Journal of Gerontological Nursing

Feature Article 

Resilience in Bereaved Caregivers of Persons With Dementia

Elizabeth Jane Jensen, BSN, RN; Katherine P. Supiano, PhD; Marilyn Luptak, PhD; Troy Anderson, PhD; Cynthia Beynon, MSN, RN

Abstract

The purpose of the current study was to identify characteristics of resilience using surveys in 50 bereaved caregivers for persons with dementia who lost their care recipient in the past 6 months. Surveys were reviewed and sorted as demonstrating a resilient grieving process or a problematic grieving process. Resilience was defined as the ability to adapt in a positive direction, with adequate support resources in place despite destabilizing experiences. Following initial review and sorting, 19 resilient surveys were coded and grouped according to phrases. Using the qualitative descriptive analysis process, five themes of resilience were derived from these surveys. Themes of resilience included: Relationships, Spirituality, Formal Support, Honor, and Relief. The use of these themes was noted to be supportive of a positive grief experience. The information provided in the current study serves to inform clinical nurses on resilient attributes to support bereaved caregivers for persons with dementia to improve grief outcomes. [Journal of Gerontological Nursing, 46(1), 30–36.]

Abstract

The purpose of the current study was to identify characteristics of resilience using surveys in 50 bereaved caregivers for persons with dementia who lost their care recipient in the past 6 months. Surveys were reviewed and sorted as demonstrating a resilient grieving process or a problematic grieving process. Resilience was defined as the ability to adapt in a positive direction, with adequate support resources in place despite destabilizing experiences. Following initial review and sorting, 19 resilient surveys were coded and grouped according to phrases. Using the qualitative descriptive analysis process, five themes of resilience were derived from these surveys. Themes of resilience included: Relationships, Spirituality, Formal Support, Honor, and Relief. The use of these themes was noted to be supportive of a positive grief experience. The information provided in the current study serves to inform clinical nurses on resilient attributes to support bereaved caregivers for persons with dementia to improve grief outcomes. [Journal of Gerontological Nursing, 46(1), 30–36.]

Luthar, Cicchetti, and Becker (2000) defined resilience as “a dynamic process encompassing positive adaptation within the context of significant adversity” (p. 543) and noted two conditions implied in this definition: “(a) exposure to significant threat or severe adversity; and (b) the achievement of positive adaptation despite major assaults on the developmental process” (p. 543). Rutter (2006) indicated resilience is “used to refer to the finding that some individuals have a relatively good psychological outcome despite suffering risk experiences that would be expected to bring about serious sequelae” (p. 1). Each of these definitions suggests that resilience is adaptive, dynamic, and changes over time in reaction to different life experiences.

Grief that accompanies the loss of a family member is a common experience. Yet, grief can be experienced differently by those who have been in the role as caregiver for the deceased individual. A study on the effectiveness of psychosocial interventions on addressing grief by Wilson et al. (2016) defined a family caregiver as “a family member or friend who provides unpaid personal care, support, and assistance” (p. 809). Wilson et al. (2016) further reported that these family caregivers experience two forms of loss over the course of care and bereavement of a family member with dementia. The first form is anticipatory grief or pre-grief, which includes the loss of personhood and a sense of who they are from the family carers' perspective (Wilson et al., 2016) as well as the loss of companionship. Wilson et al. (2016) indicated the second form comes with the actual loss of the family member they were caring for and includes the “loss in the quality of the relationship, intimacy, memory, communication, social interaction, health status, and opportunities to resolve issues from the past” (p. 809). Ultimately, Wilson et al. (2016) found that a variety of interventions may be required based on caregivers' individual needs and risk factors.

