Grief in caregivers of persons with Alzheimer’s disease and related dementia: A qualitative synthesis

Abstract

This article provides a meta-synthesis of studies focusing on grief in caregivers of people with Alzheimer's disease or related dementia. Through a systematic search, 11 articles met the inclusion criteria that care receivers had a diagnosis of Alzheimer's disease or related dementia, caregivers were informal caregivers, and the study focused on caregiver grief. The meta-synthesis followed a meta-ethnography approach based on reciprocal translation. Six themes were identified, namely challenges of caregiving, losses and changes in the relationship, the role of dementia in grief, striving despite dementia, utilising social support and death as a relief from caregiving. Themes are discussed within an integrated framework showing the connected relationships between themes. The devised framework of themes illustrates the general experience of caregiver grief and can be used to devise specific, targeted interventions to help caregivers to identify and work through their grief.

Pre‐death grief in the context of dementia caregiving: a concept analysis

“…, Shuter et al . ), while others used both anticipatory grief and grief (Paun , Adams , Ross & Dagley , Large & Slinger ). Alternative words to identify the concept were also found, such as living grief (Ziemba & Lynch‐Sauer ), chronic sorrow (Mayer ) and preparatory grief (Johansson et al .…”

“…Second, the family caregiver perceives the dementia‐related changes (e.g. personality change), relationship disruption and altered personal freedom (Large & Slinger ) as losses.…”

The impact of parental young onset dementia on children and young people's educational careers

“…Not surprisingly, research indicates that anticipatory grief is a significant source of stress, depression and physical, mental and emotional health issues, and a major factor affecting quality of life generally, with negative consequences for relationships, career development and educational progress (Large & Slinger, ; Sikes & Hall, , ). Experiencing such profound grief exacerbates the challenge of completing educational assessments:

She's at the end stage which I didn't know until a few weeks before my exams so that sucked.

…”

Commentary on Apathy as a Model for Investigating Behavioral and Psychological Symptoms in Dementia

“…This may be particularly true for families who have experienced significant difficulty managing a range of BPSDs that pose care challenges, such as care resistance or aggressive behaviors. Research clearly indicates that apathy may complicate the grieving process, in particular for spouses, but there has been little research into how someone living with dementia perceives the experience of apathy and the importance, risks, and benefits of various treatment approaches . Although these may seem like tangential diversions from the more rigorous pursuit of symptom resolution, the answers to these questions are ultimately needed to shape and refine targeting and intensity of apathy interventions.…”