Duelo anticipado en familiares de personas con demencia. Variables psicosociales asociadas y su impacto sobre la salud del cuidador. Una revisión de literatura

IntroductionTaking care of a relative with dementia may be linked to negative consequences for the caregiver. One of the processes that can be experienced is anticipatory grief, that is defined as the feelings of pain and loss that appear in the caregiver before the death of the person cared for.ObjectivesThe review aimed to conceptualize anticipatory grief in this population, to study the related psychosocial variables, and to know the repercussions for the health of the caregiver.MethodA systematic search was made under the directives of PRISMA statement in the ProQuest, PubMed, Web of Science (WOS), and Scopus databases, including studies published in the last 10 years (2013–2023).ResultsA total of 160 articles were obtained, 15 being finally selected. It is observed that anticipatory grief is defined as an ambiguous process since it appeared before the death of the sick family member. Being a female caregiver, spouse of a family member with dementia, having a closer relationship with him and/or having an important responsibility in care, are associated with a greater chance of experiencing anticipatory grief. In relation to the person cared for, if he or she is in a severe phase of the disease, is younger, and/or presents problematic behaviours, there is also greater anticipatory grief in the family caregiver.Anticipatory grief has a significant impact on caregivers’ physical, psychological, and social health, being associated with greater burden, depressive symptomatology, and social isolation.ConclusionsAnticipatory grief turns out to be a relevant concept in the context of dementia, being necessary to include it in intervention programs for this population.     

The transformative power of story for healing

One of our goals in this session was, not just to talk about the healing power of narrative, but to experience it as well. Louise Profeit-LeBlanc is one of the presenters we invited specifically because of her skills as a storyteller. She has been heavily involved for several years as both an organizer and a participant in the Yukon Storytelling Festival, held every year in late May in Whitehorse. Woven into her presentation is a useful framework for differentiating various kinds of stories. As she tells us a series of stories, she takes us through a wide range of emotions from grief and loss to laughter and awe. For each of her stories, she gives us some personal contextual information that adds to the story’s meaning and helps us appreciate its significance. Her final story, in particular, is the kind of traditional story that has probably existed for a very long time. Such stories may be told with slightly different emphases, depending on the occasion, but they carry wisdom and value for every generation that hears them.     

Pet Loss: Understanding Disenfranchised Grief,Memorial Use,and Posttraumatic Growth

The growing body of literature exploring pet loss suggests that many bereaved pet owners experience disenfranchised grief. Disenfranchised grief occurs when a loss is unacknowledged and the bereaved are unable to express their grief. When grief is considered illegitimate, the bereaved may experience a variety of adverse psychological outcomes, including increased distress and reduced quality of life. Additionally, when grief is inhibited, the individual may be less likely to experience positive changes such as posttraumatic growth. Few studies have considered the relationship between disenfranchisement and posttraumatic growth following the loss of a companion animal. This study investigated the relationship between disenfranchised grief, memorialization, and posttraumatic growth in bereaved pet owners. Grief severity was assessed as a moderator. Using an online survey, respondents (n?=?133) completed standardized measures, including the Pet Bereavement Questionnaire, the Loss of Social Support subscale from the Grief Experience Questionnaire, and the Posttraumatic Growth Inventory-Short Form (PTGI-SF). As hypothesized, there was a significant interaction between disenfranchised grief, grief severity, and posttraumatic growth, suggesting that disenfranchised grief inhibits posttraumatic growth when grief severity is high. Contrary to the hypothesis, there was no relationship between memorial quantity or type and posttraumatic growth. Overall, this study shows that disenfranchised grief can inhibit posttraumatic growth following the loss of a pet, highlighting the complicated relationship between posttraumatic growth, grief intensity, and disenfranchised grief.     