In a review of grief, Crunk, Burke, and Robinson (2017) provided an overview of forms of grief including integrated grief, adaptive grief, and complicated grief. They noted that each person's experience with bereavement is different; therefore, there is no “normal” grief, but more commonly people experience an adaptive grief that involves an attenuation of grief symptoms over time (Crunk et al., 2017). Grief is the psychological response to bereavement, which includes the feelings, thoughts, and emotions that accompany the experience of loss (Shear, 2012; Shear et al., 2011). Grief can be described as a spectrum with varying degrees and symptoms. Complicated grief is characterized by overwhelming, debilitating grief that lasts well beyond the first 6 months post-loss, frequently extending for years. However, it is more common for people to experience adaptive grief that resolves into integrated grief. Integrated grief is the incorporation of the experience of death into a new life so that caregivers and family members can move forward with their lives without the deceased (Shear, 2012). Successfully managing such changes requires a level of resilience and coping skills. When individuals are unable to proceed toward integrated grief, they may enter complicated grief, which comes with debilitating and potentially life-threatening consequences (Crunk et al., 2017). Understanding the risk factors and healthy and/or unhealthy responses of caregivers to loss of a family member is an important part of establishing appropriate interventions for preventing complicated grief.

Caregivers experience both positive and negative responses to the stress of caregiving. Lewis, Hepburn, Narayan, and Kirk (2005) suggested that the characteristics of caregivers' perspectives on their role, including “relationship continuity and caregivers' sense of gratification, frustration, and rewards in the caregiving role” (p. 341), influence their response to stress and their ability to cope. Their study, which collected qualitative and quantitative data from interviews of 132 spouse caregivers, identified four perspectives of caregivers—relational, instrumental, reactive, and role acquiring. Lewis et al. (2005) reported that caregivers of the relational perspective described their caregiving experience based on the relationship and bond with their spouse. Instrumental perspective caregivers described the logistics and work associated with caregiving. Reactive perspective caregivers reflected on how dementia had changed their spouse and the impact that it had on their relationship. The smallest group described in the study was the role acquiring perspective. These caregivers focused their responses on the skills they had developed in caring for their spouse. Caregivers with relational perspective “verbaliz[ed] less distress and more positive coping and engagement with their spouses” (Lewis et al., 2005, p. 343). Overall, caregivers in the relational perspectives category scored higher than those with other perspectives in terms of coping with grief. Findings from this study show that caregivers differ in the way they perceive caregiving and therefore have different needs. The knowledge that caregivers with relational perspectives experience fewer negative responses to caregiving aids in recognizing resilient caregiver characteristics. This information can help adapt interventions to apply more to caregiver needs.

The Scott and White Grief Study–Phase 2, initially focused on what factors contribute to complicated grief (Gamino, Sewell, & Easterling, 2000). Following the initial study, Gamino et al. (2000) restructured their analysis to evaluate what factors contribute to people who “adapt well despite complications” (p. 634) and display characteristics of resilience. The study evaluated three factors from the literature that were found to have positive associations with positive grief outcomes, including a positive perspective on life adversity, a chance to say goodbye, and spiritual or religious support, and incorporated the theoretically derived factors with study findings. This evaluation found that some people reported “both pain in their bereavement as well as personal growth” (Gamino et al., 2000, p. 652), supporting the theory that adaptive grief includes loss-oriented and restorative-oriented behaviors at various times. This study found that individuals who had a perspective of growth following loss of a family member had “positive changes in self-perception,” closer family relationships, and a change in their life philosophy (Gamino et al., 2000, p. 633). Their work suggested that individuals were more resilient when they took an active approach by engaging others or engaging their environment in the grieving process. Recognizing the impact of positive perspectives, a chance to say goodbye, and spiritual support on outcomes allows these factors to be integrated into bereavement support.

Among health care professionals, nurses often have the unique position of being present with patients and family members at the end of life. Smith-Stoner (2011) emphasized the importance of this presence and the need for appropriate interventions in facilitating this transition for patients and families. The silver hour refers to the last moments of a patient's life and the first moments after death (Smith-Stoner, 2011) and is defined as the 30 minutes prior to death and the 30 minutes following death. In this crucial time frame, Smith-Stoner (2011) argued that patients have a “need for coordinated, evidence-based, patient-centered care” (p. 1). Patient-centered care during this time refers to developing and following a plan that is mutually agreed upon by the patient at the end of life, the health care team, and the patient's family members who provide the best care by following the preferences of the patient (Smith-Stoner, 2011). Understanding this crucial silver hour enables nurses to better tailor care to patients to improve transition and provide necessary support to the family at the time of death.

