Alzheimer’s Caregiver Differences in Experience of Loss, Grief Reactions and Depressive Symptoms Across Stage of Disease

Abstract

The self-reported losses, grief reactions, and depressive symptoms experienced by caregivers in the early, middle, and late stages of dementia were assessed using open-ended descriptive questions and scaled measures including the Meuser-Marwit Caregiver Grief Inventory (MM-CGI; Marwit & Meuser, 2002). Ninety-nine caregivers associated with an urban Alzheimer’s Association chapter were surveyed by post. While there were moderate levels of grief and depression reported across the entire sample, those caring for individuals in the late stage of dementia reported significantly more symptoms of grief and depression than those in the early or middle stages. Responses to open-ended questions regarding losses and grief also differed across the groups in the three disease stages. The late-stage group’s comments most resembled bereavement, in keeping with the higher grief and depression scores among members of this group. Findings suggest there are different emotional tasks faced by caregivers as the dementia progresses, and it is important to acknowledge the particular losses and facilitate grieving at each stage.

End of life care for community dwelling older people with dementia: an integrated review

“…Rather than the physical aspects of the end stage of dementia, carers' experiences and responses are shaped by the dementia-related behaviours and the experience of prolonged loss, including loss of choice and control when someone moves into a care home or is transferred to hospital (Loos, 1997;McCarthy et al, 1997;Albinssion andStrang, 2003a, 2003b;Bond et al, 2003;Bowes and Wilkinson, 2003;Diwan et al, 2004). Studies highlight the mixed feelings caregivers experience at the death of the person with dementia, the importance of a 'goodbye moment' and the misconception that all the grieving has already been done by the time a person with dementia dies (Almberg et al, 2000;Adams, 2004). Although when there has been a protracted period of caring, a study of 217 family carers found relief is a significant emotion when the person with dementia dies, with only a minority (14%) requiring bereavement related services (Schulz et al, 2003).…”

Anticipatory grief in the context of dementia caregiving.

“…On average, the AGS scores are slightly higher than those in the Marwit and Meuser (2002) study, and the MM-CGI scores of the current sample are comparable to those in the Marwit and Meuser (2002) and Adams and Sanders (2004) studies.…”

“…The 15-item short form (Sheikh & Yesavage, 1986) was used for this study, and demonstrated good internal consistency (alpha = .83). The short form correlates highly with the full version (Sheikh & Yesavage, 1986) and has also been used in caregiver research to assess depressive symptoms in younger adults (Adams & Sanders, 2004 Caregiver Anticipatory Grief…”

“…According to Adams and Sanders (2004) The relationship between grief and caregiver burden is understudied. To date, only one study has examined the direct relationship (Marwit & Meuser, 2002), and that study found that the effect size is large (r = .656).…”

“…During the progression of dementia family caregivers are confronted with losses of a variety of different aspects of the person they know, such as the loss of meaningful communication, emotional closeness, and aspects of his of her personality. These losses are known to prompt the experience of grief prior to death in some individuals (Meuser & Marwit, 2001;Marwit & Meuser 2002;Adams & Sanders, 2004). This study examined anticipatory grief in a sample of informal dementia caregivers with the following aims: 1)…”