Exploring the Grief Experience Among Callers to a Pet Loss Support Hotline

The present study explored the grief experience among callers to the Ontario Veterinary College Pet Loss Support Hotline (PLSH). Summary notes (n = 75) of the conversations between callers and PLSH volunteers were qualitatively analyzed using content analysis. Major content categories emerging from the analysis include personal pet narrative; perceived support sources; grief experiences; relationship with pet; memorialization; grief coping strategies; grief triggers; decision to euthanize; and veterinary interaction. Findings support that pet loss grief is a broad, complex construct, which can be complicated by a pet owner’s perceptions that they have minimal social support sources and negative veterinary interactions. Pet owners involved in the current study appeared comfortable sharing personal stories about their pet’s death when asked. In addition, memorialization appeared to be widely used by PLSH callers and may have helped them cope with their loss. Importantly, the interaction with veterinary staff was identified to potentially aggravate or alleviate a pet owner’s grief experience. Implications for mental health counselors and veterinary staff are that asking pet owners to tell their pet’s story and explore their support network may have value following the loss of a pet. Also, effectively communicating about memorialization and grief coping strategies may be beneficial when talking to owners experiencing grief. Finally, there continues to be a need for curricula and continuing professional training courses for veterinarians and mental health counselors to address topics such as the human–animal bond, grief, euthanasia, and memorialization practices.     

Pet Loss and Grief: Identifying At-risk Pet Owners during the Euthanasia Process

Pet owners often experience complex and profound grief reactions when their animals are euthanized. Veterinary staff are increasingly being called upon to be aware of and to respond to the grief reactions of pet owners at this critical time. The objectives of this study were to identify pet owners who are most at risk of grief and to suggest veterinary interventions during the euthanasia process. A convenience sample of 409 pet owners whose animals had been euthanized in the past year took part in a survey. Variables of interest included pet and pet-owner demographics, pet-death characteristics, attachment to pet, and bereavement reactions. Stepwise multiple regression analyses were conducted to identify factors related to the three grief reaction subtypes: sorrow, anger, and guilt. Results indicated that attachment to pets was a strong predictor of feelings of grief/sorrow (p < 0.001) and anger (p < 0.001). Sudden death was also related to feelings of anger (p < 0.05). Cancer diagnosis was negatively related to feelings of anger (p < 0.05) and guilt (p < 0.01). The findings from this study provide additional insight into the complexity of grief following pet euthanasia. For veterinary staff, anticipating the needs of pet owners and supporting them through the grief process is an integral role. Understanding which pet owners are at greatest risk of grief is an important initial step, followed by empathic communications, sensitive interactions, and the provision of grief support.     

Book Reviews

Abstract

As pets provide many important benefits of a psychological, social, and physiological nature, loss of a companion animal can be a devastating event. The adjustment process, although similar to that experienced when a human dies, may be hindered by a lack of social support and opportunities for healthy confiding in others. In the current study, 49 adults completed questionnaires assessing grief experience, mood, physical symptoms, and new pet acquisition. Questionnaires were completed 2, 4, 8, and 26 weeks after the pet's death. Each time, subjects also wrote an essay in which they either confided details, thoughts, and feelings about the pet's death (confiding condition) or wrote essays on events unrelated to the pet (control condition). Results indicated that, with few exceptions, the grief experience associated with the death of a companion animal is similar to that associated with the loss of a significant human. Confiding had little effect upon the adjustment process, but individuals reporting deeper relationships with their pets had more difficulty adjusting to the loss. Those with more intimate relationships were also less likely to acquire a new pet within six months. Other pre-existing family pets and the cause of the pet's death had no effect upon adjustment. These findings indicate that pet loss can be a significant event for many individuals, especially if the relationship with the animal was strong. Suggestions for facilitating adjustment and ideas for further research are presented.     