Although more research is emerging about effective coping and patterns of resilience in bereaved family caregivers, less attention has focused on the unique needs of bereaved family caregivers of persons with dementia. Being aware of the unique needs of family caregivers of persons with dementia, risk factors for complicated grief, and the protective nature of resilience found in many family caregivers is a responsibility of bedside nurses and will better equip them to assess family coping and provide optimal support in the transition from caregiving to bereavement.

Method

Study Design

The current study was a qualitative descriptive inquiry (Sandelowski, 2000, 2010) investigating the positive bereavement experience of family caregivers whose care recipient died within 6 months before data collection. Findings reported are one component of a larger research study “Group Support for Dementia Caregivers at Risk for Complicated Grief,” a project designed to adapt complicated grief group therapy into pre-loss group support for those soon-to-be bereaved family caregivers of persons with dementia at risk for complicated grief.

Participants

For the larger study, the authors recruited 100 study participants from two established research participant registries, the Alzheimer's Association TrialMatch® and ResearchMatch®—50 bereaved caregivers whose care recipient died approximately 6 months earlier, and 50 caregivers of living care recipients with a life expectancy ≤6 months. The authors chose 6 months post-death for bereaved participants, as that is approximately when normal grief transitions toward integrated, healthy grief. The authors chose 6 months pre-death for those awaiting the death of a care recipient, as it reflects accepted hospice eligibility.

Participants completed an online survey questionnaire including demographic questions; the pre-loss Inventory of Complicated Grief-revised (Prigerson et al., 1995) in prospective grievers; the Inventory of Complicated Grief-revised in retrospective grievers; the preparedness question (How prepared are/were you for the death of your care recipient?) (Hebert, Dang, & Schulz, 2006); self-reported health status (Would you say that in general, your health is excellent, very good, good, fair or poor?); Generalized Anxiety Disorder-2 (Kroenke et al., 2007) scale; Patient Health Questionnaire-2 (Kroenke, Spitzer, & Williams, 2003); and open-ended questions regarding death preparedness, optimal death, and relationship quality. Upon completion of the survey, participants received a $10 gift card by e-mail.

Data reported above are a subset of the larger dataset and comprise a qualitative analysis of bereaved caregivers of persons with dementia and their experiences with grief. Data were derived from post-loss interviews to understand the early grieving experience of caregivers.

Analytic Approach

The 50 open-ended survey questions of bereaved family caregiver respondents were analyzed using qualitative descriptive analysis, a method developed by Sandelowski (2000) which emphasizes a “data-near approach,” one that accepts the respondent's statement as an accurate representation of his/her experience. Descriptive qualitative analysis provides a “low interference account” of the narratives provided by study participants (Sandelowski, 2000, p. 78).

The qualitative data analysis process began by extracting the responses to the two open-ended questions, along with respondents' demographic data, and importing them into QSR International® NVivo® for Windows® version 10 for review, coding, and analysis. The process involved multiple readings of the responses individually by the second, third, and fourth authors (K.P.S., M.L., T.A.) to establish survey completion. After subsequent review of responses in NVivo by the first author (E.J.J.), each statement was categorized as evidence of a resilient grieving process (i.e., participant perception of grief improving), or a problematic grieving process (i.e., grief remains distressing and does not appear to be improving). This review generated a subset of 19 participants categorized as experiencing resilient grief at the time of survey completion. Data from these participants were coded at the level of phrases, so each line of text often had more than one code assigned, and multiple codes could be assigned to the same statements. A list of structural codes was generated (Saldana, 2009) and used in the primary phase of coding to categorize and organize segments of data by content and concept. These initial codes based on similarity of phrases presented in the narratives were grouped in accordance of shared topics to produce condensed themes. Analytic notations were made (E.J.J.) to identify themes and meanings related to the family caregivers' experiences of caregiving, loss, and grief.

