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Bereavement - Synthesis

Introduction

The terms grief and bereavement are often used interchangeably and are not always clearly defined in the literature. [1] Grief for older people can often be associated with loss due to ageing such as reduced functionality or decline in health status.

The terms bereavement and mourning are closely related to grief, but they have slightly different meanings. Bereavement is the period of grieving experienced by family and friends after a loved one has died. Mourning is the outward expression of sorrow for the loss, often influenced by cultural customs and rituals. Grief is the internal process of responding to actual or perceived losses and it can affect all parts of a person’s life. [2-4] In some literature, bereavement is a term used to describe the loss of loved one due to death. [1]

Within the synthesis of evidence on the topic of bereavement and grief nine systematic reviews [1,3,5-11] and two guidelines [12,13] were retrieved from the searches. Three of these reviews were in the context of Alzheimer’s and related dementia [1,5,6] and made some reference to residential aged care context. Five were focused on carers of people with cancer [7] or more generalised to older adults and experiences of bereavement, [3,8-10] and one focused on bereavement in palliative care context. [11]
 

Quality Statement

Overall the quality of the systematic reviews were generally acceptable [3,5-9] with only three papers scoring poorly due to their lack of assessment of the quality of studies included for review or reporting on methodology. [1,10,11]

 

Evidence Synthesis

Widowhood, in the western world, is often characterised by women being affected more often, at a younger age and for longer time periods than men. Losses such as failing health and increasing dependence on others may accentuate partner/conjugal bereavement in older adults. [8] Even before a loss, older adults face disruption to daily routines and potentially changes to their role in the household. This can occur particularly in caring for a person with a degenerative condition such as dementia. A review by Naef et al states that bereaved older adults have higher rates of institutionalisation, experience more depression and have an increased mortality risk compared to non-bereaved peers. [8] The theory that grief is linear and ends with resolution has been replaced with the proposition that grief requires a complex coping process and is inherently about learning to reconstruct life’s meaning following a loss. [8] However the bereavement process, particularly in older adults, remains an area where more understanding is required.
 

Key Themes

  • Grief during caregiving
  • Grief over time - anticipatory and complicated grief
  • Interventions in coping with grief and bereavement
  • Bereavement and grief after loss


Grief during caregiving

Grief is a normal but complex psychological and emotional reaction to loss [5,6]

Approximately 70% of all deaths involve chronic or life-limiting conditions such as cancer, dementia or organ failure. [3] Serious and prolonged illness can cause challenges for the person and the carer including confrontation with health deterioration, loss of future plans and uncertainty. Losses occurring during the illness trajectory present a high risk for onset of anticipatory grief. [3]

Emotions experienced as a result of grief can include loneliness, sadness, pain, remorse, self-blame, anger and betrayal. [5,6,8] Anticipatory grief was first described in Freud’s grief work hypothesis and the necessity of relinquishing bonds within a psychoanalytic theoretical frame. [3] From the 1970s this was a phenomenon seen in carers receiving a forewarning of impending death as opposed to bereavement by sudden death. [3] The definition of anticipatory grief has been hotly debated since then and theories have been put forward that it should be examined as a risk factor for complicated grief after loss. The literature is yet to offer consensus on whether anticipatory grief worsens or relieves bereavement symptoms in family carers. [3]

In the reviews by Chan et al. [5] and Large et al., [6] the losses of intimacy and companionship, personal freedom, loss of identity, wellbeing and control were strongly associated with the anticipatory grief of carers of people with dementia. However, across the literature it appears that spousal carers are generally more likely to accept the illness than adult children carers. [1,5,8] The degree to which psychological distress during bereavement is experienced may also be related to a broad range of factors such as gender, socio-economic status and ethnicity, [8] and is discussed more fully in Family Carers. Pre-loss depressive symptoms have been associated with low preparedness during caregiving. [5,8] Since the caregiving period precedes death, this period seems to offer an opportunity to adjust to the impending death.

Large et al. [6] discuss the trajectory of caregiver grief, with stages moving between denial to over-involvement, anger, guilt and finally acceptance. In the review by Nielsen et al. [3] 17 of the 20 studies reached consensus on the definition of preparedness, as a ‘preparatory psychological and practical adjustment’ which the carer can be enabled to engage in if they choose to acknowledge death is imminent. Grief during caregiving seems to be a complex process and a reaction to multiple losses, intensified for spousal carers and the status of their relationship. [6]

A number of factors influence how prepared people feel for their loved one dying and the impact this might have on their grieving. The type of loss such as the loss of ability to communicate with a person, of companionship, of physical contact, has an impact on grief symptoms. [3]

In addition, the person being in pain or having diminished dignity and quality of life prior to death increases emotional upset following death. [1] The review by Arruda et al. [1] suggests that residential aged care plays a pivotal role in shaping the final memories of the family of an older adult with dementia. Conflict between the family and staff at the facility can increase the family’s emotional upset and trauma well past the person’s death.