History of Pregnancy Loss Increases the Risk of Mental Health Problems in Subsequent Pregnancies but Not in the Postpartum

While grief, emotional distress and other mental health conditions have been associated with pregnancy loss, less is known about the mental health impact of these events during subsequent pregnancies and births. This paper examined the impact of any type of pregnancy loss on mental health in a subsequent pregnancy and postpartum. Data were obtained from a sub-sample (N = 584) of the 1973-78 cohort of the Australian Longitudinal Study on Women''s Health, a prospective cohort study that has been collecting data since 1996. Pregnancy loss was defined as miscarriage, termination due to medical reasons, ectopic pregnancy and stillbirth. Mental health outcomes included depression, anxiety, stress or distress, sadness or low mood, excessive worry, lack of enjoyment, and feelings of guilt. Demographic factors and mental health history were controlled for in the analysis. Women with a previous pregnancy loss were more likely to experience sadness or low mood (AOR = 1.75, 95% CI: 1.11 to 2.76, p = 0.0162), and excessive worry (AOR = 2.01, 95% CI: 1.24 to 3.24, p = 0.0043) during a subsequent pregnancy, but not during the postpartum phase following a subsequent birth. These results indicate that while women who have experienced a pregnancy loss are a more vulnerable population during a subsequent pregnancy, these deficits are not evident in the postpartum.     

Therapeutic Riding: Assessing Human Versus Horse Effects

ABSTRACT

This study evaluated the grief process of 58 horse owners who had had their horses euthanized. Owner-present euthanasia was performed in 83% (n=48) of cases, while in 36% of cases the horse was euthanized at the owner's home. The euthanasia was described by the respondents as peaceful in 84% of cases. Respondents appreciated both active support directly after the euthanasia by the veterinarian in 69% (n=40) of cases and a telephone follow-up after a couple of days (67%; n=39). The veterinarian was evaluated as compassionate and friendly by 83% of the respondents (n=48), and as a better veterinarian by 50% of the respondents (n=29). The mean grief index of the respondents was 8.5 (range: 1[low] to 10[high]) and the mean grieving period was 4.4 months. Most respondents (86%) received support from their social environment. This study demonstrated that grief is common after equine euthanasia. The role of the veterinarian in the grieving process is important.     

The change of life,the sorrow of life: Menopause,bad blood and cancer among Italian-Australian working class women

This paper explores the discourse of menopause, health and illness among 20 middle aged Italo-Australian working class women living in Melbourne. Using the methods of interpretative anthropology and the perspectives of critical feminist theory, I argue that women's discourse about health and illness is one way in which they express feelings of loss over the fertility of their youth, ambivalences about their lives in Australia, and grief over a life left behind in Italy. These losses are experienced physically and expressed metaphorically through conditions of bad blood and nerves and are perceived to contribute to their vulnerability to a range of diseases including cancer. For these women, the change of life is experienced as the end of life and their fear of cancer is representative of their fears of social and physical death. Cancer is also seen to be a disease more common in Australia and is used as a metaphor for expressing anxieties relating to feelings of placelessness, of being disconnected from one's roots, and anxieties about becoming old and dying far from “home.”     

Quelle information donner �� une femme souffrant de troubles psychotiques ou de troubles bipolaires avant la naissance d��un enfant ?

What information should be provided to a female patient suffering from a psychotic disorder or a bipolar disorder prior to the birth of her child? Pregnancy is a time of intense psychological reshuffles that may weaken parents-to-be. The couple or the mother-to-be will seek the support of their loved ones. In this particular time, the involvement of professionals may be necessary when difficulties arise for the couple in relation to the psychological adjustment required by a child??s arrival. In case of a pregnancy contemplated in women affected by a mental illness, information related to potential risks carried by treatments and also by the impact of the pregnancy itself, the eventuality of the inability, for a more or less long period of time, to look after the child as well as the occurrence of possible distortions of the interactions in this context must be discussed in each parental project. This consists of a reflection on the benefits/risks by the patient, if possible her partner, also involving the referring psychiatrist, the general practitioner, the obstetricians and the paediatricians. This information is not always easy for the referring psychiatric to deliver. A tight cooperation between the Department of General Psychiatry and the Departments of Infant-Juvenile Psychiatry is important from a perspective of prevention, as it is required to deal with the perinatal/prenatal issues which arise out of the formation of a quality bond between mentally ill parents and a baby, that is sometimes difficult to set in place by the professionals involved and also by the patients themselves at the time of the birth. Thus, Cico was set up at the Saint Anne Hospital, non sectored, dealing with child psychiatric and adult psychiatric approaches. It allows patients to reflect on their desire for a child and provides information on the course of pregnancy to patients. It also assesses the capacity of the patient to form a bond with the child.     

