American Journal of Alzheimer's Disease and Other Dementias http://aja.sagepub.com/
Prolonged grief in caregivers of community-dwelling dementia patients Serena Passoni, Alessio Toraldo, Barbara Villa and Gabriella Bottini AM J ALZHEIMERS DIS OTHER DEMEN published online 9 July 2014 DOI: 10.1177/1533317514542643 The online version of this article can be found at: http://aja.sagepub.com/content/early/2014/09/03/1533317514542643
Published by: http://www.sagepublications.com
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Current Topics in Research
Prolonged grief in caregivers of communitydwelling dementia patients
American Journal of Alzheimer’s Disease & Other Dementias® 1-9 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1533317514542643 aja.sagepub.com
Serena Passoni, MSc1, Alessio Toraldo, PhD2, Barbara Villa, MSc3, and Gabriella Bottini, MD, PhD1,2
Abstract Objectives: To estimate the frequency of prolonged grief disorder (PGD) in 90 primary caregivers of patients with dementia who live in the community dwelling in Milan and to identify the relationship between grief intensity (GI) and other caregiver variables; another aim was to clarify the role of the objective cognitive and functional impairment of the patients and the level of deterioration perceived by caregivers. Design: Cross-sectional study. Results: In all, 16.7% of caregivers had PGD. Caregiver variables increasing GI and the risk of developing PGD were burden, anxiety, and some sociodemographic features. The objective level of patient’s deterioration was irrelevant for PGD probability/GI, while the deterioration level perceived by the caregiver increased PGD probability and GI. Conclusions: Caregivers of patients with dementia may experience grief symptoms that are associated with low educational level, high level of burden and anxiety, and high perceived deterioration of their demented relatives’ cognitive and functional abilities. Keywords dementia, caregivers, prolonged grief disorder, perceived deterioration
Introduction Caring for people with dementia has a substantial emotional toll on family caregivers. Prolonged care of patients with dementia is associated with somatic and physical symptoms that characterize a caregiver syndrome that culminates in high risk of developing affective disorders,1,2 physical illness, emotional strain, and mental health problems.3,4 Much attention has been paid to burden among caregivers of people with dementia,5-8 and higher level of burden predicts prolonged grief in this population along with depression and greater cognitive impairment of the care-recipient.9 However, little attention has been paid to grief of caregivers of patients with dementia, although grief becomes a serious health concern for a relative so as to meet criteria for complicated grief, also referred to as prolonged grief disorder (PGD).10 Prolonged grief disorder is a form of grief characterized by intense longing and yearning for the person who died, recurrent intrusive and distressing thoughts about his or her absence that make it difficult to concentrate and to move beyond an acute state of mourning, and inability to form other interpersonal relationships and engage in potentially rewarding activities. Formal diagnostic criteria for PGD were proposed for inclusion in the Diagnostic and Statistical Manual of Mental Disorder (Fifth Edition)10,11: according to these criteria, the diagnosis of PGD requires that the bereaved person has persistent and disruptive yearning, pining, and longing for the person who died and that the distress symptoms lasted for at least 6 months
while significantly impairing his or her functioning in important life domains. Complicated grief often co-occurs with other disorders such as major depression and posttraumatic stress disorder (PTSD); however, PGD is a specific condition12 that better describes caregivers’ reality independent of the diagnosis of depression or PTSD. Although the PGD diagnostic criteria were developed for bereavement, they can also be applied to other significant losses. In Holly Prigerson’s work regarding the consensus criteria for traumatic grief, the authors wrote ‘‘[ . . . ] once criteria for traumatic grief in response to the death of a significant other have been formulated and tested, it would be possible to test the criteria on those grieving over other losses (eg, terminal illness, divorce),’’ (p. 68) and they conclude that future works could examine the extent to which this syndrome emerges with other type of losses.13 Indeed some PGD research focused on family members of patients with terminal illnesses (cancer, vegetative
1 Cognitive Neuropsychology Center, Niguarda Ca’ Granda Hospital, Milan, Italy 2 Department of Brain and Behavioural Sciences, University of Pavia, Pavia, Italy 3 AIMA Milano Onlus, Italian Association of Alzheimer Disease, Milan, Italy
Corresponding Author: Serena Passoni, MSc, Cognitive Neuropsychology Center, Niguarda Ca’ Granda Hospital, Piazza Ospedale Maggiore 3, 20162 Milan, Italy. Email: [email protected]
Downloaded from aja.sagepub.com at COLUMBIA UNIV on November 14, 2014
