What it means to be an adult child of a person with dementia

Abstract

The prevalence of dementia as a disease has increased worldwide with advancing age and growing population numbers, affecting whole families. However, most previous research does not separate the spouses or cohabitants from the adult children, but instead regards all next of kin involved in the everyday care of the person suffering from dementia as caregivers. This has made it difficult to find previous research regarding what it means to be an adult child of a person with dementia, and as such, the aim of this study is to explore that topic. The method used was narrative interviews analysed using phenomenological hermeneutics. Our comprehensive understanding showed that to be an adult child of a person with dementia means being burdened with the responsibility to act on behalf of the diseased parent despite a deep sense of grief and loss, which leads to frustration and despondence. The adult children's existence and reality are threatened not only by the loss of the parent but also by the possibility that one day they too may inherit the disease. This could be compared to a psychic crisis, which is defined as a situation that leads to radical changes in the afflicted person's relationship to life and reality, or, simply, “an upset in a steady state”. The findings suggest that adult children of people with dementia are in need of support for a substantial period of time in order to adapt to the fact that they have lost a parent who is still alive. They also need information about the disease and the process of diagnosis and treatment to feel more a part of the process, as well as understand the behavior and needs of their parent.

Why didn't I know? Perspectives from adult children of elderly parents with dementia

“…Findings from this study reinforce that diagnosis is a process for providers as well as older adults and their family members (Kjällman‐Alm et al., ; Samsi et al., ). There is often disconnect between the signs and symptoms of dementia and an individual's observed behavior.…”

“…Family members, including adult children, are often best‐positioned to notice initial warning signs, yet few studies explore the perspective of what it means to be an adult child of a person with dementia (Barca, Thorsen, Engedal, Haugen, & Johannessen, ; Kjällman‐Alm, Norbergh, & Hellzen, ). The purpose of this study was to learn about the experiences of adult children of elderly parents who were ultimately diagnosed with dementia.…”

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

“…, Dupuis , Kjallman‐Alm et al . ) and caregivers describe feeling as though they are helping ‘a living dead person’ (Albinsson & Strang , p. 230). This psychological death is asynchronous with the physical death leading to caregiver confusion, sadness and despair: ‘Sometimes I wish I had some bloody tablets and could put me to sleep’ (Gillies , p. 670).…”

The influence of day care centres for people with dementia on family caregivers: an integrative review of the literature

“…The balance of power in the relationship changes, and this can affect their individual identities (Wadham et al, 2016). Adult children who are family caregivers can experience grief associated with 'losing' a parent at a young age, and have concerns about inheriting the disease (Kjëllmann-Alm, Norbergh & Hellzen, 2013). A family caregiver's experiences of stress and strain can include physical, mental, social and financial aspects Ory et al, 1999), and many also provide round-the-clock care over a long period of time (WHO, 2012).…”