Depression in the elderly.

Depression in the elderly is very common and may be difficult to diagnose. Because of its varied presentation and its frequent association with physical illness it will be encountered increasingly by all physicians as the elderly population expands. Depression, though treatable, is often not treated, and suicide rates are high among depressed elderly persons. Diagnostic difficulties lie in distinguishing depression from organic brain syndromes, from so-called masked depressions and from normal grief reactions. Pharmacologic treatment is effective, but care must be taken to recognize side effects and to use adequate doses. Psychologic approaches should focus on reducing feelings of helplessness and failing self-esteem. The importance of the losses borne by elderly persons in the pathogenesis of depression continues to be of theoretical and practical interest.     

Loss in higher multiple pregnancy and multifetal pregnancy reduction.

From early pregnancy into childhood, higher multiples have much higher rates of mortality, whether from spontaneous abortion, the 'vanishing twin' syndrome, fetal or infant death. Many parents must cope with the death of one baby whilst the siblings remain critically ill or later become disabled and yet there grief is often underestimated. Little is known about the long term feelings of parents who choose to have a multifetal pregnancy reduction (MFPR). Most say they made the right decision but also that there was insufficient respect for their loss. They are often anxious about what, if anything, to tell the survivors and how they might react. Long term follow-up studies of the children as well as the parents are needed. Meanwhile parents who chose to have a MFPR must be given more information and ongoing support.     

Emotional Health of People with Visual Impairment Caused by Retinitis Pigmentosa

Purpose

To understand the emotional difficulties associated with living with the ocular condition Retinitis Pigmentosa, and to examine the functioning of a self-report instrument used to assess this construct.

Methods

The difficulty of goals and tasks in the emotional health domain of the Dutch ICF Activity Inventory were rated by 166 people with Retinitis Pigmentosa in a cross-sectional study. Demographic factors were also assessed.

Results

Responses to the 23 emotional health tasks were Rasch analysed and could be used to form either one 20 item overview scale with some multidimensionality, or three unidimensional subscales addressing feelings (4 items), communicating visual loss (5 items) and fatigue (7 items). The most difficult individual tasks related to communicating visual loss to other people, and dealing with feelings such as frustration, anxiety and stress. The use of mobility aids and female gender were associated with increased difficulty with emotional health, explaining 19% of the variance in the overview scale.

Conclusions

The emotional health domain of the Dutch ICF Activity Inventory is a valid tool to assess emotional difficulties arising from visual loss. Interventions to aid people with Retinitis Pigmentosa deal with emotional difficulties should particularly address communicating vision loss effectively to others and coping with negative feelings.     