The next step in adhering to standards of qualitative scientific rigor was a review of codes and themes. The first two authors (E.J.J., K.P.S.) subsequently reviewed the codes and themes, followed by a review by the entire research team. The first two authors then adjudicated any discrepancies in assigned codes.

Selection of supporting quotations was based on representing instances of patterns of meaning in identified content themes (Charmaz, 2007; DeCuir-Gunby, Marshall, & McCulloch, 2011). The authors conducted the current study according to the Standards for Reporting Qualitative Research (O'Brien, Harris, Beckman, Reed, & Cook, 2014). A brief study of rigor findings is presented in Table 1 (Barusch, Gringeri, & George, 2011).

Rigor Table

Table 1:

Rigor Table

Results

Of the subset of post-loss respondents completing the survey, 19 met review criteria for a positive experience with grief. Demographic characteristics of these respondents are summarized in Table 2. Respondents were largely female, Caucasian, and primarily adult children and grandchildren. One half of respondents reported that their family member died with hospice care and one half died without hospice care.

Participant Demographics (N = 19)

Table 2:

Participant Demographics (N = 19)

Five themes of resilient grief were discerned through analysis: Relationships, Spirituality, Formal Support, Honor, and Relief. These categories reflect the main themes of resilience found through coding these positive grief narratives and are summarized and defined in Table 3.

Narrative Themes Found in Caregivers' Responses

Table 3:

Narrative Themes Found in Caregivers' Responses

Relationships

The theme of Relationships included narratives that mentioned family and friend involvement in caregivers' processes of grief. These narratives reflect that the degree of strength and support present in caregivers' relationships with their deceased care recipient as well as the support they received from their relationships with friends and family was supportive of a positive and healthy bereavement. One such narrative described the experience a caregiver had in the last few days with her father and family:

My dad became acutely ill with aspirate pneumonia, so that we had 5 days as a family to come together and we kept a vigil (per se) that he was never left alone, most of the time there were more than one of us there 24/7. We had time together individually with him and as a family—many memories, stories shared in the middle of the night—I cherish that time.

Another narrative described the strength of a caregiver's relationship with her great grandmother. This caregiver said:

My relationship with my great grandmother will forever be the best possible. I usually talk to her before sleep. I will never forget about her. I know that she will always look after me.

These narratives and several others demonstrate that family and friend support during the loss of a loved one can provide stability, shared experience, and companionship supportive of resilience and a positive grieving process.

Spirituality

The theme of Spirituality included narratives that verbalized faith, spirituality, or religion involved in caregivers' grief. These narratives described spirituality as a positive influence in response to loss and coping with grief. For example, one caregiver described an experience she had with her family member prior to her passing:

In the second hospital, one day my parents went to visit her, and she was very happy and seemed that she will recover once again. My parents could not imagine why she was so happy, when she said, “Imagine, I was just with my sweet Jesus and [everything] up there is so beautiful and peaceful. I cannot wait to be with him.” This is what helped me a lot. Knowing that her constant faith will help her to have a peaceful death, helped a lot. She was a very religious person.

This caregiver's knowledge of her family member's faith was a strength to her and supportive of positive grief.

Formal Support

The theme of Formal Support included narratives from caregivers who expressed finding strength and support through hospice, counseling, therapy groups, education, and other forms of formal support in their grieving process. Accessing these resources demonstrates a desire to move forward and accept help. One narrative addressed the resources a caregiver accessed during her grieving process:

I have received bereavement counseling from a counseling service and spiritual counseling from my pastor. It has helped me deal with so many lost in my life.

Similarly, another caregiver noted that:

Having hospice there constantly during the last days, explaining and helping with everything as it occurred was perfect. Hospice provided support and grief counseling. After 3 years, they were like family.