American Journal of Alzheimer’s Disease & Other Dementias®
2 state), finding a subgroup of caregivers with high levels of grief symptoms.11,14,15 The PGD literature already provided evidence that there are significant issues of loss inherent in caring for a loved one with dementia16-18: indeed not only caregivers must cope with the stressful demands of addressing the needs of a loved one who can no longer adequately care for himself or herself but they must also cope with the interpersonal loss of a deep relationship. Meuser et al19 showed that grief is a primary reaction to taking care of a person with dementia: they define grief as ‘‘the caregiver’s emotional, cognitive, and behavioral reactions to the recognition of personally significant loss.’’ They argue that it is true grief that is relatively indistinguishable from postdeath grief in personal impact and meaning. Noyes et al20 suggested a new descriptive grief stress model of caregiving, linking the grief process to health consequences in caregiving and clarifying the consequences of relationship losses. This model assumes that depending on the type and the significance of the losses one of several outcomes could be anticipated: caregivers who experienced relationship loss (companionship, communication, support, and relationship dynamic change) are more likely to experience grief than caregivers who primarily experience caregiving losses (personal freedom, social and work opportunities, personal health, and recreations opportunities) which are more likely to produce feelings of stress and burden. Therefore, grief is a constant companion of caregiving of people with dementia,21 because the preillness emotional bond changes and weakens with the progress of the disease. These changes create a sense of ambiguity in the relationship because despite the physical presence of the patient, she or he is psychologically absent. Such phenomenon was described by Boss22 and Dupuis23 as ‘‘ambiguous loss’’: painful reactions can occur, with the pain being very similar to that caused by a real mourning. Indeed, family members of patients with dementia experience multiple losses, sometimes referred to as ‘‘triple grief’’: the loss of the patient’s personhood, the loss at the time of nursing home admission, and, finally, the loss at the patient’s death. More specifically, the primary grief, experienced by the loss of the patient’s personhood before their actual bodily death, has been called ‘‘anticipatory grief’’ or ‘‘predeath grief.’’24 Previous studies have attempted to identify predictors of PGD among caregivers of patients with dementia9,24: in general, the focus was on sociodemographic factors, on the characteristics of the caregiving experience and on psychiatric morbidities. However, some issues remain unresolved,20 like, for example, the role of the functional and cognitive impairment of the care recipient in the caregiver’s grief response. In our study, (1) we estimated the frequency of PGD predeath grief symptomatology in primary caregivers of patients with dementia who live in the community dwelling; to do so we employed a PGD scale that has been specifically devised to assess preloss symptoms25; (2) we studied the relationship between PGD and several caregiver variables, such as
sociodemographic characteristics, emotional features, and caregiving burden; and (3) we tried to clarify the role of the patient’s cognitive and functional impairment on the caregivers’ grief.
Method Patients The Alzheimer Evaluation Unit (UVA) of Niguarda Ca’ Granda Hospital provides diagnosis of dementia following the Diagnostic and Statistical Manual of Mental Disorder (Fourth Edition) criteria26 and monitors the patients’ cognitive level every 6 months by means of neurological and neuropsychological batteries. We planned to recruit at least 85 caregiver– patient pairs since such sample size provides 80% power in detecting interesting predictive patterns (absolute r .3). We initially recruited 115 patients and the caregivers with whom they accessed the UVA; we then excluded patient–caregiver pairs when the caregiver accessing the UVA (1) was not the patient’s primary caregiver, (2) did not have adequate educational level (conventionally
Prolonged grief in caregivers of community-dwelling dementia patients Serena Passoni, Alessio Toraldo, Barbara Villa and Gabriella Bottini AM J ALZHEIMERS DIS OTHER DEMEN published online 9 July 2014 DOI: 10.1177/1533317514542643 The online version of this article can be found at: http://aja.sagepub.com/content/early/2014/09/03/1533317514542643
Published by: http://www.sagepublications.com
Additional services and information for American Journal of Alzheimer's Disease and Other Dementias can be found at: Email Alerts: http://aja.sagepub.com/cgi/alerts Subscriptions: http://aja.sagepub.com/subscriptions Reprints: http://www.sagepub.com/journalsReprints.nav Permissions: http://www.sagepub.com/journalsPermissions.nav
>> OnlineFirst Version of Record - Sep 4, 2014 OnlineFirst Version of Record - Jul 9, 2014 What is This?