Grief and bereavement: what psychiatrists need to know

This review covers four areas of clinical importance to practicing psychiatrists: a) symptoms and course of uncomplicated (normal) grief; b) differential diagnosis, clinical characteristics and treatment of complicated grief; c) differential diagnosis, clinical characteristics and treatment of grief-related major depression; and d) psychiatrists’ reactions to patient suicides. Psychiatrists often are ill prepared to identify complicated grief and grief-related major depression, and may not always be trained to identify or provide the most appropriate course of treatment. Both conditions overlap with symptoms found in ordinary, uncomplicated grief, and often are written off as “normal” with the faulty assumption that time, strength of character and the natural support system will heal. While uncomplicated grief may be extremely painful, disruptive and consuming, it is usually tolerable and self-limited and does not require formal treatment. However, both complicated grief and grief-related major depression can be persistent and gravely disabling, can dramatically interfere with function and quality of life, and may even be life threatening in the absence of treatment; and both usually respond to targeted psychiatric interventions. In addition, patient suicide has been reported as one of the most frequent and stressful crises experienced by health providers, and psychiatrists are not immune to complicated grief or grief-related depression when they, themselves, become survivors. Thus, it is essential for psychiatrists to recognize their own vulnerabilities to the personal assaults that often accompany such losses, not only for their own mental health and well-being, but also to provide the most sensitive and enlightened care to their patients.     

How mothers cope with the death of a twin or higher multiple.

Estimates suggest up to 15% of multiples grow up as singleton survivors. Few studies have reported how bereaved multiple birth mothers with a surviving multiple cope with their bereavement. Using the population-based Western Australian Twin Child Health study database and other sources, we interviewed 66 bereaved mothers with at least one surviving multiple. For many, this contact was the first acknowledgement of their status as multiple birth mothers since their loss. The Beck Depression Inventory 2nd Edition (BDI) showed significant reduction in depression between the time of loss and our interview. For mothers as a group there was a high correlation between current and retrospective BDI, and retrospective BDI and all three Perinatal Grief Scales (PGS). There was a significant correlation between the three grief factors on the PGS. When subdivided, this held for mothers who suffered a loss at or before the neonatal period, but not for those whose loss occurred later. Bereaved mothers of multiples scored significantly higher on the PGS than the PGS norm for bereaved mothers of singletons, which we attribute to others not acknowledging their grief, and/or recruitment differences. There were no significant differences in PGS scores related to cause, the time since death, or sibling number or age. Spiritual beliefs and finding meaning in loss were positively related to scores for adjustment and acceptance. Although traumatised, most mothers accommodated their losses meaningfully in their lives. Their own support recommendations are included.     

Is Rumination after Bereavement Linked with Loss Avoidance? Evidence from Eye-Tracking

Rumination is a risk factor in adjustment to bereavement. It is associated with and predicts psychopathology after loss. Yet, the function of rumination in bereavement remains unclear. In the past, researchers often assumed rumination to be a maladaptive confrontation process. However, based on cognitive avoidance theories of worry in generalised anxiety disorder (GAD) and rumination after post-traumatic stress disorder (PTSD), others have suggested that rumination may serve to avoid painful aspects of the loss, thereby contributing to complicated grief. To examine if rumination is linked with loss avoidance, an eye-tracking study was conducted with 54 bereaved individuals (27 high and 27 low ruminators). On 24 trials, participants looked for 10 seconds at a picture of the deceased and a picture of a stranger, randomly combined with negative, neutral or loss-related words. High ruminators were expected to show initial vigilance followed by subsequent disengagement for loss stimuli (i.e., picture deceased with a loss word) in the first 1500 ms. Additionally, we expected high ruminators to avoid these loss stimuli and to show attentional preference for non-loss-related negative stimuli (i.e., picture stranger with a negative word) on longer exposure durations (1500–10000 ms). Contrary to expectations, we found no evidence for an effect of rumination on vigilance and disengagement of loss stimuli in the first 1500 ms. However, in the 1500–10000 ms interval, high ruminators showed shorter gaze times for loss stimuli and longer gaze times for negative (and neutral) non-loss-related stimuli, even when controlling for depression and complicated grief symptom levels. Effects of rumination on average fixation times mirrored these findings. This suggests that rumination and loss avoidance are closely associated. A potential clinical implication is that rumination and grief complications after bereavement may be reduced through the use of exposure and acceptance-based therapeutic techniques.     

Premature singleton versus a twin or triplet infant death: parental adjustment studied through a personal interview.