Health and symptoms of bereavement: Older adults reported health and sleep problems during bereavement. Sleep difficulty was the most prominent concern which affected a small proportion of widows up to two years after loss. [8] Almost a quarter of women reported changes to appetite and weight changes as well as symptoms of fatigue and nausea which tended to prevail or intensify over time. These findings are consistent with those in the review by Large et al. [6]

In the systematic review by Stahl et al, [10] specific changes in health behaviour were reviewed from results of 34 studies. Bereavement is strongly related to unintentional weight loss and sleep problems, although the longevity of these issues is unknown. Widows were more likely to skip meals and eat more commercially-produced meals with fewer servings of fruit and vegetables. Alcohol consumption increased for both bereaved older men and women, while engaging in physical activity is reduced for both. [10]

Bereavement and Grief over time

In the review by Naef et al., [8] seven studies identified indicators of bereavement such as depression and distress that develop over time, but also decrease over a period of up to 3-4 years after bereavement. [8]

In the systematic review by Arruda et al., [1] grief and bereavement within the context of dementia was studied. End-of-life care for older adults with dementia is increasing and up to 70% of older adults with dementia die in a residential aged care setting. [1] The placement of a person in residential aged care can impact on chronic grief for the carer as it heightens guilt, resentment, loneliness and may increase conflict within the family over the placement decision. Following the death of a person with dementia, family members experience bereavement with varying symptoms. Approximately 20% of bereaved caregivers of people with dementia experience prolonged and exacerbated grief, something that is referred to as ‘complicated grief’. [1]

Complicated grief is a syndrome which persists for more than 6 months after the death of the person and is characterised by intense yearning for the person, grief symptoms and impairment of daily life. [3,5] In the review by Chan et al., [5] several factors were found to increase the risk of complicated grief, the strongest of which were being a spousal carer, experiencing pre-death depression. The characteristics are similar to those discussed in the experience of caregiver burden - please see Family Carers.

Place of death

There are concerns that people with dementia receive suboptimal end-of-life care in residential aged care, with pain being poorly managed and up to 44% of older adults with dementia dying with feeding tubes in situ despite a lack of evidence for the benefit of artificial feeding. [1] (see Nutrition) In addition, older adults with dementia are less likely to be referred for hospice care, which would offer support of the person and their family, predominantly due to difficulty in determining when a person has less than 6 months to live and lack of recognition that dementia is a terminal illness. [1]

Caregiver Interventions – pre-loss

Seven studies in the review by Arruda et al. [1] identified strategies that had been shown to improve post death grief and bereavement outcomes. Interventions were typically multi-component and delivered pre-death, and focused on positive aspects of caring for a person with dementia as well as emotional and physical health of the family members. Similar interventions were evaluated in the review by Gauthier et al., [7] however only two studies strongly indicated positive impact of pre-bereavement interventions.Targeted disease-specific support appear to be of more benefit than generic bereavement support. [7] Interventions addressing carer grief and bereavement after death in residential aged care were not found. [1] A combination of pre- and post-bereavement interventions appear to have the most impact on caregivers’ health and wellbeing in the review by Gauthier et al. [7]

Bereavement and grief – post death

The review by Arruda et al. [1] found that post-death grief and bereavement experiences of caregivers were influenced by a variety of factors. The evidence suggests that the relationship between the carer and the person is important in how the death is viewed and in the post-death grief and bereavement outcomes. Mental health is the most frequently measured outcome in the assessment of grief and bereavement, with symptoms such as depression, anxiety, loneliness and longing. Evidence suggests that carers of people with dementia experience more pronounced grief due to the reduced ability to communicate with the person at late stages of illness and increased amount of time providing care for the person and is further exacerbated by the increased need for placement in RAC. [1,5,6,8] This is discussed more fully in Cognitive Issues.