Downloaded from aja.sagepub.com at COLUMBIA UNIV on November 14, 2014
Current Topics in Research
Prolonged grief in caregivers of communitydwelling dementia patients
American Journal of Alzheimer’s Disease & Other Dementias® 1-9 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1533317514542643 aja.sagepub.com
Serena Passoni, MSc1, Alessio Toraldo, PhD2, Barbara Villa, MSc3, and Gabriella Bottini, MD, PhD1,2
Abstract Objectives: To estimate the frequency of prolonged grief disorder (PGD) in 90 primary caregivers of patients with dementia who live in the community dwelling in Milan and to identify the relationship between grief intensity (GI) and other caregiver variables; another aim was to clarify the role of the objective cognitive and functional impairment of the patients and the level of deterioration perceived by caregivers. Design: Cross-sectional study. Results: In all, 16.7% of caregivers had PGD. Caregiver variables increasing GI and the risk of developing PGD were burden, anxiety, and some sociodemographic features. The objective level of patient’s deterioration was irrelevant for PGD probability/GI, while the deterioration level perceived by the caregiver increased PGD probability and GI. Conclusions: Caregivers of patients with dementia may experience grief symptoms that are associated with low educational level, high level of burden and anxiety, and high perceived deterioration of their demented relatives’ cognitive and functional abilities. Keywords dementia, caregivers, prolonged grief disorder, perceived deterioration
Introduction Caring for people with dementia has a substantial emotional toll on family caregivers. Prolonged care of patients with dementia is associated with somatic and physical symptoms that characterize a caregiver syndrome that culminates in high risk of developing affective disorders,1,2 physical illness, emotional strain, and mental health problems.3,4 Much attention has been paid to burden among caregivers of people with dementia,5-8 and higher level of burden predicts prolonged grief in this population along with depression and greater cognitive impairment of the care-recipient.9 However, little attention has been paid to grief of caregivers of patients with dementia, although grief becomes a serious health concern for a relative so as to meet criteria for complicated grief, also referred to as prolonged grief disorder (PGD).10 Prolonged grief disorder is a form of grief characterized by intense longing and yearning for the person who died, recurrent intrusive and distressing thoughts about his or her absence that make it difficult to concentrate and to move beyond an acute state of mourning, and inability to form other interpersonal relationships and engage in potentially rewarding activities. Formal diagnostic criteria for PGD were proposed for inclusion in the Diagnostic and Statistical Manual of Mental Disorder (Fifth Edition)10,11: according to these criteria, the diagnosis of PGD requires that the bereaved person has persistent and disruptive yearning, pining, and longing for the person who died and that the distress symptoms lasted for at least 6 months
while significantly impairing his or her functioning in important life domains. Complicated grief often co-occurs with other disorders such as major depression and posttraumatic stress disorder (PTSD); however, PGD is a specific condition12 that better describes caregivers’ reality independent of the diagnosis of depression or PTSD. Although the PGD diagnostic criteria were developed for bereavement, they can also be applied to other significant losses. In Holly Prigerson’s work regarding the consensus criteria for traumatic grief, the authors wrote ‘‘[ . . . ] once criteria for traumatic grief in response to the death of a significant other have been formulated and tested, it would be possible to test the criteria on those grieving over other losses (eg, terminal illness, divorce),’’ (p. 68) and they conclude that future works could examine the extent to which this syndrome emerges with other type of losses.13 Indeed some PGD research focused on family members of patients with terminal illnesses (cancer, vegetative
1 Cognitive Neuropsychology Center, Niguarda Ca’ Granda Hospital, Milan, Italy 2 Department of Brain and Behavioural Sciences, University of Pavia, Pavia, Italy 3 AIMA Milano Onlus, Italian Association of Alzheimer Disease, Milan, Italy
