for Best Practice (6th ed.). Springer Publishing. Retrieved November 4, 2020, from https://www.springerpub.com/evidence-based-geriatric-nursing-protocols-for-best-practice-9780826188144.html#description

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