In both examples, caregivers found strength and stability from formal support prior to and during bereavement.

Honor

The theme of Honor included narratives from caregivers who felt strength and peace in knowing that they honored their family member through their periods of reflection, the funeral arrangements, honoring care recipients' wishes, and taking time to honor their life. Knowing they honored their care recipient gave these caregivers comfort and was supportive of positive grief. For example, one caregiver stated:

After my mother died, my two daughters and I went through all the albums to assemble the pictures and what the captions would be. This was really nice as we relived all the fun times with Mom, Grandma while we chose the pictures and text for the videos. My daughters were thankful for the wake. Grandma was fixed up and looked like they remembered her always well dressed. My daughter bought her a new outfit and matching nail polish because my mother always looked chic. My mother liked to write. I found one journal and read it at the funeral. My niece and my youngest daughter gave beautiful eulogies at the funeral. My daughter's was funny and made us laugh as usual.

The experiences described in this narrative demonstrate a great deal of honor and respect in the preparations.

Relief

The theme of Relief included narratives that verbalized relief of suffering for care recipients and relief from the stress of caregiving. These narratives reflected that the feeling of relief aided in a positive grieving process. One such narrative described what helped a caregiver's family in their grief. This caregiver said that her family was aided in their “belief that death ends suffering. Since all three of us feel the same way, we are a comfort to each other.” Another caregiver reflected that “I am comfortable with my grief because I know she is no longer suffering.” Recognizing relief following the loss of a family member helped these individuals maintain a positive perspective on a difficult situation.

Discussion

Nurses are in the unique position of being present with patients and families at the end of life, which gives them the opportunity to guide and influence families' ability to cope with grief. Nurses can recognize and respond to the five main themes of resilience identified in the current study (Relationships, Formal Support, Spirituality, Honor, and Relief), and affirm positive uses or redirect negative uses. By assessing the family's current situation, nurses can determine what resources are available to the family and offer guidance to assist them in accessing additional appropriate resources. These resources include formal support, such as counseling services or group therapy, and spiritual support, such as chaplain services. Nurses can encourage family support by providing time for family to gather, share stories, talk with their family member, and be together. The silver hour provides time for the family to honor the wishes of his/her family member and honor his/her legacy. Nurses can aid in this moment by providing patient-centered care consistent with the wishes of the patient. As trusted health professionals, families will look to nurses for accurate information regarding their family member's status. Nurses should maintain clear communication and education with the family about death. A lack of clarity in these conversations can be damaging.

Some attributes of resilience may be present prior to the event of death, whereas others may need to be gently introduced. To respond appropriately to the needs of the family, nurses must distinguish which of these resilience attributes were present and which are new concepts for the family. For example, the family's mindset surrounding death may be influenced by their religious beliefs, in which case assessment of resources and evaluating desire for additional support would be an appropriate intervention. During such a sensitive time, the assessment skills of nurses are necessary to appropriately influence the family's response to death and the early moments of their grief.

Limitations

The current study evaluated the bereavement experience of family caregivers of persons with dementia at one point in time and is therefore limited in encompassing the development of these resilience components over time. Despite the authors' inability to evaluate the entire grief experience, the current study informs nursing practice at the time of care recipients' death and in the early days to months of mourning. This is an important area for further nursing research in the acute care setting and subsequent referral to palliative and hospice care, potentially facilitating effective nurse-to-nurse transitions of care.

Conclusion

Grief outcomes for bereaved family caregivers in the current study were influenced by relationships, formal support, spirituality, honor, and relief. These five themes reflect the variable nature of resilient grief before, during, and after the death of a family member. Through nursing involvement, the potential for resilience can be introduced and supported. The current study provides nurses with guidance on how to structure patient care during end of life. Nurses' observation and affirmation of the potential for resilience in family caregivers as they attend to their family member with dementia at end of life can help families form resilience and reduce the risk for poor bereavement outcomes. Nurses should listen and respond to how the family is reacting to the loss and affirm positive responses while avoiding comments or actions that may undermine resilience. In doing so, nurses have the capacity to enhance family resilience and greatly improve grief outcomes.