Evidence suggests that carers of older adults with dementia may experience grief for up to 18 months after the death of their family member. Bereavement support available for these people is limited. [1] Formal pre-death support provided by hospice services does appear to reduce grief symptoms in carers. The evidence suggests there is a lack of formal support for the family of people in residential aged care after death [1] and often those most in need of support do not seek it out. [11] In the review by Sealey et al., [11] studies were synthesised to identify opportunity for bereavement risk identification. The authors concluded that the complexities of grief and palliative care make it difficult to assess risk and any model to identify risk factors would require a range of pathways for different settings and strategies which do not only refer to counselling or therapy. [11]

When death occurs in residential aged care and where palliative services have not been implemented, the type of support more frequently offered includes a sympathy card from staff or staff presence at the funeral. Written information about grief or group/individual bereavement support is rarely provided by institutions. [1]

A limited number of positive outcomes in the context of dementia and carer bereavement were identified, most frequently relief and reduced stress levels. This was observed in bereaved wives more frequently than bereaved husbands [1]. Some studies reported relief for the carer when death finally occurred who could then reflect positively on their caregiving role. [1,5] In the review by Gauthier et al., [7] spouses who received hospice services experienced lower mortality rates following bereavement than spouses who had not received this form of support. 

Coping is recognised as a dynamic-regulatory process. [3] In the systematic review by Naef et al. [8] and Large et al., [6] older adults who employed strategies that ‘kept them busy’ or involved them in routines such as practicing a belief or religion as well as time spent with family and friends assisted in coping with grief. It was noted that particular times of the day or year were particularly challenging, such as mealtimes, bedtime and anniversaries. Studies show that family support, relationships with neighbours, friends and other widow/ers are all important resources in bereavement. [8] Many widow/ers found comfort in a continued engagement with their deceased partner via reliving memories, including them in conversations or by tokens of remembrance such as favourite flowers or chair in the home. [8,9] In the review by Holm et al., [9] the authors found that emotional state improved where self-management was balanced by resilience and ability to construct a new identity as a widow.

Naef et al. [8] found in eight of the studies reviewed, older adults reported needing to reorient themselves in their social world and often struggled to go out in public alone. Women in particular needed to develop new identities as widows, may have experienced self-growth and had to learn new skills or assume new roles.
 

Evidence Gaps

  • Lack of research in minority/ethnically diverse groups and how this might impact on experience of grieving and bereavement
  • The longer term impact on grief of family members, where an older adult has died in residential aged care
  • Provision and evaluation of hospice services in residential aged care
  • Interventions investigating outcomes on post-death support in grief and bereavement
  • The experience of widowhood in older males – longitudinal studies
  • Longevity of behaviour change after bereavement i.e. changes in eating habits, weight loss, increased alcohol, poor sleep


Page udpated 24 May 2017

  • References

  1. Arruda EH, Paun O. Dementia caregiver grief and bereavement: An integrative review. WestJ Nurs Res. 2017.
  2. Cancer Council NSW. Understanding Grief: A guide for family and friends when someone has died from cancer (414kb pdf). Sydney: Cancer Council Australia; 2017.
  3. Nielsen MK, Neergaard MA, Jensen AB, Bro F, Guldin MB. Do we need to change our understanding of anticipatory grief in caregivers? A systematic review of caregiver studies during end-of-life caregiving and bereavement. Clin Psychol Rev. 2016 Mar;44:75-93.
  4. PEPA Project Team. The Program of Experience in the Palliative Approach Learning Guide for Nurses and Allied Health Professionals (349kb pdf). Brisbane: Queensland University of Technology; 2016.
  5. Chan D, Livingston G, Jones L, Sampson EL. Grief reactions in dementia carers: a systematic review. Int J Geriatr Psychiatry. 2013 Jan;28(1):1-17.
  6. Large S, Slinger R. Grief in caregivers of persons with Alzheimer's disease and related dementia: a qualitative synthesis. Dementia (London). 2015 Mar;14(2):164-83.
  7. Gauthier LR, Gagliese L. Bereavement interventions, End‐of‐Life cancer care, and spousal well‐being: A systematic review. Clin Psychol Sci Pract. 2012 Mar 20;19(1):72-92.
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  9. Holm AL, Severinsson E. Systematic review of the emotional state and self-management of widows. Nurs Health Sci. 2012 Mar;14(1):109-20.
  10. Stahl ST, Schulz R. Changes in routine health behaviors following late-life bereavement: a systematic review. J Behav Med. 2014 Aug;37(4):736-55.
  11. Sealey M, Breen LJ, O'Connor M, Aoun SM. A scoping review of bereavement risk assessment measures: Implications for palliative care. Palliat Med. 2015 Jul;29(7):577-89.
  12. Hudson P, Remedios C, Zordan R, Thomas K, Clifton D, Crewdson M, et al. Guidelines for the psychosocial and bereavement support of family caregivers of palliative care patients. J Palliat Med. 2012 Jun;15(6):696-702.
  13. Medical Services Commission. Palliative care for the patient with incurable cancer or advanced disease. Part 3: grief and bereavement [Internet]. 2017 [updated 2017 Feb 22; cited 2017 May 23].