Corresponding Author: Serena Passoni, MSc, Cognitive Neuropsychology Center, Niguarda Ca’ Granda Hospital, Piazza Ospedale Maggiore 3, 20162 Milan, Italy. Email: [email protected]
Downloaded from aja.sagepub.com at COLUMBIA UNIV on November 14, 2014
American Journal of Alzheimer’s Disease & Other Dementias®
2 state), finding a subgroup of caregivers with high levels of grief symptoms.11,14,15 The PGD literature already provided evidence that there are significant issues of loss inherent in caring for a loved one with dementia16-18: indeed not only caregivers must cope with the stressful demands of addressing the needs of a loved one who can no longer adequately care for himself or herself but they must also cope with the interpersonal loss of a deep relationship. Meuser et al19 showed that grief is a primary reaction to taking care of a person with dementia: they define grief as ‘‘the caregiver’s emotional, cognitive, and behavioral reactions to the recognition of personally significant loss.’’ They argue that it is true grief that is relatively indistinguishable from postdeath grief in personal impact and meaning. Noyes et al20 suggested a new descriptive grief stress model of caregiving, linking the grief process to health consequences in caregiving and clarifying the consequences of relationship losses. This model assumes that depending on the type and the significance of the losses one of several outcomes could be anticipated: caregivers who experienced relationship loss (companionship, communication, support, and relationship dynamic change) are more likely to experience grief than caregivers who primarily experience caregiving losses (personal freedom, social and work opportunities, personal health, and recreations opportunities) which are more likely to produce feelings of stress and burden. Therefore, grief is a constant companion of caregiving of people with dementia,21 because the preillness emotional bond changes and weakens with the progress of the disease. These changes create a sense of ambiguity in the relationship because despite the physical presence of the patient, she or he is psychologically absent. Such phenomenon was described by Boss22 and Dupuis23 as ‘‘ambiguous loss’’: painful reactions can occur, with the pain being very similar to that caused by a real mourning. Indeed, family members of patients with dementia experience multiple losses, sometimes referred to as ‘‘triple grief’’: the loss of the patient’s personhood, the loss at the time of nursing home admission, and, finally, the loss at the patient’s death. More specifically, the primary grief, experienced by the loss of the patient’s personhood before their actual bodily death, has been called ‘‘anticipatory grief’’ or ‘‘predeath grief.’’24 Previous studies have attempted to identify predictors of PGD among caregivers of patients with dementia9,24: in general, the focus was on sociodemographic factors, on the characteristics of the caregiving experience and on psychiatric morbidities. However, some issues remain unresolved,20 like, for example, the role of the functional and cognitive impairment of the care recipient in the caregiver’s grief response. In our study, (1) we estimated the frequency of PGD predeath grief symptomatology in primary caregivers of patients with dementia who live in the community dwelling; to do so we employed a PGD scale that has been specifically devised to assess preloss symptoms25; (2) we studied the relationship between PGD and several caregiver variables, such as
sociodemographic characteristics, emotional features, and caregiving burden; and (3) we tried to clarify the role of the patient’s cognitive and functional impairment on the caregivers’ grief.
Method Patients The Alzheimer Evaluation Unit (UVA) of Niguarda Ca’ Granda Hospital provides diagnosis of dementia following the Diagnostic and Statistical Manual of Mental Disorder (Fourth Edition) criteria26 and monitors the patients’ cognitive level every 6 months by means of neurological and neuropsychological batteries. We planned to recruit at least 85 caregiver– patient pairs since such sample size provides 80% power in detecting interesting predictive patterns (absolute r .3). We initially recruited 115 patients and the caregivers with whom they accessed the UVA; we then excluded patient–caregiver pairs when the caregiver accessing the UVA (1) was not the patient’s primary caregiver, (2) did not have adequate educational level (conventionally