Parental adjustment following the death of a premature singleton or multiple birth infant has hitherto been studied by mailed questionnaires or telephone survey. In the present study, using an in-depth personal interview, grief reactions and adjustment patterns of nine families who lost a singleton premature infant ('Single Group') were compared with those of nine families who lost one of a premature multiple birth cohort ('Multiple Group'). The interview was conducted 1-4 years after the death of the infant and evaluated specific areas or 'scales' of life adjustment, including individual feelings, relationship between husband and wife, and functioning at home and at work. There was no significant difference between the paternal and maternal level of adjustment of the two groups in any of the studied scales. A positive correlation was found between maternal and paternal grief reaction of the same family in the scales of individual feelings (r = 0.65), relationships between husband and wife (r = 0.70), and functioning at home (r = 0.57). Comparing the father's scale with the mother's scale revealed a significant difference only in the area of 'individual feelings'. The gestational age, maternal bonding during hospitalisation of the infant and the parental attendance at the event of death were significantly associated with the process of parental adjustment. The results of this study support previous reports of similar parental reactions following the demise of a premature singleton or multiple birth infant. Since societal environment may not recognise the need for consolation of these families, care, compassion, and sensitivity should be encouraged in dealing with these parents at the time of their infant' death, and for a long time thereafter.     

Coping with lab animal morbidity and mortality: a trainer's role

The author discusses the role of an animal research facility trainer in helping to teach laboratory animal facility staff how to recognize negative behavior patterns, manage grief, and help to prevent feelings of guilt.     

Prolonged Grief Disorder: Psychometric Validation of Criteria Proposed for DSM-V and ICD-11

Background

Bereavement is a universal experience, and its association with excess morbidity and mortality is well established. Nevertheless, grief becomes a serious health concern for a relative few. For such individuals, intense grief persists, is distressing and disabling, and may meet criteria as a distinct mental disorder. At present, grief is not recognized as a mental disorder in the DSM-IV or ICD-10. The goal of this study was to determine the psychometric validity of criteria for prolonged grief disorder (PGD) to enhance the detection and potential treatment of bereaved individuals at heightened risk of persistent distress and dysfunction.

Methods and Findings

A total of 291 bereaved respondents were interviewed three times, grouped as 0–6, 6–12, and 12–24 mo post-loss. Item response theory (IRT) analyses derived the most informative, unbiased PGD symptoms. Combinatoric analyses identified the most sensitive and specific PGD algorithm that was then tested to evaluate its psychometric validity. Criteria require reactions to a significant loss that involve the experience of yearning (e.g., physical or emotional suffering as a result of the desired, but unfulfilled, reunion with the deceased) and at least five of the following nine symptoms experienced at least daily or to a disabling degree: feeling emotionally numb, stunned, or that life is meaningless; experiencing mistrust; bitterness over the loss; difficulty accepting the loss; identity confusion; avoidance of the reality of the loss; or difficulty moving on with life. Symptoms must be present at sufficiently high levels at least six mo from the death and be associated with functional impairment.

Conclusions

The criteria set for PGD appear able to identify bereaved persons at heightened risk for enduring distress and dysfunction. The results support the psychometric validity of the criteria for PGD that we propose for inclusion in DSM-V and ICD-11. Please see later in the article for Editors'' Summary     

Support for parents experiencing perinatal loss.

Grief following perinatal loss is just as debilitating as that following the death of an older person and may not be completely resolved for years. The physician''s role in assisting parents following perinatal loss is one of a sympathetic listener and compassionate informant, but each category of perinatal loss--miscarriage, stillbirth, neonatal death and sudden infant death syndrome--requires a somewhat different approach. To be of assistance, physicians must understand the normal process of grief and the differences between the reactions of mothers, fathers and siblings. The advent of liberal attitudes to family visiting in perinatal units has helped parents better understand perinatal illness, and appropriate management in the event of perinatal death can greatly benefit the family.