References

Rigor Table

Area of RigorDescription
CredibilityRecord and transcribe interview segments verbatim and review for accuracy; compare to principal investigator memos; team debriefing of emerging themes and categories, and interpretation of the data; codes reviewed by the fidelity evaluation clinician not involved in treatment. Negative case review by research team.
AuditabilityRecord retention of transcripts, codes, code changes, and memos about team decisions.
ConfirmabilityMaintain objectivity or neutrality of the data using NVivo® 10 to document systematic collection of materials, data, and conclusions.
TransferabilityProvide enough descriptive data to support interpretations and evaluate applicability to other participants and populations.
DependabilityCommunicate regularly with the research team, advisors, and external consultants.

Participant Demographics (N = 19)

Demographicn (%)
Caregiver age (years)
  20 to 7918 (95)
  ≥801 (5)
Care recipient age (years)
  41 to 703 (16)
  71 to 805 (26)
  81 to 906 (32)
  >904 (21)
  Unknown1 (5)
Caregiver gender
  Female15 (79)
  Male4 (21)
Care recipient gender
  Female14 (74)
  Male3 (16)
  Unknown2 (10)
Relation to care recipient
  Child7 (37)
  Grandchild5 (26)
  Spouse/significant other1 (5)
  Sibling2 (11)
  Other family member3 (16)
  Friend1 (5)
Caregiver race
  White/Caucasian12 (63)
  Black/African American3 (16)
  Asian1 (5)
  Native American1 (5)
  Multiracial1 (5)
  Pacific Islander0
  Unknown1 (5)
Caregiver overall health
  Excellent8 (42)
  Very good6 (32)
  Good5 (26)
Type of dementia
  Alzheimer's8 (42)
  Unspecific4 (21)
  Other (i.e., traumatic brain injury, stroke)7 (37)
Hospice
  Yes10 (53)
  No9 (47)

Narrative Themes Found in Caregivers' Responses

Theme/CodeDefinition
Relationships
  Family/friend support   Relationship strength/continuity Distraction HumorVerbalized strength and support from caregivers' relationship with the care recipient or support from relationships with family and friends. This category also includes those who expressed a strengthening of relationships through the grieving process.
Spirituality
  Spirituality   Counseling/therapyMention of religion, faith, and spirituality aiding in their response to loss and their grieving process.
Formal support
  Counseling/hospice   Previous experienceReflects support found in counseling, hospice, therapy, physician education, and other forms of formal support in the grieving process.
Honor
  Reflection/memories   Fulfilling life   Honored wishes   Personal growthVerbalized that they honored their family member in their periods of reflection, the funeral arrangements, honoring the care recipient's wishes, and taking time to honor the care recipient's life. Knowing they honored the care recipient gave them comfort and was supportive of positive grief.
Relief
  End of sufferingVerbalized relief of suffering for the care recipient and relief from the stress of caregiving. The feeling of relief aided in a positive grieving process.
Authors

Ms. Jensen is Intensive Care Nurse, University of Utah Healthcare; Dr. Supiano is Associate Professor, and Ms. Beynon is Assistant Professor, Weber State University School of Nursing; and Dr. Luptak is Associate Professor Emerita, and Dr. Anderson is Associate Professor, University of Utah College of Social Work, Salt Lake City, Utah. Ms. Beynon is also PhD Student, University of Utah College of Nursing, Salt Lake City, Utah.

The authors have disclosed no potential conflicts of interest, financial or otherwise. The current project was funded by the Alzheimer's Association (AARG-17-503706).

Address correspondence to Elizabeth Jane Jensen, BSN, RN, Intensive Care Nurse, University of Utah Healthcare, 10 South 2000 East Room 3640, Salt Lake City, UT 84112; e-mail: ellie.jensen@utah.edu.

Received: April 13, 2019
Accepted: August 09, 2019

10.3928/00989134-20191022-02

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